If someone had told me 5 years ago that I would be diagnosed with a rare, life-threatening illness, I wouldn’t have believed it. If someone had told me a year later when I suddenly became severely ill that I would ever feel well or “normal” again, I wouldn’t have believed that either. Yet both are true. For me, as for many dealing with rheumatic illness, the road has been very rocky. But I now consider myself well again, and that’s thanks to AP. My first serious symptoms appeared after the birth of a child in late 2000. Over a period of months, I developed an increasing variety of symptoms, including constant digestive complaints,sore throat, headaches, stiff and sore neck, severe reactions to changes in temperature, visual disturbances, and other ailments. Doctors couldn’t find anything wrong and attributed my problems to post-partum stress. One night I woke up in a cold sweat with numb arms, fuzzy vision, racing heart, a mouth full of severe sores, and bright red eyes. I returned to the doctor’s office, where they suggested that I had had a panic attack. I asked how that would explain the continued numbness in my arms, and the sore eyes and mouth. They scowled at me. Finally, they consulted another doctor, who sent me to a neurologist for evaluation for possible MS. The neurologist was convinced I had MS, but the MRIs came back negative. He said I probably had carpal tunnel and sent me away. Back at my regular doctor’s office, I asked for a referral to a rheumatologist (My family has a history of rheumatic disease, and I had started to suspect that my problems could be rheumatic in nature.), but the physician’s assistant said that was “nuts.” I called a rheumatologist myself and made an appointment. To make a very long story short(er), I wound up seeing a total of 6 rheumatologists, a hematologist, endocrinologist, 2 ENTs, a psychiatrist, and a neurosurgeon over the next two years. None could figure out what was wrong with me, except for one of the ENTs, who suspected that I had relapsing polychondritis. Unfortunately, the rheumatologists would not agree to that diagnosis because they could not see textbook symptoms (This condition has no blood markers in many patients.). I was told I had fibromyalgia, allergies, depression, and several other “blow off” diagnoses. By this point, I had come across the road back foundation website and decided that I wanted to find a doctor to help me get started on AP. I figured that I had nothing to lose by trying AP because it was such a benign treatment, and the doctors kept telling me how “good” my condition was, though I could tell my body was falling apart. (Over the months, I had continued to develop new symptoms including swallowing problems, severe swelling in my rib cage, inflammation in my nose, and bright red, sore ears.) I decided to see Dr. T. in Boston. Prior to my visit in August 2002, I mailed him a summary of my symptom history, the various doctors’ opinions, and copies of my numerous lab reports and imaging test results. When I met him, he immediately said that he knew what I had and asked if I wanted to know what it was. He then said that I had MAGIC syndrome, a combination of Behcet’s disease and relapsing polychondritis. I was familiar with these conditions from my extensive reading, and the diagnosis immediately felt right. Because I seemed to be in pretty good shape at the time of my appt., and because AP is not a proven therapy for my condition, Dr. T. did not prescribe it for me. (As a rheumatologist at an academic institution, he undoubtedly walks a fine line in recommending AP for patients with rarer rheumatic conditions, so I do not fault his judgment in my situation.) Still determined to try AP, I researched doctors within driving distance of my home and traveled to see one who seemed open to working with me. He prescribed Minocin (200 mg. per day) and flagyl (500 mg. per day) for me, and I began treatment immediately (This was October 2002.). Within days, I noticed improvement in a number of symptoms. The inflammation in my eyes disapppeared. The numbness and pain in my arms improved. My ears stopped turning red. I had a mini-herx after about three weeks but rapidly improved after that. My symptoms had all but disappeared within a few months. I stopped thinking about my illness 24 hours a day. I felt so well on AP that I decided to have a second child. I remained on a modified AP regimen during the pregnancy. After the birth of the baby in January 2005, I started having asthma-like breathing problems and apnea-type symptoms at night. I restarted minocin, and the problems improved greatly within several days. I do not really believe in the concept of “remission” for rheumatic diseases. Based on my experiences, I believe my condition is always present. However, I am able to manage it very effectively with AP. My doctors (an internist and an integrative medicine doctor–I no longer see a rheumy.) are very impressed with my progress, and I intend to continue on AP on a life-long basis. I want to encourage patients to go with their instincts–I just knew that this was the right treatment for me, even though it is not documented for my specific condition. I’m glad I placed my bet on AP.
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Road Back Foundation does NOT offer medical advice. You should consult with your physician regarding any protocol that you are considering. The Foundation does not endorse any specific products, treatments or protocols. Material on this website is for educational purposes only.