LISA, dermatomyositis

My name is Lisa. I am a 41 year-old home-schooling mother of two. I was asked by the moderators of the yahoo group rheumatic.org to write about my experience with rheumatic disease and the use of Antibiotic Protocol therapy in the treatment of such.

My journey began approximately nine or so years ago with the onset of my pregnancy with my second child. After having my blood drawn for routine pre-natal testing, I noticed a small pea-sized lump under my skin on my left arm. The lump was hard and was located in the middle of my arm very close to the site of the needle stick from the blood test. It wasn't painful unless I pressed very hard on it so I didn't give it too much thought at first. After about two weeks or so, though, I began to develop a rash on both of my forearms. The rash was red and itchy and looked like a sun burn.

Of course, I asked my ob/gyn doctor about both the lump and the rash and he referred me to my family doctor (gp) who then referred me to a dermatologist. The dermatologist said the rash was most likely eczema and he gave me a topical non-steroidal cream since I was pregnant and shouldn't use anything stronger. I had had bouts of eczema on my hands off and on since high school, and though this rash didn't seem the same I accepted what the doctor told me and used the cream.

The cream did little to alleviate the rash and the lump had now become 'lumps' - there were more in my left arm and several in my right arm and also in my buttocks. During the pregnancy, I also developed gestational diabetes so I was careful to follow the strict diet and continued to exercise throughout the pregnancy.

After my daughter was born, my symptoms worsened and now joint pain and muscle weakness were added to the list. I went to my family doctor again and he did some blood work and said he thought I had lupus. He referred me to a rheumatologist who after several tests and upon examination also confirmed that she believed I had SLE (Systemic Lupus Erythmatosis). She immediately prescribed several drugs: plaquenil (an anti-malarial to 'quiet the immune system', prednisone; (a cortico-steroid), and relafen (an NSAID). At that point, the rash was quite extensive, involving both arms, legs, stomach, chest, buttocks, and lower back. The muscle weakness at that point was only moderate but the joint pain was rather severe. My wrists, ankles, knees, and some fingers were quite swollen and very stiff and painful. The medications did little to alleviate the symptoms with the exception of the prednisone, which at high doses (60 mg.) did alleviate the rash. Over the next three to four years, my condition changed little with the exception of the muscle weakness, which grew steadily worse. The way things generally went was this: I would 'flare'; the rheumatologist would increase my prednisone dosage back up; the rash would dissipate; the joint pain would lessen but the muscle weakness would grow more profound. During all of this time, I remained on the Plaquenil, Prednisone, and usually the Relafen as well. During this time, I also developed high-blood pressure (despite the fact that I ate the same diet I'd always eaten and had not gained a significant amount of weight.) I also developed a round puffy face and stomach during this time.

After being treated for Lupus all of this time (almost 5 years), my rheumatologist began to suspect that perhaps I didn't have Lupus after all, but a related auto-immune disorder called 'dermatomyositis'. The only problem was that my CPK muscle enzymes always appeared to be within the normal range, not the norm for a dermatomyositis diagnosis. So, my doctor sent me to the University of California at San Francisco to see an expert in the field of immune-dermatology. She specialized in treating autoimmune diseases, which involved skin disorders.

By this time, I could no longer put all of my clothes on unassisted, lift anything over my head (not even a single dish), comb the back of my hair, get up from a squat unassisted or get up from sitting on the floor without help. Even some basic movements were impossible for me now.

The immune-dermatologist said she believed I did indeed have dermatomyositis rather than Lupus and said that in a small percentage of patients the CPK levels do appear normal. She recommended to my rheumatologist that we continue on the same course of treatment but that we add methotrexate or imuran and that I be sent for physical therapy.

So, my rheumatologist followed her advice and I continued on the plaquenil, prednisone, relafen, and added methotrexate (traditionally a chemotherapy drug) first orally, then intramuscularly once per week. I went to physical therapy three times a week for eight weeks and that did seem to strengthen my muscles, however, I had tapered to about 10 mg. of prednisone daily also. The methotrexate made me incredibly sick for about forty-eight hours after I took it each week. Nausea, vomiting, dizziness, and headaches were the norm each week after each dose. The joint pain was less but the swelling didn't stop even with the prednisone and relafen. My ankles and knees especially were always noticeably swollen.

After a few months on that regimen, I found the website rheumatic.org and joined the yahoo chat group dedicated to the discussion of treatment of these diseases with antibiotics. Although I'd been told there was a doctor (a D.O.) in Las Vegas who used A/P therapy, I could not seem to reach him. The phone number given was disconnected; telephone information brought no results. The next closest doctor (at the time) was Dr. Franco in Riverside, CA. While I wanted to travel to see him, we simply did not have the funds. The disease had pretty much robbed me of my ability to hold down a traditional job, even part-time and I'd been denied Social Security benefits even after applying, re-applying and appealing.

