? for Bonny or anyone else on AP Therapy | Arthritis Information

I'm still researching AP therapy (just finished "The New Arthritis Breakthough" and starting "Why Arthritis" as well as reading people's personal accounts and looking for an AP doctor), and I'm wondering about staying on the drugs I'm on and trying AP therapy simultaneously. I am currently taking 400mg of plaquenil/day plus 20mg mtx a week. I am also taking 5 mg Folic acid/day and 10 gr fish oil (equalling 3 gr EPA/DHA) a day.
I'm just wondering because I think it will be easier to get my health care pros on board with me for the AP if I stay on my meds, plus they're working pretty well and I'm quite afraid of permanent joint damage if I go off them. However, I understand that part of the AP therapy is getting the mycoplasmas in a state that my immune system can attack them. Obviously if I am on mtx my immune system is compromised. Do you know anything about this? I haven't found a whole lot of information about it yet.
Thanks in advance.

I got my AP doctor from the www.roadback.org board. He is very familar with AP.

I think you should find a doctor familar with AP and he would be able to advise you on what meds to stay on and what course of treatment to take.

Becky

Becky, I've started looking for one, but I haven't discussed it with my GP or RD yet. They are both really good at what they do and I'd hate to alienate them or have to stop treatment with them in favour of a new doctor. I'm hoping to work out a deal where I can have it all. My RD works out of the arthritis research centre and she's very knowledgable. In the meantime I'm looking at my options. That's why I'm interested in the answer of my question. I read on Dr Mirkin's site he tries 6 months of AP and if it isn't working fast enough he adds immune suppressents, so that's a clue they're not incompatible, but I'd like to know more.

I had to stay on my MTX and will start Enbrel next month. Part of the AP therapy is that the Minocin cannot get to the infected areas while swelling is there. The Minocin works directly on the infected areas. I cannot use Prednisone due to its calcium leaching properties having OA so must stay on the reg RA meds. My doc is not a true AP doc but did study it and is letting me and a couple others use it.

There is no AP doc within a reasonable distance from where I live and many who post on the RBF board stay on their former meds while on AP with good results. What good would it do to have AP work in a year or two but be crippled from not staying on the other meds is my thinking.

I live in an area with a low population and was blessed to have Henry Scammill email me to find out the name of my doc as he could not find one for many in this western area. I don't know if she would be offended or not if I got off the RA meds but I would be confined to bed if I did that.

Take care,

Thanks for the info, Bonny. That's encouraging to know and something I can take to my health team when I talk to them about the AP approach.

Good info. I was told my Enbrel is working. Surprised me That is good to hear Roxy as I start it next month. Does it help the morning stiffness? I sure hope so.

Take care.

Hi - I'm Pip and new but saw this post a while back but didn't have a second to respond.

What did you decide to do?

I think the goal of AP is too wean off any immunsuppressant drugs you are on because they 'undo' the work of the antibiotics. The problem is that many people get swelling and the antibiotics need to get behind the swelling to work. Can you try without the immunosuppressants? Or do you think the 'herx' will be too bad?

Pip

Hi Pip,
I haven't updated because I was on vacation (which ROCKED), I haven't finished my research, and I haven't seen my Rhuemy yet.
So far the only AP doctor I know of here in Vancouver charges an arm and a leg (I hope not literally!) This is a concern as in Canada we have "universal healthcare" and I usually get my healthcare for free. I have to wonder why he charges me instead of the government. Could this be quackery in action? He sure comes with great references though! So I might bite the finacial bullet and go see him after I feel researched up enough. Also, most APers say you must follow a special diet which is very similar to a detox I plan to embark on soon. I'd like to see how the diet affects my RA so I'll know if it's the food or the antibiotics that is making me feel better.
I want to stay on mtx because I am afraid of joint damage (it seems to be working so far) and because I think it will be easier to keep my "health team" on board with me if I don't stop conventional therapy. My goal is to get off the mtx but I want to proceed with caution.

I read a post you wrote in antoher AP Therapy thread. I'm curious to hear your personal story if you're in the mood to share.
Thanks!

Hi there!

So, what do I call you? I like the GoGo :-)

Glad your vacation rocked. It's been so long for us that I think I forgot how to relax!

Have you posted on the Roadback asking for all the AP docs in Canada? I think they have their own network - I saw something like that posted recently. You could search for "canada and physician" and see what you get.

Some of these AP docs need to make up the money they're losing on writing the traditional scripts so they usually push the supplements or charge more than the regular docs - not quackery - just business as usual, I'm afraid. If he comes highly recommended, that's a real positive sign. Like any branch of med; we have some...under achievers, alas.

I tried the diet thing in the beginning and it did not help me - and I was desperate enough to try anything. But I've read too many posts from others who swear an anti-inflammatory diet really worked so I'm all for trying it. There seems to be a real split between the diet people - one side says vegan and the other says Atkins, low carb. Have you decided which one you are going to attempt? I'm kind of working at this backwards - I think to go for the 'cure' you have to deal with and effectively treat any 'gut issues'. And I know I have some gut issues. Sooooo...once I hit remission (and am off all NSAID's) I intend to do the diet thing and heal the gut. Backwards but, in theory, I should end up in the same place. Does this make sense?

