June 2000. It's been more than 7 years since I was first diagnosed with an autoimmune disease. Early this year I was told that my diagnosis was not CREST, a "mild form of scleroderma" but mixed connective tissue disorder. I am not surprised. After 7 years, I have researched this disease so that I had guessed the true diagnosis. I am finally feeling and looking much better. It took quite a lot of determination to my health to get there, but worth it. I was completely blessed by having doctors who knew the dangers of traditional treatment, and were interested in exploring other treatments. It was divine intervention that I found Harry Scammel's book The Road Back. The book led me to treatments, which brought back my health. But let's go back to the beginning of the story.
1993: Scleroderma - CREST. I was horrified. My doctors told me this was the mild form, but I knew differently. I wish I had not waited to start the antibiotics. This illness quickly ravishes the internal organs, with few symptoms until the damage is done. I was not interested in symptom reduction. My goal has always been CURE. Stabilization of the process was the best the doctors were predicting. I decided that I would have to take charge of my CURE. Here it is a new millenium and there is new research daily. So much so, that any one doctor could not keep track of new data that could be the CURE.
You see, I am a Psychologist trained in research. I know how to read research and the medical journals. I may not know medicine, but I can read, and review research. Living in New York, I have access to some of the best physicians. But, I have contacted physicians from all over. I discovered you just call them, and they will give you an appointment. Many have e-mailed me with advice. I also believed that the CURE might not come from research of rheumatologists. This is a disease of the immune system, so I also kept track of work from immunology.
I felt my first rheumatologist protected me from the truth of the illness, because he did not have a treatment to change the prognosis. He told me that my illness was mild. He never told me that eventually this illness could attack the lungs, heart, and kidney. But, at the very first visit, he told me that I did not want to take prednisone. At the time, I didn't understand what he meant. I read "The Arthritis Breakthrough" and learned about the damage steroids can do to the immune system.
He told me that I had a good attitude so I should do well, since that was the only thing I could do to fight the illness. But slowly my energy and drive were gone. Even earlier, there were many symptoms, but they were so disconnected that I did not realize what was going on. In the early 1980s intermittent neck and knee pain started, then the Raynaud's got so bad I had to give up skiing. I had skied every weekend for more than 10 years. I was also diagnosed with irritable bowel syndrome. By 1989, I had red spots on my face that wouldn't go away and the skin around my mouth had tightened.
1993: I had a terrible sleep disorder due to the constant pain in my neck, wrists, elbows, knees, shoulders and back. I had carpal tunnel syndrome too. By that time, most regular exercise was almost impossible. I thought I would have to give up my regular tennis game.
June 1996: I was at my sickest. Work was the total of my existence. I no longer had energy for friends or any other activity. I would come home from work and sleep. I would forget social engagements. I had constant infections, sore throats, and bronchitis. I kept getting sick: sore throats, flu like symptoms, terrible fatigue, and bronchitis for at least a month. I would get frequent digestive problems, and joint and muscular pains especially the neck, the knee, wrist, and elbow. Something always hurt. I was unable to sleep, waking from the pain, but fell into bed all weekend and as soon as I came home from work.
Getting up in the morning to go to work was exhausting. Showering wore me out. By the time I drove to work, I was totally zapped of energy. At meetings I could no longer concentrate. When speaking I would lose my focus. I would forget things, or drop things. My generally optimistic spirit was gone. Depression and anger was overtaking me. And the Raynaud's was getting worse. I couldn't tolerate the temperature dropping below 73 degrees. I carried antacids, and digestive enzymes, aspirin, and allergy medication. Summer and winter, I carried two pairs of gloves and hand-warmers everywhere I went. I could no longer wear high heels, but had to have orthotics in my shoes. My shoes frequently were apres-ski boots and two pairs of socks. I would go to sleep with socks, gloves and two or even three layers of nightclothes, and sometimes even a hat. I was not a pretty picture, and worried what this would do for my marriage.
Looking for something to improve my predicament, I had read about scleroderma in mid-85, but couldn't believe I could have such a devastating disease with no cure, and no one knew what caused this. It was easier to believe it was just Lyme disease. During the years of 1985 to 1993, I thought I had Lyme disease, and convinced a doctor to give me antibiotics. Each time I stopped the medication the symptoms came back.
My dermatologist knew about using minocycline for autoimmune diseases and had prescribed minocycline in 1985, but I did not get the positive results as I had with other antibiotics. I actually felt slightly worse. At that time, I did not know about the "herx" reaction. This is when you get worse before getting better.
