Illness 1995

Thyroid Disease and Auto-immune Disease 1995
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. I had diarrhea and a low grade fever that I just could not shake and I collapsed at the end of every work day. I went to the doctor (my HMO) and she gave me antibiotics, good old penicillin that I took for a while to moderate or no affect. The year came to an end in a few months and all my plans for travel and adventure fell through as I lay on the couch and could not get up much of the time. Teaching school left me too busy for much of a social life, and my father had come by to visit me in the combat zone just once in the year I had lived there. I needed someone to take care of me but there was just no one there. In June my throat (thyroid gland) began to swell for several weeks, and then the swelling went down, and then began to swell up to a ridiculous size. This process repeated itself 3-4 times until a hard cyst like mass formed and didn’t go away. I tried going to the doctor but they were less than helpful. I went to an alternative medicine doctor but when she went out of town and my symptoms turned worse I discontinued her treatment. I was thrashing around and out of options. The school year started again and I struggled with my thyroid tumor and my failing energy levels. By Christmas I was appealing to my HMO to do something, but they were content just to examine me over and over again. The school district didn’t want to pay for my treatment and began to do the set up paper work to fire me. I had my attorney write some letters to the HMO to demand they remove my thyroid tumor. 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. I had asked the doctor what the experience of surgery would be like and he said simple don’t worry about anything. I really like the surgeon, but he forgot to mention that I would wake up with tubes coming out of my throat. 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. Waking up in this shape was something of a surprise. There was a very nasty laceration apparently from where a nurse in a state of panic had tried to shave my chest. It looked like someone had carved a 2”x4” piece of meat out of my chest that took 12 weeks to heal. How you do that to someone with a disposable razor blade while trying to shave them, even in a panic is beyond me. I felt a little better for about two weeks and then 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. I went back to the HMO but they happily told me I was cured. I returned to the doctor at least 40 times to try to get help with this terrible illness that had me flat on my back and stranded on the couch all the time. I was really scared but they were content just to take notes. My appetite grew very poor and the nausea was so profound that I only ate once a day. I noticed by accident that the symptoms were less when I didn’t eat and after I ate I felt worse. I couldn’t eat for two days so I just decided to go with the fast as an experiment to see if the symptoms improved. I lived on water for 8 days and my body was wracked with a slight fever at first and the awful experience of an extended fast, but the nausea and the fever relented and faded away. Somehow my body was reacting to my food intake, and if I didn’t eat the nausea faded. I don’t recommend not eating for a week, it is terribly painful, but strangely enough I felt better. About 4 weeks later when I was overcome with pain and nausea I tried fasting again for 13 days. It was as long as I could hold out without food. I just became too weak to move around when I was fasting, but I knew that my illness was linked somehow to my food intake. My job refused to return my calls and letters they just ignored me and hoped I would go away. I had paid a lot of money to be in that HMO but it did me absolutely no good. 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. I made about $600-800 dollars a month which was not really enough to stay alive for very long. 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. Most people would probably have been devastated by the turn of events but I was just glad that if I was going to buy the farm it wouldn’t be in the cold impersonal city of Houston, Texas. The land was in the middle of a drought and the mesquite trees, cedar trees, and prickly pear cactus were all framed in dry brown grasses. The house I moved into was one hundred years old if it was a day and full of trash. My enterprising friend had moved it out of Austin and towed it 40 miles to the north onto his ten acres of heaven.
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. I cleaned the house out as best I could, moved my bed and belongings in and wondered what life was going to be like.
Some days after working on a garden or other physical labor I had vertigo and muscle weakness so profound I couldn’t walk. My friend who owned the property was a savant of sorts who told me that MD’s would kill you and that I should try taking DHEA. I had lost faith in doctors and decided I wouldn’t go to one unless I was sure I was going to die. The DHEA was a precursor hormone that gave me more energy and allowed me to be active more hours of the day, but it was no miracle drug. I learned to drink about 36 ounces a day of cranberry juice during periods of passing blood or intense kidney pain. I treated the muscle symptoms by smoking marijuana which made the connective tissues loosen up and let go with an audible pop sound that could be heard across the room. Marijuana was prominently listed on the two oldest medical texts in history and when I smoked it the relief was considerable. I had smoked it in high school and it had been a way of not dealing with my emotional problems like my parent’s divorce. It is a depressant and when smoked every day leads to depression. In high school it had actually made me more depressed, not less so. It held me back until I managed to quit smoking it after a few years and went to college instead. Marijuana has a tendency to lower your immune function as well as depress your central nervous system. It is also illegal. My physical pain was so intense that I weighed my options as an adult and decided to continue to use what worked.
