I have RA & Fibro......I have tryed Enbrel & it didn't work, now I am on Plaqunnil 2 times a day....But now my left knee is out, it hurts bad & looks like a punkin
Riverchick are you on any other meds such as a antiinflammatory? Sounds like you best call you dr. that snapping you described doesn't sound good. Take care CinDee Not a dumb question...I was wondering too. It sounds like it's an antibiotic treatment, but I'm not sure. Hope your knee is feeling better soon. Go to Roadback.org. It has info on it.
I tried it for 4 months but my RA went out of control. My dr. suggested Methotrexate which I couldn't take because of allergies to it and bad reactions. Was on Humira but have an infection now and having surgery Thursday.
I have been on the AP for four months and my RA went out of control as well. The standard dose of Minocin is 200mg-day and I nearly had to go to the ER. I stopped and began at only 50mg-day which I am holding at and will try to increase by 50mg soon. The RA out of control is called "herxing". Herxing is the die off of the infection and ones Minocin doseage must be lowered to a more appropriate and less invasive dose. Our bodies can only assimilate so much die off and then it gets overloaded. I am using RA meds to keep swelling and damage down while waiting for the AP to kick in and then hopefully can wean off of the RA meds. It is an interesting theory and too many people with RA got their life back for me not to try it. I am going to give it a year and then make a decision based on the AP's performance. AP stands for antibiotic protocol. It uses either Minocin (generic: minocycline) or Doryx (generic: doxycycline) at low doses for a long period of time (think years). It is based on the idea that the autoimmune diseases are caused by a certain bacteria called mycoplasma, and that the infection causes the inflammation and various autoimmune diseases. The best websites are: www.roadback.org or www.rheumaticsupport. Both have tons of information and testimonials from those who have been helped by AP. The best book to start with is: "The New Arthritis Breakthrough" by Henry Scammel, which should be available on Amazon or your local library. As my rheumy said, "it certainly can't hurt". I just wish more docs at least offered it to their patients before the more dangerous drugs. The type of antibiotic and the dosage used are the same as dermatologists put their teenage acne patients on every day. I think it is definitely worth a try by almost everyone with these diseases. All the best, Pat Riverchick and Innerglow - Hi! I LOVE AP. It is working well for me. The pain is pretty much non-existant now! You might look under the topic "infection theory vs disease modification" on this board. I wrote a bunch of stuff there. Again, I'm just one person - but it might have info you find interesting. CinDee - it sounds like AP was working for you - but the herx was too much to handle. I agree with Bonnie (no, I'm not a doctor :-) but your dose was too high and it sounds like your rheumy didn't work with it. Sorry, but mostly they never do. Pip Pip: I don't understand.....you said AP was working for me but the herx was too much to handle????? My ra went tomy hips and shoulders which it never touched before AP so how could it be working when I went from walking to not walking almost at all? How do you know it was herxing instead of RA. I didn't want to wait for 2 years to see if it worked only to find out it didn't. Thanks for your advice. Please re-read Bonny's answer - it happened to her too. What I think happens is some people are either more sensitive to the die-off of the bacteria or they have been sicker longer or they have multiple infections (co-infections) and they get a real bad herx. You can tell it's a herx because they say things like the RA 'went out of control' or because it starts real soon after starting the medicine; usually a couple of days. As more and more of the bacteria die, their body has to process (get rid of) more and more of the dead bacteria. The liver can start to overload. They can get rashes and new and different pains. There are things they can do to get through this time like take the whole lemon/olive oil drink that helps the body detoxify or change their diet to a less inflammatory one. Eventually enough of the buggers are dead that the herx pain starts lessening and then they have the thing more in control. Then they start getting better. Most people start saying things like 'I got my life back' etc. There have been posts at the RB from people that went on to other protocols that use multiple antibiotics. One guy said he got herxes in parts of his body that never hurt before - like his eye. So far that has not happened to me but it makes sense if you think about it. RA is a systemic disease. It's not like you can have RA only in one hand. One hand may be the only thing that hurts usually - but - it's in your body and it is found in all the joints. Also, mycoplasma can and do migrate. Sneaky bas***ds! It is very hard to get them out when they penetrate muscle tissue etc. When you started killing them you were killing them everywhere. The problem as I see it is that most docs do not tell people that they have to work through the herx (pain) to get the 'pain free' part. Another problem is that there is a real 'fraternity' mentality to AP - so many people think that they have to take the pain at all costs. But not only is it unnecessary - it can be stupid. When you are herxing bad you can suffer damage - you need to bring the pain and inflammation down to managable levels. Many people accomplish that by lowering the dosage until they can safely bring it back up. The bacterial killing takes longer - but this disease ain't going away either - so it's better to take is slow and sure than quit. Do you see what I mean? Like Bonny did. She went down to 50 mgs (don't know if once or twice a day) and will slowly work her way up. The only example I can think of is really dumb - so bear with me on this. Think of childbirth. If you want a baby you have to go through childbirth. Once the pain is gone, then you have the baby (pain free). OK, I told you it was a dumb example. But it's the only thing that comes to mind. So, I think it was working for you but the dose was too much for your body to handle. Pip hmmmm .....you may be on to something but here is something else to think about. I developed two cysts on my tailbone a few weeks ago. I was diagnosed with a pilonidal cyst. I was put on augmentin 875mg twice a day. I am having surgery tomorrow to remove the cyst. I was on the antibiotics for two weeks. I even went off my ra meds (Humira & Relafen) and this last week I have felt great. I was worried about stopping the relafen. I do have alittle stiffness but nothing too bad. I have been reading all the posts of the AP Therapy and I told my husband, I think there might be something to it but the dose wasn't high enough. It seems logical that your body builds up a tolerance to drugs and maybe when I did the minocycoline (sp?) the dose needed to be elevated gradually. The swelling is down in my hands and even without relafen, I feel decent. What do you guys think? Anyone ever feel lots better with high doses of antibiotics? CinDee Cindee- Oh, please, do not raise your Minocin dose if you decide to try this again. You were hurting (my opinion) because the dose was too high! In AP there are two schools of thought. Daily Minocin 200 mgs a day. This is usually considered more of the DMARD strength. The other group (I do this) do pulsing. This is MWF 200 mgs a day and this is for maximum bug killing. The theory is to hit the body for a day and when the bugs think its safe to come out of hiding, hit them again. Do you know what your dose was? The achy, pain, fluey is-this-a-flare feeling etc. is the Mino killing stuff. You have to work through it in some form or another. I'd bet the farm that if you tried again at a lower dose and worked your way back up you'd be able to handle it. Please go to www.roadback.org and search the posts for 'dosing'. Also, people not into AP are not reading this thread. You might repost your experience/question on a new thread and thereby get more people to answer you. I think you'll be surprised by the response. :-) Pip I didn't raise my dose when I was on AP. I was taking the 100mgs twice a day for four months. That was back in the fall of last year that I tried it. Then my doc put me on Humira. I was only taking the 875mg augmentin for the cyst. That is when I noticed the difference in the way I feel. My pain & swelling was almost gone about one week into taking the antibiotic augmentin. Thanks for your input.
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