There has been a lot of discussion on antibiotic treatment for RA on the board. I thought I'd try to start a discussion on the objective evidence for AP therapy...what do we really know? I've been reviewing some of the research on RA since I was diagnosed 4 years ago. I'm a scientist with a PhD in Physics, not biology, so I'm not an expert, but I do have some experience interpreting the statistical significance of data from various studies. Here's what I've learned, and I'd like to hear from others who have researched the topic.
Clinical studies have shown that AP therapy can be effective in reducing RA symptoms...not for all of the participants, but statistically significant relative to a control population. These studies, however, tell us nothing about how the drug works. It is just assumed by many that since the drug is an antibiotic, it works by killing bacteria. Antibiotics have side effects, and some effect the immune system. There has been a lot of speculation in the research literature that the antibiotics alleviate symptoms by suppressing the immune system in some way, similar to the more traditional RA treatments. I don't know of any data to support either interpretation.
Some AP therapy proponents assert that the treatment can be a cure since the bacteria or virus that causes the RA is eventually eliminated. I don't know of any objective evidence to support this claim. Again, it seems to be all speculation. There actually seems to be a lot of support among RA researchers that a bacterial or viral infection triggers RA, but once the damage is done to the immune system, it isn't clear that elimating the bacteria or virus that started the RA will cure the disease. RA is caused by the immune system becoming confused and attacking the bodies own cells as foreign invaders. A cure may require reprogramming the immune system, not just eliminating the source of the initial damage.
So, my conclusion is that AP therapy can help control symptons and should be considered along with the more traditional RA medications...but at this point I don't see any objective evidence that it can cure RA or provide better symptom relief than other medications. To me, anecdotal evidence is not very convincing since RA can go into remission for a lot of people without any treatment.
I've very interested in other points of view...particulary if you can discuss objective evidence to support your view.
Alan
Alan - I started the AP because I could no longer tolerate the DMARDS, Biologics, etc. My body was just toxic to the max and lots of problems were arising fat and furious. The meds had also quit helping so it was either try this or nothing. When first diagnosed I had great response from the meds but then they just quit on me - I am a supporter of the "traditional" meds and know a lot of people they do help. Okay that being said - to get back on topic.
I have no scientific proof that it works - I just know it is working for me (at least for now). My rheumy also told this not a cure it treated the symptoms and he keeps a close eye on me. He did tell me that as long as the RA was active I can and will continue to get damage and that the damage that is done this will not fix. He also believes that if your RA was triggered by an infection this is much more likely to work. We do believe mine was. I know other patients that use the AP with other more traditional meds, but I can't. Do I think this will work for everyone? Absolutely not, but I also don't think their is any one drug for all of us either. I have personally come to the conclusin this should be offered more as an alternative (I know people who refuse the Biologics, etc. because they are afraid of them and aren't even told about this treatment). I have no idea why but for me it works as well as the remicade did at first. I feel better than I have for about 2 years.
Okay I guess I offered no evidence - but I hope I was objective.
Have a great day all. Hugs and good vibes.
hi alan,
well I don't know if it works but so far from what I read the regular RA drugs dont work either
including all the wonder drugs those biologics...
so if anyone here is ona biologic has been for 9 years and are working, going toa gym have no assistive devices of any kind whatsoever and have no more damage or pain please speak out I'm all ears
what ive read from folks on a whole lot of drugs is..
i'm getting worse daily and thats on enbrel and whatever else........
so anyone know when the next wonder drug is coming out because from what i read so far how would you expect me to have any hope?
at least some of the folks on ap have ended up witha normal life..
whats normal?
normal is having to work because really for me if i can't work i might as well send myself to oregon I cant count on disability .. and nope i cant count on family
its just me... ill either survive or that'll be the end of me I have noone to count on but me.
I've done some Internet research and this is one of my questions on my list to ask when I see the rheumy next Thursday. I am seronegative and they aren't convinced its actually ra, I may have some sort of reactive arthritis or even crohn's, even though those tests are negative as well. I have also had 5 unexplained miscarriages.