I could move around my ten acres and I was happy here, no one bothered me. On one side of the property was a cattle ranch, on the others a horse ranch and a goat ranch. The front of the property was on the road, but trees screened the house from view. At the back fence of the heavily wooded ten acres was a limestone quarry that was being worked only occasionally. Just inside the back fence line of the property was a small creek that held water but only ran free after the rains came. The rolling hills were home to lots of wild life, I even saw the red fox and black footed ferret. The Indian name for the area was Land of Good Waters because of the many rivers and streams, some of it spring fed. It looked like a great place to raise kids to be Tom Sawyer, there were limestone caverns everywhere and arrow heads could be found in the stream after rain. People had lived here for thousands of years. I captured the rain off the tin roof of my old house in two large vessels and put it on my garden to grow a lot of my own food. My friend told me it would be so quiet out in the country I might have trouble getting used to it at first and getting to sleep. He was right, but after 20 years in the big city, life in the country was a gift. I had lots of time to myself and I had enough peace and quiet where I could think. 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. For 18 months I stayed alive in the Hill Country and then when I experienced a partial recovery I moved to West Texas to care for my Grandfather. My illness still came and went and when I was able to work I fixed old used cars and sold them on the internet. I was alone eventually and in my fifth year of being sick the illness seemed like to would eventually do me in for sure. When the symptoms relented I traveled to Cuba for a few weeks in a kind of last harrah.
When I first got back home to the south plains I couldn’t get off the couch for 2-3 weeks. This was about typical of what I had gone through for nearly five years but now late in the fifth year the relapse that came next was the worst one ever. Part of the cause was my exertions on my trip and part of it was just the natural progression that was unmistakable. 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, not from drug abuse or lack of character as people were want to believe…but I just didn’t have the energy. I don’t know how many months went by in this state, but 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 again and didn’t mind when people visited for short period of time as long as my energy held up. 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 health experience of the past year was so awful that I eventually went to a health food store and asked about a doctor of non-traditional medicine. They gave me a name and for a couple of months I forgot about 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 the doctor I was given and went for a visit. He was an osteopath, a form of humanity which I had never met before. He had told me to bring my vitamin supplements and as he looked them over he said, ‘Well, you were on the right track”. He examined my back and commented on the ever present back spasms. 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 passed out for an hour as the IV drip did its work. After the doctor and nurse saw my back spasms and saw me pass out it was clear they thought I was sick and needed treatment. This was the first time in five plus years I was given medicine and not treated as a malingering psychosomatic. They actually treated me and believed me when I told them I was ill. I could hardly believe it. 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 first half of the year I ate the food out of my garden and brown rice and tried to take care of myself. 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 contemplated someday going to study osteopathy and making a difference in the lives of people who were suffering like I was. It was the first time I had had the luxury of thinking about the future in years.
At the beginning of August I loaded up the dog and cat and my bed and a few boxes, drove to Lubbock and moved into a garage apartment. The owner was a very nice lady and the apartment was a rotten wood structure about to fall down. I wasn’t going to the doctor anymore because I couldn’t afford it and my muscle pain was very intense again. I started to register for classes. 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 had given up on the idea of studying osteopathy and becoming a doctor but I still 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. At the beginning of my first semester my energy level was not good. 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. The math was not my strong suit and very challenging while I could excel in the biology courses. Chemistry was my weakest subject and I needed help. I was glad to be out of the small town and back in school but it was not going to be easy.
By the spring semester I felt better and began to ride my bike six blocks to the campus. After less than a week of this my leg muscles would begin to lock up like a marathon runner when too much lactic acid is produced. 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 grades in the washout biology classes several times and it was only my last test score that kept me from making an A. I was doing better physically but I still had to drive to the university and then ride my bike around campus. 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. People were living and dying every day dependent on what researchers and scientist could learn and what techniques and technologies they could bring to bear. 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 got a job working with my favorite microbiology professor in the second semester and then 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. Things began to go really well for me. My father saw that I was making a recovery and working so he bought me a new VW beetle and a laptop computer. I moved into a small house as an investment. 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. My relationship with my new neighbors was problematic because I was in constant pain that had a tremendous effect on my mood. I kept to myself. When my health and other complications became too great to continue I quit the field. I loaded up my belongings into a U-haul van and went back to Houston with an excuse to my parents that I wanted to take a break from school and regain my health. Since I weighed 120 pounds they didn’t put up any argument. I put my belongings into storage and moved into the parent’s guest room. After I recovered somewhat I implemented an idea for a biodefense medication that could be used in a national emergence. 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 works. I was still not in perfect health but I had made real progress in my recovery and now I had a chance to turn the years of suffering into an opportunity to save human lives. 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 cured but I had turned the corner and had a reason to continue fighting.

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