The Journey with RA SLE SS and FMSelfmarge@aol.com
RA SLE SS and FMS
In 1980, this all began with a swollen knuckle. Since I was a sign language interpreter, I thought I would see about it, as my hands were always aching. I saw a rheumatologist who would be treating me for the next 16 *1/2 yrs and he prescribed at first the nsaids, which gave me some relief. Then, my wrists and hips also began to hurt. That brought on the plaquinal and then the prednisone. We ventured on with more muscle pain and in 1983, I wound up doing a month of rehab at a rehab hospital to try and get strength back. However, it backfired as I had an over-enthusiastic PT who felt 30 reps of everything were appropriate! I went into a horrific flare that was so intense I was in a wheel chair as I was no longer able to walk. They gave me a full body brace, as that was the only way I was able to walk with crutches. This is how I was discharged ( after walking in). The medications were increased. Now, it was high dose prednisone, gold injections, as well as 3 different stomach pills for irritable bowel syndrome. I took off the rest of the school year and was able to get out of the wheel chair by teaching myself how to walk again. I held on to a desk chair with wheels. It did not end there. In 1985, I did finally get diagnosed with Lupus and Sjogrens Syndrome. The lupus was very active. I now was on 90 mg of prednisone for 1 year, along with imuran, a DMARD. To get this dosage down, I went for 9 months of Plasmapheresis( now known as the prosorba column) It reduced the prednisone to 20mg a day and then we added methotrexate for 5 * years. The memory problems, concentration and central nervous system issues made keeping my job impossible. The Sjogrens had been progressing as well and I needed to wear special glasses to keep the air from my eyes. The glasses were fully enclosed keeping dirt particles in the air from touching my eyes as there were no tears. I had a procedure done in which the drains for the eyes were permanently occluded. ( punctal occlusion) In 1988, there was much rejoicing when I sought the aid of a chiropractor who could not figure out why I still wore this body brace. With the aid of a technique called flexion distraction(stretching) I was out of the body brace in 3 weeks( I had worn it 5 years.) In 1993, my condition had deteriorated even more and IV cytoxan was the next move. I went once a month for the next 2 * years. I seemed to be doing better until in 1995 when the blood counts went down drastically and would not rebound. I was taken off this treatment and left with just prednisone. Two months later, I was incredibly sick again and now could not swallow food either. There was just no saliva. I was now eating soft watery foods. I sought an oral biologist for the trials of Salagen (pilocarpine). I did not qualify but he took me on as a patient and prescribed the drug. In 1996, on a visit to the rheumatologist, he had said there was nothing more he could do for me. At this point, I was so upset I went home and after a good cry, decided it was my turn to find a way out. I had just gone online so I went to the computer and on a bulletin board, there was the books on this therapy. I asked hubby to drive me for the book as I was unable to drive back then with the 22 medications I was taking. I did succeed in getting the book and read it.I was positive that God was talking to me as it seemed that these peoples stories were mine. The infectious theory made sense to me. I wanted so much to try this as I had always had a lot of sinus and kidney infections and whenever the doctor used antibiotics, my Lupus and RA symptoms improved greatly. I had even said at one point, \"it sure would be good if you could keep me on antibiotics as I feel so much better.\" I emailed the gal on an aol bulletin board and she told me she was in remission. Her name was Emma. She told me about rheumatic.org and immed.org. I went to my doctor, studies, protocol and book in hand. I asked him why this was never made available to me and he just laughed. I asked him for a prescription and he told me this would never work. I said that we needed to try it as I felt it would work. He was not supportive. I received a prescription, with a sneer from this doctor with no instructions on how to take it. I did not know that the brand was the best thing and the generics were not that effective so now I was on the wrong medication and he wrote the prescription for 200 mg a day. I thought I would go t protocol of 100 3x a week. I did that as I just had a feeling that it would be better.