Tuesday, December 8, 2009

Autoimmune Illness 1995-2004

Thyroid Disease and Auto-immune Disease 1995-2004
In March 1995 I was teaching English to foreign language students. For Spring Break I decided it would be a good idea to go to Central America to get away and practice my Spanish. I became very ill while in Guatemala during my two week stay there. After I returned to work I noticed that my energy level was very low and that I could barely make it through the day. In June my throat (thyroid gland) began to swell up to a ridiculous size until a hard cyst like mass formed and didn’t go away. The school district didn’t want to pay for my treatment and began to do the set up paper work to fire me. The surgery was done in January and the surgeon did a very professional job, taking out one side of my thyroid. He described a lesion on the right side thyroid but was smart enough to leave it in. The tumor was about 4.5 cm in diameter and very hard and fibrous. The pathology report said it was pre-cancerous. The muscles that held my head up were cut during the surgery and now they were held together with giant metal hoop staples. A friend of mine who saw me later said I looked like the guy from Hell Raiser. My health seemed to slowly fade out on me until it was worse than before. The fatigue was so profound that when I tried to walk across the living room I had to stop and rest before I went back. My appetite grew very poor, I was overcome with pain and nausea I didn’t eat for two weeks. For six months I tried to get my job back and to get the HMO to help me, and then I just gave up on them both. It was clear they had orders to ignore me. On days when I wasn’t too ill to walk I found old cars that weren’t running, bought them from the owners, and got them running again and sold them. To keep body and soul together I quickly burned through all of my savings.
My illness seemed to be a roller coaster with highs and lows that left me at the bottom stuck on the couch for a couple of weeks, and then the symptoms would lessen for a few days and allow activity. I waited for this maddening sine wave to relent and then I loaded my motorcycle into my 79 VW hippy van, rented a U-Haul truck, threw everything I had in it, loaded up the cocker spaniel and the orange tabby cat, and headed to the hill country above Austin, towing the van behind the U-haul. I had traded the 72 Ford Mustang I was repairing to a friend in return for 6 months rent on his 10 acre deer lease that he said had a house on it, but in reality it was an old shack. It was July, 1995 and I had landed like a human ship wreck in the middle of nowhere. I had been born in Austin 33 years previously so I felt like I was coming home…to die. I wasn’t morose, it was just that the symptoms were relapsing and remitting and progressive. All of which means that the nausea, profound fatigue, night sweats, inability to sleep, muscle weakness, terrible kidney pain, passing blood, vertigo, and tinnitus all came and went and got worse as time went on. The most profound symptom of all was unbearable neck pain about C4 that left my neck frozen much of the time. All of the muscles that were innervated off my spine seemed to slowly contract until the pain was unbearable and it was hard to breathe or move around. It was like living in a straight jacket or iron maiden of my own muscles. Even at rest my breathing would be labored like I was climbing a long flight of stairs. The book Osler’s Web about the life and work of a 19th Century physician had the closest description I could find of my disease. A patient who had traveled abroad had a persistent disease state with primary symptoms of persistent diarrhea and no calf muscles. Many of the old people I talked to that had traveled told me it was very common for people to get sick overseas and not recover. Historically when armies formed for war large numbers of men were crowded together and exposed to microbes that their bodies had never encountered. WWII was the first war that claimed more deaths from combat than from illness in history. Recalling the Greek hero Achilles who was felled by a golden arrow I wondered if the story was a poetic version of the disease written about in Osler’s Web. My calf muscles would waste away and then partially return. Was this the same as Achilles heel that was in fact some kind of version of Polio? I kept trying to read the literature and discover the cause of my disease.
Some days after working on a garden or other physical labor I had vertigo and muscle weakness so profound I couldn’t walk. My physical pain was very intense. I could move around my ten acres and I was happy here, no one bothered me. I began to write poetry and short stories as a kind of talking cure since I was too poor to afford a psychiatrist after all my disillusion at being a throw away human being. I still had my privacy, my dog and cat, my family by phone, and my dignity.
