Sunday, July 25, 2010
Welcome to my blog!
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.
For more info on what this blog is about, check out http://living-in-sanity.blogspot.com/p/introduction-what-this-blog-is-all.html
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!
Thanks for reading!
Monday, January 21, 2008
Thanks for your phone call.
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.
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.
Date: Tue, Jan 22, 2008 at 8:48 AM
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.
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
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.
BTW, I was surprised that the CDC did not ask about lifestyle. Is this a gay phenomena?
Date: Tue, Jan 22, 2008 at 9:47 AM
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.
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.
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 morgellons.org website:
Robert, New York
I have heard about your Morgellons Research Foundation from a TV program on CNN. I think my son Robert had the symptoms of Morgellons.
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.
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.
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.
Cristina, New York
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.
Carol, New York
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.
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.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.
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.
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.
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.
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.
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.
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.
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.
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.
This disease is ahead of its time, way ahead of our doctors.
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.
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.
Larry, CaliforniaI 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.
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.
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.
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.
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.
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.
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"
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.
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.
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.
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.
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.
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.
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."
Helen, New York
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!!!
Artie, New York
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.
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.
Judy, New York
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. 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.
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.
Laurie, New York
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?
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.
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.
Mary, New York
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.
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.
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.
Maureen, South Carolina (Maureen lost custody of her son after he began exhibiting symptoms of Morgellons.)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.
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.
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.
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.
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!
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.
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.
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.
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.
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!
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. 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".
Date: Tue, Jan 22, 2008 at 10:07 PM
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).
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.
Date: Tue, Jan 22, 2008 at 11:10 PM
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.
Date: Wed, Jan 23, 2008 at 9:33 PM
Date: Wed, Jan 23, 2008 at 9:39 PM
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.
Tuesday, October 30, 2007
From: Douglas Buckner
Date: Wed, Oct 31, 2007 at 7:34 AM
Thank you for your email. We have no idea what causes Morgellons.
Your theory is as valid as anyones. Sometimes, bacteria and parasites
work together. For example, with Microfilia, patients are treated
with both antibiotics for the bacteria that the parasite lives on plus
We need research to answer all of the questions surrounding this
disease. I hope that you will consider making a donation.
Morgellons Research Foundation
From: David Franklin
Date: Sat, Nov 3, 2007 at 5:16 AM
To: Friends, family and colleagues
Date: Sat, Nov 3, 2007 at 6:09 AM
P.S. Did you get the CDs I sent?
From: David Franklin
Date: Sat, Nov 3, 2007 at 7:00 AM
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)
Date: Sat, Nov 3, 2007 at 9:11 AM
Date: Sat, Nov 3, 2007 at 9:30 AM
Date: Sat, Nov 3, 2007 at 11:11 AM
From: (The site owner of morgellonstreatmentsteps.com)
Date: Sat, Nov 3, 2007 at 12:55 PM
Stephen Fry, MD
15720 N Greenway Hayden Loop
Scottsdale, AZ 85260
Amin, Omar, M.D.
Gruenn, Hans M.D.
2211 Corinth Ave. #204
Los Angeles, CA 90064
Harris, Steven J. M.D.
Board Member of California Lyme Disease Assoc (CALDA).
200 Providence Mine Rd, Suite 110
Nevada City, CA 95959
Dr. W. John Martin, M.D., Ph.D.
email - firstname.lastname@example.org
Savely, Virginia (Ginger) R.N., F.N.P.C.
TBD Medical Associates
450 Sutter Street Suite 1504
San Francisco, CA 94108
Spencer, Edward M.D. (Neurology)
4 Ashley Ct.
Novato, CA 94945
Office - 707 763 6854
47 Maria Dr., Ste 811 B
Petaluma CA 94954
Cell - 415 250 1835
(Concerned about many conspiracy issues)
Stricker, Raphael B. M.D. (member of MRF)
Union Square Medical Associates
450 Sutter Street Suite 1504
San Francisco, CA 94108
Phone: (415) 399-1035
Fax: (415) 399-1057
Yang, Theresa, M.D., FAAFP
10201 Mission Gorge Road, Suite A
Santee, CA 92071
(Santee CA is in San Diego’s east county)
Kurt N. Woeller, D.O.
Tracy Tranchitella, N.D.
(951) 693-2267 or email@example.com
Temecula, CA. 92592
Phone: (951) 693-2267
Fax: (951) 693-2268
Dr. Rick Bierman L.AC
625 Arlington Circle
Novato, CA 94947
Keith Bodrero, DO and Mindy Goodwin, PAC
5780 North Carefree Circle
Colorado Springs, CO
Note: Dr. Bodrero and Mindy Goodwin, his PA were both trained by Dr.