When I finally was diagnosed in 1993, I spent hours looking for information. I looked in medical journals, textbooks, and found the internet. I believed there must have been researchers who were finding cures, not symptom reduction, but cures. I found "The Arthritis Breakthrough" in Jan 1996.
Trained as a scientist, I was unconvinced by the personal stories, (after all, it might not be generalizable) but found very credible the story of how prednisone became the treatment of choice. Knowing that science must be conservative in confirming new theories, I could not discard the idea of antibiotics. Dr. Brown's story about curing the gorilla with antibiotics was not to be scoffed at. And, how come so many people got better? Every new theory begins with an observation in nature. And why was there no theory as to the cause of autoimmune diseases?
My rheumatologist and my GP retired just as my ANA shot up from 1:160 to 1:640, and my symptoms really got bad. Once again, my dermatologist intervened and suggested I see an immunologist.
The immunologist explained to me that the scleroderma was an "autoimmune disease," and that there was an infection (probably a virus) which activated the immune system. The immune system was attacking my own organs while it attempted to get rid of the "disease". The autoimmune disease was a consequence of an immune deficiency, and the treatment was gamma globulin intravenously (IVIG) every three weeks. Now here was someone saying that there is an infection! It didn't surprise me. My white blood count was constantly slightly high for years, and no one had done anything about it. Immediately there was improvement with the gamma. But I still was getting ill. I continued to get sore throats. All of a sudden, I was having allergy attacks and asthma was added to my list of symptoms.
Dec 1996: My G.P. tested me for strep, and it was negative but he told me about "mycoplasma" (a virus living in a bacteria host - I then read and researched mycoplasma in the medical textbook that I found in medical library in the hospital where I worked.) He prescribed doxycycline. Once again, I began to show improvement, and several weeks after I stopped the doxycycline I felt worse again. The sore throat and bronchitis came back. Could it be true about Dr. Thomas McPherson Brown's theory that mycoplasma was causing autoimmune disease?
It was a classic "single subject experimental design study" used in medical and psychological research. Every time I was given doxycycline I would improve, every time it stopped I would have more symptoms. It seemed to me that the evidence was clear that antibiotics were going to help me. Each doctor added information that led me to believe that antibiotics could change the course of my illness, if I would only stay on them long enough.
It seemed to me that there was no reason not to combine the antibiotic treatment with the gamma globulin. Dr. Doc, who is online, sent me a journal article discussing the use of both. Just maybe it would help.
My immunologist, who does not want me to take any of the immune-suppressing medications, agreed that the antibiotics would not harm me, but was not convinced that he should order the antibiotics. I understood that this was not his expertise.
Feb 97: Ethel Snooks urged me to quickly see a doctor she knew with experience with clindamycin and scleroderma. He was merely 80 miles in New York metropolitan traffic from my home! I thought I would only see him a couple of times since he was so far. But, he was so knowledgeable that I have made him my regular rheumatologist, overseeing my medical care. He started me on doxycycline and added oral clindamycin at the second visit for a week every 8 weeks. The clindamycin stirred everything up. I had the most difficult time at first. I coughed, I wheezed. I had every respiratory symptom intensified. It was not like anyone else's "herx" that I had read about. For 3 weeks after the clindamycin, I began feeling better. Then the exhaustion came back. For the first time in years, my ANA dropped to 1:320.
May 97: The second time I took the clindamycin I had the worse sore throat of my life. It was like my throat was on fire. It was far more intense than usual. After the week of the clindamycin I would still get sore throats, but only when I was getting tired. And the fatigue was a little less. The symptoms seem to get worse with each round of clindamycin while I take them, then for several weeks I feel almost normal. The symptoms come back, I have another round of clindamycin and afterwards feel good again. My ANA jumped up again to 1:1280.
September 1997: Six months of clindamycin. The Echocardiogram shows improvement in the "tricuspid insufficiency" which is now described as trace (36mm. hg). Six months ago, it was described as mild (44mm. hg). The oxygen diffusion improved from 44 % to 50% (after the first 6 months of antibiotics), and the CAT scan of the lungs showed less fibrosis. I still need to improve, but the other doctors had not expected improvement. The best they hoped for was "stabilization". My ANA is back at 1:640. I think the skin on the back of my hands is getting looser (but that is subjective and can happen spontaneously), and my IV nurse tells me my veins are getting softer! I can now exercise with out being "totaled" for the day afterwards.
