JOYCE, sero negative rheumatoid arthritis

My story began in 1982. At the time I was an undergraduate college student. One day, late in the fall semester, I came home from classes with a sore throat and fever. By the next morning I felt terrible and went to the doctor for a throat culture. It came back positive for strep throat. Interestingly, the doctor told me it was not the usual strain. She gave me a prescription for antibiotics. I recovered and returned to classes. Shortly after that I contracted yet another severe sinus infection. Again I was given antibiotics and recovered.

It was shortly after these two infections that I began to notice arthritic symptoms. The first thing I experienced was a stiff neck. This was accompanied by a general feeling of malaise, unexplained fevers, loss of appetite, and overall aching in the joints. Because lab tests were negative for RA and the symptoms seemed to come and go, the doctor initially concluded that they were simply related to the stress of school. On the theory that my problems might be related to incorrect body position and alignment, a teacher suggested that I enroll in an Alexander Technique class. Unfortunately, it didn't help. Because I felt ill much of the time, I had difficulty preparing my lessons for school. I felt very badly about not being able to perform at the level that I had previously. I saw my career dreams slipping away rapidly.

In the summer of 1983, other joints started to become involved. After several short episodes of pain and stiffness in the knees and ankles, I developed a cyst behind my left knee. This caused the tendons to contract to the point where I could hardly straighten it. Within a few days, it had become swollen like a grapefruit. The ankle swelled up so badly that joint fluid bled into the tissues in the upper portion of my foot. Not having any confidence in the doctor who insisted my problem was stress, I went to the emergency room of a local hospital. I was seen by an orthopaedic surgeon who knew instantly that something was seriously wrong. He referred me to a rheumatologist who confirmed the diagnosis of rheumatoid arthritis.

To relieve the inflammation, the rheumatologist placed me on 14 aspirin a day and injected my knee and ankle with steroids. The knee returned to normal but the ankle continued to flare despite the medications. The high dose of aspirin caused mental fogginess and severe, chronic exhaustion. I had a very difficult time getting going in the morning and continued to drag throughout the entire day. All I could think about was getting home so I could crash. I was irritable and moody and probably not much fun to be around. When I reported these side effects to the doctor, he told me they were not due to the drugs, but to the chronic anemia caused by the RA. I would just have to learn to live with it. In order to function I began drinking gallons of caffeinated soft drinks.

Despite these obstacles, I somehow managed to complete my college studies. In the years that followed, the disease progressed slowly. I found that 14 aspirin a day were not enough. My aspirin dose was increase even higher and I was placed on plaquenil. It produced no noticeable results. My stiffness increased and the palms of my hands and feet developed an awful burning sensation in them. When my left wrist and a couple of fingers became inflamed the doctor recommended oral gold pills. However, a few weeks after starting them I began to develop sensory disturbances in my skin consisting of burning, prickling, itching and tingling sensations. Afraid I was going to break out in a rash, the doctor discontinued the gold and put me on azulfidine. It did something horrible to my brain chemistry and caused a sudden and rather dramatic depression. My doctor took me off of it immediately after discovering the depression was a very rare but documented side effect. Methotrexate was offered as an alternative but at the time it was rather new and I didn't want to risk it. I decided to tough it out on my old aspirin routine with occasional steroid injections for problem joints.

Several years later I decided to return to graduate school. For the first year my disease seemed relatively stable. Though still in pain, I managed to survive on my aspirin and caffeine regimen and did quite well with my studies. However, the disease soon became active again. I found a new rheumatologist who, once again, recommended gold. This time we decided to go with the injections with the hope that I would tolerate them better than I had the oral version.

At first, the shots seemed to do nothing. But then my joints slowly began to improve and, after a few months, I was in complete remission. However, the relief soon turned to terror. I developed a bizarre series of neurological problems in response to the gold. It started with the same sensory disturbances I had experienced on oral gold and escalated to balance and motor coordination disturbances, numbness and palpitations. My entire nervous system seemed to be completely off balance. I was referred to a neurologist who ordered an MRI brain scan and a CAT scan of my lower back, but they revealed no abnormality. I was seen by several more doctors, all of whom were baffled. I was given several additional tests including an EEG and tests for lead poisoning but no neurological disorders were found.

I suggested to one doctor that the gold injections were causing the problem, pointing out that the symptoms had escalated immediately following each injection and had increased gradually with the accumulation of gold in my system. I also pointed out that I had experienced sensory disturbances twice - once on oral gold and again with the injections. He angrily retorted that it was impossible that such a problem could be caused by gold and that the only plausible explanation for my difficulties were psychological problems. Once again I was accused of not handling the stress of school well. I informed him that I had never developed neurological problems in response to stress in my entire life but my objections seemed to fall on deaf ears. Unbelievably, he recommended that I continue the gold shots. I refused and, after several months, recovered completely. I have never had those symptoms again since.

After the gold disaster, I returned to school and once again resumed by simple NSAID routine. Fortunately, the rheumatologist I was seeing at school was understanding about my wish to discontinue the gold. Because the aspirin was causing me stomach problems, he switched me to flurbiprofen instead. Much to my surprise, the problems I had experienced earlier with exhaustion vanished on this new drug. As it turns out, my lack of energy had not been due to anemia but to the toxicity of the high dose of aspirin. I was able to give up my huge dose of caffeine. I completed my graduate studies and passed all of my exams - with no unusual symptoms of stress, I might add!!!