I woke one morning feeling especially bad. My complexion was chalk white and after couple of hours I suddenly passed out and woke up even more ashen faced. It scared me so I drove to the emergency room and told the doctor about my illness and what happened that morning. He ran a blood test then asked me how I was going to pay. “I don’t have insurance anymore, I’m not working”. He looked at me with pure disgust that turned to undisguised anger. I was given the business card to a local doctor and escorted out of the emergency room by a security guard. I was humiliated and angry with myself that I had trusted them again. I swore I would die first before returning. I was devastated by the intense pain of the muscle disorder centered at C4 but now more than ever the process of the deterioration of the white matter of my brain stem and brain raced out of control. For a long time the disease had resembled a light case of Polio or an aggressive case of Multiple Sclerosis. The muscles of my neck and calves would become too weak to use and them turn to a jelly like consistency and be absorbed by my body. The muscles of attention, the ones that had to work constantly to keep my head erect or my body standing would literally disappear in a matter of a week. The fatigue was always the kind of profound fatigue that puts marathon runners in bed for weeks. Trying to live with this and the inability to sleep more than two fitful hours at a time had made me face up to the fact that I was slowly dying and absent a miracle would probably be dead in a few years. The only reason I was not in a facility being cared for was that the symptoms rose and fell enough for me to walk around for a few hours half the time. The relapse that I had been dreading for so long now came on with a vengeance. I was unable to walk from one room to the other without a terror of falling and being stranded. My ability to think and concentrate became so affected that I could only communicate in 3 or 4 word sentences. The ability to process what was said to me or to watch TV and take in the words was so attenuated that I could not follow the word streams that made up sentences. Finally my time sense became completely inoperable such that 8 hours seemed like 15 minutes. Every day for months I staggered into the living room and sat in a chair with my eyes rolled back in my head. The white matter of my brain and central nervous system was being degraded and literally eaten away such that now I could not stand light, noise, nor process sensory input of any kind. I could not watch TV or listen to the radio or read. I just sat in a chair with my eyes rolled back in my head with all the lights off in silence. Looking in the mirror I saw a person who was ashen faced and resembled nothing so much as a groaning zombie with eyes half turned upward. I contemplated getting a video camera and taping a final statement to show people what had happened to me and that I was committing suicide out of necessity. By summer I was able to listen to soothing slow classical music without feeling pain or sensory overload. I still could not listen to fast music or watch TV. Gradually I was able to read again and by fall I was still sitting in the chair all day covered by a quilt and listening to classical music and reading. My time sense had returned to normal. By winter I could converse normally. Christmas came and I was able to process information in the form of TV and streams of normal conversation such that I could understand it completely again. I had sat in the chair for the better part of a year and concentrated on classical music through all but the worst of it.
The sleep disorder got so bad that I couldn’t sleep again for months and I felt like I was treading on the edge of life and death again. I went to a specialist in Lubbock and after 4 visits during which he did nothing I talked to the nurse and he finally gave me something that made it possible for me to sleep. Once again traditional medicine kind of left me flat, but at least I was sleeping again. I looked up the name of an osteopath, a form of humanity which I had never met before. He sketched out a diet and vitamin regiment for me to try and gave me an intravenous drip of vitamins B-12, C, and magnesium. I stayed on the diet for two weeks and my symptoms mitigated. When I went off the diet to test the proposition I immediately suffered a brief relapse. I doubt everything but I couldn’t doubt what works. The IV drips of massive doses of vitamins gave me energy for at least 3-4 days. The 9 different types of vitamins he had me on and the diet made life tolerable again. They informed me that many people in my straights often were able to slowly rebuild their immune systems and recover gradually over the space of several years. I had been sick for five years and imagined I could get well in 2 more years. The diet was hard to follow in our modern world. Eat oats (oatmeal) and eggs, fish, liver, chicken and vegetables. Avoid sugar and packaged food of any kind plus anything that was carbohydrate was too glycemic in the blood stream. Bread and corn and white rice are quickly converted to sugars and sugar, especially in its pure form, was toxic. Everything touched by the hand of man was pretty much messed up. Even juice was sweetened with high fructose corn syrup. I drank water or tomato juice. The doctor believed that the human body was capable of healing itself given the right kind of nutrition. Restoring blood flow to affected areas of the body increased the oxygen in tissues which kills pathogens. I had a hard time at first buying into the dogma of the osteopath and asked him some hard questions. “What about epidemic disease like the influenza epidemic of 1918?” The old man smiled and said, “My father was a doctor at L.A. County hospital during the epidemic”. “They had two wings of the hospital, one devoted to Allopathic doctors (MD’s) and one wing devoted to Osteopathy”. “In the Allopathic wing they lost 50% of their patients and in the Osteopathic wing they only lost 10% to the epidemic”. I never went back to check up on his facts but the doctor had a lot of cache with me. He was 80 years old and played tennis every day and was ranked at the top of the USTA seniors doubles bracket. If I kept on the vitamins and diet I felt better and as soon as I got off the diet by eating something with sugar in it or a glycemic food I would have a relapse of symptoms. You can’t argue with success. After a few months it became easy to stay on the diet. I used honey as a substitute for sugar and didn’t eat anything in a package. I lived on salmon and eggs and butter and vegetables out of my garden. Every week I went down to his office and got an IV drip of B-12, Vitamin C, and Magnesium. I would feel nearly human for about 3 days and then less so. I was still in pretty bad shape but I was doing better and I had hope now because I could see a way out. This man had helped a lot of people and he was an inspiration to me.