Harvey on ways to treat Morgellons disease. Mindy was a PA in Dr.
Harvey's office for 2 years prior to the office closing. Mindy is very
familiar with successful ways to treat Morgellons patients. Both
individuals will be in contact with Dr. Harvey if they need his
expertise. You can contact them to see if they are accepting new
Jones, Charles, M.D.
Hew Haven, CT
Phillips, Steven M.D. familiar with Cpn
944 Danbury Road
Wilton, CT 06897
Past President, International Lyme and Associated Diseases Society (ILADS)
Frederick Browne, MD
New Milford Hospital
21 Elm Street
New Milford, CT 06776
Schaller, James L. M.D., MAR (member of MRF)
Naples, FL – 239-263-0133
Tampa, FL – 813-909-8009
Physician and Author
Schwartz, George, M.D.
Boynton Beach, FL
Sastry, Vatsala, M.D.
15435 Cortez Blvd.
Brooksville, FL 34613
2105 Highway 44 W
Invernness, FL. 34453
Uppal, Neelam, M.D.
5840 Park Blvd.
Pinnelas Park, FL. 33781
Infectious Disease and Internal Medicine
Practices in Largo, FL, Pinellas Park, FL, and Saint Petersburg, FL
Vitelli, Mario, Ph.D., LA.C
Physicians Health Center
420 SE 17th Street
Ocala, FL 34471
352-351-5343 (Physicians Health Center)
Board Certified Biofeedback Specialist
Interested in examining and treating individuals with Morgellons symptoms
James E. Lemire, MD, PA
9401 SW Hwy 200 Bldg 90 Ocala, FL 34481-9612
Susan E. Kolb, M.D., F.A.C.S.
4370 Georgetown Square
Atlanta, GA 30338
Phone: (770) 457-4677
Ledtke, Michael A. M.D. (member of MRF) will only see patients who live in MI
150 Plymouth Rd
Saginaw, MI 48603
Arezo Maria Fathie, MD
2649 Wigwam Pkwy #101
Bransfield, Robert M.D.
Red Bank, NJ
Emilia Eiras MD
702 Brewers Bridge Road
Daniel Kinderlehrer, MD
4 Torreon Place
Santa Fe, New Mexico
Canfield, Russell M.D. PC
500 Don Gaspar Ave
Santa Fe, NM 87505
Clinical assistant professor
University of New Mexico School of Medicine
Board Certified Holistic Medicine & Family Practice
Dr. Pratima Raichur - Aruyvedic doctor (India)
Pratima Ayurvedic Skincare Spa
110 Greene St., Suite 701
New York, NY 10012
(Between Prince and Spring Streets)
Bernard Raxlen, MD
123 W 79th St
New York, NY 10024
Horowitz, Richard I. MD
Hyde Park, NY
Internist, CAM – Lyme
Board Certified, Internal Medicine, Former Assistant Director of
Medicine, Vasser Brothers Hospital, Specializes in diagnosis and
treatment of complicated Lyme disease and other tick-borne illnesses.
First Vice President of the International Lyme and Associated Diseases
Society, Inc. (ILADS)…familiar with Morgellons disease. You can call
to see if he is accepting new patients.
Daniel Cameron MD, MPH
Lyme Disease Practice and Research
175 Main Street
Mt. Kisco, NY 10549
Internist, epidemiologist, lyme
Ken Leigner, MD PC
Internal & Critical Care Medicine
Lyme Borreliosis & Related Disorders (ALS Focus)
8 Barnard Road
Armonk, New York 10504
Jemsek, Joseph M.D.
14330 Oakhill Park Lane
Huntersville, NC 28078
Dr. James R Overman, M.A., M.H., M.Div., N.D., C.N.H.P.
Precision Herbs, LLC
9804 Township Road 89
Killbuck, OH 44637
Casey, Rhonda, D.O.
3345 S Harvard, Bldg 200
Tulsa, OK 74135
Werner, Carla, M.D.
13321 N Meridian Ave Ste 406
Oklahoma City, OK 73120
Raffety, Stacey, N.D. (Dr. of Holistic Medicine)
Tigard Holistic Health Clinic – Oregon
11930 SW Greenburg Road
Tigard, Oregon 97223
Phone: (503) 639-1712
Bach, Gregory P., D.O., P.C.
(Internist) Family Practice
Boulden, Kelly, M.D.
