Traveling When You Have Chronic Pain
The Road Back Foundation and chronic pain
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After reading about antibiotic therapy, I became very curious about its use and effectiveness. I began to wonder if it would help me. I sent to the Road Back Foundation, paid for their huge packet of information. I did not and still do not find that fee unreasonable considering the cost of printing and mailing this large packet from this non-profit organization. That was 10 years ago, and the rate may have gone up since then, I don't know. One thing I do know is that the folks at that foundation are not trying to sell me anything, and as far as I have always been able to tell they bear witness to what many people with connective tissue disease have experienced, positively, from antibiotic therapy. I would also imagine most of their information is available online now.
Like many of you, 10 years ago I was desperate for something to make me feel better. I was plagued with daily pain in many joints, particularly the sacroiliac joints, had frequent infections, particularly in the bladder and sinuses. Any sore throat or cold turned into acute bronchitis and took forever to clear up. I was even hospitalized with strep throat at one time because I couldn't swallow anything. During those episodes, I had more pain than usual, especially in the rib cage from the combination of coughing and inflamed intercostal and thoracic muscles. I also had frequent headaches from pain in the cervical spine and was constantly plagued by irritable bowel syndrome.
After reading all of the literature on the antibiotic protocol, the history of Dr. Thomas McPherson Brown and the NIH studies, I decided to try the antibiotic therapy. I took my huge packet of information in to my internist in California, whom I trusted and considered a good friend. When I presented the idea to him, he looked uncomfortable. He told me he had heard of it, a little bit, but didn't think it had gone anywhere. He said he would think about it. He called me a few days later and told me he had called the local rheumatologist and had heard from him that he didn't think much of the idea. That particular rheumatologist did not rate very highly in my opinion; therefore, I didn't care what his opinion was. Shaken a bit, I looked over the pile of information once again and decided this was something that gave me hope and I should, indeed, at least give it a try. It made a great deal of sense to me. I searched for a doctor/friend who would prescribe the low-dose doxycycline for me and started on it 10 years ago.
The first few weeks I was on the low-dose antibiotic therapy, I felt worse. I had read about this phenomenon, called the Jarisch-Herxheimer reaction and was a “backlash” of sorts. I had read that it would only last a few weeks and was willing to go through it if it meant I would eventually feel better. I basically felt lousy for about three months after starting the low dose-therapy. I read “The Arthritis Breakthrough” and continued to believe much of the criteria applied to me.
Now, 10 years later, I continue to take the low doses recommended by the Road Back Foundation. A few months ago, I decided to go off of the treatment, and it wasn't long before I had bronchitis and the worse cold I had had in years. I'm back on it now. I realized that in those 10 years I had not had a severe bladder infection, not one sinus infection and only this one case of bronchitis. Something was definitely keeping me healthier. Unlike some people on the antibiotic therapy, I have never been in remission from my disease and joint pain, which was finally given a name four years ago, relapsing polychondritis. Unlike some, I have talked to who suffered from RA or scleroderma, I have never been free of all of my symptoms, but I do believe it has kept my disease milder than it would have been. It has definitely had an effect on the history I had of severe infections.
Do I recommend low dose tetracycline therapy for you? No. I do suggest that you look it up, read about it and decide for yourself with the help of your doctor. There are many more physicians out there now who work with it than there were 10 years ago. Since no one knows what causes many of these connective tissue diseases, its premises are as possible as any other until science decides what's causing so many of us to live in constant pain. If this interests you, look it up at RoadBack.org.
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