I went for medical treatment specifically for joint pain, swelling and fatigue a year ago. I am currently on placquenil 200mg twice a day since last February, prednisone daily-dose varies-right now 7.5 mg since May. I tried Imuran and aslufadine, both made me horribly ill. I do humira injections weekly since August and started mtx injections the beginning of November.
I continue to get worse. I have joint damage on x-rays, daily, severe pain and my hands and feet are constantly swollen-to the point that people always ask me what I did to my hands. I am always tired and always feel sick.
Not much has seemed to help me so I am definitely going to ask about the ap therapy. My concern though is that I already have terrible gi upset. I have bloating, gas and diarrhea about 10-15 times a day. Antibiotics are probably only going to make that issue worse for me. I also seem to be prone to yeast infections, not sure if that's an issue for you men or not but they can treat that as well but again, antibiotics can make that worse as well. Otherwise, i don't really see any reason not to try it. I haven't read any conclusive info one way or the other but I figure if I am not getting any better with the supposed conventional treatments, why not try it? I will let you know what the rheumy says about it next week.
HI Alana:
I've been on the AP protocal for almost two years. My RA was very aggressive. AP has never been said it is a cure, but I truly believe it can put RA in remission. Most people stay on some level of antibiotics for the rest of their lives.
I think of all the treatments for RA, shouldn't this be the first. It is pretty safe compared to other treatment.
I also must say that it is usually a process to remission. One step forward, two steps back. As recently as this summer I had a handicapped parking plackard and needed it badly. Today, no one would even guess I had this nasty RA.
I really think everyone should try it, and I mean for a year, and see if it doesn't help. I do feel this has saved my life.
Becky
"Minocycline is an antibiotic, which means it helps neutralize or kill bacteria that cause infections. When used to treat rheumatoid arthritis, however, minocycline works through a different mechanism to control inflammation. Minocycline decreases the production of substances causing inflammation, such as prostaglandins and leukotrienes, while increasing production of interleukin-10, a substance that reduces inflammation."
I've tried Minocin twice but no luck for me. And it was killer on my stomach.
michelle,
Have they tested your for Chronic Fatigue Syndrome or Epson Barr Virus? I was reading over your symptoms again and they sound familar to what I've read about those two.
I have friends that have the CFS and they have had huge success with coming Naturalpathic doctors into their medical care. Since nothing else is working, check that out. It's been so long since I've read up on it, but I believe some of the things they try are similar to the AP therapy. One of my friends was so sick she couldn't work. She is now a manager again at a major corporation. It's at least worth looking at the symptoms, etc.
First I want to comment on the yeast infection possibility while on AP. It is recommended to take probiotics while on AP which I have been doing with no yeast problems yet after over 3 months. Minocin is considered a DMARD by the Arthritis Foundation. Though I am on MTX and will be adding Enbrel soon I am on the AP. As I see results from the AP I will start lowering my doses of MTX and Enbrel. I think the side effects of Minocin seem much less severe than DMARDs or biologics for a long term therapy and I do know that it is not a cure.Thanks for the inputs.
One comment to Mark. I don't think it's wise to dismiss the new biologics so quickly. There is a tendency on forums like this to hear more from those who have fared poorly on drugs than those who are doing well. Several follow-up studies on the biologics have shown a substantial percentage of people who take them are doing well. The fact is, though, that there will always be a large number of people that any given drug fails to help...and they tend to be more vocal since they're actively seeking alternatives. That's why I try to find some objective evidence of a drug's performance before drawing a conclusion. I feel the same way about AP therapy.
Alan
Michelle - I take a probiotic called Threelac along with the AP and so far have no problems with yeast infection - if you decide to go with the Ap be sure and use a probiotic there are several on the market - I just happen to like this one. I also tend to get candida so I use a probiotic soap for my face also. Hugs and good vibes.Alan,
For me it seemed to work more as an anti-inflammatory when I was on Minocin. When I went on Doxi, the disease became very aggressive with my labs shooting sky high. I had almost no damage when I was on Plaquenil alone for the first several years before I went on AP. When I went on Doxi ( I had to switch from Minocin due to hyperpigmentation and after eight months the Minocin was no longer effective) and cut my Plaquenil doseage in half, damage started occuring. I have a great deal of damage since I switched to the AP.
