tag:blogger.com,1999:blog-21804657439982602702024-02-07T19:45:18.995-08:00Living In SanityDave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-2180465743998260270.post-74791292184067724872010-07-25T01:06:00.000-07:002010-07-25T02:22:59.092-07:00How to read this BLOGHi there!<br /><br />Welcome to my blog!<br /><br />Presently I am in the process of transferring 4 years of emails/journal entries into posts on this blog. I am starting in 2006 and working my way to the present. The best way to read/follow this blog is to start with the oldest entry first, and work your way forward.<br /><br />For more info on what this blog is about, check out <a href="http://living-in-sanity.blogspot.com/p/introduction-what-this-blog-is-all.html">http://living-in-sanity.blogspot.com/p/introduction-what-this-blog-is-all.html</a><br /><br />I will try to add at least 1 new post a day until I am caught up with the present. After that I will add a new entry whenever I have something to say!<br /><br />Thanks for reading!<br /><br />DaveDave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com0tag:blogger.com,1999:blog-2180465743998260270.post-66816056089839404392008-01-21T22:23:00.000-08:002010-07-31T06:28:34.138-07:00Living with Morgellons<span style="color: rgb(0, 0, 0);font-size:100%;" >Dick,</span><span style="font-size:100%;"><br /><br /></span> <span style="color: rgb(0, 0, 0);font-size:100%;" > Thanks for your phone call.</span><span style="font-size:100%;"><br /><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >You have my permission to discuss my illness with anyone. My only goal at this point is to rid myself of this, by any and all means possible, however that can be accomplished, with or without the government's or the AMA's help. </span><span style="font-size:100%;"><br /><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >fyi, my numerous blood tests all come back clean of everything, including HIV, (I do NOT have HIV) except for indications of poor liver function (which is probably just residual effect of hep A) This is typical of Morgellon's though as it does not show up on standard blood tests. (no reduced white blood cell count or anything else to indicate infection or parasites either. Clean blood tests are the main reason for the common jump to Delusions of Parasites diagnosis, in spite of the other physical evidence. (Skin lesions, fibers on and under the skin, fleshy build up on the scalp, around the eyes, and in the ears, among others) All morgellon's sufferers all report the same psychological symtoms as well (Mental Fog, Anxiety, Fatigue, Depression, Suicidal Ideations). As far as I am aware D.O.P patients do NOT all have the same standardized list of symptoms. Patients who are actually delusional, have a wide range of symptoms, nothing specific or typical.</span><span style="font-size:100%;"><br /><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >----------</span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" class="undefined" >From: <b class="undefined">Dick</b><br />Date: Tue, Jan 22, 2008 at 8:48 AM<br /></span><div style="color: rgb(0, 0, 0);" link="blue" vlink="purple" lang="EN-US"><div><span style="font-size:100%;"><br />Obviously, I am very sorry that you are in this situation and wish you the best, but to some extent you are there because of choices you made.<br /><br /></span><span style="font-size:100%;">My advice to you would have included a healthy measure of religion, but since you live in San Francisco that option is clearly out thanks to your wonderful Sisters of Perpetual Indulgence. San Francisco is the modern day Sodom and Gomorrah – the closest thing to Hell on earth (I have freely offered it up to the military as a logical place to test the first Neutron Bomb). With all that sickness (mental and physical) going around (starting with your mayor and US Congressional representative) small wonder you have trouble developing a positive attitude. You need to get out of there ASAP – Arizona sounds like a nice place to go</span> <p class="MsoNormal"><span style="font-size:100%;">I have an acquaintance who has had similar health problems as you describe. Last I heard, he was able to get back to work (airline steward) although his fellow workers sort of cover for him from time to time. His skin problems have subsided (I think) but it was only after many misdiagnoses and corresponding wrong prescriptions. Last I heard they finally discovered something that worked for him.</span></p> <p class="MsoNormal"><span style="font-size:100%;">BTW, I was surprised that the CDC did not ask about lifestyle. Is this a gay phenomena?</span></p></div></div><span style="color: rgb(0, 0, 0);font-size:100%;" >----------</span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" class="undefined" >From: <b class="undefined">Me</b><br />Date: Tue, Jan 22, 2008 at 9:47 AM<br />To: Dick<br /><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >What choice are you referring to? Being a contributing, taxpaying member of society? (both current taxes and backtaxes (for taxes I owed in 1997 that have now compunded) penalties and interest, has eaten up roughly 70% of my paycheck for the past 7 years) I believe I caught this disease (Chlamydia Pneumonia) at a time that I was working 50-60 hours per week in a job where I had to shake a lot of hands, which led to the unfortunate side affect of catching a lot of colds, flus, and apparently this. I was not sleeping with anyone at the time, not even my monogamous partner, Marco. </span><span style="font-size:100%;"><br /><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >This is clearly not a gay disorder. It affects women and children just as readily (or perhaps MORE readily) as men, gay or otherwise. I said that California was a hotspot, but there are many others, including rural new york, and even a small town in Texas where a high percentage of the residents have contracted the illness. </span><span style="font-size:100%;"><br /></span><p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"><b> To give you an idea of who this affects, here are just a few accounts written by people who have been affected by Morgellons disease that I found on the <a href="http://morgellons.org/" target="_blank">morgellons.org</a> website:</b> </span> </p><p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"><b> Robert, New York</b> </span> </p><p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"> I have heard about your Morgellons Research Foundation from a TV program on CNN. I think my son Robert had the symptoms of Morgellons. </span> </p> <p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"> My son Robert was born December. He moved to Sullivan County, New York State and began his life. He bought an abandoned church in Mountaindale, New York and began his career as an artist and sculptor. He developed Lyme Disease. At that time no one in this area knew much about it and it was sometime before he was treated with intravenous antibiotics. His symptoms disappeared and his health appeared normal. After about a year, his symptoms reappeared and once again he was treated and his symptoms disappeared. Because of the debilitating nature the of Lyme Disease he had to give up his plumbing business. He then began working for a rehabilitation center where there were mostly young adults involved in drugs. After six (6) years he was promoted to Director.</span> </p> <p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"> About this time, he began noticing small particles moving under his skin through his hands and fingers. The particles were forcing themselves through his skin on his nose, fingertips and laterall over his hands. He began to notice the particles in other parts of his body (chest, nose, ears). The pressure of these splinters were extremely painful.He could not perform his duties and was forced to resign his position. He decided to alleviate the pressure by softening his skin. He used many creams, covered his hands with tight plastic surgical gloves but nothing helped. He had biopsies on his skin in the chest area. Thankful all were negative for cancer. He decided to soak in warm pressurized water. He purchased and he installed a Jacuzzi tub in his bathroom. He spent hours in the water and the rushing water pressure softens his skin and literally millions of these splinters came out of his body. He captured some of them with a tweezers and began looking at them through a very professional microscope. He took pictures of the splinters and he put them in his computer. He tried to show them to the doctors but not one would look at the photos. They thought his problems were mental and prescribed anti-depressants to help him. Needless to say, they did not. He was very discouraged. He did not know anyone else with this condition. The splinters were like strings piercing his skin. He thought he would die. </span> </p> <p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"> I do not think it necessary to tell you about the depression and anxiety this caused him and his parents. Robert committed suicide on August 14, 2006 the day we heard of the research foundation. </span> </p> <p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"><b>Cristina, New York</b></span> </p> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">In 2004, I decided to spend the winter in Florida in a rented condo. While there I contracted Morgellons disease. </span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> </span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">At first, I was at a loss to know what was causing all this itching and biting. I asked some friends who were nurses and had lived in Florida for a long time what it could be. They suggested noseeums, a microscopic mite that can enter a house through screens. Some suggested chiggers, fleas, other types of mites, and suggested various topical treatments. Nothing worked. I was convinced I had some type of microscopic mite that came from a home that had a mangy dog and many stray cats. I set bug bombs in the condo on eight occasions. No change. I spread flea powder all over, sprayed Raid, to no avail. I used mite spray. I used Frontline. I used insect repellent, Maalox, rubbing alcohol, hydrogen peroxide, tea tree oil. I tried a variety of topical treatments--little relief. I learned quickly that nothing could be worn twice with washing, and bedding must be changed daily.<br /><br />When I returned home, I inadvertently passed on the disease to the people I cared for the most--my sister, two daughters and a granddaughter.</span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> </span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">The first doctor I saw said it was an allergy. The next doctor gave me Ludane lotion and Kwell. That worked for only a few hours. The next doctor told me to identify the pathogen, and then he would know how to treat me. I turned to the internet for help.</span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> </span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">When I returned home, though I warned my sister and daughter against it, they could not believe it was as serious as I said and they came to visit my apartment on several occasions and contracted the disease.</span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> </span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">I could go about the frantic attempts to get help, the frustrations and rejections encountered when turning to mainstream medical establishment for help, the expense of products and treatments to obtain some kind of control or relief over the symptoms of the disease, the growing isolation from friends and loved one for fear of further spreading the disease, (which happened anyway).</span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> </span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">After a year and a half, and after throwing away many clothes and several pieces of furniture , getting rid of my upholstered car, and other things, I finally felt clean and free of the disease. But I then visited a daughter and granddaughter whose home I had deliberately avoided for fear of spreading the disease to them, and inadvertently I brought it to their home. They contracted the disease and my symptoms returned. It was only at that time that I finally realized I did not have a mysterious mite, but I had Morgellons.</span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> </span> </div> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">Oddly, my daughters' husband and a grandson did not get the disease though they were exposed over the many months (at least they show no symptoms). Only my blood relatives. </span> </div> <span style="color: rgb(0, 0, 0);font-family:Arial;font-size:100%;" > <div> </div> </span> <div style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">This is definitely a contagious disease, but not everyone is susceptible. It is a very difficult disease to eradicate though a few people, over a long period of time, using various methods, seemed to overcome it. I want to be one of those people.<br /></span> </div> <p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"> <b>Carol, New York</b> </span> </p> <p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"> I have Morgellons disease and it has changed who I am and how I live in every way. At one time, I negotiated multi-million dollar contracts. Now I can barely balance a check book. At one time, I was an editor and managed employee communications for a Fortune 100 company. Today, writing a simple statement, such as this one, takes days. Not long ago, I was an active member of my community… president of our middle school PTO, board member of several organizations. I planned and organized large scale events and successful fundraising campaigns. Now I consider it a good day if I'm out of bed by noon. I used to taxi our boys and their friends to scouts, sporting event, movies and other activities. I can no longer drive a car. For many years our home was the gathering place for friends and family in every season. When the Morgellons symptoms began, I felt compelled to limit my exposure to others. I sequestered myself away in fear of passing on this horrific disease. I stopped sleeping with my wonderful husband. I stopped hugging and kissing my beloved children. Having this disease has affected my whole family - all of us - our plans and dreams. The rich, active and full life we as a family once enjoyed disappeared in the void. Years have been utterly lost. We stopped making plans. My children stopped asking if we had any. </span> </p> <p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"> Our eroded finances have changed retirement plans for my hard-working husband and educational opportunities for our children. I planned on going back to work a few years ago when my boys entered middle school. I expected to help pay the tuition for my sons' college education. Last year, my eldest son bypassed his first-choice college and a $40,000 scholarship in favor of helping us by living at home, assuming a student college loan and attending a local college. Last year, my medical expenses (including doctor's fees, lab and pathology tests, prescription drugs, and medically prescribed supplements) exceeded $35,000 of which $16,000 was not covered by our medical insurance. </span></p> <span style="color: rgb(0, 0, 0);font-size:100%;" >Less than a year ago, I had become so desperate and sick I was certain I would not live to see my next birthday. After years and countless frustrating and humiliating doctor visits, I finally got some help. A psychiatrist told me he believed I had a Lyme-like disease. Furthermore, he said he had been contacted by a local dermatologist looking for his take on patients coming to him with Morgellons symptoms. We contacted a Lyme-literate doctor in our area with experience treating Morgellons disease patients. In April 2006, I began treatment and have made substantial progress. We actually celebrated Thanksgiving and Christmas at home this year. </span><p style="color: rgb(0, 0, 0);"><span style="font-size:100%;"><b> Wendy, California </b></span></p> <p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">I have been suffering with Morgellons for about 3 years. I am suffering with the pain, the disfiguring lesions (scarring), the endless itching, the fatigue, the cloudy vision, the fibers, as well as the brain fog. I also experience the tremendous fear that I will soon die as a result of this disease. Coping with these symptoms is mentally crippling as well as physically debilitating.<br /><br />I also fear that this disease may be a contagion, and that I may pass it on to those people that I come in contact with, family, friends, and the public. I have lost my boyfriend because of this. I willingly isolate myself from dating and socializing as I am embarrassed as to how I look and I fear I may infect those that I get in close contact with. I believe that it is my right as a United States Citizen to have this disease taken seriously, studied, and a treatment protocol established. I have also spent time, money, and have had to experiment on my own with medications and supplements as I am desperate. My doctors do nothing, as they need knowledge to base their treatments on, at this time there are none. This disease is not recognized in the medical community. Please help me and everyone who is suffering from this disease. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"><b>Sue, Maryland</b> </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">My first symptom was in the late summer of 1980. I was with child at the time,working in garden and the itching stinging all over hands, lesions shortly to follow on the back of my head. My baby girl was stillborn; no answers for us, autopsy said well formed 39 week baby so we never got a answer. The next year I had my Josh, June, 30, 1982. He was so beautiful, perfect, a gift from God. Also told us he was a healthy baby boy, but, around age 5 the migraines came, shortly after that the seizures, learning difficulties, ADHD, and on and on to the skin problems, being too tired to live a normal life, teeth rotted out, why? Again no reason offered. Then came the brain cancer, the &%$$ got in my child's head.<br /><br />Now we get put off wait, wait, answers will come, but not in time for my child. All that is left is an empty room of dreams and memories of the horror watching our sweet child suffer and die.<br /><br />When will I feel peace, when will I be able to say he didn't die in vain? WHEN THEY FIND THE ANSWERS FOR ALL OF OUR CHILDREN, THAT'S WHEN. They want to live, love, learn, they want to be able to move without pain, they want to feel pretty, spend time with friends, worry parents. Not much, they just want to be KIDS. Really that's all; just normal life, that's all they want, to live.<br /><br />Dear God, please help our children to have a normal life and please hold close the children we've lost to this horror, they only wanted to live and to love. I'm so broken I can't even get my thoughts out the way I need to. I feel like a second grader when I try to type my thoughts. I want my son. I want all the others that have lost a child to wake up and find it's all been a bad dream. I want the parents that have to watch their babies suffer so badly to wake up tomorrow and watch them run and play, live and laugh and love. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"><b> Cynthia, California </b> </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">I consider myself to be one of the lucky ones, I did not suffer for years not knowing what was wrong with my body. Within 4 weeks of visual proof I found Mary M. Leitaos' MRF website and message boards that allowed me to share my story with others that had been through similar symptoms and events. Without these message boards I would have had not one person to discuss this cruel illness with.<br /><br />The unlucky victims of this disease are mothers, who right now, are watching their children lose their childhood. Some children are dead, some are still being misdiagnosed by doctors who refuse to believe.<br /><br />This disease is ahead of its time, way ahead of our doctors.<br /><br />I no longer trust physicians, nor respect them. This disease has destroyed all hope and dreams of the future. I can no longer work, and at times must rely on the kindness of neighbors just to get by day to day. My savings are gone and I was forced to sell my home. I live like a hermit, scared to death I will infect someone else with this nightmare. The disease has disfigured my face and body to the point where I hate my body so much. I can no longer hug a friend, or kiss a lover. When my dog showed signs of this disease I had to let him go.<br /><br />I have attempted suicide when the disease became unbearable, what brought me back, I might never know. When it becomes unbearable again, I will succeed this time. For what sense does life make, when I can no longer be of assistance to others, nor even take care of myself. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"><b> Larry, California </b> </span></p> <span style="color: rgb(0, 0, 0);font-size:100%;" >I am writing to describe my disease of ten years which some are calling Morgellons. This disease has cost me dearly both financially and socially. There are open sores and lesions visible on my face and hands. Other lesions on my scalp, back, legs and arms. I am constantly distracted or outright panicked by intense itching especially on my eyes, ears nose and mouth. I have completely lost my faith in the medical profession as doctors have labeled me delusional and psychiatrists have told that I am not delusional and have no mental disease other than depression and anxiety (treatable) and that I should see a dermatologist. So back and forth wasting money and hope that I might be helped. Now I am ugly, tired and broke. Only an act of God or Congress can persuade and fund the research in the medical community to recognize, investigate and treat this disease.<br /></span><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"><b>Dana, unknown </b> </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">Our family has been fighting this illness for several years now. It began with overwhelming fatigue and a blood test that revealed ANA's, slowly progressing to the full list of symptoms and from me to the rest of my family. I underwent psychiatric testing and the MMPI revealed no psychiatric pathologies, however the IQ test I took revealed a significant decline from an earlier test as a teenager, from 140 to 125. I have been unable to find or afford a physician who will treat me for other than psychiatric issues and asthma and so have placed myself on oxytetracycline intended to treat cattle. This does the bare minimum to keep me upright and functioning, while I continue to have more progressive signs of organ involvement, particularly heart/lungs. I have petechiae arising in scattered patches, shortness of breath that seems to originate AROUND my lungs rather than IN them, unexplained bruising on calves, and episodes of tachycardia, in addition to the common morgellons symptoms. In the last two months I have lost nearly twenty pounds and struggle to maintain my weight at 110 lbs. My vision is affected by floaters that do not go away but slowly increase in size and number, swelling around the eyes that causes blurred or double vision, and photophobia. I wake up everyday with my eyes, face, and neck swollen and feeling very foggy or confused until I have taken enough Ibuprophen to decrease the swelling. I do not know for sure, but it SEEMS like the swelling may be very close to or in the brain, and this is the cause of the 'fogginess.' We are desperate for answers, as if this has an end stage, then I am approaching it. Please use my story in any way necessary to further aid in this matter. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"><b>Jenny, California </b> </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">Morgellon's disease is real. It needs to be studied. My life is normal now, but there was a time when I knew I was dying a slow death and I actually welcomed the end of the suffering I endured for an entire year of my life.<br /><br /> I have suffered greatly from this disease. I am free of it for the most part now, but a year of my life was literally taken away from me while I suffered in misery and pain. I don't know what it is. The black specks seem like they could easily be bacterial such as spores or parasitic or both. The stinging sensations could logically be accounted for by something bacterial. I can say this, though......... My boyfriend and I both had it. He went to his Primary Care Physician and they swabbed one of his sores. We were both covered with these. His result came back as being an "arthropod bite reaction." His doctor said that could mean anything, like that he was simply bitten or that he ate shrimp and was allergic. Seeing as how both of us had these and neither one of us are allergic to seafood of any kind, it's a logical assumption that these possibilities did not really apply to the situation we were dealing with.<br /><br /> I also had a swab taken and was told that the bacteria from the sample was found to be resistant against just about everything with the exception of Cipro in large dosage. So that's what he prescribed for me along with some external medicine.