My RA started acting up in 1998 with very mild pain in my right wrist when I would throw a ball to my dog Koko . The rheumy I was sent to took blood work and xrays but did not find anything wrong, except he thought it could be the begining of arthritis after I told him my mother had RA in her hands for years. He gave me a wrist brace to wear for a while which helped a lot when I had it on and didn’t have to wear it too much after that. Then in 1999, my fingers started to hurt and still no RF or Sed rate abnormalities on my blood test.
Many months later at a family gathering, my left shoulder started to feel cold and then stiff and after about an hour I was in the worst pain I have ever had in my life, at that time 59yrs. of age. Two days later, the pain was gone completely and then about a week or so later my right shoulder did the same thing; pain pain pain unbearable pain, I wanted to die and then two days later the pain was gone but still had stiffness in it. I kept my doc’s appt. for the next day and he gave me a prescription for Amoxicillin for my shoulder. Then I remembered to show him the red area on the back of my left arm and shoulder that my wife saw that morning. It looked like the pictures on the (LD) Lyme disease poster he had on the wall in his exam room and I knew it could very possibly be from a tick bite. He said it didn’t look like it was from a tick but if it was the Amoxicillin would take care of it also. In a week the stiffness in the R shoulder & the redness on the left arm/shoulder was gone; then a month later my left hand felt like a very large nail was driven through it, the pain lasted only 3 or 4 hours .
My doc sent me back to the rheumy, blood was taken and two days later the rheumy called me to come back in and that I had LD but not to worry he is going to give me prescription for Amoxicillin. I told him I just took it for 15 days several weeks ago and he said it has to be taken at least 30 days to kill the LD, and 45 days later no LD or other abnormalities in my blood work or x-rays showing something was wrong. The rheumy told me I had Palindromic arthritis and explained what it was and what it could lead to in the future and assured me I didn’t have LD . He wanted to give me prednisone but I said no that I’ll live with the pain and that I will take Tylenol and Aleve. During the rest of that year I had on and off days of pain in my fingers and hands which forced me to slow down working on my hand crafted country style mailboxes and birdhouse which I use to sell on the web and roadsides from, the top of my chevy station wagon. The road sides are most likely how I got the tick bite as sometimes I’d pull a few off me when I’d sit under a shade tree on sunny days. By march of 2001, I could no longer work with my fingers and had to give up making my crafts so I started driving a school bus. Then March 2002 after my brother died, most of the larger joints in my body started to hurt more and more neck, shoulders, elbows and knees. The pain was getting bad, my fingers on my right hand started to swell and curl in like I was holding a drinking glass, walking became harder and I could not stand in one spot longer then a minute or two and having to get up from a low chair was very painful, so back to my rheumy I went. He said to me after, a short exam you have RA and that was confirmed two days later by my blood test and x-rays; my rheumatoid factor was 230 and sed rate 89. I left his office with prescriptions for prednisone and mobic, a month later every joint in my body was affected, then he gave me methotrexate and told me I have severe RA . Shortly after he put me on Humira for 11 months, (no help) and then Enbrel for 8 months, (no help), while I on these (big gun) drugs I started to look for alternatives on the web and that’s when I found roadback.org and the AP Treatment, I read the whole site again and again and got Henry’s book The New Arthritis Breakthrough. Boy, how I related to the stories and testimonials knowing exactly what they had experienced.
At my next rheumy visit in oct. 2004 before I could tell him about the AP treatment he told me at this point there is nothing more he could do for me, that we just have to wait until something new comes out. That’s when I told him I wanted minocycline and he said we can try that for a couple of months , then I said for a lot more then a couple of months. He was not interested in hearing about the Road Back or the book, so I left with a prescription for minocycline 100mg twice every day, I started the next day and stopped taking the Enbrel and methotrexate cold turkey and by the next month I quit the prednisone but kept taking the mobic. Since then the only drugs I take are mino, mobic and Tylenol and my probiotic is raw cow’s milk, two gallons a week. I always had a high tolerance for pain and never let myself miss a day of work because of it, but 1 month after starting the minocycline I felt slight improvement in some joints like my jaw and wrists and slowly started to to feel stronger. I just knew that the minocycline was working and I was in it for the long haul, this is no quick fix for severe RA. The book says 3 to 5 yrs. for turning the corner for severe cases and that’s true for me so just call me a patient patient. I can say that every week or two I could feel some kind of small improvement. Now when I see and feel how far I’ve come only on minocycline and mobic and without those worthless traditional drugs, I want to tell the world about how good the AP treatment has worked for me; it’s great. Now in 2008 my sed rate is 12 and in the normal range, most on my joints are 80% improved, my hands are damaged and deformed since before I started AP but have gotten much stronger to the point I can make a firm fist and open jars, bottles ect. and I believe if I had found AP early in this disease I wouldn’t the have damage I have now. I believe the earlier in this disease AP treatment is used the sooner it works and that has been documented many times on the Road Back’s bulletin board (bb). I don’t post much but read the bb twice every day and I feel so much at home when on, its packed with great people and super volunteers the board could not be without. I will update my remaining progress from time to time and please feel free to email me if I can help in any way.