I also had the mycoplasma PCR run and tested postivie for mycoplasma. Strangely, even after four years of antibioitics I still tested positive.
I have been off antibioitics for a year and a half, and now take MTX and am doing great. My labs are normal for the first time in six or so years.
I was not a success story on the AP. I wish I could have been but I gave it five years to work.
I am trying tetracycline right now. I think I see a bit of improvement, but nothing dramatic. I'm going to give it a shot and see what happens. I mentioned to my dr. that I felt better while I was taking an antibiotic (bactrim) for a UTI, so he gave me the tetracycline. I wonder if the other antibiotics are better? Has anyone tried tetracycline?Whenever they have treated me with an antibiotic, like for a bronchial infection, it seems to make me feel better generally and clear up the skin problems I continuously have with all this. Of course, once the anitbiotic is gone, so is the benefits.
I think they are onto something with AP therapy. But it is would be nice if they would do a serious study on it and not treat it like it is a sideline therapy with no real potential to help us. I think there are enough elements to bring about a study. I wonder if there are any serious studies already being done.
That would be an interesting question to research.
mark, the biologics may not work for everyone but they do work for some people. My aunt was diagnose with ra years ago and had tried just about everything available to her and nothing seemed to work very long or very well. she had already had two knee replacements and her outlook was grim. Then Enbrel came along and she tried it. It has been the best ra drug ever for her. because of the Enbrel she is able to walk today and do simple chores, without it she would be a cripple by now in a wheel chair. I have started Enbrel myself and hope that it works as well for me as it has for her, if it does it will prevent so much of the damage that others have gone through. I hope that things work well for you and that they find something to help you. You may be alone in the world but you have a host of friends here who will help you and support you in any way that they can. Good luck to you and God bless. jamieIs there actually a specific test for CFS? I will double check on the Epsom Barr virus when I see the rheumy next week but I think they did check that.
The yeast infections are relatively a new thing, since this past summer/fall. I do take a pro biotic daily but my stool sample even shows a high growth of yeast. They said it was because of the extreme diarrhea I have. I've got some prescription cream and take diflucan as needed. But, again, its on my ever growing list of things to discuss with the rheumy.
She has said that I do have what she calls secondary fibro meaning she believes that when the ra or whatever it is I have is under control that the fibro should settle down as well.
Frankly, at this point, I don't really give a crap what the heck you want to call it, just GET RID of it already!
I'm new and thought I'd jump in.
I'm just going to add a bunch of comments and hopefully it sounds friendly and informative. I am a slooooow typist and have been told sometimes I sound abrupt when I'm only trying to type less.
Deanna - there are serious studies and the rheumy's know about them - they just ignore them. I am on AP and had to fly 2500 miles to get one of the top AP doc's in the country to treat me - I have seen 8 local doc's trying to get one willing to learn about AP and monitor me locally. I started on number 9 recently.
Mark1 - please do not give up, and please try AP. Depression is a side effect of our diseases, and we have all been without hope. Usually one of the first systems to lift is the depression. (To be honest - for me I GOT depression for 7 weeks when I started AP in response to the toxic die off - so please be careful and see if you can get somebody to watch you in the beginning.)
Micheleb - I am no doctor, but you really sound like you are battling multiple issues. If you have gut issues AP should help with that because a lot of the mycoplasma like to hang out there. But you also really sound like you are dealing with Candida. I read a great research report from the University of Michigan that actually started with "It's the gut, dummy" (Those wacky researchers!) This research said that 70% of autoimmune diseases start in the gut and when we get a hyperpermeable gut - like when yeast forms branches thru the intestinal wall, toxins and parasites etc. are released into the bloodstream and we start getting ill. Have you looked into anti-inflammory diets? There are a lot out there and they work to kill the candida and reduce our inflammation. Then, when your gut membrane is repaired you can slowly add in regular foods and see what you may be sensitive to.