Nevertheless, I was determined to try A/P therapy; so, on my next visit to my rheumatologist, I gave her the printed material about the antibiotic protocol and asked her to prescribe minocycline for me. I was as forceful as I knew how to be. (I've always been what most physicians would call 'a good patient' never arguing with the doctor but just dutifully accepting what they told me and complying with whatever they told me to do.) Reluctantly, my rheumatologist agreed to put me on minocycline but she wanted me to see the doctor at UCSF again.

I agreed to go back to San Francisco once again and when I did the doctor there said she thought it was reasonable to try minocycline (though she hadn't ever heard of any success with it for dermatomyositis patients.) She also recommended remaining on all of the other meds as well though and she thoroughly scolded me about getting sun on my arms, despite the fact that I told her (honestly) that the only sun my arms got was during rides in the car back and forth to wherever I was going and that I always wore sunscreen. She didn't believe me because my arms were so badly broken out at that time. The other thing she was concerned about was the extensive calcification that I had developed during the disease process. The 'lumps' that I started out with had progressively grown larger and more widespread throughout my body over the 7 or so years that I had now suffered with the disease.

When I returned home, I met with my rheumatologist and was pleasantly surprised to find that she agreed to prescribe the minocycline and also did not want to continue with the methotrexate, as she didn't believe it had helped me much! She did, however, want me to take a drug called cellcept. I agreed to take it on a trial basis of three months. At the end of the three months, I had already begun to experience a clearing of the rash, some strengthening in my muscles, and the swelling in my ankles and knees began to dissipate also. At this time I was also still on the plaquenil and prednisone. When I went in to see the rheumatologist, I told her I wanted to stop the plaquenil and cellcept and to begin weaning from the prednisone as well. She reluctantly agreed and thought at first that the improvement was due to the cellcept. This was definitely proven wrong in the months to come!

I did experience a herx of sorts approximately 2 weeks after starting the minocycline. I felt as though I had the flu and all of the usual symptoms seemed to intensify as well. However, by the third week the herx seemed to subside and by the fourth week, I began to notice the first signs of improvement.

When I began to take the minocycline, I also began a regimen of supplements as well including calcium/magnesium, multi-vitamin, fish oil, flaxseed oil, provex (grape seed extract), vitamin C; acidophilus/probiotics. I also modified my diet to include more fresh fruits and vegetables (especially organic) and less grains, sticking primarily to whole grain products and products without preservatives, MSG, or artificial additives. The rule I try to follow is 'nothing (or very little) out of a box or package'. I try not to use canned soups, packaged mixes (gravies, sauces, etc.) or highly processed foods except very rarely. I also try to limit sugar. I also began drinking green tea and limiting my caffeine intake as well since its thought that caffeine contributes to the calcifications.

After taking minocycline (I was always able to use the generic form) for approximately one year, I found that I was almost symptom free. My muscle strength at that point was approximately 80-85% of what it was originally. The rashes had completely resolved and the scars had even faded quite dramatically. My joints were no longer swollen and stiff. And other than an occasional twinge when the weather turned wet, I was free of joint-pain. The only symptom that remained was the calcifications, which had not improved at that point.

It's now been almost two years since I began the A/P therapy and as of about one month ago, I discontinued the minocycline completely. I had completely weaned myself of the prednisone as well about two months prior to going off the antibiotics. I've remained on all of the supplements and continue to eat the modified diet noted earlier. Before stopping the minocycline, I did taper off of it rather than just ending it abruptly. So far, I remain asymptomatic, except for the calcifications, but they have decreased in size and number and I'm hopeful they'll continue to improve. My plan is to continue without any meds (other than lotensin for hypertension) unless I have a recurrence at which time I would go back on the minocycline.

While I believe that A/P therapy played a major part in my recovery, I also must thank the Lord Jesus who I believe guided me along in choosing my treatment and in miraculously healing me as well. What portion of my healing was miraculous and what portion was simply the A/P and nutrition? I don't know but I'm thankful to have gotten better and ultimately, I still give Him all of the credit!

In concluding, I'd like to thank the founders and members of the yahoo rheumatic group for creating their site and group. I know I've benefited in countless ways from the information shared there as well as from the support we all give and receive through the group. I pray that each of you will someday (if you haven't already) experience the healing that I have found.

Lisa Johnson

You can reach me at tulipkj@wwdb.org


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