Just before I was to graduate, my disease took another turn for the worse. This time the flare was unusually tenacious. I became so stiff I could hardly move. My left knee, which hadn't bothered me since the onset of the disease, swelled up like a grapefruit once again. I could hardly walk. The pain was excruciating and the swelling so bad that it caused my whole lower leg to become inflamed. Other joints began to flare up too. Just the idea of walking from the living room to the bathroom was almost unimaginable. The pain was so severe I couldn't sleep. My activities were severely limited and I was miserable. With few other options, my rheumatologist started me on prednisone and methotrexate. Unfortunately, the disease was so severe that the drugs just barely made the pain tolerable.

It was during this difficult period that a friend, who knew about my condition, called and asked if she could send me a copy of "The Arthritis Breakthrough" by Henry Scammell. I was very skeptical but agreed to take a look. Much to my surprise, the book seemed to make a lot of sense. I was further encouraged by the fact that the National Institutes of Health were running clinical trials on the therapy and that several major research universities were involved. I decided it was worth checking into further. After some research, I managed to get the names and phone numbers of several people who had already tried the therapy. Though still somewhat skeptical I called each of them. I was impressed by how genuine and sincere they sounded and was greatly encouraged by their stories of recovery. I decided I would try the treatment if the results of the NIH clinical trials were positive.

Following graduation I landed a job and had to move. I was still on prednisone and methotrexate at the time so I had to find a new rheumatologist in a hurry in order to have the required lab tests done. I was still in quite a bit of pain and was having difficulty walking so the rheumatologist raised the dosage of methotrexate even higher. It provided little relief and caused my hair to fall out. Not wanting to continue with it any further, I broached the subject of antibiotic therapy with him at my next visit. I presented him with a packet of journal articles that I had pulled from the local medical school library. His reaction was not favorable. In his most condescending tone, he accused me of being "a desperate person grasping at straws." He used several expletives to describe the antibiotic therapy and went into a tirade about "wasted research dollars." He refused to even look at the packet of information I had assembled, dismissing it as "pure quackery."

I was so insulted by the rheumatologist's arrogance and demeanor that I canceled all future appointments and began searching for a new physician. I finally found another rheumatologist who seemed open-minded about the therapy but was reluctant to venture into new territory. Rather than pressure him further, I decided it would be best to see someone who was experienced in using the therapy.

On the recommendation of other patients, I contacted a board certified rheumatologist in another state who was using antibiotic therapy. I had to wait several months to get an appointment. In the meantime, I weaned myself off the methotrexate. With only 5 mg of prednisone and 300 mg of flurbiprofen to curb the pain I was in dire agony. The inflammation in my left knee had finally taken its toll and had begun to cause severe cartilage damage. Nevertheless, I felt optimistic for the first time since getting sick. I had a strong gut feeling that the antibiotics would work and anxiously began awaiting my appointment. When the day of my appointment arrived I was given a complete work up. The doctor told me he thought I would be a good candidate for antibiotic therapy. I had already exhausted most of the standard treatments. Furthermore, the infections I had contracted prior to the onset of the disease strongly supported the infectious theory on which antibiotic therapy is based. I was given an oral dose of 50 mg. of minocycline twice a day. I was also sent to a physical therapist to work on my frozen and badly damaged knee. The doctor told me that the damage to my knee was so severe that, even if the treatment worked, it might not recover.

The results of the treatment were almost immediate. By the time I went home one week later, I was already feeling better. However, it didn't last. I was hit with a horrible and rather bizarre flare-up. Even joints that had not flared for years suddenly became active again. However, I was not alarmed because I knew it was probably the Jarisch-Herxheimer reaction - the flare that typically occurs at the onset of treatment when a mycoplasma infection is attacked by antibiotics. I was determined to tough it out and within a few weeks, started to notice the improvement. One Saturday morning I woke up and noticed that I was unusually free of pain. At first, I thought it might be a coincidence but the good days just kept coming. The horrible pain vanished and I began sleeping through the night. My morning stiffness was completely eradicated and I slowly began to regain the use of my badly damaged knee. Before long, I was bounding up staircases, shopping at the mall, swimming laps and doing other activities that had previously been terribly painful.

I continued with the prednisone for six months after starting treatment and then began to wean off of it, reducing the dosage by 1mg per month. It wasn't at all difficult. After that, I began weaning off the flurbiprofen. It has now been four years since I started the therapy and I am doing great! I have had no relapses whatsoever since starting the treatment. Though I still take minocycline, I no longer take any other antiarthritic drugs - not even NSAIDS! Prior to the start of antibiotic therapy, I had x-rays taken of my most affected joints. Three years later I had x-rays taken again. When the two sets were compared, they showed that there had been no new joint damage since starting the treatment. My sedimentation rate now hovers around 6 or 7 - a normal reading. Though I do still experience a minor flare from time to time, they have become less and less frequent over time.

At this point, I have to think really hard to remember how much pain I was in four years ago. Those days are over!!! In fact, when I reread my own story now I almost feel like I'm reading about another person. It's hard to believe that was me! I work full-time and have been able to pursue my career with all of the energy and enthusiasm of a normal person. I no longer worry about how arthritis will affect my future. I would strongly encourage anyone who is suffering from the pain of rheumatoid arthritis or any other rheumatic disease to try this therapy. In less than a year, this therapy completely reversed the course of my disease. It has literally given me my life back. I feel very optimistic about the future and hope those who are considering antibiotic therapy will be inspired by my story to give it a try.


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