I had decided to study microbiology and focus on hanta virus and Yesinia pestis. I had written a book about Bubonic Plague and its effects on history when I lived in Georgetown and now I hoped to put some of that research to work. I wanted to make a difference in people’s lives. I had been through tremendous human suffering for the past six years and I hoped to study disease organisms and try to heal myself once and for all. On the average day I could physically walk about 100 meters before becoming stressed. Fortunately this was about the distance from the parking lot to my classes. I was glad to be out of the small town and back in school but it was not going to be easy.
I really enjoyed being around other people for a change and my classes went well. When my first three semesters were over I had made the highest test grade in the hardest biology classes several times. I was doing better physically but I still had to drive to the university and then ride my bike around campus rather than try to walk. Microbiology was starting to get really interesting because the scientists and doctors who taught and came to speak to the classes were living and fighting in the trenches. Public health not only made the difference in the life or death of individuals it was often the fulcrum that decided which nations in history would succeed and which ones would fail. This science at my finger tips had doubled the human life span in the last 130 years and made the modern world possible. I joined the Hanta Virus team as they did field work and unlocked the secrets of this least understood of all rodent borne plagues. We were risking our lives being exposed to these animals and their blood but whole civilizations had risen or fallen on the mysteries that we were helping to elucidate. One of my colleagues working on his PhD had fallen ill doing field work in a south Texas swamp and he nearly died from what was probably an arbovirus…a mosquito borne virus like Dengue Fever. He was young and healthy and so he only felt like he wished he had died for several weeks and then he made a slow recovery. That year three people who were visiting nearby in New Mexico contracted bubonic plague but they were treated in time and lived. During the same time period eight people in the immediate area contracted Hanta Virus and only two of them survived. I had picked the most deadly pathogen on the continent to study and I made myself the resident expert by reading every scientific paper I could get my hands on. The field work that entailed marching around forests and swamps proved to be too demanding in my physical state so I concentrated on creating an archive of research that could be used as a mini reference library for the team. Occasionally I would become depressed and for several weeks I would walk around wearing black and mumbling to myself, “I wish I was dead”. I fought through these periods of depression and thought of them as side effects of my illness. I quit going to the doctor and instead sought relief through massage therapy. The intense pain in my neck at C4 was still nearly always with me as was the slow contraction of my muscles innervated from my back. Three days after the relief of a massage the slow contraction of muscles would again have my neck frozen and my back and ribs in agony. It was very hard to continue to live and work like this but I kept pushing myself to my limits and beyond. When my health and other complications became too great to continue I quit the field since I weighed 120 pounds. After I recovered somewhat I implemented an idea for a biodefense medication that could be used in a national emergency against bubonic plague. For the next 130 days I worked 12 hours a day to do the research and complete a grant application to the NIH for a bioshield program grant to make the novel drug. I found the perfect answer for the Soviet plague bioweapon in a certain bacteriophage drug. I found partners with experience including one who was a former director of the National Defense University. I contracted with a biotech company to manufacture the drug and designed the experiments to test the drug on animals in a private lab to prove it worked. I had a chance to turn the years of suffering into an opportunity to save human lives. In June, 2004 I submitted my grant application and drove my car to Olympia, Washington to work in one of the premier bacteriophage labs in the world. I was not entirely cured but I had turned the corner and had a reason to continue fighting.

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