As I write this, it is a sunny day in March, 2001, and I think about my approaching anniversary. That day in June 1999, when I was diagnosed with Scleroderma, a rare, incurable, rheumatic, auto-immune disease where the body can not rid itself of excess collagen that builds up in the connective tissues, both externally and internally, to varying degrees. Since that time I have lived day to day not knowing if I would be among the (approximately) 50% who die within the first 5 years of onset, the 70% who die within 10 years, or the 30% who live many years beyond. The severity and symptoms of this disease can very greatly from one individual to the next.
If it were not for the Internet, I would not begin to know the details of my disease process or the potential treatment options available for it. It has allowed me to meet hundreds (not just a few) of other patients, such as myself. Together we are able to compare our experiences with symptoms, diagnostic procedures, and treatments. Amongst us you will often hear it said that we learn far more from each other than we've ever learned from our doctors. In addition, we are able to offer each other the type of support that no one else can. Unless you are one of us, there is no way you can truly understand how we feel.
I have found that the treatment option offering the highest incidence of remission with the least threat of harmful side effects, known at this time, is the antibiotic protocol, developed by the late Thomas McPherson Brown, MD. Although I did first learn of this treatment from my physician, I never would have known about its proper administration had it not been for the Internet. The Internet allowed me to network with people from around the world -- those suffering with Scleroderma, Rheumatoid Arthritis, Mixed Connective Tissue Disease, Lupus, Fibromyalgia, and Ankylosing Spondylitis, just to name a few -- who are following this protocol with varying degrees of success. The majority find that, in time, they travel "the roadback" all the way to remission.
You may reference the following two books, written by Henry Scammell, to learn more about this treatment: "The New Arthritis Breakthrough", or "Scleroderma, the Proven Therapy That Can Save Your Life". In addition, we are hopeful that the results of a clinical trial, using minocycline to treat scleroderma, currently being conducted by Dr. David Trentham, Head of Rheumatology at Beth Israel, in Boston, will be released later this year.
How it began for me:
Over a period of twelve months I gradually at first, then rapidly, progressed through a series of symptoms that began with horrifically painful finger ulcers. You see, I also have Raynauds Phenomenon, often a companion disease to scleroderma, and this is one of its typical manifestations. Due to its causing a hypersensitivity to cold, it triggers a blockage of circulation in and out of the hands and feet.
Also, my right knee joint would become very painful and stiff, for weeks at a time, causing me to limp and have difficulty climbing stairs. This symptom would mysteriously and abruptly come and go. Next I noticed my finger joints stiffening. Many of the fingers would eventually curl inward toward the palm and become immobilized. At the some time the skin on the backs of my hands and my forearms tightened. Most people can use their finger tips and "pinch up" fleshy areas on the tops of their hands or almost any other place on their body. I could no longer do this.
My forearm skin was tight and felt like I had a case of poison ivy on top of a sunburn. The itching and burning sensation was caused by the collagen building up in the tissues and exerting pressure on the nerve endings. Although not visible, the tissue of my forearms also felt bruised in several places -- just as if someone had taken a tiny hammer and randomly played it along my arms. In time, the skin tightened on my upper arms, face, legs, chest, and torso as well, all of it itching and burning to some degree and always accompanied by the tightness and pulling, limiting motion when I tried to raise my arms or legs or even to raise my head to look at the sky.
Gastric problems are also a hallmark of scleroderma. I developed acid reflux that required constant antacid medication. Those with serious problems sometimes loose the ability to eat solid foods. Sometimes they end up on feeding tubes. Permanently.
You might think this would be enough. But not so. There would be times when any one of the major or minor joints in my body would suddenly scream with sudden, stabbing pain. Thankfully, this pain was not constant but it was unpredictable, both in occurrence and duration. Early on I had started to experience stiffness in all my joints. To get out of bed or raise myself from a chair took time. I had to extend my limbs gradually due to cramping and weakness. Often I could barely walk twenty feet before I would have to stop for a while. It was as if my muscles would seize up.