<br /><br /> I can attest that the feeling of Malaise is very extreme. The fatigue is overwhelming. The sting and the inflammatory reaction that is caused by these things is excruciating. Eventually a sufferer will start to feel effects on the nervous system. Doctors make it even more of a living nightmare to the point that people suffering would just rather die. That is literally what the sickness along with how the doctors treat people who are infected does. I was told I had Impetigo week after week until I demanded that someone explain to me how that could even be physically possible to have a never-ending case of Impetigo. Finally, I ended up being diagnosed with Parasitosis. Delusional, that is. The people who I depended on 100% to try to help me turned out to make my life 30X more miserable than it had already become. My hair started coming out in gobs. My beautiful face was hideous, the stinging got worse, my shower scrungies were literally inundated with black and blue specks. All I know, is once I moved out of that apartment, I break out every once in a while and it's never gone away completely. However, it's somewhat manageable now. The attacks are acute, vs. chronic and the condition is no longer completely debilitating to me like it once was. Every six months I self medicate with large doses of Cipro for 1-2 weeks and an anti-parasitic medication that can only be taken 1-2 times yearly, anyway.<br /><br /> Please help to find the cause of this painfully debilitating and depressing disease. Something desperately needs to be done to identify exactly what this is and change needs to be implemented in the medical community as to how people that are truly sick and need medical attention are treated. It's an absolutely inexcusable and horrific ordeal to be put through by the very people you are depending on to help you -- only to be treated like a person having "delusions"<br /><br /> Children and infants have been infected. People literally do lose their sanity in a way. Fatigue and Malaise and Brain Fog and stinging pain and horribly ugly sores with black things and doctors humoring and acting condescendingly like this is all a very sad mental problem that is pitiful and requires antidepressants and a dose of reality, while the infected person is worrying about what the heck is happening physically and mentally and emotionally and dropping out of society due to being exhausted and in pain and looking like a leper and worrying about infecting other people----------It is enough to finally break a person who most likely was used to a normal life of health, work, school, social life and who could never have imagined something so graphic, morbid, scary and surreal happening to them. I pray continually to God to comfort those who are suffering the way I once did and that this nightmarish sickness will be given enough attention that the medical and scientific communities will stop this adamant laziness and do the necessary research needed to identify it and that eventually there will be treatment available to those in need. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"><b>Judith, California</b> </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">My elderly parents and I contracted this disease from a "new puppy" . We thought he had fleas. The vet said that it wasn't fleas, but some kind of mites. He tried everything and couldn't make him well. He was euthanized. While we treated him for mites, we all contracted them. We all have immune deficiency problems, and they literally took over our bodies. We had open lesions that would not heal, and we had crawling sensations all over our bodies. We started having threadlike particles come through our pores, and as they did they stung. We would feel the stinging or biting almost all of the time. I had to take Mom and Dad to urgent care and then to the hospital for help. I went to the hospital in Apple Valley for the second time when I had large, unhealing lesions. The Dr. said he knew how to treat it and prescribed psychotic medicine. He felt it was all in my head even though he could see the lesions. I understand that he probably thought the lesions were results of self-mutilation. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> I am 66 years old, have a college grade point average of 4.0 and will be graduating from college in June with an A.A. in business administration. I also have my Paralegal certificate and will have my Bookkeeping Certificate this April. I am not stupid or paranoid. I have gone from a Primary Care Dr, to a skin specialist, to a dermatologist. No one really knows what this is. My primary care doctor has tried to help me, but no one really knows what to do about this. It is easier for them to say I am psychotic than to take the time to find out what it is and to treat it adequately. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">In the interest of other people I stay away from them so they won't get these. I was not able to go to a Grandson's college graduation, two grandchildren's graduations, the birth of a new Grandchild and two Great Grandchildren. I had to stop going to classes at college and quit teaching bible study at church in the interest of protecting others. One of my granddaughter had leukemia and had a compromised immune system, too. This has been going on for over two years. The medical profession has got to get interested in helping the thousands of people who have this disease. It is painful, isolating, and can be depressing. If I didn't have faith in God, I would have given up at the height of this event. Hope would have disappeared. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"><b> Arlene, California</b> </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> On March 12th, it will have been exactly five years that I have been living with this affliction. The first six months was like living in a Stephen King horror film...and I was the star, surrounded by 'things' biting at me, getting into my skin and producing more of themselves, and coming out of my pores. Having the house fumigated again and again, did nothing to kill them. It finally became impossible to live in my house.<br /><br /> Almost worse than the affliction, was the behavior of the doctors I called on to help. They listened to my story, looked at my rashes, cavalierly gave quick shrift to my samples, and declared me to be delusional, and sometimes worse. . .one university etymologist rudely asked it I saw mosquitoes flying through walls. After six months of a living hell, I finally met a dermatologist who believed me. She tried several methods to rid me of these things which worked temporarily, but the disease returned even more determined. Having given up, she sent me to someone she referred to as a genius, who cures those patients she can't. He was an Oriental Medicine doctor, a Dutch Jew, who did his 'oriental' thing and made a formula which remarkably stopped the 'comings and goings' of these 'things' in four days.<br /><br /> I have recently learned of others--through friends and neighbors aware of my plight--who are suffering. One actress was unable to attend the Golden Globe, for which she and her husband had invitations, due to the terrible rashes on her face and body. I know about those. They are nothing short of horrendous. The itch is unbearable, and the lack of being able to control things in one's own body can drive a person crazy...in which case, the smug, arrogant and insensitive doctors would ultimately be right...we'd end up crazy..or their word, "delusional." </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> <b>Helen, New York </b> </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> I am suffering terribly at this time as I am not able to be comfortable within my own skin, literally, and my body. My family and I reside on Long Island, New York . One yr. ago from this past summer the soles of my feet begin to itch terribly, non-stop each and every night. As fall arrived, I begin to feel something different also quite often. A 'creepy crawler" feeling was occurring under the skin of the soles of my feet...and my scalp, usually at the same time. It was something that I had never felt before. Worried, I made an appt. to see a dermatologist. My visit was somewhat strange. I was told from across the rm. very quickly by the doctor that my feet had psoriasis, and that as far as the thinning of my hair I needed to see an endocrinologist, My "creepy crawler" comment basically seemed to be ignored. I was given a script for psoriasis for my feet, which did nothing at all for me. Dissatisfied with this visit of 5 mins. or so, I sought another dermatologist. With the same complaints given, I was told I had dry feet, a normal amt. of hair, and that the 'crawler' feeling most likely was from sensitive nerve endings. I mentioned that I had cats, and that I felt like maybe I had some sort of mites causing the problem. She said to try moisturizing for my feet, and gave me nothing for my head symptoms, and said to come back if needed. I needed to go back. as my symptoms only progressed. I practically forced a script for permithirin creme from the doctor, went home and did the treatment.[can't use above the neck she said] so I was "over the counter" for that as she had told me. I used lice shampoo, and the permithirin, to no avail. I sort of gave up for a bit, not knowing what to do next, as symptoms persisted, and now I had some 'nodules' under the skin of my scalp too. Spring arrived, and systemically I was feeling "not well', and VERY fatigued. I begin to get some itchy 'bite marks' now on various parts of my body, that looked like sores, and that sometimes gave a biting feeling from under my skin. I went back to the dermatologist, who NOW believed I might have a parasite of some sort, and she gave me ivermectin. It didn't help me. Parasitic testing came up negative, as did a biopsy punch done into one of the lesions on the nape of my neck. I was told by this dermatologist that she could only help check for skin infection and give me topicals for itching for my skin, and that I should go to an infectious disease doctor for my now wt.loss of 30 lbs, gastrointestinal complaints, sinus problems, edema at times, and the now multiple lesions on my body that bite 'from under' with a quick sting, itched, and burned at times. Infectious Disease, however declined to see me since all prior tests were negative (blood work, stool samples, etc). I went back to my primary doctor who blatantly looked me in the eye and coldly stated "I can't help you"'. As I am trying to move this along here. I will tell you that since the Spring I had realized (from my trying to research and diagnose this problem on my own since symptoms were rapidly progressing without any beneficial help from doctors I'd seen thus far), that I fit Morgellons symptoms. Even my experience with doctors matched incredibly others with these symptoms. I actually have asked my dermatologist fairly recently, as this horrific syndrome has become more media exposed. if she knows of it , and she said she knew of what I spoke, and said that unfortunately there is no specific protocol of how to treat it since symptoms of sufferers are of a commonality, but within that commonality the symptoms are widely varied, according to the CDC, and she added, IF this does indeed exist. SOOOooo,to bring this letter current, I would like to say that I am on my own to try to do what I can to tolerate the following: painful sores that sometimes have fibers within them that seem to move within and at times OUT of these lesions, Hair that may BE fiber, nodules with extremely painful sores present on my scalp, and to withstand a never ending battle by my own body. My hair is now extremely thin, and I am not sure if it even is hair any longer as it now has bizarre characteristics since my scalp symptoms have worsened drastically. I am at a loss as to what to do from here...other than to try antibiotics and de-wormers that I must attain myself. The presence of this inescapable nightmare (Morgellons disease) consumes and destructs my life now as it tortures me each and every day and night with it's horrific dermal and systemic existence in my body. The three other family members in my household also are suffering, as half way through the progression of my symptoms, they also begin to present with similar symptoms. Each day we pray that SOMETHING WILL BE DONE to help us and others to BE RID OF THIS so as to gain our health, peace of mind and body, and our lives back again. Morgellons disease has taken these things away by the immense, inhumane suffering it causes as it flourishes, unchecked, within us. A cure MUST be sought and found for our sake here in New York, the sake of other sufferers everywhere, and all mankind, IMMEDIATELY!!! PLEASE!!! </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"><b> Artie, New York </b> </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> My name is Artie, I'm 47 and grew up and live in Queens, NY. I own a pest control business and up until the summer of 2004 all was great, really great. Then the classic symptoms started, slow and local at first, mainly a crawling sensation around my face. I thought I had caught scabies. Little did I know, it was the end of my old peaceful life; today I exist. With limited space to write I'll get to the damage done. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> For almost 2 and 3/4 LONG years this disease has spread throughout my entire body. I see a therapist and must take sleeping medication or I lay in agony. Anxiety runs my life. My hands are the most "infected" and I wake EACH day to hands so painful it feels as if they are in boiling water. I run to the sink and cool water eases the pain after 10 minutes. I have lost all my interests and dreams and have no hope of finding another girlfriend (I'm widowed). My business is sinking fast and bills are killing me. I feel bites, have black, green and red fibers coming up from small welts that come from below. I've been to 27 doctors, dermatologists, travel doctors, ER's and 6 NYC hospitals including NY Skin and Cancer. The two doctors actually got mad for "wasting" their time. I walked out and wanted to step in front of a truck and almost did. I have lost my friends and my family thinks I'm crazy. My own Mother "doesn't want to hear it." I spend about $40 a week on laundry; can't wear anything twice or the bites start. Clean sheets every other night and I shower twice a day and I still have a "fuzzy" feeling. I can't think straight; I forget everything. I've gone through 9 "pocket microscopes" and have tried to figure what's happening to me but with ignorant pompous doctors it's probably going to be "discovered" after some high-profile people mandate a study and hopefully a cure. I exist a day at a time and as my self-created business slowly dies I feel like I'm going the same way. Cure or not, I will never again think of doctors as "gifted people" for they turned their backs and left me in a dark nightmare totally hopeless. YES folks, this disease is very nasty, spreading fast and it may be knocking on your door very soon for nobody is safe and due to the ignorance of the medical community, a cure seems far off. Thank you. </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> <b> Judy, New York</b> </span></p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;">In 1990 while living in Aromas, CA, near San Jose, I contracted a disease different from any previous condition, which I have never gotten rid of, and which has never been diagnosed despite numerous consultations with physicians and specialists over the years. For the first 12 years, the disease was characterized by burning, stinging and bleeding of my nasal passages and sinuses accompanied by constantly feeling sick, night sweats, aching joints and an almost overwhelming "brain fog" and mental and physical weakness.<span> </span>Exhaustion doesn't describe the demoralizing and incapacitating nature of the feeling. I pretty much just existed for a decade of my life. My situation is complicated by IgA, IgG2 (and possibly IgE) deficiencies. Whenever I catch an upper respiratory infection my condition progresses to bacterial overgrowth, at which point I can convince my physicians to prescribe Biaxin (the only oral antibiotic I have found effective). This pretty much alleviates my symptoms, which return when the course of Biaxin is finished. I discussed with various physicians the possibility of an antibiotic rinse that could be used all the time, but was told that none existed. In 2002 while living in Rochester, NY an ENT here suggested rinsing with a Bactroban solution. Twice-daily rinses have improved my quality of life tremendously. Although I still have burning and bleeding of my nasal passages and feel sick when not on Biaxin, I am much better able to function. After using Bactroban for 2 years and still having cat scans showing acute sinus disease, I had my second sinus surgery. The surgeon's evaluation after the image-guided procedure was that my lower sinuses were essentially finally clear, but that the sinus and nasal epidermis was inflamed and bled easily wherever touched. And that he did not know the cause or treatment for this (painful) situation. I suffer from much more frequent and severe respiratory infections than before I contracted this unidentified condition, and was recently diagnosed with moderate pulmonary obstructive disease and bronchiectasis (a condition rare in this country except in people with cystic fibrosis or suffering from poverty and lack of medical care.) The pulmonologist, like most physicians I have seen, was scornful of my assertion that I have an ongoing condition, since it is of unknown cause and my white blood cell count and sed rate are usually in the normal range. </span> </p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> I am a plant pathologist with a background in microbiology and access to a microscope. Over the years I have attempted to identify something microscopically in my nasal secretions which might explain my condition, and have routinely found blue, clear, and red non-septate fibers and round brown or black structures (and Alternaria spores). (And have not been able to convince any physician to examine this material!). An overheard conversation in 2006 regarding a non-healing lesion from which blue fibers emerged lead me to investigate the description of Morgellons disease and I feel that I do have some form of this disease. </span> </p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> <b>Laurie, New York </b> </span> </p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> I am a professional woman who has continued to work and yet, suffered for the last 10 years with what I KNOW is Morgellons Disease. This has NOT been easy. I have changed doctors, been to 5 dermatologists and finally thought I may be crazy as they told me I was. I was told by one dermatologist to see a psychiatrist and by another that he had no idea what I had. The scars, lesions, and sores that don't heal for a very long time are real. Doctors, family, friends, employers and general people see them. I have brought samples of fibers from my skin and hair in to be examined. I have had a "punch biopsy" done and guess what - a hairlike fiber was the culprit. I have copied Morgellons material and given it to the doctors and they act like they never read it or paid any real attention to the symptoms, etc. I have wasted money and time to be told I am imagining what is TRULY happening. A co-worker of mine came to work one day and said he saw something on CNN about a new disease - described Morgellons. I stood and said nothing - I don't want to be deemed crazy by persons who respect me. I can tell you more of the suffering and pain - the embarrassment of sores and continual spots and the tiredness that I feel. The best thing I ever found was the Morgellon's Foundation - my daughter in Fla. found it by accident - she had heard my descriptions via phone of what was happening to me and called me with the website. Thank God she believed me and knew I wasn't crazy. Why does the medical field deny this horrible disease?<span> </span> </span> </p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> Please pay attention because it exists and someone in your family may contract it next. It is not a disease you can discuss with friends, employers, or doctors. You go it alone and hope your family doesn't have to endure what you do. You often don't sleep, you often can't think - you try your own remedies - I am willing to go public if I feel I have backing. I cannot afford to have people think I am crazy in my profession.<span> </span> </span> </p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> <span> Thank you for the opportunity to express myself. And, by the way, I have donated to Okalahoma Research to help with this disease - please know it is real. </span> </span> </p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> <span> <b>Mary, New York </b> </span> </span> </p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> <span> I wouldn't wish this disease on my worst enemy. For three years I have dealt with a condition that has made my life very difficult. My skin has lesions that never go away including on my face, back, arms and legs. I have trouble sleeping at night and during the work day trying not to touch my skin to dig out what's moving underneath. There is a constant sense of crawling and biting all over my body and things coming out of my skin. I initially thought it was a reaction to being bit by various bugs, but spring came and went many times over and have had my apartment exterminated numerous times and I still have the problem. I sought the advice of dermatologist after dermatologist with numerous diagnoses. These ranged from scabies, to arthropod reaction, hives, hypersensitive skin and that I had a psychological condition.<br /><br /> Imagine trying to find answers and being treated like I am a delusional nut as opposed to an educated person who worked in healthcare for over fifteen years. I have lost all respect for the dermatology profession. I went to other specialists too, infectious disease, allergists who all told me to go back to see a dermatologist. One doctor began to refuse to do a biopsy because "my patients don't tell me what to do". I told him my gynecologist, cardiologist and internal medicine all told me to come and get a four punch biopsy. I am still suffering and with few answers.<br /><br /> I found out about the Morgellons Foundation through the New York City Health Department Epidemiology Department. Since New York has been experiencing a severe bedbug problem of which I fell victim to, I thought there had to be others complaining about never-ending skin problems. When I explained my symptoms the staff there said they had just heard about this condition and sent me an article. After reading about Morgellons I said that's me and then sought more information and registered with the foundation. They recommended a physician who listened, looked at the photos I had taken over time of my skin, ran numerous blood work which indicated some other underlying infections and believes that Morgellons is a real disease. Morgellons is real, we are not delusional. I just want to be healthy again and not have my skin crawling. Please help us find the cause and the cure for this disease. It is only with funds and a commitment of people dedicated to this cause that the suffering we have endured by the condition itself and the medical community will end. Thank you. </span> </span> </p><p style="color: rgb(0, 0, 0);"> <span style="font-size:100%;"> <span> <b> Maureen, South Carolina </b>(Maureen lost custody of her son after he began exhibiting symptoms of Morgellons.)</span> </span> </p> <span style="color: rgb(0, 0, 0);font-size:100%;" > <span> I have finally felt months of no symptoms. I have finally found a compassionate doctor that cannot fix Morgellons, but he doesn't think I'm a nut. He saw the fiber in my hand after I said hello to him for the first time.<br /><br /> My son was ripped from me and sent to my parents while I was in hell with this Morgellons. Alone I was bombarded with doctors calling me crazy, the Department of Social Services claiming I harmed my son.<br /><br /> I made sure to get a court appointed attorney while I did everything social services asked me to do (drug tests, parenting classes, anger management, the whole works ). All testing came back that I was ok (I knew I was) and found a compassionate doctor who gave me antibiotics and a kind smile. This war for my family began in August, but my hell with Morgellons has been two years going to date.<br /><br /> The most horrifying thing in all this is that my son, now 13 years old, is showing many signs of Morgellons: the sores, the itching, fatigue to the point he would fall asleep in class, and his teeth rotting out of his head ...now that was blamed on me and neglect was on the Judges lips when she got a dental report. As soon as my son was taken, I began to do whatever it took to get better.<br /><br /> I kept doing what I had learned from other Morgellons people to get me better. I became so well that when it came time to go to court. I looked so good that three people asked me if I was an attorney. I could walk for the first time in years without a cane, my thinking and speech were normal and I was beyond better. Not cured, but this was soo sweet!