In the fall of 1997, I had never heard of scleroderma. I was very familiar with RA [rheumatoid arthritis] as my paternal grandmother had it for over 70 years. So, when my hands started going numb at night, one of the first things I asked my doctor to check for was RA. She ran the rheumatoid panel and the only abnormality was my ANA was positive. When she faxed me the report and told me to make an appointment with a rheumatologist as soon as possible, I noticed that a positive ANA was one of the possible indicators of lupus, which I had heard of, or scleroderma, which I knew nothing about. So, I went online and was very upset by what I read.
I went to the local University rheumatology department and was told that I indeed had the early signs of scleroderma, the systemic form. There is a highly regarded health care facility where I live in Arizona and I went there for further diagnosis and hopefully for a state of the art treatment. After a week of testing, they concluded that I indeed had systemic sclerosis and that they were very sorry they had nothing to offer me in the way of treatment. Being a little on the bull headed, side I told the doctor that I was going to make it go away. The doctor smiled and said he hoped so. I’ll never forget how I noticed a tear in his eye as he wished me well.
Before I went to that nationally known health care facility, I had noticed a web site about a doctor in Iowa who had a clinic where he treated rheumatoid diseases with antibiotics. It caught my eye because I was born and raised in nearby Missouri. But, since neither the local University practitioners nor the prestigious health care facility I consulted with mentioned antibiotic treatment, I figured it probably didn’t work. So I began seeking alternative forms of treatment. For 4 months I did an aggressive acupuncture treatment along with some massage therapy.
By June I was still getting worse. Then, one night I was watching a news channel I rarely watch and heard a thumb nail sketch about a Harvard study of low dose antibiotic therapy to treat scleroderma! It had been a small study but had a success rate of around 80%. That was it!!! The next day I was on the phone to my doctor for a prescription for Minocin. I had no idea about dosing or anything, but I started digging for more info and got my medicine because I was fortunate to find a doctor who would work with me. I was going to make it go away!
Over the next few months, I read everything I could find about Dr. Thomas McPherson Brown and his protocol. I had a very hard time finding information but somewhere stumbled upon the name of the Road Back Foundation. Finally — I had a source for good information and I now had access to all their literature and this newsletter.
My doctor was not experienced with AP, but we worked together to develop a dosing plan. I had a very strong reaction to the antibiotics so I lowered my dose from every day to the MWF dosing schedule. By January of 1998 the ulcerations on my knuckles had disappeared but I continued to get worse in other areas. My hands continued to contract, my skin continued to harden and turn shiny and my face was so contracted I couldn’t floss my teeth. I had pain in the tissue of my body but not in my joints. The Raynauds was worse and I developed Sjogrens Sydrome and acid reflux. I had abnormal lung scans and function tests and was seeing a specialist who monitored me every six months.
In January of 2000, I had myocarditis and heart failure. The doctors said it had nothing to do with the scleroderma that I had contracted a virus that attacked my heart. However, I have read since then that this is not that uncommon among scleroderma patients. But after 5 days of being unconscious in ICU and on a ventilator, I was back on my “road” to recovery!
After 3 years on AP, most of my problems had stabilized. I knew my only hope for a somewhat normal life was in the antibiotics so I just kept taking them and waited. The ups and downs were hard but I had faith it was going to work. Plus the infectious component theory made sense to me. During my research of these diseases, I found out that my mother’s side of the family had a form of myositis. We had always been told it was MD [Muscular Dystrophy]. When I found out it was actually an autoimmune disease, I encouraged my cousin, who was confined to a wheelchair at this point, to try AP. He has been on the protocol for almost a year now and is starting to notice small improvements. But that is how it starts! The form my family has is IBM, inclusion body myositis. It is a very rare form but very debilitating. I had autoimmune disease on both sides of my family. After 45 years of being healthy and active, I developed mine.
Now, after 6 years of AP, I am so much better it is apparent to people visually. Many of my family and friends who doubted my crazy treatment that no one had ever heard of, had to admit something was improving my health. My hands are about 75% straight, my skin is almost normal but still a little darker on my arms, my face is almost back to normal, and I was released a year ago from the lung specialist after two years of normal scans. My echocardiograms are normal, and show no damage from the problem I had in 2000. I still have pain, but have cut my pain meds in half. The Raynauds is still with me and I still take medication for the acid reflux and still suffer from fatigue. But, if I pace myself, I can do whatever I want. I travel and can keep up on most adventures!
There is no doubt AP saved my life and reversed most of the damage my disease had done to me. It is a long road for some of us, but the only road as far as I am concerned. I try to spread the word as much as I can and owe many thanks to the wonderful people at the RBF. But, I still continue to learn of people dying from scleroderma over the years. It makes me very sad to think of their suffering. I experienced enough of sclerodermas damage to know that it is a horrible way to die. I am so glad I kept searching for an answer for my disease and the answer was in a relatively benign medication. I intend to return to that nationally acclaimed health care facility and tell that doctor about my journey. I made it go away and I want to share what AP did for me.