Becky,
First of all, congratulations on being in remission. I'm interested in more specifics...are you completely symptom free? Are you off all medications? How long have you been in remission? Have you been in remission before? Of course, I think everyone strives to be in remission. I'm among that group. I pray for the day.
Thanks,
Phatgirl2
Happy to hear you are in remission, Becky78! I hope it lasts for a very long time!
Keep us posted on how you are doing. Your remission story is/will be a great comfort for many.
Here's my story. I am symptom-free going on my third month. I was officially diagnosed in the Fall of 2004. Rheumy said I had an extremely aggressive form of RA and all my numbers were off the charts. I could hardly walk, brush my teeth, comb my hair... Rheumy put me on MTX and folic acid. I became soooooo sick I could not get out of bed, throwing up, fatigue and pain like you couldn't believe.
So I hit the internet looking for help. I did try the holistic route, taking 60 pills a day, that didn't help and it cost me 0 a month. Then I found www.roadback.org and got the book on antibiotic therapy. Went back to rheumy a month later with this information. He said it was voodoo medicine and if I went off the MTX I would be in a wheelchair in a year. He said that "This is your life, deal with it."
44 at the time, I didn't agree to the quality of "my life." So I went off the medications, posted a request on the roadback.org for an AP doctor in my area. Got the name, he's a GP not a rheumy. He put me on the antibiotic minocin, Mon, Wed, Friday 100 mgs. twice a day. Researching the treatment, I anticipating herxing (reaction to the minocin killing the nasty micoplasmas) but it really knocked me off my feet. I was hardly out of bed that first month, the pain was worse, I was really dizzy and extremely fatigued. But actually, feeling worse reinforced the AP theory. Eventually, slowly I began to feel better. The pain actually left for hours or days at a time. It would come back but it never left before.
Some people on AP feel better immediately, but I find that is your prepare for the worse, you can get through it. It isn't a quick fix. Mine took two years and last summer I had a handicapped plackard. I've heard, through the board, in some cases it can take years like 5 to see total remission.
But it does work!! I don't know why doctors prescribed this treatment first. I think it may be because of the time it can take to work. I still take the Minocin everyday and probably will for the rest of my life. A small price to pay for remission.
The New Arthritis Breakthrough and/or Scleroderma, The Proven Therapy That Can Save Your Life by Henry Scammell is the book that can change your life. The roadback.org bulletin board is there with people just like us that will help you through your journey.
I have heard of people that it didn't help and I always wonder if they gave up too soon. I am not a fan of the biologics. They lower your immune system and make it easy for a nasty bug to enter. We had a friend whose son had a 1% chance of life because of these drugs and the bug he caught. He is still fighting.
If you have any questions, I will try to help! I thank God everyday that I found this treatment.
Becky
Thanks for sharing your inspiring story! I just started AP and it's stories likeI don't do any diet restrictions except not eating two hours before I take the Minocin. I wanted an AP doctor just because he is very familiar with the ups and downs of it. I also take a Probiotic everyday.
I'm sooo proud you are doing it!!! You ROCK!!!
Becky
Wow, thanks for the encouragement. I find a lot of "APers" are so supportiveWow! Thanks for the information! I'm so glad it worked out for you. What about people who already have damage caused by the RA? Does it do anything for that?
Phatgirl2