<br /><br /> Phew.. I am the old gal again but the court visit was beyond heart wrenching. I used to be so frail I could hardly walk, who used to look like a cancer survivor with leprosy, who was loosing weight faster than an anorexic could and was barely 118 pounds and dying in August, was now a 140 pound, knockout looks back, and a mind that was sharper than a tack, even the attorney was stunned at the transformation (Its not just the antibiotic -- I have changed everything about me here.. the products I use to clean with no chemicals the supplements and more and I am on a fixed income so it wasn't expensive.<br /><br /> After she started, the Judge said to me that I was doing a great job taking care of me but the dental report showed neglect and this is all I stayed to hear. I knew my son was not coming home the Judge had no idea what I used to look like, so she could not see the transformation and I knew my son was not coming home.<br /><br /> There are many people in my life that know I got better and the horrific thing is my son has this but there is no one who can DX morgellons in him at this time. I have hollard till the cows came home late for dinner about my son. I know I could get him to my doctor perhaps and of course I would hope he'd miss out on the hellish nightmare I and many others have lived through, but at this writing my family is torn and this mother's heart feels more sorrow than one could imagine.<br /><br /> This is inhumane folks, this is why we all need to pull together and support the Morgellons research foundation to get this in a respectable compassionate hand and under a microscope to end these horror movies.<br /><br /> I have spoken to many warm smart people in my journey and will many more. Some gave up, some have lived in a car so infested, a fire ant hill would feel like the plaza hotel. The heart wrenching terror that Morgellons causes is nothing we signed up for, but we have it!</span> <p> <b> Lynne, California</b> </p><p> After a tick bit me in March of 2006, I exhibited many symptoms of Lyme disease and was treated by my primary care physician for several months with very strong antibiotics. Shortly thereafter, I developed classic symptoms of Morgellons disease that continue to totally diminished my quality of life. After biopsies of skin lesions on the back of my neck, my dermatologist's diagnosis was Delusional Parasitosis. He referred me to a psychiatrist for treatment for paranoia. An infectious disease physician for Monterey County examined the fiber-like filaments ("lint balls") and seed-like black granules that exit from the non-healing lesions and determined I was not delusional.<span> </span>Although ignorant about Morgellons, he prescribed a low dose of daily antibiotics that has helped the severity of many debilitating symptoms. Still. I am left disabled by nearly total loss of vision in one eye, extreme pain in most joints, slowed mental processing, and overwhelming fatigue. I am hopeful you will be able to bring the increasingly widespread existence of Morgellons disease to the attention of the medical "powers that be".</p></span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >----------</span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" class="undefined" >From: <b class="undefined">Dick</b><br />Date: Tue, Jan 22, 2008 at 10:07 PM<br />To: Me</span><span style="font-size:100%;"><br /></span> <div style="color: rgb(0, 0, 0);" link="blue" vlink="purple" lang="EN-US"> <div> <p class="MsoNormal"><span style="font-size:100%;">I wasn’t referring to your sexual practices, I was thinking about attitude and the fact that you apparently allowed yourself to be caught without health insurance. I don’t want to make things worse by bringing up old history, but suffice to say you are/were very stubborn. I was probably one of your closest friends, but I had no ability to influence you in any way. Your, in your face attitude (not with me) has to lead to the phrase “I did it My Way” on your grave marker (60 years from now).<span style="color: rgb(0, 0, 0);font-size:11pt;" ></span></span></p> <p class="MsoNormal"><span style="font-size:100%;">If your parents won’t help, you are the only one that can resolve the situation. You have to somehow summon the strength to overcome or live with it until the medical community finds a cure hopefully in less time than they have taken to neutralize HIV. Again, I can’t believe your living conditions are conducive to healthy living and attitude. I have learned the hard way that you can’t depend on friends and family. I am fortunate that I have Cris who remains loyal and cares even with my shortcomings.</span></p> <p class="MsoNormal"><span style="font-size:100%;">Dick<br /></span></p><span style="font-size:100%;">----------<br /></span></div></div><span style="color: rgb(0, 0, 0);font-size:100%;" class="undefined" >From: <b class="undefined">Me</b><br />Date: Tue, Jan 22, 2008 at 11:10 PM<br />To: Dick<br /></span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >The sad truth is that I was fully insured when I caught this. I only later became uninsured as the initial symptoms began to affect me and play a role in affecting my ability to perform my job. To this date, even if I had been CORRECTLY diagnosed with what I have, based on my symptoms (chronic fatigue, anxiety, depression) bearing in mind that there is still no official method for diagnosing morgellons, nor is there an official treatment, NONE of it would be paid for by a health insurance company, nor would disability be approved.</span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" ><br />d</span><span style="font-size:100%;"><br /></span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >----------</span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" class="undefined" >From: <b class="undefined">Dick</b> <span dir="ltr"><dicksteensma@embarqmail.com></dicksteensma@embarqmail.com></span><br />Date: Wed, Jan 23, 2008 at 9:33 PM<hybridadvice@gmail.com><br /><br /></hybridadvice@gmail.com></span> <span style="font-size:100%;">Judging by your latest phone call, it sounds like a cardboard boxes under the freeway would be a major step up from your present living conditions if the freeway was in any place other than God forsaken San Francisco.<br /><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >----------</span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" class="undefined" >From: <span style="font-weight: bold;">Me</span><b class="undefined"></b> <span dir="ltr"><hybridadvice@gmail.com></hybridadvice@gmail.com></span><br />Date: Wed, Jan 23, 2008 at 9:39 PM<br />To: Dick<dicksteensma@embarqmail.com><br /></dicksteensma@embarqmail.com></span><span style="font-size:100%;"><br /></span><span style="color: rgb(0, 0, 0);font-size:100%;" >San Francisco might as well be Baghdad for as often as I see it. I rarely find cause to leave my basement dwellings anymore. I am thankful that I have at least that, although the conditions here are far from pleasant.<br /><br />d<br /></span>Dave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com1tag:blogger.com,1999:blog-2180465743998260270.post-31838090331517786042007-10-30T08:00:00.000-07:002010-07-31T14:45:49.143-07:00Science question/theoryDear Dr. Buckner:<br /><br /><div class="gmail_quote"> <div> </div> <div>Please forgive the usage of this address (listed on the morgellons.org website as a link for physician inquiries) as I myself am not a Doctor, rather, (I believe) a sufferer of this disease/syndrome. At present I can think of no more appropriate place to pose my question and present my theory to you.<br /><br /></div> <div> </div> <div>After having done somewhat extensive research online myself, I am drawn to the theory that Morgellon's Syndrome is actually a "symptom" if you will, of a "hidden" possibly antibiotic resistant bacterial infection, such as Chlamydia Pneumonia. (as theorized on the <a href="http://morgellonstreatmentsteps.com/" target="_blank">morgellonstreatmentsteps.com</a> website)<br /><br /></div> <div> </div> <div>Pursuant to that idea, I would like to pose the additional theory that the "Morgellon's parasite", if indeed there is such a thing, could actually be present in the body of the Morgellon's sufferer due to the presence of bacteria inside the cells? (Chlamydia Pneumonia specifically) Could these "parasites" simply be feeding on any bacteria present, internally and externally?<br /><br /></div> <div> </div> <div>My concern is that by treating the symptom, ie. attempting to eliminate this parasite from the body (colliodal silver, salt diet, peroxide/salt baths, etc.), rather than the cause, could this not possibly have the unintended long term effect of strengthening the underlying bacterial infection, and thus do more harm than good?<br /><br /></div> <div> </div> <div>Do you feel this idea has credence or has your research already disproved this theory or led you in other directions?<br /><br /></div> <div> </div> <div>Sincerely,<br /><br /></div> <div> </div><span style="color: rgb(136, 136, 136);"> <div>David Franklin</div> </span><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Douglas Buckner</b> <span dir="ltr"><science@morgellons.org></science@morgellons.org></span><br />Date: Wed, Oct 31, 2007 at 7:34 AM<br /></span></span><br />Thank you for your email. We have no idea what causes Morgellons.<br />Your theory is as valid as anyones. Sometimes, bacteria and parasites<br />work together. For example, with Microfilia, patients are treated<br />with both antibiotics for the bacteria that the parasite lives on plus<br />antiparasitics.<br /><br />We need research to answer all of the questions surrounding this<br />disease. I hope that you will consider making a donation.<br /><br />Thanks<br />Douglas Buckner<br /><br />Associate Director<br />Morgellons Research Foundation<br /><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">David Franklin</b> <span dir="ltr"><hybridadvice@gmail.com></hybridadvice@gmail.com></span><br />Date: Sat, Nov 3, 2007 at 5:16 AM<br /><br />To: Friends, family and colleagues</span></span><br /><br /><div> </div> <div>I have forwarded the response (above) that I got back from the Morgellon's Research Foundation in case you are interested in reading it.<br /><br /></div> <div> </div> <div>I am very glad that Dr. Buckner was able to take the time to respond. (most Doctors I have emailed thus far, seeking help and/or information about morgellons have not bothered to respond, and the ones I have been to see, none of whom had even HEARD of Morgellons, have all misdiagnosed me, often as delusional) I continue to be discouraged however, by the complete lack of any kind of helpful information regarding what I should do to remedy my steadily worsening condition, even from a source like this that professes to be an authority in the area of Morgellons.<br /><br /></div> <div> </div> <div>After all my efforts, I am still at square 1, having accomplished nothing whatsoever.<br /><br /></div> <div> </div> <div>Best regards,</div> <div> </div> <div>David Franklin</div><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">S.B.</b><span dir="ltr"></span><br />Date: Sat, Nov 3, 2007 at 6:09 AM<br /></span></span><br /><div style="word-wrap: break-word;"> David,<div><br /></div><div>It is a fascinating, out of the box, theory. It seems to me though, that step one is going to have to be proving that the disease exists in the minds of the skeptical. Has anyone done genetic or molecular testing on the fibers to ascertain their content and origin? It would occur to me to start looking at other known organisms that produce fibers as a byproduct of their existence, i.e., spiders, silkworms, and so forth. And then to posit the existence of microbial <wbr>relative capable of doing the same. Has antibiotics been successful in treating or curing any known instance of Morgellon's? If not, it would seem more likely a virus, in which case we'd be back to step one. (As far as I know virus don't produce byproduct.) I suspect the research keeps you engaged and makes you feel like you are making progress; keep it up and don't get discouraged. </div><div><br /></div><div>S<br /><br />P.S. Did you get the CDs I sent?<br /></div></div><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">David Franklin</b> <span dir="ltr"><hybridadvice@gmail.com></hybridadvice@gmail.com></span><br />Date: Sat, Nov 3, 2007 at 7:00 AM<br />To: S.B.<br /></span></span><br /><div>Hi S,</div> <div> </div> <div>I've missed our chats. I had meant to thank you for the cds on several occasions, but i lose my train of thought so easily it makes it challenging to complete such a goal. (Thank you!)<br /><br /></div> <div> </div>Yes, my theory is based on the findings outlined on this website: <div> </div> <div><a href="https://www.morgellonstreatmentsteps.com/Morgellons_Medical_informat.html" target="_blank">https://www.<wbr>morgellonstreatmentsteps.com/<wbr>Morgellons_Medical_informat.<wbr>html</a><br /><br /></div> <div> </div> <div>Apparently morgellons symptoms dissipate after a heavy regimen of antibiotics targeted towards eradicating the difficult to detect, and even more difficult to defeat, "Chlamydia Pneumonia".<br /><br />I sure would love to get on some of those antibiotics, but have thus far been unsuccessful in finding a morgellons literate doctor that will see me without charging a hefty fee up front. (as I have no money to pay them for their services)<br /><br /></div> <div> </div><span style="color: rgb(136, 136, 136);"> <div>d</div></span><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">S.B.</b><span dir="ltr"></span><br />Date: Sat, Nov 3, 2007 at 9:11 AM<br /></span></span><br /><div style="word-wrap: break-word;"> Aren't your parents in Arizona? Have them run down to Mexico. You can buy antibiotics over the counter down there. (It is possible to do that in FREE countries.)<div><br /></div><span style="color: rgb(136, 136, 136);"><div>--S. </div></span></div><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Me</b><span dir="ltr"></span><br />Date: Sat, Nov 3, 2007 at 9:30 AM<br />To: S.B.<br /></span></span><br /><div>An interesting idea. Thanks for the suggestion. Are ALL antibiotics available without prescription? it would probably be easier for me to make it down to Tijuana though, than for them to head below the border themselves. (they are very busy, and it is still a 5 hour drive from Phoenix to Mexico)<br /><br /></div> <div> </div> <div>It also occurs to me that my father lives in Las Cruces, NM which is less than 2 hours from Mexico, AND his job takes him all over the region.<br /><br /></div> <div> </div> <div>Then there is the issue of money, of which I have none (nor does my father presently), but still it is an idea to pursue. I wonder how cheap meds are in Mexico?<br /><br /></div>----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">S.B.</b><span dir="ltr"></span><br />Date: Sat, Nov 3, 2007 at 11:11 AM<br /></span></span><br /><div style="word-wrap: break-word;"> Meds are pretty cheap. As for which ones are available over the counter, and how easy it is to get them back over the border, I don't know. Also I suppose there is the issue the quality control. But check it out. I know on the ship that people claimed they would stock up on antibiotics when they were in Cozumel. I never bought any myself, so this is just second hand (rumor I suppose).<div><br /></div><div><span style="color: rgb(136, 136, 136);">--S.</span></div></div><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: (The site owner of morgellonstreatmentsteps.com)<br />Date: Sat, Nov 3, 2007 at 12:55 PM<br /></span></span><br /><div style="font-family:arial;"><span style="font-size:100%;">Hi David,<br /><br /></span></div> <div style="font-family:arial;"><span style="font-size:100%;">They are trying to get closer to the answers. Here are 2 areas they are focusing on:<br /><br /></span></div> <div style="font-family:arial;"> </div> <div style="font-family:arial;"><span style="font-size:100%;">1. actinomycoses and nocardiosis </span></div> <div style="font-family:arial;"><a href="http://web.indstate.edu/thcme/micro/actncard.html" target="_blank"><span style="font-size:100%;">http://web.indstate.edu/thcme/<wbr>micro/actncard.html</span></a><span style="font-size:100%;"> </span></div> <div style="font-family:arial;"><span style="font-size:100%;"><a href="http://www.nlm.nih.gov/medlineplus/ency/article/000599.htm" target="_blank">http://www.nlm.nih.gov/<wbr>medlineplus/ency/article/<wbr>000599.htm</a></span></div> <div style="font-family:arial;"><span style="font-size:100%;"><a href="http://www.emedicine.com/MED/topic31.htm" target="_blank">http://www.emedicine.com/MED/<wbr>topic31.htm</a><br /><br /></span></div> <div style="font-family:arial;"> </div> <div style="font-family:arial;"><span style="font-size:100%;">2. microfilaria</span></div> <div style="font-family:arial;"><span style="font-size:100%;"><a href="http://en.wikipedia.org/wiki/Filariasis" target="_blank">http://en.wikipedia.org/wiki/<wbr>Filariasis</a></span></div> <div style="font-family:arial;"><span style="font-size:100%;"><a href="http://www.filariasis.org/resources/microfilaria.htm" target="_blank">http://www.filariasis.org/<wbr>resources/microfilaria.htm</a></span></div> <div style="font-family: arial;"><span style="font-size:100%;"><a href="http://www.marvistavet.com/html/body_heartworm_treatment.html" target="_blank">http://www.marvistavet.com/<wbr>html/body_heartworm_treatment.<wbr>html</a></span></div> <div style="font-family: arial;"><span style="font-size:100%;"><a href="http://library.med.utah.edu/WebPath/INFEHTML/INFEC041.html" target="_blank">http://library.med.utah.edu/<wbr>WebPath/INFEHTML/INFEC041.html</a><br /><br /></span></div> <div style="font-family: arial;"><span style="font-size:100%;"><span style="font-size:12pt;"></span></span> </div> <div face="arial"><span style="font-size:100%;">Regarding the antibiotic, antifungal, antiparasitic protocol...<br /><br /></span></div> <div face="arial"><span style="font-size:100%;">At this point it is not certain whether the meds are killing the actual Morgellons organisms themselves or possibly the pathogens (bacteria, fungi, etc) that may be attracting the Morgellons organisms to a person's body in the first place...this attraction might be due to the pathogens being a potential source of food, reproduction, or who knows what else.<br /><br /></span></div> <div face="arial"> </div> <div face="arial"><span style="font-size:100%;">The treatement method outlined in the Vanderbilt protocol targets the underlying infections (chlamydia, babesia, borrelia, etc). Many people have reported that once they get these infections under control, their Morgellons symptoms also resolve. It can take years of continual oral medication treatment before adequate results are achieved. Some individuals take 3-5 years of continual oral treatment before their symptoms resolve.<br /><br /></span></div> <div style="font-family: arial;"> </div> <div style="font-family:georgia;"><span style="font-size:100%;">There are individuals who have searched the internet and found ways to obtain medications from pharmacy sites and veterinarian sites. However, it is not recommended that people self medicate. It is very important to obtain adequate lab testing and monitoring from a healthcare provider.<br /><br /></span></div> <div face="georgia"> </div> <div style="font-family: georgia;"><span style="font-size:100%;">You will find a list of doctors below who have been helping patients with Morgellons symptom<br /><br /><span style="font-size:85%;"><span style="font-weight: bold;"></span></span></span><span style="font-size:85%;"><b><u>UNITED STATES:</u></b><br /><br /><u>Arizona:</u><br /><br />Stephen Fry, MD<br />15720 N Greenway Hayden Loop<br />Scottsdale, AZ 85260<br />480-991-4655<br />Family Practice<br />http://www.ucomparehealthcare.com/drs/arizona/general_practice/Fry_Stephen.html<br />http://www.yelp.com/biz/tzNKOYkJ9vpTGygEdX_Vig<br /><br />Amin, Omar, M.D.<br />Tempe, Arizona<br />http://parasitetesting.com<br />email: omaramin@aol.com<br />480 767-2522<br /><br /><u>California:</u><br /><br />Gruenn, Hans M.D.<br />2211 Corinth Ave. #204<br />Los Angeles, CA 90064<br />Phone: 310-966-9194<br />http://www.drgruenn.com/index.asp?page=aboutdr.gruenn<br />Email: manager@drgruenn.com<br /><br />Harris, Steven J. M.D.<br />Family practice<br />Board Member of California Lyme Disease Assoc (CALDA).<br />200 Providence Mine Rd, Suite 110<br />Nevada City, CA 95959<br />530-470-9184<br /><br />Dr. W. John Martin, M.D., Ph.D.<br />Burbank, CA<br />http://www.24-7pressrelease.com/view_press_release.php?rID=23911&tf7sid=6f8a60b46a4a67391296ce67de6c68bb<br />http://www.s3support.com/ProgressiveMedicine.pdf<br />email - s3support@mail.com<br /><br />Savely, Virginia (Ginger) R.N., F.N.P.C.<br />TBD Medical Associates<br />450 Sutter Street Suite 1504<br />San Francisco, CA 94108<br />lymesf@gmail.com<br /><br />Spencer, Edward M.D. (Neurology)<br />4 Ashley Ct.<br />Novato, CA 94945<br />Office - 707 763 6854<br />Or<br />47 Maria Dr., Ste 811 B<br />Petaluma CA 94954<br />Cell - 415 250 1835<br />edspencer3000@comcast.net<br />edspencer3000@mindspring.com<br />(Concerned about many conspiracy issues)<br /><br />Stricker, Raphael B. M.D. (member of MRF)<br />Union Square Medical Associates<br />450 Sutter Street Suite 1504<br />San Francisco, CA 94108<br />Phone: (415) 399-1035<br />Fax: (415) 399-1057<br /><br />Yang, Theresa, M.D., FAAFP<br />10201 Mission Gorge Road, Suite A<br />Santee, CA 92071<br />(619) 596-4963<br />http://www.dyfc.org/yangaddress.htm<br />(Santee CA is in San Diego’s east county)<br /><br />Kurt N. Woeller, D.O.<br />Tracy Tranchitella, N.D.<br />http://www.mystillpoint.com/index.html<br />(951) 693-2267 or info@mystillpoint.com<br />32605 Highway-79South,<br />Suite 201<br />Temecula, CA. 92592<br />Phone: (951) 693-2267<br />Fax: (951) 693-2268<br /><br />Dr. Rick Bierman L.AC<br />625 Arlington Circle<br />Novato, CA 94947<br />415-302-4397<br />accudoc1@comcast.net<br />rickb@healthfreedomsolutions.com<br />http://healthfreedomsolutions.com/lymedisease.htm#proto<br /><u><br />Colorado:</u><br /><br />Keith Bodrero, DO and Mindy Goodwin, PAC<br />5780 North Carefree Circle<br />Colorado Springs, CO<br />719-550-9100<br />Family Practice<br />Note: Dr. Bodrero and Mindy Goodwin, his PA were both trained by Dr.<br />Harvey on ways to treat Morgellons disease. Mindy was a PA in Dr.<br />Harvey's office for 2 years prior to the office closing. Mindy is very<br />familiar with successful ways to treat Morgellons patients. Both<br />individuals will be in contact with Dr. Harvey if they need his<br />expertise. You can contact them to see if they are accepting new<br />patients.<br />http://www.healthgrades.com/doctors-directory/profiles-md/Dr-Keith-Bodrero-DO-47EA7DD3<br /><u><br />Connecticut:</u><br /><br />Jones, Charles, M.D.<br />Hew Haven, CT<br />(Pediatrics)<br />Phone: 203-772-1123<br />Phillips, Steven M.D. familiar with Cpn<br />944 Danbury Road<br />Wilton, CT 06897<br />(203) 544-0005<br />Past President, International Lyme and Associated Diseases Society (ILADS)<br />Website: www.ILADS.org<br />http://www.ctlymedisease.org/bio.htm<br /><br />Frederick Browne, MD<br />New Milford Hospital<br />21 Elm Street<br />New Milford, CT 06776<br />860-210-5007 http://www.newmilfordhospital.org/script/patientinfo_directory_results_detail.asp?PhysicianID=1876<br />http://www.newmilfordhospital.org/services/services_medical.htm#infectious<br /><br /><u>Florida:</u><br /><br />Schaller, James L. M.D., MAR (member of MRF)<br />http://www.personalconsult.com/<br />Naples, FL – 239-263-0133<br />Tampa, FL – 813-909-8009<br />Physician and Author<br /><br />Schwartz, George, M.D.<br />Boynton Beach, FL<br />http://www.healingresearch.org/news.html<br />http://www.healingresearch.org/drschwartz.html<br />drgschwartz@healingresearch.org<br />colleenjill@healingresearch.org<br />Phone: 505-424-9467<br />Cell: 505-610-8243<br /><br />Sastry, Vatsala, M.D.<br />15435 Cortez Blvd.<br />Brooksville, FL 34613<br />(352) 799-2294<br />Or<br />2105 Highway 44 W<br />Invernness, FL. 34453<br />(352) 637-5000<br /><br />Uppal, Neelam, M.D.<br />5840 Park Blvd.<br />Pinnelas Park, FL. 33781<br />(727) 547-5232<br />Infectious Disease and Internal Medicine<br />Practices in Largo, FL, Pinellas Park, FL, and Saint Petersburg, FL<br /><br />Vitelli, Mario, Ph.D., LA.C<br />Physicians Health Center<br />420 SE 17th Street<br />Ocala, FL 34471<br />352-368-1099<br />352-351-5343 (Physicians Health Center)<br />Email: sciodrcarol@yahoo.com<br />Board Certified Biofeedback Specialist<br />Interested in examining and treating individuals with Morgellons symptoms<br /><br />James E. Lemire, MD, PA<br />9401 SW Hwy 200 Bldg 90 Ocala, FL 34481-9612<br />Phone 352-291-9459<br />FAX 352-291-9465<br />office@LemireClinic.com<br />http://www.lemireclinic.com/index.htm<br /><br /><u>Georgia:</u><br /><br />Susan E. Kolb, M.D., F.A.C.S.<br />4370 Georgetown Square<br />Atlanta, GA 30338<br />Phone: (770) 457-4677<br />http://www.plastikos.com<br /><u><br />Michigan:</u><br /><br />Ledtke, Michael A. M.D. (member of MRF) will only see patients who live in MI<br />150 Plymouth Rd<br />Saginaw, MI 48603<br />(989) 793-7779<br /><br /><u>Nevada:</u><br /><br />Arezo Maria Fathie, MD<br />2649 Wigwam Pkwy #101<br />Henderson, NV<br />702-407-9994<br />http://www.generationsmedicalcenter.com/medicalspa/acne-index.html<br />E-mail: getwell@generationsmedicalcenter.com<br /><u><br />New Jersey:</u><br /><br />Bransfield, Robert M.D.