Can anyone share with me their experience of an antibiotic treatment? Do you know of a doc, in Dallas, TX, that will administer this treatment?
I am currently on Enbrel, Pred., Arava and Plaquinel and I never feel good. I am always tired and in pain. I am considering trying a new approach but not sure if it really works. Please give me some advise!
I can't tell you much, but talk to Pip! or Gimpy. They are the queens of AP.
I'm on AP and I love it. Ask questions and we're here to help. If we don't know, somebody on the Roadback knows the answer.
Yes, there are a lot of really good AP doc's in Texas. Why that is I have no idea. LOL The Roadback will provide names and contacts. Now, if you needed on in CA, I could have given you my doc's name. I adore him.
Fire away with questions!
Pip
Pip,
Thank you soooo much for responding! I want to know how well AP works and if I would continue on the meds I'm currently on?
I asked my doc in Colorado, before I moved to Texas, about this treatment and she told me it doesn't work and totally dismissed it. I just found out I have to see an intenal med. doc for high cholesterol, high liver something and high TSH..they think I might be hyopthyroid. I also get to see a doc about blood in my colon. I was very healthy until I came down with RA and I think the meds are killing me! I never feel good, my joints, esp. knees and feet hurt all the time and I'm dizzy and tired all the time. I would love to be able to function without all these meds.
Please, Please give me hope that AP will work for me and what are the side effects?
Don't mean to complain, I'm scared about the future if I'm 49 and falling apart.
I soooo know what you're saying. I have to run out AGAIN - just want you to know I'll respond more in depth later.
There is a lot of hope this will work - depends a lot on how motivated you are. Hockeymom - I'm betting kids and that translates to a TON of motivation. And the rewards are worth it.
Go lurk on www.roadback.org and I'll be back in a few hours.
Hope GoGo sees this - she's weaning from the other meds.
Hugs,
Pip
AP is something that I firmly believe in. I think if you start slow and persist the rewards are great. It's better to have an AP doc because they can do testing to try and determine exactly which bug you have and help you heal. For example, I tested positive for strep and strep needs the penicillans so Minocin got some stuff, but we added in Zith to get the strep critters.
Do you know what med caused the high liver something? Liver enzymes can spike on starting AP and you would definitely need a doc to work thru with you on this. If you build slow your liver will catch up...but since you only have one, it needs to be monitored. I had high liver enzymes 3 test times prior to starting AP and was advised to start milk thistle and when retested only 2 1/2 months later my enzymes had returned to normal. My AP doc credits the milk thistle I was advised to try by a friend. Says there is solid research there.
Dizziness is a common side effect in starting AP. It usually goes away in a couple of months. Also, stomach upset is a biggie. It goes away too.
There are some other things, like hyperpigmentation (rare) and Minocin induced Lupus or Hepatitis. All go away on stopping Minocin. You can switch to doxycycline but most rheumies neglect to mention that part. :-)
The hardest part of AP is the Jarische-Herxheimer reaction. This is really common. It's a temporary worsening of symptoms until you start getting better. Some people start to flare - but it's 'dose related' meaning, take a Mino, get a reaction. They can be big at first so it's hard to have faith. As the Minocin kills the critters they release toxins that your liver has to process out of your body. Lower the microbial load and the reaction gets smaller and smaller until you can't really feel it any more.
I'd run a search here about the thyroid. Can't remember who, but somebody posts they know of a great thyroid board. I was going to try and look it up myself.
Did I get everything?
Pip
Hi Pip,
Is AP Therapy something you do in lieu of biologicals? Can you do it at the same time? Does it prevent joint damage?
Also, what bothers me about MXT, biologicals, etc, is that you are never to go off of them. That bugs me. Is it the same w/ the anti-biotics?
I am allergic to sulfa drugs
A while back I had written to my local GA roadback contact and never heard back.
Nori
Hey Nori! Love the name? Does it mean something...it's so pretty.
AP is something that you do in lieu of the biologics - altho I've heard that people on both can and do wean from the biologics. Nobody on AI has done that yet so I don't know how that would be done. I'm guessing longer and longer times between shots after AP has kicked in. You might post on the Roadback and see if anybody there is doing it and if they have anything to report.
In the old days, most AP docs wanted you off all meds before starting AP. Kinda a trial by fire. Now they try to work with you and get you well enough to succeed. Heck, my AP doc has biologic info in the waiting room. Freaked me out the first time I saw that. LOL But we can all handle different amounts of pain.
I've been called an AP purist - if there's any way to start AP with as little of the other meds in you, well, if what I believe in how these diseases work is right...it's really for the best. But any way where we end up not so med dependent is OK in my book.
With AP you have to consider yourself on them for life. There is a small group that manage to go antibiotic free but it's best to not think it will be you. For the most part, it's only wishful thinking. It took me a long time to come to grips with that idea.
That being said...I DO intend to be one of the ones who get a 'cure' with this or one of the other advanced AP protocols. I just don't intend for it to be wishful thinking. I'm going to fix everything wrong with me that got me into this mess...then I'm going to systematically and slowly wean off the antibiotics being careful to monitor my blood work for 5 years after stopping the antibiotics. Any sign of the return of the beast and I'm back on AP quicker than you can say...Hail Dr. Brown!
The wishful thinking people go...I feel great, do good for about 18 months with no or little warning signs, then ignore the warning signs (return of morning stiffness etc) until it's BAAAACK! Then they go, what happened? It's harder to bring under control the second time.
I'm allergic to sulfa drugs too. This uses tetracyclines.
Yes, it prevents damage. It is best to get yearly X-rays until you are in a confirmed remission. APers are not considered in remission until all labs return to normal. The biologic/traditional meds people do not use the same definition of remission. I think it's misleading at best.
Hugs,
Pip
P.S. I have no idea what happened with the GA RB contact. Did you post on the RB for names of docs near you? One of the best is in GA part time. Dr. S if they give you names.
My AP journey took two years to see remission with a lot of bumps along the way but now those bumps seem more like pebbles in the road. I'm soooo glad I found out about it. The conventional drugs for treating RA was making me sicker.
I still wake up and am surprised I can jump out of bed with no pain. That RA pain is something you never forget.
Good luck to all!
Hey Pip! When are you coming to South Korea? It's snowing now and I have your room all ready. We would have a blast.
Becky
Pip,
I can't tell you how much I appreciate you sharing information with me. I posted on Roadback asking for a doc in the Dallas area and I have received 2 in TX but none in the Dallas area, yet. I will go 2 hours North, if I need to.
I am allergic to pencillin so I don't know if that is an issue. Maybe they can test me because I haven't had it since I was an infant...many years ago!
AP doesn't sound like much fun to begin but I am encouraged that I could get off these toxic drugs and possibly go into remission.
I am going to contact a doc now. Thank you!
HockeyMom
I've been really super busy so I haven't had a chance to contribute to this