I think you also mentioned the joint damage on x-rays. AP will not undo old damage. But, even tho Alan calls it ancedotal evidence, I have read testimonials of people with minimal damage that say their later X-rays showed no damage. I have no idea how that is possible, but, like I say, if they say they have x-rays, and the x-rays do so some sort of improvement - who am I to argue? Maybe if you catch something early enough the body can repair itself. But, like all things, there is a point of no return.
Also, because of the possibility that you have a multiple mycoplasma issue, you need to ask your rheumy if they test for it. Most labs in the US are not set up for this. This is part of the reason I went to Cali to be tested. If I could get a positive diagnosis then, in theory, if later I needed IV treatment, then insurance would cover it. I decided to wait 6 weeks before starting AP just to see what I had - and for me it was strep.
Hillhoney - there seems to be some sort of bias for Minocin which is a 3rd generation tetracycline. Every once in a while I see a debate on generic vs. brand. I asked my doc to write DAW on my script so I got the brand.
Bonny is correct - most docs are comfortable writing a scrip for Mino as a DMARD - they say it is only modifying the body's response to RA and think of it as a anti-inflammatory. There are even AP docs that do not subscribe to the infectious theory and prescribe it for the other reason. On the Roadback there are a lot of posts that say you can INCREASE Minocin to stop a herx - so that translates to me that it does have anti-inflammatory properties. But no matter how you look at it, it's an antibiotic so it must be killing something.
Becky - I agree that most APer's are veeeery careful and do not say they think there is a cure. I am not one of them.
Lynx - I'd be very interested in finding out how mino did not work for you? You said you were on it twice. For how long, both times? Any information you'd care to share, I'd love to hear about. I am under the impression that AP or some variation can work for everybody. Did you have your D levels checked? I know of one woman on AP for nine years and when she finally went to a modified Marshall Protocol, it finally worked for her. I'm not trying to push you back towards this, I know there are people out there who this hasn't worked for, but I know that people who really wanted it to work, found a way to make it work. The Roadback has a menu for what to do if AP is not working. I personally think that there is some sort of cascade effect in our diseases and all contributing factors have to be dealt with in order to go for "the Cure".
Finally, Alan, I have seen studies. The Roadback has studies on their website. These are not the stuff you'd find in PubMed, but rather a distillation of the study. I found by googling some of the words in the study, I was able to find the actual research. When I read the actual research, I found that what people were saying was backed up by research.
The MIRA study is the most famous one. This was a double blind study studying Minocin. By reading that study in its entirety, I figured that even if the research was slanted, I had a 50% chance that this drug was going to work for me. It was a risk I was willing to take.
The O'Dell study followed the people in the MIRA study further (3 years?). When taken for such an extended time period, the efficacy of minocin went up to something like 95%. Again, I interpreted, that even if the research was slanted, if I gave this enough time to work, I had a minimum of a 50% shot that this would work.
There are other studies there - the Israeli study etc, please read them yourself and see if you see what I saw.
The problem is that there is no money in researching this out of patent, older generation drug. Also on the Roadback site, there are press releases. One of them lists the problem Dr Trentham of Harvard had getting Wyeth to donate Mino for the Harvard study on mino for Schlerderma. They said that donating mino would interfer with other drugs they have patents on. If you google the terms in that press release excerpt, you can find the actual news reports. I don't know about you but I find myself very angry to find that nobody (with a possible exception of the insurance companies) has any interest in researching these drugs because there's no money in it for them.
Anyhow, I hope this was helpful. If anyone has any questions, please feel free to email me at carperememdium@aol.com.
Please get the book "The New Arthritis Breakthrough" by Henry Scammell, written in conjunction with Dr Thomas MacPherson Brown. They explain this much better than I ever could.
Pip