<br />Red Bank, NJ<br />Phone: 732-741-3263<br />http://www.mentalhealthandillness.com/<br />email: rb@mentalhealthandillness.com<br />rbransfield@monmouth.com<br />http://pn.psychiatryonline.org/cgi/content/full/42/11/24-b<br /><br />Emilia Eiras MD<br />702 Brewers Bridge Road<br />Jackson, NJ<br />732-905-9630<br />http://www.healthgrades.com/directory_search/physician/profiles/dr-md-reports/Dr-Emilia-Eiras-MD-665BEC97.cfm<br /><br /><u>New Mexico:</u><br /><br />Daniel Kinderlehrer, MD<br />4 Torreon Place<br />Santa Fe, New Mexico<br />505-984-9700<br />http://www.healthgrades.com/directory_search/physician/profiles/dr-md-reports/Dr-Daniel-Kinderlehrer-MD-E244B855.cfm<br /><br />Canfield, Russell M.D. PC<br />500 Don Gaspar Ave<br />Santa Fe, NM 87505<br />(505) 795-7111<br />Clinical assistant professor<br />University of New Mexico School of Medicine<br />Board Certified Holistic Medicine & Family Practice<br /><br /><u>New York:</u><br /><br />Dr. Pratima Raichur - Aruyvedic doctor (India)<br />Pratima Ayurvedic Skincare Spa<br />110 Greene St., Suite 701<br />New York, NY 10012<br />(212) 581-8136<br />(Between Prince and Spring Streets)<br />www.pratimaskincare.com<br />email: orders@pratimaspa.com<br /><br />Bernard Raxlen, MD<br />123 W 79th St<br />New York, NY 10024<br />212-799-2377<br />http://www.raxlen-lyme.com/<br /><br />Horowitz, Richard I. MD<br />Hyde Park, NY<br />Internist, CAM – Lyme<br />845-229-8977<br />914-229-8977<br />http://www.nyema.org/nyema_gnl/horowitz_bio.htm<br />Board Certified, Internal Medicine, Former Assistant Director of<br />Medicine, Vasser Brothers Hospital, Specializes in diagnosis and<br />treatment of complicated Lyme disease and other tick-borne illnesses.<br />First Vice President of the International Lyme and Associated Diseases<br />Society, Inc. (ILADS)…familiar with Morgellons disease. You can call<br />to see if he is accepting new patients.<br /><br />Daniel Cameron MD, MPH<br />Lyme Disease Practice and Research<br />175 Main Street<br />Mt. Kisco, NY 10549<br />Tel: 914-666-4665<br />E-Mail: Cameron@LymeProject.com<br />http://lymeproject.com/<br />Internist, epidemiologist, lyme<br />914-666-4665<br /><br />Ken Leigner, MD PC<br />Internal & Critical Care Medicine<br />Lyme Borreliosis & Related Disorders (ALS Focus)<br />8 Barnard Road<br />Armonk, New York 10504<br />914-273-2121<br />http://www.canlyme.com/leigner.html<br /><br /><u>North Carolina:</u><br /><br />Jemsek, Joseph M.D.<br />14330 Oakhill Park Lane<br />Suite 201<br />Huntersville, NC 28078<br />Phone: 704.987.2111<br />Fax: 704.987.2113<br />http://www.jemsekspecialty.com/<br />http://web.archive.org/web/20050205034620/www.jemsekclinic.com/lymedisease.php<br /><u><br />Ohio:</u><br /><br />Dr. James R Overman, M.A., M.H., M.Div., N.D., C.N.H.P.<br />Precision Herbs, LLC<br />9804 Township Road 89<br />Killbuck, OH 44637<br />330-276-6511<br />330-276-0411 fax<br />http://www.precisionherbs.com/index.cfm?fuseaction=page.display&page_id=20<br /><br /><u>Oklahoma:</u><br /><br />Casey, Rhonda, D.O.<br />(Pediatrics)<br />3345 S Harvard, Bldg 200<br />Tulsa, OK 74135<br />918-742-8160<br /><br />Werner, Carla, M.D.<br />(405) 755-1970<br />13321 N Meridian Ave Ste 406<br />Oklahoma City, OK 73120<br /><br /><u>Oregon:</u><br /><br />Raffety, Stacey, N.D. (Dr. of Holistic Medicine)<br />Tigard Holistic Health Clinic – Oregon<br />11930 SW Greenburg Road<br />Tigard, Oregon 97223<br />Phone: (503) 639-1712<br />http://www.tigardholistic.com/faq.htm<br /><br /><u>Pennsylvania:</u><br /><br />Bach, Gregory P., D.O., P.C.<br />Colmar, PA<br />(Internist) Family Practice<br />Phone: 215-997-9421<br /><br /><u>Texas:</u><br /><br />Boulden, Kelly, M.D.<br />Fibromyalgia & Fatigue Center of Fort Worth<br />4521 S. Hulen Street, Suite 200<br />Ft. Worth, TX 76109<br />Toll-free: 1-866-443-4276<br />Phone: 817-924-1010<br />Fax: 817-924-6060<br />http://www.fibroandfatigue.com/aboutus.php<br /><br />Curti, Tony, M.D.<br />806-445-9667 office<br />P O Box 65601<br />Lubbock, TX 79464<br /><br />Hardwicke, Alan M.D.<br />425 Cypress St<br />Abilene, TX 79601<br />325-673-4488<br /><br />Holt, Byron B. M.D., F.A.C.O.G.<br />Womans Healthcare Center of Houston<br />Professional Building II<br />909 Frostwood, Suite 110<br />Houston, TX 77024<br />713.365.2900<br />http://www.whcch.com/holt.html<br /><br />Hamid Moayad, D.O.<br />1305 Airport Frwy., #311<br />Bedford, TX 76021<br />(817) 540.3388<br />Neurology, Lyme<br /><br />Parrish, Mary, NP<br />Del Rio, TX<br />Phone: 830-774-4094<br /><br />Stevens, James D.O.<br />Fibromyalgia & Fatigue Center of Dallas<br />12740 Hillcrest Road<br />3 Hillcrest Green Building, Suite 100<br />Dallas, TX 75230<br />Toll-free: 1-866-443-4276<br />Phone: 972-980-2300<br />Fax: 972-980-3730<br /><br />http://www.fibroandfatigue.com/aboutus.php<br />Strickland, Carol, M.D.<br />Internist<br />St. Joseph Hospital/Medical Building<br />Houston, TX<br />(713) 571-7009.<br /><u><br />Washington:</u><br /><br />Ames, Geoffrey S. M.D., PLLC (member of MRF)<br />P.O. Box 430<br />Richland, WA 99352<br />Phone: 509-943-3934<br /><br />Klinghardt, Dietrich MD, PhD & AANT<br />Bellevue, WA (near Seattle)<br />Lyme Specialist<br />aant@neuraltherapy.com<br />425-637-9339<br />425-822-2509<br />425.688.9220<br />425 688 8818<br />To read more about him refer to this site:<br />http://www.healthfreedomsolutions.com/forums/viewtopic.php?t=60<br />http://www.dstressdoc.com/Morgellons/medical_approaches.htm<br /><b><u><br />CANADA:</u></b><br /><br />Riddle, Chelsea N.D. and Klassen, Joe N.D. (both Naturopathic Doctors)<br />Fish Creek Naturopathic Medicine<br />2114-380 Canyon Meadows Dr SE<br />Calgary, Alberta<br />Canada<br />403 271-4500<br />Emails:<br />drjoe@fishcreek.ca<br />drchelsea@fishcreek.ca<br /><br />Miklossy, Judith MD, PhD<br />Neuropathologist, board certified in neurology and psychiatry with<br />experience in molecular biology. She has been involved in the research<br />of Lyme disease for approximately 20 years.<br />University of British Columbia, Department of Psychiatry,<br />Kinsmen Laboratory of Neurological Research,<br />Vancouver, B.C. V6T 1Z3, Canada<br />E-mail miklossy@astro.temple.edu<br />http://www.samento.com.ec/sciencelib/4lyme/Bb_Alzheimer.pdf<br />http://stroke.ahajournals.org/cgi/content/abstract/33/8/1986<br />TEL: 215-204-0678<br />http://www.temple.edu/cnvcb/index.html<br /><br /><b><u>UNITED KINGDOM:</u></b><br /><br />Dr. Andrew Wright<br />Dalton House, 33 Leigh Road,<br />Westhoughton, Bolton<br />BL5 2JE<br />UK<br />Tel No 01942 819301<br />http://www.lymediseaseaction.org.uk/conf2006/speakers.htm<br />thefatigueclinic@yahoo.co.uk<br /><br />Dr. David Owen BSc MB BCh LLM<br />Place of Private Practice:<br />30 The Parade, Cardiff. CF24 3AD<br />UK: 02920 486168 or<br />outside: + 44 (0) 2920 486168.<br />http://www.drowen4lyme.co.uk/<br />http://www.lymediseaseaction.org.uk/conf2006/speakers.htm</span> <span style="font-size:100%;"><span style="font-size:85%;"><span style="font-weight: bold;"></span></span><br /><br /></span><span style="font-size:100%;">----------</span><br /></div><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <span style="font-weight: bold;">Mom</span><br />Date: Sat, Nov 3, 2007 at 9:12 PM<br /></span></span><br /> <div bg="" style="color: rgb(0, 0, 0);"> <div><span style="font-family:Comic Sans MS;">David<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">It sounds like the "Morgellon's Research Foundation" has not yet been able to find out anything that would be helpful, in which case they are being honest with you. Certainly they can't diagnose or treat anyone over the internet, and obviously they won't do so unless you are their patient and are paying them (or have an insurance company that will pay them). It was nice of Dr. Buckner to respond to you, as you said, even if you still feel frustrated by his response.<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">Love, Mom<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">(Did you get the second Halloween card I sent you?)</span></div></div><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Me</b><span dir="ltr"></span><br />Date: Sat, Nov 3, 2007 at 11:00 PM<br />To: Mom<br /></span><br /></span>Yes, I got the 2 cards & the $6 you enclosed a couple days ago. Thanks! Wow! 2 Halloween cards AND $6! What a very odd and unexpected (yet very appreciated) surprise in the mailbox! Was that intended as busfare so I can get to the G.A. Office this week? Anyway, whatever the reason that is most likely what it will be used for! Thanks! It will definitely come in handy!<br /><br />I intend to go on Monday and re-apply for caap now that the 60 day penalty period has passed. I got a response from the lady who runs <a href="http://morgellonstreatmentsteps.com/" target="_blank"> morgellonstreatmentsteps.com</a> who I forwarded Dr. Buckner's response to. I will forward it to you. <div> </div> <div>My friend S suggested going to Mexico to buy the recommended antibiotic regimen for eliminating Chlamydia Pneumonia (avail without prescription, and cheap apparently).<br /><br />BTW, It appears there is a Dr. in your area, out near the mayo clinic, that treats morgellons. Could you check with him to see if he will see me in my present financial status? Maybe I can come home for Thanksgiving for a couple weeks, get diagnosed, and begin some type of treatment regimen if so! When I come back, (presumably with my diagnosis in hand) perhaps that would be enough to begin the process of applying for disability?<br /><br /></div><div> </div><span style="color: rgb(136, 136, 136);"> <div>d<br /></div></span></div>Dave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com0tag:blogger.com,1999:blog-2180465743998260270.post-15257604348133486572007-10-24T09:12:00.000-07:002010-07-31T09:23:18.579-07:00Help From "Above"To: Janet Fedeles<br />Subject: Morgellons Disease/Syndrome<br />Sent: Wed, 24 Oct 2007<br />From: Rev. Robert Johnnene OFA<br /><br />I have a friend/parishioner who is suffering from Morgellons and living in San Francisco. He has been unable to get any help from the State or the medical professionals he has seen. He is unemployed because of this disease and his welfare benefits were cut off again because he missed an appointment.<br /><br />He cannot afford the $500-$600 per hour that the two doctors in the area who are successfully treating the disease are charging.<br /><br />He is a smart and capable young man who now fears that he is losing his mind to the disease.<br />I would appreciate any advice or assistance you might be able to give in his case.<br /><br />I am not in a position to help financially as I only live on less than 900 a month myself.<br />We are a Catholic mission of the Franciscans of the Annunciation serving the metro West Section of Boston Massachusetts (and all of New England and the entire world via the internet). We believe that all God's children deserve respect, and the same rights and privileges as every other person regardless of their race, creed, sexual orientation or marital status.<br /><br />A humble simple servant of Christ,<br />Rev. Robert Francis Johnnene OFA<br />Mission St's. Sergius and Bacchus<br />Holliston, Massachusetts<br />508-429-0992<br />E-mail: Mission_St_Sergius@msn.com<br />Web Site: www.missionstsergius.org<br /><br />----------<br />From: Janet Fedeles<br />Date: Wed, Oct 24, 2007 at 1:04 PM<br />Subject: Re: Morgellons Disease/Syndrome<br />To: Rev. Robert Johnnene OFA<br /><br />Dear Reverend Johnnene,<br /><br />Unfortunately, most of us are in the same boat. I have lost everything, as well. My parents are helping me right now but this cannot last forever.<br /><br />Does your friend have a computer that he can look at Marc Neumann's site? <a href="www.morgellons-research.org">www.morgellons-research.org</a>. In this site, Marc has some excellent suggestions about cleaning clothes, environment, etc and also about hygiene in which homeopathic products can be used. Also some pharmacy sites where antibiotics can be ordered without a prescription. I understand that he has no money but just maybe someone can help him in these regards.<br /><br />Will the practitioners in San Francisco not see anyone who cannot pay? This saddens me.<br /><br />I will pass this on to Marc Neumann, as well. He may have some other ideas.<br /><br />Please keep praying for all of us. I pray daily and wish I could do more for your friend and many others.<br /><br />Sincerely,<br /><br />Janet FedelesDave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com0tag:blogger.com,1999:blog-2180465743998260270.post-91210489780373389572007-10-23T06:24:00.000-07:002010-07-31T21:36:44.922-07:00Fires in San Diego<span style="color: rgb(0, 0, 0);">From: </span><b style="color: rgb(0, 0, 0);" class="undefined">Mom</b><br /><div style="color: rgb(0, 0, 0);" class="gmail_quote"><span class="undefined"><span style="color: rgb(0, 0, 0);">Date: Tue, Oct 23, 2007 at 6:24 AM<br /></span></span><br /><div bg=""> <div><span style="font-family:Comic Sans MS;">David,<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">We're very concerned about the fires in San Diego. Your Aunt Kathy and Uncle Clark, their daughter Maggie and her family (her husband Kenton and baby Maya) have all been evacuated, along with 250,000 other people. The really hard thing for your Aunt Kathy (besides the possibility of losing her house once again) is that she had knee replacement surgery on Wed., and she just got out of the hospital on Sun. Then she had to leave her home on Mon. I don't know where they're staying, and I don't know if</span><span style="font-family:Comic Sans MS;"> their house is all right this morning or not. The winds in the area are still high, and they expect them to be that way at least through Wednesday. 500 homes in the area have already burned.<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">Love, Mom</span></div></div><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Me</b><span dir="ltr"></span><br />Date: Fri, Oct 26, 2007 at 12:06 PM<br />To: <span style="font-weight: bold;">Mom</span><br /></span></span><br />Any news yet?<br /><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Mom</b><span dir="ltr"></span><br />Date: Sun, Oct 28, 2007 at 2:48 PM<br /></span></span><br /><div bg=""><div><span style="font-family:Comic Sans MS;">Aunt Kathy wrote:<br /></span><span style="font-family:Arial;">All is well here now. I have a home health nurse coming twice a week to check my coumadin level and a physical therapist coming three days a week and I'm already feeling pretty good. Still hurts a lot and I'm still trying hard to straighten my leg, but it's healing pretty well and I'll get there if I keep working at it. M is my constant companion, holding onto my walker as we walk down the hall or outside, chattering away as I struggle and strain.<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">Love, Mom</span></div> </div><br /></div><span style="color: rgb(0, 0, 0);font-family:arial;" ><span style="font-weight: bold;font-family:arial;" >UPDATE: This time, my Aunt and Uncle's neighborhood was spared by the fires raging through San Diego. 4 years earlier it was a different story. I cannot help but be reminded of their traumatic ordeal. Below is a letter my Aunt sent out after the 2003 Cedar fire in San Diego County which burned their home (and thousands of others) to the ground.</span><br /><br /></span>----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Aunt Kathy</b><br />Date: Sun, Oct 31, 2003</span></span><br /><span style="color: rgb(0, 0, 0);font-family:arial;" ><br />Hello everyone,<br /><br />Wow, what a week it has been for our family. As most of you know by now, last Sunday was a day that changed our lives forever, not just because of the total loss of our home to wind-fed wildfire, but because we have also been the recipients of an incredible outpouring of love and caring from our friends and neighbors (whose homes survived the fire), and from friends across the country who have called and written to express their sadness and concern for our family. It has helped us to cope as we sift through the ashes, to know that others bear our sorrow and have hope, as we do, that it really is going to be okay. We'd like for everyone to know that we are all safe, have a place to live that is wonderful, and have already begun the process of repairing our lives. We know it's going to take awhile and we are prepared.<br /><br />Last Sunday, October 26, I was awakened around 6 a.m., by the acrid smell of smoke. Clark had stayed up until the wee hours of the morning working on a forensic case that he’d been called to testify in on Monday morning and it seemed like he’d barely gone to bed. We had been warned on the 11 o’clock news the night before of strong Santa Ana winds that would be blowing overnight, and like most San Diegans, had gone to bed with our windows open for ventilation because of the dry heat that comes with the winds. The smoke I woke to was something very different. We had known that a fire was burning in the mountains near Ramona, a community about 50 miles northeast of our house in Scripps Ranch because there had been news reports about it on the Saturday morning and evening news. Wildfires this time of year are a common happening and tend to strike in the hills and mountain areas of Southern California. Firefighters are generally prepared for them and residents are asked to do what they can to keep dry brush away from their homes and property year round. (Our homeowners association makes it mandatory for all of us to have a hundred feet of cleared land on the canyon side of our homes, and maintains this firebreak several times a year). These mountain fires are often terrible and consume many acres of wilderness area, but are usually contained by the setting of backfires that help confine the fire and eventually keep it from spreading. We smelled the smoke from the Ramona fire in our neighborhood on Saturday and simply assumed that the high winds were carrying it westward from Ramona toward the ocean. We never imagined that the fire would move 50 miles in just a few hours, jumping firebreaks, and crossing highways and freeways, and ultimately consume our neighborhood. Even now, in the aftermath, we can't make much sense of the path the fire took.<br /><br />I had turned the television on at about 7 a.m. just to see where the fire was still burning, and believe it or not, only one station was saying anything about it and what they were saying was very, very little, mostly a re-hash of what was said at 11 p.m. the night before. We were informed that the fire was still in Ramona, though it had now moved closer to homes and was burning at a faster rate than anyone expected because of the high winds. I finally made Clark get up around 7:30 because I was getting nervous about how quickly the sky was changing from a blue morning sky to cloudy gray/black. I had closed all the windows in the house and it was starting to get warm inside. He reluctantly got up, groggy and wondering why I was so anxious about everything. Once he made it downstairs and took one look out our back door, he knew something was badly wrong.<br /></span><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm9gUfGAYRyg7TiUrT4_8mAvpznJW9U7YfZAayYsC9ySJoqBxi8XLOZMWSZkhyWPpnUZFQAVb-QXUtdmVr8gNyWcKj8QHBPi28woqYLXmkYKef5SsIDQuIA2k3ycMUNojEnPQd-nphjJc/s1600/Fire1.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 320px; height: 244px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm9gUfGAYRyg7TiUrT4_8mAvpznJW9U7YfZAayYsC9ySJoqBxi8XLOZMWSZkhyWPpnUZFQAVb-QXUtdmVr8gNyWcKj8QHBPi28woqYLXmkYKef5SsIDQuIA2k3ycMUNojEnPQd-nphjJc/s320/Fire1.jpg" alt="" id="BLOGGER_PHOTO_ID_5500241389339519186" border="0" /></a><span style="color: rgb(0, 0, 0);font-family:arial;" >By 8 a.m., we couldn't see the sun anymore from our back deck and the sky had turned alm</span><span style="color: rgb(0, 0, 0);font-family:arial;" >ost </span><span style="color: rgb(0, 0, 0);font-family:arial;" >black. We could definitely tell that something had very suddenly changed because ash was raining down and black clouds of smoke were boiling across the sky. Suddenly, one tv news reporter (that we actually know because he lives in our neighborhood and our kids were friends with his kids), was on tv, reporting from in front of his house saying that he had had neighbors calling him to report fire in the canyons in Scripps Ranch. Clark and I looked at each other and at that point, we decided to get some things together and leave the area just because of the intense smoke. Even though we’d closed all the windows, we really couldn't breathe very well inside our house and outside, it was impossible. Clark said to me, “Let’s just pretend that this is a dry run for evacuation and start gathering some things together in case we really do need to evacuate. We opened the garage door to pull our cars out so we could open all the car doors and load both our cars with stuff at the same time. At that very same moment, we were met with police and firemen running up both sides of the street banging on doors, yelling for everyone to stay calm and “evacuate immediat</span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBh-zNy5O09V_ykjgUvtxs-QhHQ42tuEqyxEiy2Dts4-cjFWGNLzEtfQJW7OSkSEhR_aB0vX-NI7yjD-FPtL5yfvAVDodfoV-yXEnqVG_EorckOE1p2xYYxdCZiv5n3beB0PWoNbebcL4/s1600/Fire2.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 250px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBh-zNy5O09V_ykjgUvtxs-QhHQ42tuEqyxEiy2Dts4-cjFWGNLzEtfQJW7OSkSEhR_aB0vX-NI7yjD-FPtL5yfvAVDodfoV-yXEnqVG_EorckOE1p2xYYxdCZiv5n3beB0PWoNbebcL4/s320/Fire2.jpg" alt="" id="BLOGGER_PHOTO_ID_5500241838853910834" border="0" /></a><span style="color: rgb(0, 0, 0);font-family:arial;" >ely”. I immediately began to panic, literally felt my heart start thumping </span><span style="color: rgb(0, 0, 0);font-family:arial;" >because I had just seen a fireman and a policeman looking me straight in the eye with fear and intention on their faces and yelling at us to “LEAVE NOW”! Clark was stunned but very calm; he took my hands and looked straight at me and told me to pack whatever I could in the next 5 minutes and be ready to go real quick. I didn’t know where to start or what to grab first. Clark grabbed a bunch of file boxes and I went into the office and got all our personal files. Clark literally yanked the cables from the back of the computer and then took as many as he could unplug from the wall. We ran upstairs, got suitcases down and started grabbing clothes from the closet and drawers. For whatever crazy reason, I grabbed stuff for Clark and not much for myself, figuring he would have to go back to work the next day and would need his suit and shirts for testifying in court. I didn’t even go into Claire or Natalie’s bedrooms, or the bonus room where a lot of photo albums were on shelves. As I rushed around, I tried to call Jes, Maggie, Claire, and Natalie but none of them answered their phone. I left crazy breathless messages for them, telling them that there was a fire and that we were being evacuated and asking what I should try to grab from their rooms. When they didn’t answer, I just didn’t go into their rooms figuri</span><span style="color: rgb(0, 0, 0);font-family:arial;" >ng</span><span style="color: rgb(0, 0, 0);font-family:arial;" > they already had their </span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk2KkL-vAOyR3zB8MUCdO32Ubu_QjQjmROUGz-cqidkAooWiQ80JOw02WHacXbhODhX77qVMl1cbh251GPLfEFaN2t3_iuRIGODbbhXu8t-RbwWi6uj6hXh6oBkhmj5sSGxsDrEB3Zvfk/s1600/Fire4.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 320px; height: 250px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk2KkL-vAOyR3zB8MUCdO32Ubu_QjQjmROUGz-cqidkAooWiQ80JOw02WHacXbhODhX77qVMl1cbh251GPLfEFaN2t3_iuRIGODbbhXu8t-RbwWi6uj6hXh6oBkhmj5sSGxsDrEB3Zvfk/s320/Fire4.jpg" alt="" id="BLOGGER_PHOTO_ID_5500243952857059410" border="0" /></a><span style="color: rgb(0, 0, 0);font-family:arial;" >important things with them at school. Mostly though, I think I was somewhat in shock and couldn’t think straight about what to do next. I remember my hands shaking so badly and not being able to make them stop. Clark yelled up to tell me to take all the pictures from the upstairs hallway walls (that Natalie and I had just spent hours re-hanging after rep</span><span style="color: rgb(0, 0, 0);font-family:arial;" >ainting the whole upstairs during the summer). There was a very large box that Clark had managed to bring up at some point and he told me to put them all in it. I grabbed every one and</span><span style="color: rgb(0, 0, 0);font-family:arial;" > disco</span><span style="color: rgb(0, 0, 0);font-family:arial;" >vered that I couldn’t move the box because it was so heavy. I called for him to come help me take it down to the car and before I knew it, he came up, picked the box up like it weighed nothing and ran it down the stairs to put it in the back seat of my car. I couldn’t believe he was able to </span><span style="color: rgb(0, 0, 0);font-family:arial;" >do</span><span style="color: rgb(0, 0, 0);font-family:arial;" > that, but now I know what they mean by having super-human strength during times of extreme distress. Clark certainly did that day. After that, Clark said we’d better go.<br /><br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL4Tuy3S2dZCi_9IfkCQWtVUMmX3X-iwSUFun2VeslXIkbpemF8xaNZep5jblAt3y89fPAE-eNqvllVeYdDvdM7X__s0m6fGEoX7LoV72RCfOQ8LwQiFqSqvZ75zCC6q5_6f_EnPOOtPw/s1600/Fire3.