Oh yes, weakness and fatigue. Seizing up. I could barely bend over to pick up an object from the floor. I could barely walk at times because of all this and the fatigue. Fatigue is so much more than being tired. It is extreme weakness and lack of energy. Life becomes a struggle getting through the day -- agony until one can lie down again. For those of us who have had to maintain employment --if we can -- life becomes a trip between the job and the bed. Nothing, or very little else, in between.
When I was first learning about scleroderma, and the various treatment options, I was hesitant to accept the antibiotic therapy. Wouldn't it have a more widespread acceptance as a mainstream treatment protocol if it really worked? I also encountered many naysayers, both in the medical community as well as with the fellow patients I was meeting on the Internet. I kept hearing it was an "unproved" therapy. I myself was taking 100mg of minocycline twice a day, everyday. After six months I could not tell if it was benefiting me or not.
I had read that those with scleroderma, unlike rheumatoid arthritis which generally responds to minocycline alone, often need to take IV clindamycin in conjunction with the oral minocycline. My rheumatologist would not consider adding the complement IV's. Because I did not know what to believe or think about the antibiotic therapy at that time, I did not push the issue.
It happened that in the seventh month of my therapy I developed a septic finger ulcer that required me to be on a four week course of IV cefazolin and a six week course of oral Cipro (both broad based antibiotics). While taking these I was not on the minocycline. At the very conclusion of this treatment, I began to experience a dramatic improvement in my symptoms. My rheumatologist did not think any of the antibiotics had influenced this outcome. He conveyed to me that he thought my improvement was "spontaneous" (unexplainable). I did know that scleroderma can either "back off", or go into remission, at times for no known reason. I knew this was a plausible explanation for what was happening to me.
In the six months that followed, I got my life back. At least 80% of it. After where I had been, I knew I could be happy if I never had more than that again. I was not on any drugs during this period except for heartburn. I often thought and wondered about the possibility of there having being a connection between my having been on the antibiotics and my relative good health at that time. However, I got lazy. I convinced myself that the "remission of sorts" I was experiencing would last for years. I did not look further into the antibiotic protocol. I had only skimmed the information I'd found about it before, and I'd seen no mention of cipro or cefazolin being used to "boost" the minocycline. I let the sleeping dog lie. What a mistake. In the seventh month following my initial improvement I began to notice the reemergence of vague symptoms, just like I'd originally experienced at the onset of my disease. Could it be coming back? Oh yes. Indeed it was.
I decided to revisit the antibiotic protocol. This time I learned that Cipro IS sometimes used in conjunction with minocycline. I have communicated with several people who have used this combination with success. Even though it can be argued otherwise, it is very likely that this is what caused my "turn around" before. I have also learned, that this is a slow therapy, especially for those with Scleroderma. It is not unusual for it to take six months, or more, before seeing significant improvement. I have been back on it for almost three months now. If I had continued taking the minocycline, the first time around, I believe I would not have redeveloped my symptoms. Thankfully, at this point in time, they are limited to the skin for the most part.
The tetracyclines, and minocycline have been around for a long time. I honestly believe that if minocycline were just being "discovered" and developed, that things would be different. Also, if this therapy comes into widespread use, profits will fall off on many other drugs, now commonly in use, to treat pain and inflammation for the various rheumatoid diseases. It may sound simplistic, but I really believe that concern over the loss of profit has stood in the way of the promotion of this therapy. If you cure the diseases, who will use those drugs?
In closing, I have to say that the information I have found on the Internet has saved my life. Granted, this statement may yet be premature, but I have to believe it. Just read our stories here at this site. You will find them compelling.
Sharon C. (Campy)
New Hampshire, USA
Diagnosed Scleroderma & Raynauds, June '99
You can contact me at firstname.lastname@example.org