( I probably avoided a massive Herxheimer reaction!) My husband had a business trip i business trip in Boston so he looked up the AP doctor there as I did have RA and he uses the minocin for that. I was able to see him the following week. He felt I would do well on Minocin and was dismayed to learn I was already on it, 3 weeks all wrong! He explained how to take it, when to take it and how often. He felt that the Herxheimer was past and, besides, I was still on methotrexate and prednisone as well as an nsaid among the 22 drugs. The methotrexate and prednisone do lessen the chance of a herxheimer reaction, which I did not know then. He said we will start on the Minocin and take it from there, not changing any other medications.I decided to stay with him as I felt hope for the first time in years. His attitude alone made such a difference. I did not mind the almost 5 hour trip, 1 way. I did wonderfully. In about a month, I noticed I had more energy and much less fatigue. In 2 months time, the headaches had increased. I did have migraines anyway but somehow this was different. It continued along with aches and pains. I hung on! ( it eventually did let up as well as the brain fog) In the third month, I never took Darvocet or Vicodin anymore. I just forgot about them. The pain was improving and I was sleeping better. My husband noticed how much more I could do and without resting. Then, the headaches lifted BUT so did all the brain fog and memory problems. I can remember Mike asking me a phonenumber and I told him. Then, we looked at each other. I ran to the phone book to check it. It was correct. This happened over and over. I was ecstatic! I then found I was able to drive, as the pain was gone as well as the confusion in my head. They were not long trips but it was freedom! In the 4th month, the doctor lowered my prednisone by 2 mg and then 1 mg every 4 to 6 weeks until I got down to 5 mg. Then, we increased the time to dropping 1 mg to 6 to 8 weeks. I was doing great. After about 6 months on Minocin we also dropped 2.5 of methotrexate .It all had begun. I just could not believe this was happening. It took 14months to wean off the prednisone and an additional 6 months to wean off the rest of the methotrexate. At the 8-month mark, the irritable bowel syndrome started to leave and I was able to start to drop some of the stomach medication. I now was able to sleep without any sleep aid as well. I needed a check up by the Sjogrens doctor and he asked what I had changed. I was only on Minocin about 2-3 months but he noticed an increase in saliva as he did measurements each time. It continued to progress. I was not putting drops in my eyes any longer either. I started to eat fruit and meats again, as I was unable for a long time. I did not need the special glasses anymore. When I saw him about 3 years on Minocin, he told me my saliva levels now were normal. I went to the eye doctor who concurred that my dry eyes were no longer as there were adequate tears again. Presently I am on Minocin , 71/2 years. I have discarded a neurological drug, 3 stomach medications, all sleep medications, all pain medication, prednisone, Methotrexate, gold and a diuretic. For rheumatic disease I take Minocin and a nsaid which I believe I will also get off. I do take supplements as my body has been so depleted by the toxic drugs I took. I sought the counsel of a certified clinical nutritionist who helped me with leaky gut and problems caused by the cytoxan and methotrexate. I can honestly say I have so much more energy than I ever remember having. I can climb stairs; I love to golf again, to swim to snorkel. I am able to travel (and do a lot) I was bedridden for so many years that I feel like I got a second chance. I do believe had I remained on all those drugs, I would not be sitting here telling you this story but I would have come to a tragic end. Note: I have since the initial start tweaking my therapy often. I dealt with allergies and began Naet( allergy elimination in 2001. It has really been amazing what this has done for me. I also started dealing with yeast. This was in 2000 when acidophilus was just not enough and fatigue and weird swelling set in. Using at first nystatin then diflucan helped this For any flares due to stress( mohter dying) I found the combo on clindy and minocin was good. I then met a doctor who was using the combo of flagyl minocin and nizoral and decided this maybe a course I wanted to embark on. I have done well on this and now am working with hormones as well to balance it all out. Balancing my thyroid was also something I had to keep on top of.It has all been interesting and has led me to such a better place with a super quality of life. .I believe in the use of alternative therapies as well to aid the AP and do utilize the VEGA Testing for my supplements as wellas Accupuncture for allergies( naet.com) and chiropractic. For the FMS, massage for me has been extremely helpful as it gets the mycoplasma from the tissues and into the bloodstream to be addressed by the minocin!. The peroxide baths are wonderful additive and they have helped to move this along even after the initial use for the herxheimer relief.
5/08/05There has been much new info now that some docs are using additional antibiotics to cover other organisms. The use of Ketek with minocin and a little flagyl is a combo recently developed. The ketek can be used 5 to 15 days a month. Some docs are using it instead of minocin with good resultsas it has a bacteriocidal effect. I have used this with minocin and it does provide more energy and help for a lot fo RA symptoms and lupus symptoms
Marge SLE/RA/SS/FMS Diagnosed 1980 AP: 1996 firstname.lastname@example.org