Fibromyalgia & Fatigue Center of Fort Worth
4521 S. Hulen Street, Suite 200
Ft. Worth, TX 76109
Curti, Tony, M.D.
P O Box 65601
Lubbock, TX 79464
Hardwicke, Alan M.D.
425 Cypress St
Abilene, TX 79601
Holt, Byron B. M.D., F.A.C.O.G.
Womans Healthcare Center of Houston
Professional Building II
909 Frostwood, Suite 110
Houston, TX 77024
Hamid Moayad, D.O.
1305 Airport Frwy., #311
Bedford, TX 76021
Parrish, Mary, NP
Del Rio, TX
Stevens, James D.O.
Fibromyalgia & Fatigue Center of Dallas
12740 Hillcrest Road
3 Hillcrest Green Building, Suite 100
Dallas, TX 75230
Strickland, Carol, M.D.
St. Joseph Hospital/Medical Building
Ames, Geoffrey S. M.D., PLLC (member of MRF)
P.O. Box 430
Richland, WA 99352
Klinghardt, Dietrich MD, PhD & AANT
Bellevue, WA (near Seattle)
425 688 8818
To read more about him refer to this site:
Riddle, Chelsea N.D. and Klassen, Joe N.D. (both Naturopathic Doctors)
Fish Creek Naturopathic Medicine
2114-380 Canyon Meadows Dr SE
Miklossy, Judith MD, PhD
Neuropathologist, board certified in neurology and psychiatry with
experience in molecular biology. She has been involved in the research
of Lyme disease for approximately 20 years.
University of British Columbia, Department of Psychiatry,
Kinsmen Laboratory of Neurological Research,
Vancouver, B.C. V6T 1Z3, Canada
Dr. Andrew Wright
Dalton House, 33 Leigh Road,
Tel No 01942 819301
Dr. David Owen BSc MB BCh LLM
Place of Private Practice:
30 The Parade, Cardiff. CF24 3AD
UK: 02920 486168 or
outside: + 44 (0) 2920 486168.
Date: Sat, Nov 3, 2007 at 9:12 PM
Date: Sat, Nov 3, 2007 at 11:00 PM
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!
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 morgellonstreatmentsteps.com who I forwarded Dr. Buckner's response to. I will forward it to you.
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?
Wednesday, October 24, 2007
Subject: Morgellons Disease/Syndrome
Sent: Wed, 24 Oct 2007
From: Rev. Robert Johnnene OFA
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.
He cannot afford the $500-$600 per hour that the two doctors in the area who are successfully treating the disease are charging.
He is a smart and capable young man who now fears that he is losing his mind to the disease.
I would appreciate any advice or assistance you might be able to give in his case.
I am not in a position to help financially as I only live on less than 900 a month myself.
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.
A humble simple servant of Christ,
Rev. Robert Francis Johnnene OFA
Mission St's. Sergius and Bacchus
Web Site: www.missionstsergius.org
From: Janet Fedeles
Date: Wed, Oct 24, 2007 at 1:04 PM
Subject: Re: Morgellons Disease/Syndrome
To: Rev. Robert Johnnene OFA
Dear Reverend Johnnene,
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.
Does your friend have a computer that he can look at Marc Neumann's site? www.morgellons-research.org. 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.
Will the practitioners in San Francisco not see anyone who cannot pay? This saddens me.
I will pass this on to Marc Neumann, as well. He may have some other ideas.
Please keep praying for all of us. I pray daily and wish I could do more for your friend and many others.
Tuesday, October 23, 2007
Date: Fri, Oct 26, 2007 at 12:06 PM
Any news yet?
Date: Sun, Oct 28, 2007 at 2:48 PM
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.
From: Aunt Kathy
Date: Sun, Oct 31, 2003
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.
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.
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.
By 8 a.m., we couldn't see the sun anymore from our back deck and the sky had turned almost 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 immediately”. I immediately began to panic, literally felt my heart start thumping 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 figuring they already had their 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 repainting 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 discovered 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 do 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.
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.
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.
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.
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.
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.
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.
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.
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 loss, having been there so many times over the years for happy occasions. They just walked with us in silence, looking over the rubble, 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 making it hard to walk around them. You keep looking at it all again and again trying to make some sense of it, but, really, everything is just gone.
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.
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.
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.
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 that 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 books and pictures that were being stored at our house. Thankfully, Jes had nearly all of her 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 can ever adequately capture, of loved ones gone from us and experiences that only happen once in a lifetime.” So true.
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.
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.
UPDATE: 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!