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.