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 242px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL4Tuy3S2dZCi_9IfkCQWtVUMmX3X-iwSUFun2VeslXIkbpemF8xaNZep5jblAt3y89fPAE-eNqvllVeYdDvdM7X__s0m6fGEoX7LoV72RCfOQ8LwQiFqSqvZ75zCC6q5_6f_EnPOOtPw/s320/Fire3.jpg" alt="" id="BLOGGER_PHOTO_ID_5500244174770537714" border="0" /></a><span style="color: rgb(0, 0, 0);font-family:arial;" >When we opened our garage door to leave, Fairbrook Road’s two lanes had suddenly become three lanes of traffic going in one direction out of the neighborhood. It was unusually quiet and every driver had the same look on their faces: panic and fear. I remember thinking that there was probably more we could take and Clark and I walked quickly through the rooms downstairs before deciding that there was nothing else we could fit in the cars. Only much later did I remember what we should have grabbed, but of course, by then it was much too late to do anything about it). As we took one last look out our back door to the canyon behind our house, we could see flames starting to burn across the entire horizon. I had my camera in my pocket and took two last pictures. On our way to get in the car I noticed my Bose cd player sitting in the garage where I’d been listening to cds the day before while refinishing furniture with Maggie. I grabbed it, mostly because it was a gift from Clark and it had a radio, and for whatever reason, I thought we might need that. We had called dear friends in La Jolla who told us to come immediately to their house. Clark grabbed my hand and gave me a little smile and a kiss on the cheek and told me, “Don’t worry - I’m sure we’ll be able to come back after everything is over. They’ll get to our house before anything can happen to it.” Once on the road, I looked at my watch and found that we had actually just taken 10 minutes to run through our house and grab whatever we could and literally threw it in our cars. We were able to get most of the family pictures off our walls, the important household papers from our home office, a few clothes and shoes, and our cat "T.K.", who is 18 years old and was totally oblivious to all the chaos going on around her. I never ever thought we were saying a final goodbye to our house and everything still in it. We saw our next door neighbor Joanne, an art professor at San Diego State, wrangling her two dogs into her van and ran over to ask her if she needed any help to get her many, many works of art out of her house. She said a tiny bit wistful but said, “No…it’s just art. If I lose it, I can always make new stuff.” I was amazed! She told us to stay in touch with her and be safe. We all got into our cars and left at the same time.<br /><br />We were out of our neighborhood within minutes because of police action to block our exit off the 15 freeway and the opening up of Pomerado Road, (the main road in and out of Scripps Ranch), to four lanes of traffic in one direction rather than just two lanes. They kept the emergency lane open for fire trucks and police racing into the Ranch. We had tried to call all our kids to let them know what was going on and unbelievably, we met Maggie and her boyfriend Kenton, in her little red Honda hatchback, coming to help us gather up things just at the exact same time we were leaving the area. I don’t know how they’d managed to get onto Fairbrook Road but we yelled and waved at them to turn around right in front of us to leave the area and go with us to La Jolla, where my best friend, Mary Lynn Gage lives. It was just too late to go back to the house or any reason and I just had to yell it out the window to Mags. She just looked so confused and sad when I told her and I knew right then what it was going to be like to have to tell the other girls.<br /><br />Once we were safely away at our friends' house, we sat glued to the television trying to take in the fact that what we were seeing on television was our neighborhood going up in flames. It was just incredible to behold. Mary Lynn and Rusty had made breakfast for us and we just all quietly ate, none of us knowing what to say. The Gages said that they could see the black smoke in the eastern distance, but never even considered that it might be our neighborhood. Later on, when Mary Lynn convinced me to go for a walk on the beach to get out of the house, we were met with a little snowstorm of falling ash raining down on us. We just looked at each other - didn’t even say a word; she just hugged me and we kept walking, both of us thinking that that ash might be part of our house. We spent the whole of Sunday just quietly contemplating what life might be like for us if our house really had burned to the ground. Clark fielded calls from all our friends and family, and talked with our other girls trying to keep them up to date with any information we were seeing on tv. All they really wanted to know was if the house had survived. Maggie and Kenton sat in the backyard at our friend’s house talking and occasionally, I’d see Mags wipe away tears. The fire consumed every moment on every station on local tv, and we switched channels constantly trying to find any station broadcasting from our area or street to find out if the fire had actually reached our house or had somehow skipped over it. At some point, Natalie called, a little hysterically, from her dorm at UC-Davis to tell us that she’d seen our address on a fire website that said it was a total loss. She also said her friends from Scripps had been calling her all day to tell her whose houses were gone, and when we told her that we had no confirmation of any of that ourselves, she calmed down a little. She wanted to come home right away, as did Jessica and Claire. At first I didn’t want them to have to deal with any of what was going on - Natalie and Claire were in school, and Jes had just started a new job. I quickly realized that they couldn’t really focus on what school or work when their hearts were in San Diego with us and what was going on here.<br /><br />It wasn't until Monday that we actually got confirmation that our house was really gone. The mayor had issued a statement asking everyone to stay home from work and keep kids home from school for a week. The air quality was very poor and there were actually still fires burning in different areas of San Diego. The courts were all dark because of the mayor’s edict so Clark didn’t have to worry about testifying. The Monday following the fire, Clark got up really early and drove back to Scripps Ranch to see what he could find out. Fire and police weren’t letting anyone into the neighborhoods because the ashes of the homes were still too hot to let anyone go walking around on them and they really didn’t want to have anyone get hurt, and they said there was still the possibility of flare-up. Clark said that even though it was very early morning, there was quite a group of residents, mostly men, gathered at the corner of Pomerado and Semillon wanting information. Eventually, police agreed to take down addresses, a few at a time, and do a quick drive-by to see if the house was still standing. Clark said he gave ours and waited with everyone else to hear the news. When the policeman came back with a ‘yes’ or a ‘no’, Clark said you’d either hear a small cheer, or nothing. Some people cried or just turned and walked away when they got the bad news. Clark said he just stood there for a minute, taking it in. It was a lot to handle and he was all by himself when he heard. Then, he drove back and told me. What I wanted to do when I heard was just scream and cry but I just sat down and then the tears came. My friend cried and hugged me and told me that it was going to be okay. What could anyone say or do to make it okay? I had known the house was probably gone but until you actually see your address on an emergency website and get those calls from friends who had snuck in under the cover of darkness to see for themselves, you just live in denial that it can't possibly be true that the house you thought you'd be returning to is really gone. Clark told me a day or two later that he had called our house at 10:10 that Sunday morning and the line was insistently busy, a sure sign that there was no longer a phone at our house. We’d left around 8:45 that morning thinking we’d be back and now there is nothing to go back to.<br /><br />Jessica flew in on Monday night from her home with David in Providence, Rhode Island, and I must say that it is a relief to have her here. She is somewhat in shock at what has happened, but still has the ability to be a bit removed since she didn’t actually see what we saw. She’s very proactive and positive, trying to keep our spirits up and always telling us that we’ll find a way to deal with whatever we may find when we get to go back to our neighborhood. She’s right and we will.<br /><br /></span><span style="color: rgb(0, 0, 0);font-family:arial;" >We didn't actually get in to see our house until Tuesday afternoon. Fireman and police continued to patrol our neighborhood to keep people from entering because there were still numerous hotspots and small flare-ups. Scripps Ranch was famous for it’s eucalyptus groves and now all the trees in our area are black and brown, burned to the point of instability if they are still standing. Jes, Maggie, and I joined hundreds of people on Tuesday afternoon at the entrance to our neighborhood, and one by one, as they checked our driver's licenses to verify our address, were allowed walked in to see what was left of where we had lived for so long. Clark met up with us a little while later. At first all we saw were homes that were untouched by the fire, though all landscape and canyon areas were burned right up to the homes themselves. It was kind of amazing to realize that some homes had actually managed to survive that inferno. Then a block later we came to the first indication of how the fire had completely obliterated whole blocks. Just complete devastation. Everywhere we looked we saw what was left of the homes of close friends, burned utterly to the ground. Everywhere were the skeletons of cars in driveways, bare brick chimney stacks, and here and there, the semi-recognizable remains of bathtubs and barbeques. It was shocking and so unbelievably sad to see these homes gone. All you think of when you see your friends' home in rubble is all the happy times you've spent there, watching your kids and their kids do silly things, the backyard cookouts; it all just floods back. You keep thinking how bad and sad this must be for them.<br /><br />Then we turned up our street and it was worse than we could have imagined. Every turn revealed another inconsolable family in the street looking at the destruction of their home. Adults and kids were everywhere, crying and hugging each other, staring in disbelief. Everything was a shade of black, brown or gray. Every once in awhile a piece of green lawn peeked oddly through where no rubble fell. Policemen and firemen slowly trawled the street making sure only residents were walking onto the actual home sites. Again, the unusual quiet in a neighborhood that should be teeming with kids, cars, bikes, and noise. A few media walked the street trying to talk to residents who had nothing much to say except to express their incredulity and shock at it all. The neighbors whose houses survived were at a loss as to what to say, every one of them feeling guilty that their house had survived.<br /><br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghnT4djC5JY8K4rhxSoP0N9-rADLOkcmdkthV9tw4mSP9riGgTk6aqPFCKXgFDI47LPYoFy67S7cP5DJyXbd06t0RuPUnuJ8J4MEWNdSEs4pNz7AeDgTRl_vOYebRRVsyfeUgnOiyzjHs/s1600/Fire5.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 320px; height: 198px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghnT4djC5JY8K4rhxSoP0N9-rADLOkcmdkthV9tw4mSP9riGgTk6aqPFCKXgFDI47LPYoFy67S7cP5DJyXbd06t0RuPUnuJ8J4MEWNdSEs4pNz7AeDgTRl_vOYebRRVsyfeUgnOiyzjHs/s320/Fire5.jpg" alt="" id="BLOGGER_PHOTO_ID_5500243212822824626" border="0" /></a><span style="color: rgb(0, 0, 0);font-family:arial;" >When we got to our own house, we all held hands and just sobbed at the totality of the burn. You just stand there and stare and try to find anything recognizable that might welcome you back, but there is absolutely nothing. The fireplaces and chimneys look naked and sad that only they survived. We tried to get our bearings and figure out what part of the house fell where, but it was impossible in the fading light of the late afternoon, so we just walked around the perimeter of the house to see what path the fire took. I’m not sure how, but some good friends (Gary and Peggy Hetherington) were waiting for us when we arrived at our house and they cried with us for our </span><span style="color: rgb(0, 0, 0);font-family:arial;" >loss, having been there so many times over the years for happy occasions. They just walked with </span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQlzK-DNhNy28nJXEqAxbMERl9BGOBI4hrVHr9TC_R0RfMRL2JMlLvUBOzy0VUOgCghFztcv_8qFDQ0fkhoNGGLqNy6zgrsIi2pXm_EdOR_EZ5MRhpA4WYMwm0N4kGe0gWEuObz8FJbcg/s1600/Fire6.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 232px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQlzK-DNhNy28nJXEqAxbMERl9BGOBI4hrVHr9TC_R0RfMRL2JMlLvUBOzy0VUOgCghFztcv_8qFDQ0fkhoNGGLqNy6zgrsIi2pXm_EdOR_EZ5MRhpA4WYMwm0N4kGe0gWEuObz8FJbcg/s320/Fire6.jpg" alt="" id="BLOGGER_PHOTO_ID_5500246083480712642" border="0" /></a><span style="color: rgb(0, 0, 0);font-family:arial;" >us in silence, looking over the rubble</span><span style="color: rgb(0, 0, 0);font-family:arial;" >, being careful not to step on anything that might be precious. None of us could talk very much. Trying to take it all in is too much at first and you don't know what to do or where to start. The beautiful slate walkway to our front door is shattered and splintered having been crushed beneath the falling house. The rose bed that we so lovingly cared for was burned to the ground and gone. The trees in the front yard exploded and weirdly, were in a star shape on the front lawn </span><span style="color: rgb(0, 0, 0);font-family:arial;" >making it hard to walk </span><span style="color: rgb(0, 0, 0);font-family:arial;" >around them. You keep looking at it all again and again trying to make some sense of it, but, really, everything is just gone.<br /><br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh6ODVJWCM9IgGfpGzlOrObT0QrGSBLF7CgTUNoJbb428MxxKfLvup305Sq4PvukL616TQHBrZY9QEgIfAVvq2wpolKoN6e-OSvKKKWoC9vAUi6oRLky4jdJDoj_HZyns2TbSKrlmZTZY/s1600/Fire7.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 320px; height: 184px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh6ODVJWCM9IgGfpGzlOrObT0QrGSBLF7CgTUNoJbb428MxxKfLvup305Sq4PvukL616TQHBrZY9QEgIfAVvq2wpolKoN6e-OSvKKKWoC9vAUi6oRLky4jdJDoj_HZyns2TbSKrlmZTZY/s320/Fire7.jpg" alt="" id="BLOGGER_PHOTO_ID_5500246736299906850" border="0" /></a><span style="color: rgb(0, 0, 0);font-family:arial;" >After a little while, we started to realize that the fire had had it's own way with our neighborhood. The winds had whipped it here and there, throwing sparks every which way - there truly was no rhyme or reason to it's path. Our two neighbors to the west (including the art professor) had their homes spared, but our neighbors to the north and east of us lost their homes like us. When we made our way to the back canyon, where we'd seen flames starting as we fled, we were shocked to see that the fire had not made it to our back fence and had in fact been held back quite a way. The lantana and geranium flowers just outside our fence and in the canyon were still blooming with bright little flowers. Our next-door neighbor whose house had survived, had burn right up to her fence and all through her back yard but her house had been spared. How did her house not burn up? Our neighbors across the street lost their home despite having a tile roof and stucco. Again, we believe it was the wind that blew burning embers all over the place and wherever the embers could find a foothold, such as in a tree, on a roof, or dry brush, it took the opportunity to flare up.<br /><br />It got dark pretty soon after we got there and the police made everyone leave again. We made a plan to return the next day to start looking through the ashes. Clark didn't want to disturb any part of the ruins until Natalie and Claire could return home to see the house as we saw it. Thinking of them seeing it for the first time as we did was too much for me. Natalie is our one child who does not like change, and fights hard to keep every remnant of her life the same, never minding if things get outdated or old. Claire can appear strong on the outside but is really a softie on the inside and deals with trauma like we all do, with lots of tears and the need for hugs. Natalie did arrive on Wednesday morning, after a long flight on Tuesday night that had to return to Sacramento because of fog in San Diego, and Claire came in on Thursday morning with her boyfriend, Ransom Boynton.<br /><br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioV7RQRfWpKQDpqleMUFH8yazOz-5-6sF0j9HfBEsamzNKy1LyxFEnOspnDO8iUFv7uL3XRzvqorVYkUfPIy12Y8xmki1v1_wASF4cf_GBi9B_vwgkgYSRZDkfZgapZzJ92i2v7J7wGy0/s1600/Fire8.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 245px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioV7RQRfWpKQDpqleMUFH8yazOz-5-6sF0j9HfBEsamzNKy1LyxFEnOspnDO8iUFv7uL3XRzvqorVYkUfPIy12Y8xmki1v1_wASF4cf_GBi9B_vwgkgYSRZDkfZgapZzJ92i2v7J7wGy0/s320/Fire8.jpg" alt="" id="BLOGGER_PHOTO_ID_5500247146776195122" border="0" /></a><span style="color: rgb(0, 0, 0);font-family:arial;" >It breaks your heart in a different way to see your children searching through rubble for any little treasure from their young lives, knowing that they probably won’t find anything. After awhile though, when your friends come over and your kids’ friends come over, many with their parents, and your neighbors keep stopping by to see if you need anything or give you a tidbit of information, you start to realize that there are a lot of people who are going to be looking out for you and making sure that you’re taken care of in one way or another. It really is going to be a long haul, but we are going to be okay eventually.<br /><br />We sifted through the rubble for 5 days and we found a few little things: 4 sets of ceramic baby bootie Christmas ornaments, unbroken, even though all the glaze and decoration has been burned off of them. They were in a box of tons of other Christmas ornaments in the storage loft of our garage. They were found in the ash spread over the entire lot of our house. A very sweet find! Nat found clumps of melted coins - $175 worth – in the area of where her upstairs bedroom fell to the ground. Claire found a piece of a front yard tree t</span><span style="color: rgb(0, 0, 0);font-family:arial;" >hat she’d carved her initials on as a kid. Maggie found odds and ends of things for others, but really nothing of her own. She lost lots of </span><span style="color: rgb(0, 0, 0);font-family:arial;" >books and pictures that were being stored at our house. Thankfully, Jes had nearly all of her </span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK1f-IFS90zsj0tkrhB-jdFR3MxhdZaTMIixfGSAXiVShfdrvMbA6_Z70LtA2F8DxzLGMHGGzQFNHVqfN7tnqWd7tUzg4ua4hfg2pGRdJQ6U9tt6FP-RMwN4m9AQdeXQ7r2NqvR8gluQo/s1600/Fire9.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 320px; height: 242px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK1f-IFS90zsj0tkrhB-jdFR3MxhdZaTMIixfGSAXiVShfdrvMbA6_Z70LtA2F8DxzLGMHGGzQFNHVqfN7tnqWd7tUzg4ua4hfg2pGRdJQ6U9tt6FP-RMwN4m9AQdeXQ7r2NqvR8gluQo/s320/Fire9.jpg" alt="" id="BLOGGER_PHOTO_ID_5500247505403603330" border="0" /></a><span style="color: rgb(0, 0, 0);font-family:arial;" >pictures and things with her in Rhode Island, but did lose her beautiful wedding gown, that had been cleaned and carefully boxed for storage after her wedding. Clark lost his wedding band and says he feels naked without it. He and I think about all the stuff we should have grabbed; we see it all in our mind’s eye and know exactly where it is in the old house. We keep telling ourselves not to feel guilty about not grabbing those most precious things, but I think David’s mother, Carter Flemming, put it best, “We carry pictures in our minds and hearts that no camera </span><span style="color: rgb(0, 0, 0);font-family:arial;" >can ever adequately capture, of loved ones gone from us and experiences that only happen once in a lifetime.” So true.<br /><br />After 5 days, and sweeping the entire foundation clean, literally, we stopped our sifting and have begun the task of starting over. Someone told us it might take two years or more. Wow…I can’t even think in those terms yet. We’ve also left our friend’s house in La Jolla. For now we have been given the use of a beautiful beach house in Del Mar, thanks to some generous people at our church. It’s not where we want to be, of course, but what a lovely respite for the time being. We’ll be able to spend the holidays there with all our children and we’re really looking forward to that.<br /><br />Thanks for all your calls, cards, thoughts and prayers. We’ll stay in touch and give updates as time goes by. We’re going to be okay.<br /><br />Love, Kathy</span><span style="font-weight: bold; color: rgb(0, 0, 0);font-family:arial;" ><span style="font-weight: bold;"><br /><br /></span></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCXe0HDI8IWL3MdRpaxz-1GQiPL8vOVXmGOlMf8V7MhHC_NjLcAQhjJt8gXHDvISmFHqsavfwIYvCNR_ozs1iQELzL8Gm7wLZflXorvf9464EJ2kCsCSd1ZebiZR_zcJ07g1EKMGx5kK0/s1600/Fire0.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 320px; height: 234px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCXe0HDI8IWL3MdRpaxz-1GQiPL8vOVXmGOlMf8V7MhHC_NjLcAQhjJt8gXHDvISmFHqsavfwIYvCNR_ozs1iQELzL8Gm7wLZflXorvf9464EJ2kCsCSd1ZebiZR_zcJ07g1EKMGx5kK0/s320/Fire0.jpg" alt="" id="BLOGGER_PHOTO_ID_5500250675390396546" border="0" /></a><span style="font-weight: bold; color: rgb(0, 0, 0);font-family:arial;" ><span style="font-weight: bold;">UPDATE: </span></span>This final picture is of Clark many months after the fire. By this time the lot has long been cleared, as have others in the neighborhood, we have gotten plans for the new house drawn up by an architect, and have settled on a builder. You can see the capricious nature of the fire across the street where one house survived (the lady who took those pictures after we had all left!), and many on either side did not. Anyway, Clark is standing in front of what became our koi pond. We had invited a bunch of people over for a "lot party" complete with barbeque and drinks for toasting our new house. Clark outlined it with rocks we found on site and did the official groundbreaking by taking a shovelful of dirt from the soon-to-be koi pond! It was a great day!<br />xo AKDave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com1tag:blogger.com,1999:blog-2180465743998260270.post-74108157199070784602007-08-23T15:42:00.000-07:002010-07-31T11:37:57.789-07:00UPDATE - Health continues to declineDear Family,<br /><br />Things are not going so well. I thought by finally having a computer again, and getting it online, I would be able to communicate with ease due to Skype and email. However, I have discovered that my condition has deteriorated quite a bit since the last time I had a working computer, and to my surprise, it is now much more difficult to make phone calls, and even composing email has proven to be very challenging for several reasons. Phone calls are often useless because I can't remember what to say, or sometimes even why I am calling. Emailing is somewhat better because I have all the time in the world to collect my thoughts and try to get them out, but even this is challenging. Maintaining a train of thought long enough to type it is no longer possible. I have to constantly try to refocus, concentrate, and try to remember the point I was attempting to convey long enough to type it out. Sometimes it is simply lost into the ether forever, and does not get communicated. I am often left with a nagging feeling that there was something very important that I wanted to say, but cannot remember what it is. This is happening right now.<br /><br />My typing skills are so bad now that I don't think that 6 months of no computer can be solely to blame. I was trying to type my password for the router this morning, which has to be entered twice. Twice? How about once! It took me well over 20 attempts, and I'll admit my increasing frustration did not help. I tried to stay calm, focus, and carefully type the password, which is XXXXXX, something I ought to be pretty used to typing, but I just couldn't do it. I would stare at each letter I wanted to press, but my finger would simply not go there with enough precision to hit the right key usually, and when I was able to hit the key I wanted, I would often hit the keys around it as well. Things got a little better since then, as I became fully awake, and began to type this, but I am two paragraphs in, and it has taken a couple hours to get this far, due to all the reasons I mentioned.