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ANTIBIOTICS WORKED! An RA journey
I remember reading The Arthritis Breakthrough in my early 30s and just being in awe. It was a medical revelation to me! It was my new hope that I was going to actively pursue - I wanted to be rid of my RA I'd suffered for so long. I was 16 when I first got diagnosed. I walked like I was 94, my mother had to bathe me and brush my hair many times, and I basically lived in a lot of pain in just about every major joint of my body. I didn't know what was going on. Many doctors and diagnoses later, I saw a rheumatologist and was diagnosed with RA. I immediately started the traditional regimen of NSAIDs as well as a stronger drug to 'shock' my severely active RA into slowing down (i.e. Solgonal "gold injections", Plaquenil, prednisone among a few). I commuted weekly from UT @ Austin to San Antonio to see my doctor for my kidney/liver function tests, and many times ended up needing needle aspiration of the fluid in my knees and would also get a shot of steroid to help me be able to move. Back then I didn't realize how much potential damage steroids/hormones could have. I joined a support group on campus for people with chronic illnesses / handicaps at UT because I was feeling quite bad physically, mentally and emotionally. I was so fatigued all the time and didn't understand it was RA- I thought I was just being lazy.
Fast forward and I'd continued on my typical medical mainstream regimen, got married and moved to Houston, Texas. I searched for a rheumatologist and found Dr. K who was highly esteemed and recommended, but he was way too popular and I couldn't get in. They suggested his partner, Dr. C. I saw him and began my typical regimen of NSAIDs and some prednisone. Then my mother found some interesting information in Prevention magazine and told me about a book...The Arthritis Breakthrough. I went and bought it, started reading it and couldn't put it down!!! This was a godsend to me. I read the book in one day and HAD to call the author immediately. Henry Scammell, answered the phone and couldn't have been a kinder, gentler soul. He was a plethora of information and encouragement and we must have talked for over an hour! He took my information and gave me his recommendations and I immediately focused my energy on that (*note * I have since found out that Henry Scammell passed in '06 and I am deeply saddened. I owe him my deepest gratitude for helping me truly find the road back to health and happiness. He was and is an angel that did his job in spades while here on earth. Thank you Mr. Scammell!).
After reading the book, I searched for a doctor here in the Houston area to test me and see if I had the 'mycoplasma' so I could start the antibiotic treatment. I couldn't find one except for Dr. S., new to the treatment and just booked up solid. With a little research, and a supportive husband, we found that Dr. F. in Riverside, Calif. was covered by my insurance and I could see him! This was the doctor who for lack of a better explanation, was at the forefront of the continued fight against all these diseases with the antibiotic treatment, initially started by Dr. Thomas Brown. My doctor, Dr. C., was supportive and I made my appointment and went. I was so excited at the possibility that I could be free once and for all of this disease that had taken so much away from me. I contacted my old doctor in San Antonio for my records only to be met with disapproving remarks and no support. Many doctors out there, I soon realized were not only UNINFORMED about this antibiotic treatment, many were MISINFORMED as well.
After my initial consultation/evaluation with Dr. F., a great, charismatic man and doctor, we proceeded on to the test in search of the mycoplasma. Apparently, that's what they search for in all these patients because that bacteria, which is so small it can live in the nucleus of a cell, is the culprit that triggers these diseases in many. Being [like] a bacteria, it can be killed with the right antibiotic, and the proven drug of choice was none other than the tried and true, FDA approved, been around for forever... tetracyline drugs used on acne for so long. After testing, I remember Dr. F. returned with the results and dropped a bomb when he said I tested NEGATIVE for mycoplasma. I was so upset, thinking my trip had been for naught and I was no longer a candidate for this treatment. Dr. F. then proceeded to share something with me based on some information I had given him earlier in the evaluation. He said that they had found anti-bodies in my system for parrot chlamydia (there are two types of chlamydia...parrot and human). I had mentioned to Dr. F. that I had read somewhere in a medical magazine that parrots carry this and can get humans quite sick, and having had parrots all my life I wondered if this information would help with anything (I was 10 when my family had bought 2 Mexican Red Headed Amazon parrots and brought them across from Mexico- un-quarantined). He jokingly, but with much medical relief said..."you would be the one to have parrots!" Why? The thing was that parrot chlamydia is much like a mycoplasma in size and behavior from what he explained. Because of my unique situation, and based on his knowledge of mycoplasmas and the parrot chlamydia, he said he was almost positive that that was the initial trigger and culprit. We began treatment on minocycline right away.
Back in Houston, my doctor continued the treatment, explaining that this treatment takes time to kick in and that if we didn't see some kind of results by 6 mths. I should truly reconsider my options (next on the list were imuran and cytoxin- chemo drugs given in small amounts). It didn't take long before I started to feel something on the antibiotic. One day I remember feeling totally awful. Can't describe it, I wasn't sick from my stomach or head, or aches, I just felt awful like never before! Extremely fatigued, and just like I was withering away, I curled up on the sofa and realized I was going through what the book described as the "Herxhiemer effect" (feeling terribly ill, almost like an impending doom). This was a typical reaction that signals that the antibiotic had found the bacteria and the war was being waged. Yes!!!!
Soon after, my rheumatologist Dr. C. started noticing my RA factor test numbers dropping and dropping, getting better and better. Before long I was no longer even registering at all, and I remember the day he came in and told me, you don't have RA!! I cried. I was in my early 30s. Of course, I was also a bit confused because the numbers showed no RA, but I had very little range of motion and use in my joints. This was primarily due to atrophy. Not having been able to use my joints and muscles properly for so many years, it was going to take exercise to strengthen them again. I no longer had to see Dr. C., he moved out of practice to become the CEO for a company here in Houston. I moved on to a general practitioner. Dr. F. continues on with his treatment for patients, and informs people from all over about it. I even remember seeing him one morning on the Today Show. I am under the care of a general family doctor and he knows my complete history and has even tested me to see where I am. Still no RA. I am now 41. The treatment worked for me. My range of motion grew with each passing day and I am my old self again. I make sure to pass what I know on to everyone and anyone I know or don't know the moment I find out they have ANY of the diseases known to be candidates for the antibiotic treatment. It's the least I can do because it is about educating oneself. Trying out an antibiotic is a no brainer when it comes to the reality of a future of toxic drugs that can cause a lifetime of problems. Definitely worth looking into and giving it a try! Oh, and I especially tell people everything I know when I find out they have parrots. Who knew!? :)
Much love, hope and healing to all my friends out there, Alma Soto Houston, Texas
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