I continue to have sore throats and shortness of breath and burning in my lungs, joint pain and fibromyalgia, but somehow I am beginning to really feel better. I have even begun to believe that I will get better. Now the neck pain and knee pain has actually gotten worse. But my breathing problems and sore throats are improving. My energy is improving. I have begun to sleep normally and for the first time in years wake early and cheerfully. I still get tired, but later in the day. No longer does taking a shower totally use up my energy. Once again, I can exercise. And when people ask me "how are you?" I can say OK without thinking to myself, that is a lie. I have begun to think that I will not die, at least, not quite so soon.
Trained as a research psychologist, I wanted the test results to show improvement before I would get excited about the improvement. Now the tests are all improving, a little at a time, but always a little better.
1998 Updates February 98 update: The pulmonologist ordered oxygen when I sleep and when I exercise. I feel like he is two years too late, and that I was far worse then. He tells me that my blood oxygen drops too low during sleep and exercise, and I will feel a lot better. It is so scary. I worry that I have gotten worse and I am not aware of it. The first time I used it, the oxygen seemed to cause bronchitis. It as if the added oxygen stirred up what ever is going on with my lungs. I started the clindamycin and it stopped the bronchitis-like symptoms in 2 days. This is clearly better than ever before. Previously, I would get bronchitis and it would hang on for at least a month!
April 98 update: I took several trips to Houston, San Antonio, Florida, Virginia, Maryland and Mass. Arrangements for the oxygen became a real problem. My doctor is right that the oxygen does help me. I can exercise much better, and my sleeping does improve. But I really hate using it. My worry is that my lungs will not compensate, and I might need it all the time. But with all the travel, I had no exacerbation of symptoms. I actually feel pretty good.
May 98 update: The burning in the lung returns. I got a puppy. Could he be stirring up the allergies? I am wiped out again. I need a nap almost daily.
Aug 98 update: I continue to use the oxygen. It seems that the breathlessness is getting worse. But the carbon monoxide diffusion has not changed. It still remains at 50%. My exercise with oxygen is improving, and I am less tired. I seem to take fewer naps during the day. A month ago, I had a terrible bout of diarrhea, probably food poisoning, although my husband ate the same food, and didn't get sick. The burning in the lung area seems to have disappeared. Also, the sore throats have disappeared. I feel good enough that we are planning a trip to Italy.
1999 Update We went to Italy in October of 1998. A truly wonderful and exhausting trip. But when I returned my pulmonologist reported an increase in the fibrosis, and wanted me to have treatment that is more aggressive. I continue to want to avoid immune suppressing medications, since they probably do as much damage as the illness. Photopheresis was recommended by several of my doctors. I also went to see an expert in lupus, and he concurred.
It took almost six months to start the photopheresis, because I felt I needed the insurance to agree to pay. Finally I decided not to wait any longer, and told the doctor that we should start immediately. May, June and July I had the two-day treatment of photopheresis. It is a process that removes the blood, then separates the white blood, then exposes it to a light source, and then the blood is returned. This process modifies the immune system, but does not suppress it.
After the three treatments my ANA dropped again to 320, the RNP antibodies fell to normal, and the anti-cardiolipin antibodies disappeared. I felt better than I have in years. The fatigue and flu-like symptoms were completely gone. The Raynaud's symptoms were virtually gone. I was sitting with short sleeved shirts in December. When I go to sleep, I no longer wear 3 layers and can wear a single nightshirt. The burning in my lungs has disappeared.
Although my lungs are my biggest concern, I have had other issues this year. I had more stomach problems, finally diagnosed as irritable bowel syndrome. This was something I have not had in years. Nodules were found in my lungs and breast, but I quickly got second opinions and was relieved to find they were not a problem.
The ANA popped up after 5 months without photopheresis, and the anti- cardiolipin started creeping up again, although it remained within the normal range. In Dec of 1999, the photopheresis was reinstated.
So, here I am in the new millenium. I generally feel and look better.
What is curing me? I don't know, but I am not willing to take immune-suppressing medications. Maybe it is just the visualization, and exercise or that I stopped working, or that my friends pray for me, or that I have the best support from my friends and family and my husband. You know what? I think it is all of it. But I am not stopping the antibiotics.
My diagnoses are mixed connective tissue disorder and common variable immune deficiency, for which I get gamma globulin IV (IVIG) every 3 weeks. My antibiotics are: Minocin, 100mg AM & doxycycline, 100mg PM, Monday, Tuesday, Thursday, Friday, & clindamycin 150mg (BID) on Wednesday Then, every 10 weeks for 5 days I take 1200mg of clindamycin and stop the other antibiotics. I also take colchicine and zystril. I am continuing the photopheresis also.
You can reach me at LindaRTC@aol.com
See my web site about mixed connective tissue disorder at: http://hometown.aol.com/lindartc/index.htm