<br /><br />My mental abilities are definitely worsening. The best way to describe it is as others who have Morgellons often do. "Mental Fog." This is the clearest moment I have had in weeks, which thankfully has given me enough clarity, presence of mind, and ability to type this, but usually I am just drifting along in a fog, don't know where I'm going, don't know what I was doing 5 minutes ago, don't know what I'm doing now, don't have a goal or a plan, or maybe I do, but I don't remember what it is. I miss all my appointments. I missed one last week with GA , who wants me to jump through more hoops. Now I have to "re-qualify", which means re-fill out all the application forms, (20+ pages) submit a new letter from my landlord (that'll be fun), and show a bill, less than 30 days old in my name, or if that's not possible, in my landlord's name, then deliver them all in person at the assigned time. When I found out that I missed it, I re-scheduled for a week later, figuring that would give me enough to get those things together, but I just discovered that appointment was yesterday. I had no idea that a week had passed so quickly. I guess it must be that I am sleeping so much, that I am not aware of the passage of time. If I had to guess I would say it averages 18-20 hours a day. I don't really keeps tabs any more on how much I sleep, as it is difficult to do that anymore. It is always sporadic, and I usually have increased mental fog when I awake. Sometimes I sleep for 14 hours straight, sometimes for 2 hours, sometimes for six hours, and often times 2 hours later I will be asleep again. Occasionally I will actually remain awake for as long as 12 hours or so, but it is becoming less frequent. It is not consistent at all, and I exercise no control over it. I welcome it in fact, as being awake equals being uncomfortable, miserable, and depressed. I also have to spend more money on food when I am awake more.<br /><br />Last week I went out and bought a 4 oz bottle of colloidal silver ($18) from the health store up the street after seeing this video.<br /><br /><a href="http://www.youtube.com/watch?v=XcL8HvA7sME">http://www.youtube.com/watch?v=XcL8HvA7sME</a><br /><br />I tried it, for a couple of days, before i accidentally dropped the bottle, and the rest poured onto my bed, and experienced a 'purge' like the one she described, although at this point I guess you could say that these I am always experiencing a 'purge' but usually on a less dramatic level. IE. 'things are coming out of every orifice of my body, and as best I can tell, also reentering the same way. They are in my nose, my eyes, my ears, my mouth... let's just say, EVERY orifice, even the ones you don't normally think about as orifices (until things start going in and out of them), and definitely some that you'd rather not have anything like that going out of, or especially into.<br /><br />I have been bleeding in small amounts from my ears, my nose, and even my belly button, I believe from the aforementioned 'purge', or at least blood has been trailed there by the 'things' going out of my body, as evidenced by scabs in those areas. There is a small scab, accompanied with quite a bit of 'discomfort' in my urethra as well.<br /><br />Basically I am beginning to doubt that I am capable of "getting it together" enough to apply for disability, although I am trying to come up with a much needed system to remind me constantly of things I need to do, that can permeate my mental fog, but this is very hard to devise and implement when you are frequently in a mental fog!<br /><br />I have an appointment on a tuesday of this month, either last tuesday, or the upcoming one, hopefully the latter (although does it really matter?) with a Dr. from the SOMA Clinic. She wanted to see me months ago to discuss something that came up on my bloodwork, but I haven't been able to keep my appointments up to now. I really want to see her though, as I'd like to show her all the stuff I learned from the website, get a test for Lyme disease and others, and possibly start some of the prescription meds recommended there. Did I share with you the email that I got back from the lady who runs the website? I will forward it to you if I remember. She included a list of Doctor's in my area that are treating Morgellon's. The only bad news is that the only "Dr." in SF other than $500 NP Ginger Savely, whom I can't afford, is a Dr. who she shares an office with, Dr. Stricker, who charges $600 an hour. Definitely you should read the entire site if you get a chance, especially the page titled 'medical information' which is her theory that morgellons is actually a symptom of a disease called "Chlamydia Pneumonia" that lurks in your system beyond the scope of normal blood tests, and slowly destroys your immune system among other things. (making you more susceptible to parasites such as morgellons among other things, and eventually causing death)<br /><br />Well, I am only about half done telling you everything I need to health-wise, but my moment of semi-clarity is ending, and I am having such a hard time trying to find the words for what I want to say. I am getting sleepy, and I have been working on this email since 10am or so, and it is now almost 4pm, and I cannot go on. I will try to cover the rest in my next email if I can remember what i have to tell you<br /><br />I am reminded of a short story I read in gradeschool, titled, 'Flowers for Algernon', which is a collection of letters from a person with an idiot IQ, who is given an experimental drug that turns him into a genius, and then the effects fade and he is returned to idiot status as is charted by the declining quality of his letters (or was it a journal?). It is a must read if you have not, although I hope I do not share his fate. I bet it is even available somewhere online if you were to google it. I will try to remember to do that later.<br /><br />I see that a couple more episodes of House MD, my favorite television show, have downloaded to my hard drive, and I am eager to watch at least one of them. although I often fall asleep half way through as I probably will this time. I am watching the show from the beginning, in order, due to the wonder of the internet. The shows slowly (and I do mean slowly) download to my hard drive when I am connected to the internet, and I get to watch them (in 480P HD) on my computer, commercial-free when they are done. For free! One of these days the tv people will get smart and let you download their shows directly from them (with commercials intact), but hey, who needs them! For that matter who even needs Tivo anymore! At least I am finding one benefit from finally having a working, internet-connected computer again. I may be losing my mind and my health, but at least I can still watch the tv shows I want, when I want, as often as I want.<br /><br />btw, it does not escape me the irony that House MD is my favorite show, when Dr. House would almost certainly dismiss me as delusional just as quickly as so many of the doctor's I have seen up to now have. Or would he? I like to think not. ;)<br /><br />d<br /><br />----------<br />From: <span style="font-weight: bold;">Me</span><br />Date: Fri, Aug 24, 2007 at 9:45 AM<br />To: Family<br /><br />I looked up "Flowers For Algernon" with Google this morning, after re-reading my letter from yesterday, and was surprised to find that not only did I get the name and details about the short story correct, but that they have since written a novel, a play, and a movie.<br /><br />Personally, I think the story was perfect in its original form, (a collection of "progress reports"), and feel the adaptations would just take away from it. (in the same way that the movie adaptation of "Bridget Jones Diary" did so horrendously)<br /><br />I even found a copy of the original short story posted online, in case you haven't read it:<br /><a href="https://www.educ.kent.edu/community/DOCWHIZ/rdng4.html">https://www.educ.kent.edu/community/DOCWHIZ/rdng4.html</a><br /><br />As I said, it is a great story and a must read, but I hope I do not share any similarities with his fate.<br /><br />Another thing that strikes me as odd, is why can I remember the name and details of a story I read 25 years ago so clearly, but not what day it is, or anything else recent?<br /><br />One thing I had hoped to do once I got this computer working, was to begin the preliminary steps of writing a screenplay, loosely based on my life, titled 'falling through the cracks' (or something like that but more clever). At the moment, I now realize I am not even remotely capable of such an endeavor. I can only hope that things improve somewhere down the road.<br /><br />I also want to read that book Mom told me about, about writing, by Stephen King. Do you have a copy of it you can send me? I wonder if that is available online too?<br /><br />I wonder if the slight "lifting" of the mental fog I have been experiencing for brief moments over the past two days can be attributed to the colloidal silver i took? I wish the damn medical community would get off their asses and do something about this so I dont have to figure it all out for myself! (using myself as my own gineua pig). hmm... They have a lot of nerve being so arrogant towards those who "self-diagnose" and "self-treat" when they leave us no other choice for obtaining any kind of treatment.<br /><br />d<br /><br />----------<br />From: <span style="font-weight: bold;">D.D.</span><br />Date: Sat, Aug 25, 2007 at 11:20 AM<br /><br />Dave,<br />Stop sending me book long e-mails about anything. I will never have time to read these things with how busy I am, and I have no money and I'm in serious trouble for it. What do you expect me to do about your situation? The more you try to make yourself seem totally incapacitated, it makes me just give up trying to think I can do anything to help. If you want to just give up on life altogether, there isn't anything I can do about it. It makes me sad, but there really IS NOTHING I CAN DO ABOUT IT! Stop it! I won't have any money for a long time, and if you have given up doing anything for yourself, nobody is going to waiste their time flushing energy down the toilet trying to help. I'm ready to tell you the same thing I did before, don't write e-mails telling me how fucked you are. If that's what you think, then you are fucked, and there isn't anything I can do about it. If you had something positive to say, maybe I could react in a positive way. If you are convinced that you are fucked for life, then you are, and you will only bring me down with you. I can't do that, Dave. I worked so hard to have my wife and what little free time I can come up with to visit her. Any thing you ask of me will cost me time with my wife, so I just can't do that. STOP IT! YOU CAN HELP YOURSELF! People have no legs on wheel chairs and they work. I told you before, if you would just demonstrate that you can get any kind of work at a temp agency, or anything, maybe people would see that you are trying and give you some help. If I decided to stop working, do you think anyone would give me money? Would you give me money if I was in your situation? No? then why should I give you money? That isn't how life works. I was happier after I told you not to talk to me anymore, and you stopped trying to manipulate me for money. I felt bad that I wasn't hearing from you, and I was worried, but it was easier that having to be petitioned daily for money. O.K., Dave, so lets say you are right, and you have this Morgellons Disease, WHAT THE HELL DO YOU WANT ME TO DO ABOUT IT? THERE IS NOTHING, AND THERE WILL NEVER BE ANYTHING I CAN DO ABOUT IT! HELP YOURSELF! My life is too full of responsibility, and my relationship with my wife suffers. I am working on moving to Brasil so I can live with my wife. take care of yourself! I really hope you do. Life has always been something that if you think good, good positive things happen, if you think bad, then bad is what you get, and we're all going to die anyway!<br /><br /><div class="gmail_quote">----------<br />From: <b class="gmail_sendername">Me</b><br />Date: Sat, Aug 25, 2007 at 12:20 PM<br />To: D.D.<br /><br /><div>D,<br /><br /></div> <div> </div> <div>I excitedly opened your email the moment my computer notified me that it had arrived hoping that perhaps you might have offered some words that may cheer me up. A simple "hang in there david, be strong" would probably have done the trick, and helped me feel less depressed and alone.<br /><br /></div> <div> </div> <div>Nowhere in this email, any previous emails, or by any other form of communication, have I EVER asked you for money! You clearly have me confused with someone else. I sent you that email because I thought you cared about me and would want to know what is happening to me, not to glean money from you. I'm sure there are a lot of temp agencies that will allow you to sleep whenever you need to, and give you a job with blood and other "things" pouring out of your orifices, can only type 5 wpm, and be unable to think clearly, or complete a sentence without losing your train of thought. I will try not to remember your poisonous words the next time I am out walking the Golden Gate Bridge. Don't worry though, I'd be too scared to jump off (as I found on my previous walk). When I'm unable to tolerate these conditions anymore, I think some of Dr. Kevorkian's useful tips that I've downloaded from the internet will be the way I'll handle things instead.<br /><br /></div> <div> </div> <div>I can't sugar-coat the details of my life so that you aren't 'distracted'. If this hate is truly what you feel towards me, then I really don't care to hear from you again. The LAST thing I need in my life right now is further negativity from you.<br /><br /></div> <div> </div> <div>Was this one short enough not to inconvenience you?<br /><br /></div> <div> </div> <div>Have a nice life brother.<br /></div></div><br />----------<br />From: Mom<br />Date: Sat, Aug 25, 2007 at 5:15 PM<br /><br />David<br /><br />Of course, I've read "Flowers for Algernon" and seen the movie, a long time ago. They're both classics. I haven't had time to write because since it's the beginning of the school year, I've been really swamped. I'm also trying to learn a curriculum that I've never taught before and a computer grading system (PowerSchools) that I've never used before. So I've been up every night until at least midnight and I have to get up at 5:00 a.m., teach all day, do it all over again each night. Exhausting! Hopefully one of these days I'll start to get caught up. We just finished the second week of school.<br /><br />Well, I have a huge stack of papers to grade, and then I have to figure out how to enter the grades into the program on the laptop the school gives me.<br /><br />I wish I could be of some help to you. I really feel helpless from here and don't know what to do.<br /><br />Love, Mom<br /><br />----------<br />From: D.D.<br />Date: Sun, Aug 26, 2007 at 12:35 AM<br /><br />Dave,<br />Do you realise I have been planning to help you after I get my money, but I didn't want to tell you, because you won't try to help yourself? I will fix the subaru after I'm done with it around January, and then get you into your own house with 12 months paid. I've been very realistic telling you the things in my other e-mails. If you insist on giving up and being negative, how can you expect anyone else to take care of you? Don't tell me you're going to jump off bridges trying to manipulate me. It just belittles both of us. Do you understand that every time you send me all this negativity, I can't eat all day, and get overloaded with stress. There isn't anything I can do to help you right now, and I'm very busy until January. It's going to be the hardest year I've ever had, so please don't make it worse with all the negativity. It would be nice if you had something positive to say for once. I've had enough of this trauma to distract me for a while now, thanks. try to at least keep in mind that you are distracting me from getting my work done so I can even help you out as long as you send me negative e-mails, and I will feel like I'm waisting my effort the more negative you are. If you have given up on life, there isn't anything I can do but be sad about it.<br /><br />----------<br />From: S.B.<br />Date: Mon, Aug 27, 2007 at 10:24 AM<br /><br />It is good to know that you are making progress, even if you don't realize it yourself.<br /><br />One thought. my doctor has put me on something called Concerta, which is an ADD medication. It has helped with my ability to concentrate and consequently with my memory. We had tried a different medication earlier, Strattera, which had worked substantially better, but that one had caused some dangerous side-effects for me and had to be discontinued. Perhaps an ADD drug might help with your concentration, or fog, issues. The fog you describe is very familiar to me. I also lose track of time very easily since the stroke.<br /><br />Please keep in touch.<br /><br />S<br /><br />----------<br />From: <span style="font-weight: bold;">Me</span><br />Date: Wed, Aug 29, 2007 at 9:18 PM<br /><br />Hi Family,<br /><br />I have left D.D. off the recipient list on this one, as he only wants positive news apparently, and I really don't see any purpose in continuing to include him on these "updates". Whether good or bad news, I never know how he will react, and it sounds like he has enough on his plate right now anyway.<br /><br />I wandered upstairs yesterday around noon (something I RARELY do anymore), as doing so usually guarantees interaction with my landlord Bob who is usually drunk. As I had feared, I ran into him, but thankfully he was not drunk. In fact, he reminded me that I had a Doctor's appointment! Amazing! So important to me, yet it simply hadn't occurred to me at all! I quickly printed out all the documents I needed, using Bob's computer (CDC letter, Mayo Clinic letter, OSU letter, and several pages from the <a href="http://www.blogger.com/morgellonstreatmentsteps.com">morgellonstreatmentsteps.com</a> website, including her theories about Chlamydia Pneumonia (being the cause of Morgellons). It's amazing in itself that I recalled, quickly even, all those items that I wanted to show the Doctor, before I rushed down to her office. After waiting 2 hours in the waiting room (during which time none of the 30 or so people in the waiting room was seen) I was told by the receptionist that my appointment had actually been the previous week, and that the doctors do NOT see people without an appointment. No exceptions. I attempted to appeal to their humanity or sense of reason, and was rebuffed on both counts. Having a condition that makes it difficult to remember appointments is NOT a valid reason for missing appointments apparently, and NOTHING is valid reason to allow for the suppression of red tape usage in that office.<br /><br />I am now scheduled for September 4th at 2pm. My missed appointment from last month with the Psychiatrist, Dr Moranville, whom I have not yet had the pleasure of meeting, is now set for Oct. 1st, at 8:45am. I explained that in my present condition I am quite fatigued and "sleep a lot", and that experience has taught me that my odds of making it to a later appointment are better (if only for the reason that it allows more opportunity to remember or be reminded of the appt.), and asked if there were any other appointment slots available later in the day? There weren't.<br /><br />I left there rather perturbed, but still had the presence of mind to stop by the G.A. (welfare) office to jump through whatever hoops I had to to get my benefits restored again before Friday's deadline (after missing my last two appointments for "re-qualification"), and re-apply for food stamps (which automatically ended last month as they do every 3 months). Both my CAAP (cash benefit) worker, and my FS (food stamp) worker are on vacation, which means I am probably screwed on the CAAP (which means no check on the 1st, and no more colloidal silver), but I was at least able to submit the form to extend food stamps for 3 more months. HOWEVER, the worker who took my form from me saw my CAAP forms and said "Oh, you get a cash benefit too? You need to report that as "income" on your food stamps application. That will probably reduce your monthly food stamp benefit (of $155) by half, and if you have not been including that on previous applications, they may suspend all your benefits until the amount you were overcompensated has been corrected.<br /><br />So, now I have either 50% or 0% of my food stamps coming on the 1st and NO cash benefit.<br />Such a productive day! So glad I went down there to those two offices to get everything sorted out in person. It's always better to do these things in person I've always found, don't you think? At least it was when I lived in the real world. I've apparently crossed over into the twilight zone though unfortunately so I guess that doesn't apply here.<br /><br />In other news, the benefits I attribute to having taken the colloidal silver (which I am out of) are now fading unfortunately, and my thinking has been murkier today than it was yesterday.<br />So, how has your week been?<br /><br />d<br /><br />----------<br />From: Mom<br />Date: Wed, Aug 29, 2007 at 9:58 PM<br /><br />Yes, I guess D "can't handle the truth". I will write those appointment dates on my calendar so I can email you to remind you ahead of time, if that will help. It seems to me all their psychiatrist appointments are at 8:45 a.m. That probably just means they schedule everyone for that time and everyone who actually shows up just sits in the waiting room and gets seen one at a time until the doctor has seen everyone. What do you want to bet?<br /><br />I boxed up some razor blades I had bought for you, along with a sample of the razor that we got in the mail, so you should be receiving that. It's that Gillette--I already forgot the brand.<br /><br />I'll let you know what we find out after Bob has his appointment on Friday to find out the results of his bone marrow biopsy that he had three weeks ago.<br /><br />Love, Mom<br /><br />----------<br />From: Mom<br />Date: Thu, Aug 30, 2007 at 10:34 PM<br /><br />How about if I take the day off September 4th and come to SF to accompany you to your dr's appointment at 2:00? I could fly in for the day, take a cab from the airport to your place, pick you up, we could go to the clinic, then call another cab when you're finished.<br /><br />BTW, did D come to see you today?<br /><br />Mom<br /><br />----------<br />From: Me<br />Date: Fri, Aug 31, 2007 at 10:41 AM<br />To: Mom<br /><br />no, D didn't come. i called him to see what was up and he started yelling in my ear about all of his stress. i kept it civil, and attempted to steer him towards a productive conversation, but didn't get much. first he said that he was too busy to come, then he told me he had to come, but wouldn't have time to see me.<br /><br />as for the 4th, i will be there with bells on if i can just remember. call me and email me in the days leading up to the appt, and that should be fine. lets save the visit for something more important (like an SSI hearing or something) btw, i turned on my cellphone, so you can also call me now: 415-XXX-XXXX<br /><br />dDave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com1tag:blogger.com,1999:blog-2180465743998260270.post-50493476178566030572007-07-16T23:50:00.000-07:002010-07-26T00:23:56.345-07:00Missed Appointments and Facial LesionsMom,<br /><br />I missed my doctor's appointment because I remembered the date wrong. It turned out to be on the 9th. These things are so far out when they schedule them they are impossible to remember. Heaven knows what I do with the appointment slips.<br /><br />My condition has worsened, and I now have lesions on my face, as well as most of my body, and am in constant misery as far as that goes. The "infection" is definitely in my respiratory system, as every time I blow my nose, it is accompanied by a tickling/crawling sensation, in/on/and around my nose, and there are lesions in that vicinity. The organisms have been getting into and irritating/stinging my eyes quite a bit lately as well.<br /><br />I was supposed to report to the GA Office on Friday the 13th to supply a doctors note or other evidence to support my claim of disability, which I wasn't able to obtain because I missed my Doctor's appointment, so I was hoping to get an extension. Just as I was leaving the house on Friday to go to my appointment, there was a police raid on the house, and I was handcuffed, searched, and prevented from leaving, as were the other occupants of the house while the police conducted a search warrant on the entire house for a few hours. I have no idea what they were looking for, but 3 people in the house were arrested for drug related offenses based on things found in their rooms and on their persons. By the time the police finished the search, and released myself and the others, it was too late to go to the GA office, which meant that my welfare benefits would be terminated. (If you miss your appointment with GA, your benefits are terminated, and you have to wait 60 days before you can start the application process again from the beginning, during which time you get no benefits)<br /><br />HOWEVER, I went in today without an appointment (and waited for 4 hours to see someone), with a copy of the search warrant that the police gave Bob, which was dated the same as my appointment, and was able to convince them, not only to restore my benefits, but also to give me a 3 month extension on providing a doctors note supporting my claim of disability! This was a BIG relief!<br /><br />I have found a credible (in my judgment) website that details a comprehensive approach for combating the skin related issues related to Morgellons, posted by a fellow sufferer, and I have started following some of the tips, which seem to make a slight improvement and provide a small amount of relief. I will have to buy the rest of the products (not cheap) mentioned in order to fully check it out, but I have high hopes. I just have vinegar, peroxide, selsun blue, and salt<br />now (not enough for a bath) and have using the "spray method" detailed on the website. You can check it out yourself at:<br /><br /><a href="https://www.morgellonstreatmentsteps.com/Morgellons_Topical_Treatmen.html" target="_blank">https://www.<wbr>morgellonstreatmentsteps.com/<wbr>Morgellons_Topical_Treatmen.<wbr>html</a><br />(This website is no longer active as the owner of the site was threatened to take it down or face fines or imprisonment due to the fact that it recommends treatment for a medical issue without medical license to do so. This is a pitiful example of how it seems the Medical system is set up to HURT us rather than help us.)<br /><br />My last problem is that my cellphone is eating up WAY too much money! I NEED to get a PC running again so I can use email and Skype instead of my cellphone. I have been without a working computer for almost 5 months now!<br /><br />I actually have all the working components of a Pentium 4 computer except for one item. I DESPERATELY NEED A PENTIUM 4 MOTHERBOARD! (Dell wants $250 for a new one. Hell, I could buy a used computer for that!) I have two Intel processors that I believe still work, (The 1.8Ghz Pentium 4 from my Dell, and a 2.4Ghz Celeron) and 512MB of one type of RAM (a DIMM with two indentations) and 256MB of another (a DIMM with one indentation). Obviously it would be best to find a board that is compatible with the 2 indentation RAM. I have a monitor, several empty PC chassis, various cards including several monitor cards, ethernet cards, and even a WiFi PCI card. Can you PLEASE check with K and B, and see if anyone has a working motherboard they are no longer using? I could cut $50-$80 a month out of my monthly budget if I had a working PC!<br /><br />I still need to get a new hard drive, but I see that goodwill's downtown location has used ones for $20. Then it looks like I will have to buy Windows XP once again, as it appears my Windows XP Installation Disk and License Key were amongst the items that were stolen from my room while I was in the hospital. But, initially I should be able to borrow someone else's XP disk to get things up and working and then run for a while using the 30 day evaluation version. At the end of the 30 days you can reformat your hard drive and get another 30 day trial period. As long as I have a spare hard drive to back up my data, this can be an effective way to run until I can afford a new copy of XP. ($100)Dave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com0tag:blogger.com,1999:blog-2180465743998260270.post-3330919043665069862007-03-25T09:42:00.000-07:002010-07-31T13:27:35.010-07:00Two Trips to the Emergency RoomIn February I decided to visit the ER of the UCSF Medical Center (the closest hospital to my home) after yet another "ocular invasion" (attack of the eye), during which my eye swelled shut with intense pressure, and felt like it was continually being pricked by 1000 needles at the same time. At this time I was starting to lose my hearing as well. By the time I became fully aware of it, I estimate that about 50% of my hearing was gone. (Within 2 weeks my hearing slowly returned to normal, although there have been many recurrances of this since then)<br /><br />After an 8-10 hour wait, they examined me and noted that my eyes and ears did seem to have some kind of infection. They told me to go see an E.N.T. (Ear Nose Throat) Doctor and then discharged me. (I never went to see an E.N.T.)<br /><br />Before the doctor discharged me, he happened to mention a word to me which I had never heard before. "Morgellons". He did not elaborate other than to say that one of the former physicians in at UCSF had left his practice to start a clinic or research center to study "Morgellons".<br /><br />He did not explain what Morgellons was, but implied that I should do some research about it. I asked him to write the word down for me, so I'd know what to look up. He wrote a single word down for me on a piece of paper. "Morgollons" (It was misspelled, but I figured out once I got home that he must have meant "Morgellons") I still have that paper around here somewhere!<br /><br />He acted like what he was telling me was "hush hush", and then discharged me shortly afterwards. This intrigued me to the point that I immediately looked up the word "Morgollons" when I got home. (and then Google suggested "Morgellons" instead)<br /><br />At first it was difficult wading through all sorts of sites offering various snake-oil remedies for Morgellons, but finally I found some legitimate sites, and some research articles written by Ginger Saveley, FNP.<br /><br />THIS WAS IT! Finally! my symptoms outlined perfectly! After 2 years of inexplicable symptoms that didn't add up, I believed I finally had an explanation! Why had I been unable to find this info before? I suppose it must be because most of my previous google searches included the word "Parasite".<br /><br />I began to spend almost every waking hour researching this new lead, until I became certain that THIS was at last the explanation for all my mysterious symptoms!<br /><br />THEN, about a month later, during which time I only left my room occasionally to eat, and had no other real social contact, I suddenly realized that I was turning yellow! My skin was yellow, my eyes were yellow, and I felt much more awful than usual.<br /><br />I headed back to the ER at UCSF Medical Center. This time they admitted me, (after making me wait for about 14 hours in the ER waiting room) and ran all sorts of tests for 6 days ($40,000 worth according to the bills they still send me), before they concluded that I had Hepatitis A, and sent me home.<br /><br />In retrospect, I recall that during my prior visit to the ER a month before, I used a filthy toilet in the Hospital lobby. Since all of the toilets were in atrocious shape (some with vomit, others with fecal matter) I carefully selected the least horrifying toilet, having to clean some fecal matter off the seat with toilet paper before using it.<br /><br />I believe this is how I must have come by my Hepatitis A infection. A <a href="http://en.wikipedia.org/wiki/Nosocomial_infection"><em>Nosocomial Infection</em></a>. As if I didn't have enough problems without that! You'd think in a hospital full of sick people they'd do a better job of cleaning the toilets!<br /><br />The good thing that came out of all of this was that I was able to discuss my symptoms in depth with several doctors at the hospital during my stay, and they ran a battery of tests for me. Unfortunately none of them were familiar with Morgellon's. While they eventually came to the conclusion that I was suffering from Delusions of Parasites, just as the previous doctors I had seen did, at least they bothered to take a scientific approach, and run some tests first. (One theory they were considering for my Jaundice was a parasitic blockage)<br /><br />While I gained no further insight into my illness, I had at least gotten an extensive battery of tests that ruled out other possible causes such as HIV, Hep C, cancer, etc.<br /><br />While I still was suffering from all of the symptoms that I attribute to Morgellons, and no closer to finding a solution, at least I could take comfort in the fact that all my tests seemed to indicate that I was healthy of all the other conventional diseases.Dave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com0tag:blogger.com,1999:blog-2180465743998260270.post-15037252976440904892007-02-25T05:42:00.000-08:002010-07-31T09:38:45.395-07:00Seeking HelpDear Nurse Practioner Ginger Savely:<br /><br />I have forwarded the following message (quoted after this message) that I previously addressed to a parasitologist at USCF. I never received a response.<br /><br />I came across your name recently on the internet, and was delighted to read about your work.<br /><br />I live here in San Francisco, and my health is inexplicably deteriorating rapidly.<br /><br />A recent trip to the USCF ER proved fruitless, although the ER Doctor for some reason, in a very brief departure from his skepticism, happened to mention the word "Morgellons", a term I had never heard before. He "could not see" the fibers present around my eyes, which astonished me (because myself and other people can see them), although he did say my eyes appeared to be "infected".<br /><br />I wonder if this may be related to Strongyloides?<br /><br />Please contact me at your earliest convenience.<br /><blockquote>Sent Mon, Feb 5, 2007 at 4:47 PM<br />To: Dr. Locksley<br /><br />Dear Dr. Locksley (Parasitology Department, UCSF Medical Center):<br /><br />I ran across your name and contact info while searching for answers online about a condition I have developed. I am hopeful you may be able to steer me in the correct direction.<br /><br />I believe I have contracted some type of worm-like parasite that seems to be infecting my upper respiratory system, and I believe has been responsible for at a couple of recent ocular invasions. The parasites, which resemble very thin hairs or fibers (that move), and occasionally small flesh colored lumps, appear to be most present in or around the region of my eyes, ears, and nose, as well as above and below the skin in many other regions of my body. One trait I have noticed is that the parasites seem to gather around the edges of my eyes, seeming to attach themselves to my eyelashes (and other follicles). I have also noted their presence in my urethra and my stool.<br /><br />Am I describing anything you are familiar with?<br /><br />Can you please suggest an appropriate course of action? I have already visited the Tom Waddell clinic (after my first ocular invasion) and let’s just say that the Doctor there didn’t seem too familiar with parasitic infestations, beyond those created by mental delusions.<br /><br />I am certain that this is not delusions of parasites, and have physical evidence, and people who have witnessed physical aspects of these 'parasites', to support me in that regard.<br /><br />Can you please suggest an appropriate course of action? Would it be apropos for me to visit the UCSF Medical Center ER?<br /><br />Thanks in advance for your time and consideration.</blockquote>----------<br />From: <span style="font-weight: bold;">Ginger Savely, FNP</span><br />Date: Sat, Feb 25, 2007 at 2:11 PM<br /><br />Dear David -<br /><br />I have attached the necessary paperwork to become a patient of Ms.<br />Savely's. As soon as we receive your completed forms we will contact<br />you by email to offer you an appointment.<br /><br />By the way, Morgellons is NOT strongyloides - this has been proven at<br />the DNA level.<br /><br />Looking forward to hearing from you,<br /><br /><name>Office Manager for<br />Ginger Savely, RN, FNP-C<br /><br />----------<br />From: <span style="font-weight: bold;">Me</span><br />Date: Sun, Feb 26, 2007 at 4:33 PM<br />To: Mom<br /><br />I just received the forms from Ginger Savely, filled them out and faxed them in.<br /><br />WOW! Very enlightening. The symptoms listed on the forms describe EVERYTHING I have been dealing with down to the most minute detail!!! from the mental fog to the fatigue, to the fleshy lumps on my head! I have never seen ALL of my symptoms listed in one place before!!!<br /><br />Any remaining doubt that I may have had that Morgellons is what I am dealing with varnished while I was filling out those forms.<br /><br />BTW, Unfortunately a $500 deposit is required (by credit card) to even MAKE an appointment!<br /><br />----------<br />From: <span style="font-weight: bold;">Mom</span><br />Date: Sun, Feb 26, 2007 at 5:06 PM<br /><br />David<br /><br />How do you know how much treatment costs? I don't see anything about that on your communications.<br /><br />Mom<br /><br /></name>----------<br />From: <span style="font-weight: bold;">Mom</span><br />Date: Sun, Feb 26, 2007<br />To: Ginger Savely, FNP<br /><br />My son, David Franklin, who lives in San Francisco and is 36, emailed you recently about symptoms he has been having for some time and which have steadily been getting worse. You sent him some forms about Morgellons Disease (Morgellons Questionnaire, Disability Scale, and Clinical Signs and Symptoms). He has emailed me that in order to get treatment through your<br />office he will need to bring in an initial payment of $500, plus $800 for lab fees, plus any prescriptions deemed necessary, plus $250 for each subsequent visit. He said he read this on one of the forms you sent.<br /><br />David has been unemployed for some time due to his illness, and he needs to apply for<br /><span class="il">indigent</span> health care, if he qualifies for that. I don't know what the program is called in California (I live in Arizona). Is it Medicaid? Right now he has no job, no money, no car, and no health insurance, but he is too ill to work. Does your office have a social worker or someone who can help him apply for benefits like this? If not, do you accept patients who cannot pay, or do you negotiate your fees? Do you ever accept patients and negotiate a repayment schedule based upon their ability to pay in the future?<br /><br />I want to come from Arizona to help David in any way that I can, such as driving him to an appointment, talking to a social worker or members of the health care team, or picking up prescriptions for him. However, I will only be able to stay for a couple of days at a time so I need to schedule as many things as possible during my visits. Any assistance you can give me with these questions would really be appreciated.<br /><br />Thank you,<br /><br />K.F.<br /><name><br /></name>----------<br />From: The Office of Ginger <span class="il">Savely</span>, FNP<br />Date: Monday, February 26, 2007 7:03 PM<br />To: K.F.<br /><br />Dear K - Unfortunately, for many complex reasons, we do not take Medi-Cal (that's what it's called here). We have at least 5 patients a day asking for free care or sliding scale. It's impossible to choose and not being able to handle all of that free or low cost care we simply can't take any. I am so sorry. Please write to <a href="mailto:ccaseyrn@hughes.net">ccaseyrn@hughes.net</a> for advice. She is the nurse who works with Ms. <span class="il">Savely</span> and also maintains an email counseling service for Morgellons patients. I think she may know of someone in Oklahoma who could help, but I'm not sure. Good luck to both you and your son.<br /><br />-B<br />Office Manager for Ginger Savely<br /><name><br />----------<br />From: <span style="font-weight: bold;">Mom</span><br />Date: Mon, Feb 27, 2007 at 3:55 PM<br />To: Me<br /><br />David<br /><br />I think the priority for my first visit should be to get you enrolled in as many social services that you are eligible for as we possibly can, especially Medi-Cal. That way you'll have a way to pay for medical services.<br /><br />Since Ginger Savely's work is controversial, according to research I've been doing on the internet, I'm not sure her services are covered even by Medi-Cal. Therefore, it might be better to take you in to a family practice physician whose fees would be lower for an initial visit. That way I would be able to afford the out-of-pocket expense for the doctor and medication, and you would be able to get started on some treatment, such as something that would help your itching and whatever else the doctor thinks you need. You should certainly tell the doctor (or nurse practitioner, if that's who you see) about all of your symptoms (you could fill out that questionnaire you got from Ginger Savely's office and give them that--we can make copies of the form you fill out to use in case we eventually need to see more than one physician), and they may need to consult with someone else or refer you to someone else for follow-up.<br /><br />Bob and I certainly can't afford to pay $500 for a visit plus $250 for subsequent visits, especially if treatment takes an extended period of time with her methods. If you read some of the blogs about her, many people who have been treated by her claim that she is a total fraud, ripped them off, they got treated successfully finally somewhere else for much less money, etc., etc. Others, of course, swear by her treatment and even continue to come to see her from Texas, where she was previously. But those are people who can afford to pay her.<br /><br />Bob did some research on getting qualified for disability under Social Security, and it is really difficult. You have to be certified by several physicians under the SS criteria, and you have to go through a few appeals processes, so of course you would need to be able to pay for those doctor visits, or have insurance that pays for them, before you could get to that point. That's why getting you enrolled is so important as a first step.<br /><br />Love, Mom</name>Dave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com2tag:blogger.com,1999:blog-2180465743998260270.post-7938121265370915552007-02-24T02:36:00.000-08:002010-07-24T04:19:00.518-07:00Neverending flu-like symptomsMom,<br /><br />I don't know what I have, except that I'm in very bad shape, it doesn't seem to be getting better, and I am starting to have some grave concerns. Presently I don't have the strength, or clarity of thought to do anything but ride it out, and even that is excruciating and intolerable. I just need this to END! As I said, I don't even have Tylenol. (I HAD a full bottle of Ibuprofen 600, previously prescribed to me, that someone seems to have absconded with) I don't know why, but I have had this horrible taste in my mouth all week. Quite nasty. Water sure doesn't guise it.<br /><br />I am not weighing myself, but am aware that my weight must be dropping quickly. I am starting to wonder how long I am capable of continuing this way. (probably longer than I can imagine)<br /><br />What I could really use right now is some excedrin or something like it, LOTS of juice, and or Soda, and soft food of some sort.<br /><br />Any chance you'd be willing to overnight a gift card from Walgreens or Rite Aid? (cash simply disappears in the post around here unfortunately) I could get some headache medicine, juices, something soft to attempt to eat, and some razors. I could probably even pick up a cheap set of hair clippers. (mine broke last month, and I am starting to look like the wild man from Borneo, between my hair and my unshaved beard)<br /><br />Then the only challenge will be getting myself to the store (no small feat). Perhaps I can send someone with a list and the card.<br /><br />My roommate Mel finally took notice of my plight yesterday, and brought me several glasses of water, and some tomato soup. I was unable to eat very much of the tomato soup, as it made my stomach "burn", as you heard the result of when I called you this morning.<br /><br />As soon as I am well enough I need to go to GA to apply for food and cash assistance which I am told I would qualify for, (the food stamps I would get same day) but there hasn't been a moment this week where that has been the case (to say the least). It is a several hour-long project stepping foot in the door of that office anyway, and I'm not feeling well enough for that at all.<br /><br />Oh, one more thing, the results of my blood tests performed at the ER should be ready now, although I have no idea what tests were performed. I was told to "check back in a week" to get the results. I DO know that while the ER Dr. was much more professional than the last guy, he was quite skeptical of the idea of parasitic infection (and stated such) simply in general due to its "rarity", so who knows if any tests for parasites were actually performed.<br /><br />Anyway I have to get back to bed. Feeling nauseous again, which is excruciating if I am not hydrated enough for it to be productive (dry heaves), as I have learned the hard way, so I'd better rest.<br /><br />I'll check messages again when I can.<br /><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <span style="font-weight: bold;">Me</span><b class="undefined"></b> <span dir="ltr"><hybridadvice@gmail.com></hybridadvice@gmail.com></span><br />Date: Sat, Feb 24, 2007 at 4:59 AM<br />To: Mom<kathy.a.franklin@cox.net><br /></kathy.a.franklin@cox.net></span></span><br /><div>one more quick update on a positive note: after going downstairs I was famished, and decided to reheat the tomato soup that Mel made me. I was able to sip it slowly in its entirety, and it seemed to go down okay this time. Feeling brave I then prepared a BLT, being careful to cook out all the grease from the bacon before using it. (in the microwave) I was able to eat half of this, and decided to save the rest for later rather than overdo it. I feel a LOT better to say the least, and my headache appears to have let up for a bit as well.<br /><br /></div> <div> </div> <div>Now that my head isn't hurting so badly, perhaps I can attempt TV, which may help me take my mind off my discomfort.<br /><br /><span style="color: rgb(0, 0, 0);">At some point I will try to assess the damage to my Dell. I have brought it back from the dead many times before, (including once after the entire computer was smashed into a dozen pieces on a concrete floor, requiring 2 weeks of soldering work to make it functional again). The burning question is what components will require replacement this time, or has their time in the open air been enough to undo the damage caused by the iced tea (doubtful). The hard drive went down making a horrible noise after the tea was spilled, but then that's a noise that most things might make when you pour liquid into them while they are spinning at 5000 rpms or so. Generally not considered a good thing to subject a hard drive to though.</span><br /><br /></div> <div style="color: rgb(0, 0, 0);"> </div><div style="color: rgb(0, 0, 0);"> </div> <div style="color: rgb(0, 0, 0);">I wonder if Nurse Practitioner Ginger Savely's office is open today? I think I'll look into that before I log off Bob's computer.<br /><br /><div>BTW, How far are you from the status of "Nurse Practitioner" yourself? Not a title you hear too often. Is that because they are basically Doctors that differ in practice or doctrine officially sactioned by the AMA? If so, I like the sound of it already! A Doctor capable of open-minded and independent thought! </div> <div> </div> The ER Doctor at USCF Medical Center who mentioned "Morgellons" to me, albeit skeptically, but obviously for a reason, also mentioned a doctor who had left his/her practice at UCSF to pursue treatment of this "disease". I wonder if that could be Ginger Savely?<br /></div><br /><span style="color: rgb(0, 0, 0);">----------</span><br /><span style="color: rgb(0, 0, 0);" class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Mom</b> <span dir="ltr"><kathy.a.franklin@cox.net></kathy.a.franklin@cox.net></span><br />Date: Sun, Feb 25, 2007 at 10:24 AM<hybridadvice@gmail.com><br /></hybridadvice@gmail.com></span></span><br /> <div bg="" style="color: rgb(0, 0, 0);"> <div><span style="font-family:Comic Sans MS;">David<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">I only have an associate (two-year) degree in nursing. A Nurse Practitioner is like a nurse with a Master's degree, specializing in some area of medicine. They are licensed to practice medicine in that area, including prescribing medications, under the supervision of a physician (meaning the patients and what they do is reviewed and discussed on a regular basis with a physician). You do hear the title "nurse practitioner" all the time now (at least in Arizona), because if you go into a hospital or doctor's office, chances are the first person you'll see for treatment is a nurse practitioner (NP) or physician's assistant (PA), which is a similar thing, only that person is not a nurse, just like an assistant doctor. A PA also has a Master's degree.<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">Fill out those forms and send them back so you can see Ginger Savely. Then you won't have to deal with skeptical people anymore who don't know what they're talking about.<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">I think you need me to come to SF and help you take care of getting things done, such as getting down to get your GA application and your check, getting your lab work results, etc. When would be a good time?<br /><br /></span></div> <div> </div> <div><span style="font-family:Comic Sans MS;">Love, Mom</span></div> </div><br /><span style="color: rgb(0, 0, 0);">----------</span><br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Me</b> <span dir="ltr"><hybridadvice@gmail.com></hybridadvice@gmail.com></span><br />Date: Sun, Feb 25, 2007 at 4:32 PM<br />To: Mom<kathy.a.franklin@cox.net><br /></kathy.a.franklin@cox.net></span></span><br /><div>I think you are right about coming here. I need help.<br /><br /></div> <div> </div> I am beyond my wit's end. Please come soon. When are you available? Don't make hotel reservations for more than a night or two. Once you get here I can help you secure a room for the duration of your stay in the $50-$60 range. In fact, I can possibly find a 2 room/and or bed setup of around that price. I could really use a break from this place if that works for you.<br /><br />dDave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com0tag:blogger.com,1999:blog-2180465743998260270.post-6715611166438745892007-02-02T10:41:00.000-08:002010-07-27T05:02:47.878-07:00First Realization of Possible Parasitic Infection<span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">S.B.</b><span dir="ltr"></span><br />Date: Fri, Feb 2, 2007 at 10:41 AM<br /></span></span><br />How are you doing? I haven't heard from you in awhile. --S.<br /><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Me</b><span dir="ltr"></span><br />Date: Sat, Feb 3, 2007 at 10:31 PM<br />To: <span style="font-weight: bold;">S.B.</span></span></span><br /><br />Sorry for not communicating in a while. Things are quite miserable.<br /><div class="gmail_quote"><br />It seems that I have some sort of worm-like parasite that I no doubt contracted from my cats or my former dog. (possibly years ago)<br /><br />I became aware of this fact back in early January when a multitude of the parasites attacked one of my eyes for some unknown reason. The horrifying realization came when I noted that they seemed to be coming from INSIDE my eyelid.<br /><br />Trying to extricate them proved to be a hazardous and fruitless endeavor as it resulted in damage to my eye both as a result of my efforts, and due to the fact that the "worms" (resembling very thin fibers) seemd to be burrowing into my eye, which was extremely painful to say the least.<br /><br />I immediately went (by bus) to the Tom Waddell clinic, and sat painstakingly for 6 hours in their dirty little waiting room surrounded by hunched over, crazy homeless lowlifes, all of whom wanted to "chat".<br /><br />I finally got in to see the "Doctor", who interrupted me 20 seconds into my description of the issue, before I could even BEGIN my explanation of what it was that I felt I had, by him telling me that he didn't see anything present that he could diagnose. I explained that they were transparent/translucent, difficult to see, and happened to NOT be crawling out of my eye at present, but seemed abundant in numbers, and would certainly show up under a microscope, and or with any other type of test they must have for such a thing.<br /><br />He repeated that he saw nothing he could diagnose, then he gave me a number for Mental Health Services and fled the room. Two orderlies showed up shortly thereafter to expedite my departure.<br /><br />I have never felt so humiliated in my life.<br /><br />Shortly after I arrived home, after another very long, very uncomfortable bus ride, several small maggot like shapes (that were not moving) began to drop out of my left eye, just as my brother dropped by to say hello on his way back north to his home (he had been in AZ and L.A.) He was quite horrified to see my condition and situation, and since his visit my whole family calls on a daily basis to prod me to go back to another doctor or ER.<br /><br />I had enough trouble getting myself to see a Doctor the first time, and find the possibility of a repeat occurrence of what I went through to be an unfathomable idea.<br /><br />I have pretty much been locked in my room since then, coming out to eat and use the restroom only.<br /><br />I have been researching various parasitic candidates online, but am unable to lock it down to one. There is very little information available. Most of what I find comes from Vet websites, all of which strongly warn against the danger of human infestation from pets (although when I call a doctor's office they act like I am crazy when I mention that I believe that I caught<br />a parasite from my pets).<br /><br />It is my birthday today, but I have not left my room except to eat and urinate. I am miserable, depressed, extremely uncomfortable at all times due to the infestation. (they are now present in my eyes, ears, and nose, and seem to have a strong presence in my upper respiratory tract) In spite of their ever increasing presence, they are still not easy to see due to their size, (they are extremely thin - thinner than hairs), although I have identified some specimens under my skin that are several inches long. Most are translucent, but some seem to have a black or blue tint to them. (I am certain they are not veins) I suppose I am waiting for their presence to become so apparent that I am ensured to be taken seriously the next time I find enough inner strength to make it down to an ER somewhere (I shall NEVER return to the Tom Waddell clinic again in this lifetime.)<br /><br />Sorry things are so glum. I didn't want you to think I was avoiding you for no good reason.<br /><br />Wish me luck in finding a way out of this mess before I suffer any permanent damage.<br /><br />Hope you are well.<br /><span style="color: rgb(136, 136, 136);"><br />D<br /></span><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">S.B.</b><span dir="ltr"></span><br />Date: Mon, Feb 5, 2007 at 1:18 AM<br /></span></span><br />David,<br /><br />I am concerned by your e-mail. I'm not familiar with the Tom Waddell clinic, but I think you should immediately try to see a doctor somewhere else. What you are describing is either a parasitic infection, which can be life threatening if left untreated, or as the Waddell doctor implied, a psychological issue that is equally dangerous. Either way, you need to be treated as soon as possible. I would recommend following up on the Mental Health referral, because they will have to rule out any physiological condition before they can treat you psychologically. That means you can take aim at two birds with one stone by starting there.<br /><br />Please keep in mind, that many doctors are not educated outside of their initial area of study. They expect to only see routine things, and therefore often only "let" themselves "see" routine things. That means if you have something rare, it is hard to get a diagnosis. I saw almost a dozen doctors before i was finally diagnosed with dermatomyositis. All of them were sure what I had was either psychological or not important. Only the last one recognized it as a life threatening condition that would have killed me eventually. It was hard to make myself keep seeking out new doctors, but it probably saved my life. There is nothing to be humiliated or threatened by, except if you stop seeking an answer and let this get the best of you. If you need help, tell you family you need intervention: literally, that you are too ill to seek help yourself. I wish I was closer to help myself.<br /><br />David, I want you to consider the possibility that what you are experiencing is indeed psychological, or perhaps both psychological and physiological combined. Based on your e-mail, I don't think you sound to be in a very good state of mind. A long period of unemployment or other setback can cause that. You seem to recognize that you are depressed, but you need to know that severe depression can result in both physical manifestations and hallucinations. I know, I'm in the same position myself. However, doing nothing is not an answer, it is not a solution. And, seeking help and treatment is nothing to be ashamed of. See a psychologist, you may be surprised, s/he may tell you you are perfectly normal and just need an antibiotic and a prozac prescription. I've been on anti-depressants since the stroke and they've been trying to figure out a way to get me onto ADD meds as well, but I keep having very severe side effects (heart problems), which causes them to keep pulling me off of the drugs, usually right after I've started feeling better. In the meantime, I'm on a roller coaster myself. Fortunately, I have a safe harbor here with my family. Your priorities needs to be to get a definitive diagnosis, get treatment, and find yourself a safe harbor of your own. If that is with your family, do it! If it is in a shelter, or clinic of some sort, do it! Hiding in your room is not going to solve the problem; just the opposite, it is going to let it get worse. And, you are too smart to let that happen. Remember who you are.<br /><br />BTW, when you see doctors, don't try to diagnose for them, they hate that. Let them be the smart ones. Just tell them your symptoms. Don't even give them the opportunity to make you feel crazy or stupid. Just tell them the symptoms, in easy, simple terms. If you have a sample of something that came out of your eye, save it in a plastic bag and take it with you to the doctor. DO NOT however try to dig something out of yourself. If you are indeed hallucinating, then you will only injure yourself. David, this is something you can beat, but it will be alot harder to beat if you are blind. Recognize that you may not be in control, that your judgement and perceptions may be very distorted, and then address the limitations that implies. If you have to throw away tweezers and knives, do it. if you have to take the door off your bedroom and curtains off the windows to keep yourself active and engaged, then do it. If you have to blast dance music to keep you awake, then do it. You control the problem, don't let the problem control you.<br /><br />Happy Birthday (belated). How old are you? Wish I was there to take you out for a celebration.<br /><br />Let me know how things are progressing. Write me back with a plan for what you are going to do this week. If you want me to get in touch with your family (your brother) for you, send me their contact information. Also, please send me your physical address, phone numbers, etc. You have to be available and willing to interact before others can help you, so make sure as many people know where to find you, how to reach you, etc. as possible. Ask for help.<br /><br />Keep you chin up! and keep in contact.<br /><span style="color: rgb(136, 136, 136);"><br />S.B.<br /></span><br />PS: So what do you think of the iPhone?<br /><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Me</b><span dir="ltr"></span><br />Date: Mon, Feb 5, 2007 at 4:48 PM<br />To: <span style="font-weight: bold;">S.B.</span><br /></span></span><br />A psychiatrist is about the last person on the planet I would go to see right now. I've been seeing them all my life (for ADHD and difficulties I had in my childhood) and I am none the better for it.<br /><br />The best was when one doctor prescribed Melaril (a sedative that zonks you into oblivion) to try to "slow me down" a bit. I only found it useful to attempt suicide with during my late teens. (by swallowing the whole bottle)<br /><br />I didn't rise above my problems until I finally cast off their useless "help & advice", and decided to help myself. I'm not saying things have gone perfectly, but nothing they were offering was making it better. I finally decided to simply fight my own demons to the best of my abilities, and I've done a pretty good job up to now I'd say.<br /><br />If I am hallucinating, then my brother is too. Keep in mind that things were visibly popping out of my eye when her came to visit me.<br /><br />I didn't say they are invisible, just hard to see. They are getting easier to see however, as they increase in numbers. (something that alarms me as much as it may helps with diagnosis)<br /><br />What I think I need is a good parasitologist. There are a few over at UCSF, but I have no funds whatsoever.<br /><br />My mother has offered to fly in and take me to a "specialist", which I have resisted up to now. I really didn't want to involve her, but have recently decided that is my best course of action presently. It's humiliating to need my "Mommy's" help at my age.<br /><br />She is in Brazil right now for my Brother's wedding, but plans to come here as soon as she returns. In the meantime, I am trying to work up the strength to get myself into the ER at UCSF. I will take your advice about just mentioning symptoms. You are right, the Doctor at Waddell made several sarcastic comments about my attempts to "diagnose" my own condition. (isn't that what any intelligent person would attempt to do though?) It bothers me greatly not being able to lock it down to one identifiable source. In the past I have only sought medical assistance AFTER I diagnosed and identified the source of my own illness, and only then if it was something I could not cure with OTC drugs, home remedies or "grinning and bearing it" 'till it passed.<br /><span style="color: rgb(136, 136, 136);"><br />D<br /></span><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">S.B.</b><span dir="ltr"></span><br />Date: Mon, Feb 5, 2007 at 6:05 PM<br /></span></span><br />Please get your mother up there as soon as possible, so you have someone else to lean on. It may not be ideal, but its something. In the meantime, try to "capture" some samples and freeze them. Then take them with you when you go back to a clinic. Please keep me informed on how things are going. --S.<br /><br />----------<br /><span class="undefined"><span style="color: rgb(0, 0, 0);">From: <b class="undefined">Me</b><span dir="ltr"></span><br />Date: Mon, Feb 5, 2007 at 6:08 PM<br />To: <span style="font-weight: bold;">S.B.</span><br /></span><br /></span><br />Hi S,<br /><br />I imagine you'll be happy to know that your letter prompted me to email a local Parasitologist.<br /><br />I described my symptoms in depth, and asked for his advice. I will let you know what happens.<br /><br />I am also considering paying a visit to the UCSF ER tonight, fyi.<br /><br />I do appreciate your concern. Youu are the only friend I have shared these details with. I let you in on my situation, I think subconsciously, because I knew you wouldn't stand for my inactivity, and would light a fire under me until I did something. I also imagine that you have some sense and appreciation from a standpoint of anxiety alone, of how difficult this is for me to cope and deal with.<br /><br />I think the iPhone is AWESOME and am dying to have the resources to own one someday!<br /><br />P.S. I have a few samples already.<br /><br />Btw, the parasite is normally transparent, and difficult to see, but application of ink or paint (I discovered by accident) changes this. After some spray paint was accidentally applied to my arm, the specimens there became much more visible. Less than a minute later after I found little flecks of paint surrounding my eyes. I am certain I did not touch my eyes, nor was any of the paint on my hands.<br /><br />Also, I have pretty dark circles under my eyes. (I have always had a problem with this due to my complexion) It gets much worse if I don't get enough sleep. My solution for this over the years has been to apply a small amount of yellow tinted concealer under my eyes to counteract the blue circles. Recently when I attempted this, the concealer I had just applied, moved to the other side of my eye. Freaky stuff, I know, but unfortunately real. (I have noted that the organisms seem to cluster around the edges of my eyes)<br /></div>Dave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com0tag:blogger.com,1999:blog-2180465743998260270.post-90039877752451061672006-03-08T23:44:00.000-08:002010-07-24T04:06:22.598-07:00Rush on HybridsI just wrote an article today that got picked up by the Huffington Post! Check it out here:<br /><a href=" http://www.huffingtonpost.com/david-franklin/rush-on-hybrids_b_17006.html"><br />http://www.huffingtonpost.com/david-franklin/rush-on-hybrids_b_17006.html</a><br /><br />A friend of mine brought to my attention that Rush Limbaugh was saying on his radio talk-show that hybrids cost more and cause more pollution in the end than regular cars do, so I decided to investigate his rationale and respond to his claim.<br /><br />I initially sent this out as a post to the Electric Vehicle and Hybrid Group that I belong to on Yahoo, which someone then forwarded on to the editor of the Huffington Post. They contacted me the same day and asked if they could post it on their website.<br /><br />Here is the text from the article:<br /><br /><div class="entry_body_text"> <p></p></div><blockquote><div class="entry_body_text"><p>A friend of mine and I were discussing the Oscars, and how many celebrities showed up for the event in their hybrids. He told me how stupid and naive he thought that was because he had heard on Rush Limbaugh's program that hybrids have proven to be a bust, that they cost more in the long run than comparable conventional vehicles, due to actual cost of ownership figures, and in the end we would still use the same amount of oil that we are using now!</p> <p>Perplexed, knowing quite well that this could not be further from the truth, I read what Rush had to say about hybrids on his website in an attempt to comprehend how he could possibly have arrived by these conclusions. I can sum up in one word what I think of Rush's logic when it comes to hybrids. "Flawed." It is due to this flawed logic that I believe his conclusions are so askew of reality.</p> <p>As a former Toyota salesperson specializing in Prius and Rav4 EV (how about NO oil!) sales, I cannot speak for the "American" hybrid offerings other than to say that Toyota invested $25 Billion in developing their hybrid technology (more than Ford or GM's net worth), and the American automaker to invest the most so far, Ford, has only put in about $2 Billion! Toyota invests in the future. The big three invest as far ahead as next year's sales, in reality because that's all they can afford to do. They have been dragged into the world of hybrid technology kicking and screaming. The real explanation behind their opposition to developing hybrids is that they don't have the resources to compete with Toyota. Ford's Escape Hybrid, while commendable in that it saves some fuel compared to what a conventional SUV consumes, is not destined to make much of a dent in our skyrocketing demand for foreign oil.</p> <p>Rush says that, "Contrary to any loose statements made by our marketing partners in the environmental community and media, petroleum not consumed by Prius owners is not 'saved.' It does not remain in the ground. It is consumed by someone else. Greenhouse pollutants are released." I find this statement baffling! Is there a backlog of "oil orders" that lies unfulfilled somewhere that I am unaware of? Are there companies out there just waiting for people to buy more hybrids, so that they can have their oil orders taken off backorder? Not to my knowledge. Logic would dictate that if demand for oil decreases, drilling and production of oil will decrease as well!</p> <p>Perhaps if it was put another way it would be easier for Rush to grasp the cold hard logic behind what hybrids can do for this nation; "If every privately owned vehicle in America was traded in today for a Prius, it would reduce the amount of oil our nation requires to a level that could be fully supported by our own resources!"</p> <p>Let me say that again in case it didn't sink in fully the first time; "If every privately owned vehicle in America was traded in today for a Prius, it would reduce the amount of oil our nation requires to a level that could be fully supported by our own resources!" (and that's without having to drill in Alaska!)</p> <p>How about that for a direct connection between the Prius, and reducing, nay, ELIMINATING our dependency on foreign oil! Imagine, American's making a single conscious choice simply of what automobile to buy, one that is currently available to everyone, that in no way inhibits them from continuing to live they way they do presently, yet ends our need to import oil! Can you imagine the far reaching ramifications of that? </p> <p>What's so sad is that while this possible future lies directly in front of us, waiting to be embraced, Rush Limbaugh still cannot "see the connection between hybrids and cutting our dependency on foreign oil" as he drives home in one of his vehicles, none of which, he is proud to admit, get better than 14mpg! He states that he would never drive a vehicle that gets better mileage than that because they are too small and unsafe! Personally, I think I would prefer the safety of living in a nation that doesn't have an economy that's stability depends upon purchasing oil from terrorist regimes!</p> <p>Rush says that you have to pay $10,000 more for a hybrid than you do for a comparable non-hybrid vehicle. Hmm! What can you compare a vehicle as unique as the Prius to I wonder? The Prius is one of the smoothest, quietest, most enjoyable vehicles I have ever driven! A buddy of mine says he prefers driving it over his brand new BMW 745! He even says the GPS navigation technology is more sophisticated in his Prius than it is in the BMW!</p> <p>The Prius starts at $22,000 - very well equipped! Let's see, that must mean that Rush feels that a comparable vehicle to the Prius ($22,000-$10,000) goes for around $12,000! Wow! What can you buy for $12,000? Do they still make Yugos? Even if they did, I doubt a $12,000 Yugo would have power windows, power door locks, AC, cruise control, Automatic (Maintenance Free!) CVT Transmission, AM FM Stereo with CD Player, keyless entry, etc. etc. etc. (all standard features on the Prius) The Yugo also doesn't get over 50mpg!</p> <p>Even Toyota's Highlander Hybrid gets DOUBLE the mileage of a Ford Explorer, with more power, more standard features, a similar price point, and 1/10 the emissions!</p> <p>Another thing that Rush is perhaps unaware of is that all these "Enviro Wackos" as he defines them, really ARE helping to reduce pollution by driving a Prius, due to the fact that a Prius produces 1/10 as many pollutants as your standard 5 passenger sedan. Put into perspective, when driving in the city, that means that often times the pollutants created by the engine, coming out of the tailpipe, are of lower concentration than those already in the air it is being released into! Maybe we should feed a hose from the tailpipe of the Prius into the passenger cabin when driving in downtown during rush hour so as to avoid breathing in all that smog!</p> <p>Rush says that the Prius's MPG numbers are fudged! Well duh! Who do you think comes up with those numbers? It's not Toyota, I'll tell you that much! Those numbers are generated by the US government. Toyota stands by the fact that you will get between 45mpg-52mpg on average in the Prius depending on your driving habits. This is less than the 60mpg City listed in the window, true. However, that being said, you certainly CAN get 60mpg in the Prius if you drive it conservatively enough. I have done it myself.</p> <p>The thing that people need to realize is that NO VEHICLE, driven normally, gets the mileage listed in the window! My understanding is that they ALL, on average, including the Prius, get about 26% less than the mileage listed in the window! When you compare a Hummer to a Prius though, a Hummer getting 7.4mpg instead of the 10pmg indicated in the window seems trivial compared to 44.4mpg instead of the 60mpg indicated in the window. They are both only 26% lower than advertised however.</p> <p>Rush also states that the Prius has no get up and go. When asked if Rush has ever driven a Prius, his response is "He'd never be caught dead in one of those things!" While this doesn't surprise me in the least, what he doesn't realize is the current Prius goes from 0-60 in 10 seconds! Speaking technically, that level of acceleration is referred to as "pretty darn fast!" (As fast as a Camry, and MUCH faster than a Yugo!) Thanks to its electric motor, which can run simultaneously with the gas engine, the Prius also has more torque than almost any other vehicle on the road! (Nearly as much as a Hummer H2 if you can believe it!)</p> <p>Rush proclaims that the cost of ownership is higher over 5 years on a hybrid than a comparable non-hybrid vehicle. This of course includes him factoring the $10,000 "premium" people have supposedly paid to buy a hybrid.</p> <p>In reality, the Prius is one of the first vehicles offered by Toyota to include a maintenance free transmission with only 5 moving parts! (a standard automatic transmission has over 500 moving parts, and requires maintenance every 15,000 miles) The transmission and all hybrid components in the Prius, including the batteries are also maintenance free, and GUARANTEED for 10 years, 150,000 miles in the State of California (and I think 8 years, 100,000 miles in the rest of the country). This is just the warranty however, and Toyota states that the actual life of the transmission, and all hybrid components, including batteries, should exceed the "lifetime of the vehicle" under normal driving conditions. In other words, you should never have to worry about or do anything to those items... EVER.</p> <p>The ONLY scheduled maintenance even listed in the maintenance guide other than the occasional inspections of components is oil changes! You can also expect the sophisticated regenerative braking aboard the Prius to save you money on brake pads as well.</p> <p>So basically, Rush's entire argument about the higher cost of ownership of the Prius is based ENTIRELY on his flawed comparison of the Prius to a $12,000 "Yugo," simply because the "Yugo" is cheaper to buy. (I say the Yugo, because there is no such car in existence, comparable to the Prius, at that price range to compare to!) Personally I'd say the Prius is more comparable to a Lexus is300 (which costs more than the Prius), both in ride quality, performance, and amenities. If you want to compare it to a Toyota branded model, the closest match is the Camry XLE, which also has a HIGHER price tag than the Prius!</p> <p>The bottom line is that you shouldn't believe everything you hear, especially if it comes out of Rush's mouth! If you want to give the Prius a fair shake, then go down to your local Toyota dealership and judge for yourself! I've rarely seen a person walk away from a Prius test drive without a smile on their face, and they are usually headed towards the sales desk!</p> <p>If you already drive a Prius, you should take a moment to pat yourself on the back! I "get" what you are doing even if Rush doesn't!</p> <p>Best regards,</p> <p>David Franklin<br />Independent Hybrid/Electric Vehicle Consultant</p> </div></blockquote>Dave Franklinhttp://www.blogger.com/profile/16079167879303397020noreply@blogger.com0