I was terrified of joint damage so intellectually, I understand your reluctance to quit MTX - but emotionally, my gut reaction is to say 'quit the MTX because the buggers will run ramphant!' I know, easy for me to say...but honestly, I sooooo believe in infectious theory. The problem is if you quit and swell up then the ABX have a hard time getting to the buggers and it takes longer to heal so....six of one half dozen of the other. Geez, I was a lot of help there, wasn't I? But the ABX kills the myco's and then you don't have to worry about joint damage. The only question is if you can handle the herx - and if you start slow and build up - you can.

And this is going to sound awful - but I've been dumping doctors right and left. I don't know what kind of 'health team' you have but my rheumy and GP would not listen to my requests (OK, demands) for AP. So I started looking for another GP. I've weeded out 7 so far but am still trying to work on 8 and 9. One of these guys is going to actually be intrigued by this and start learning it to be able to monitor me. I'd rather not waste my time with a doc not willing to help me help myself. And it hurt to leave the GP - but if after 6 years she didn't know me well enough to try something that had science behind it until after I tried the regular drugs for 8 years (her words) she was not the doc for me.

I'd be happy to share my story - but it's a long one and I am the worst typist in the world. This is the sweetened condensed version so anything you want more info on, just let me know.

In 11/04 I had an abcessed tooth removed. 3 weeks later I had some strange problems with my lymph nodes just behind the jaw and mostly on the side the removed tooth was. I even went back to the dentist and asked him 'what did you do to me?'. He said it wasn't him and sent me for a CAT scan where they said they didn't know what was going on but if I 'had any more autoimmune responses' come back and see them. After finding AP I've read a ton of research linking dental work to autoimmune diseases - something I wish I would have known about BEFORE I had that tooth removed. There were things I could have done to protect myself. Sheesh. These guys are the professionals.

Anyway, in June of '05 I get hit with a huge right shoulder 'flare' that puts me in the hospital. They can't figure out what's causing it.

Then in 12-05 it's my right knee. Same scenario with the hospital.

Then in 01-06 it's my big toe and the docs all say gout.

From Jan to March I'm in the doc's monthly and they finally diagnose Palindromic RA. Meanwhile I'm poisoning myself by overmedicating myself with Aleve (who knew you weren't supposed to take over 2 a day). I believe I go straight into RA at this point and the aysemetrical nature of PRA is now in my hands and feet and it is all the time, not monthly. I was so bad off. By July I had to use a walker at night and by August I had to use a wheelchair twice in LA on my first appointment with Dr. F (AP doc). I couldn't walk. I had inexplained neuropathy. You name it; it was falling apart. I couldn't move and I was losing weight. I was scared out of my mind. I'm thinking, "it's only 4 months (since diagnosis) and this is what the rest of my life is going to be like?"

I started AP on 8/25/06. By that time my RF was up to 706 and my CRP was at 10.8. Within 2 1/2 weeks I could open a milk jug again. I know, not a big sign, but there was dancing in my house. My next set of blood tests were 2 1/2 months later and I dropped to 353 RF and 5.8 CRP. I just kept getting better and better.

Christmas Day was 4 months on AP for me and I really feel that if I had to, I could live the rest of my life like this. What are a few aches and pains after the pain I felt? And I can slip my wedding ring on my hand again!

I believe that I had such an easy time of AP and herxing because I had not been on the immunosuppressents (only a couple Predisone packs) and I was recently diagnosed. The beasties didn't have a lot of time to run free, if you get my drift. :-)

Anyway - I hope this wasn't abrupt - and if you have any questions please fell free to ask. AP saved my life.

Pip

P.S. I think I reset my profile to give you my email address if you feel private is better. Otherwise - ask away!

HI Pip,
Thanks for sharing your story. I like to hear stories from people whoi have had success with AP. It's great if it works! But I have also heard stories from people who have tried it where it hasn't worked and they have sustained a lot of damage while they were waiting. It probably depends on what triggered your RA in the first place. After reading so much about it, I believe there are several different kinds that are all so similiar they're just lumped together.

Being a Canadian I have universal health care which means the government usually pays for my doctor visits. Not all doctors are in the medical plan, but often it's because they're not qualified or because they're doing dubious things like Vega Testing. I just have to be leary when a doctor has to charge me instead of Medical Services Plan. Okay, I'm not exactly sure how it works but I don't think our doctors get kickbacks from the perscriptions they write. You may be aware that we have more generic drugs and they're a lot cheaper here. My GP, for instance, often gets me to try homeopathic remedies before (reluctantly) writing a perscription. My Rhuematologist is considered one of the top in her field and she works at the Arthritis Research Centre. When she DXed me she gave me the choice between mtx and gold injections. The idea is I have to try the cheaper therapies first, so no one is pushing embrel or anything on a Canadian. So I think it's a bit of a different situation in Canadian terms.

I was dxed in August but my first symptoms started showing up around this time last year, so it's still pretty early in the game for me. My opinion is that even if the minocin is just acting like a DMARD and not eradicating the disease, it is still worthwhile to do a course of it. It only makes sense that one would want to exhaust the milder remedies before moving on to the harsher ones like biologics, etc. So I am interested to hear peoples stories on AP and will discuss it with my RD soon.

PS.
I also believe my RA was triggered by dental problems
Gimpy-a-gogo39088.493912037

For lots of stories about experiences with AP, check out either of these websites: www.roadback.org or www.rheumaticsupport.net

Good health to you! Pat

Hey felines4ever, I've read a lot on both those sites. Have you tried AP therapy?

See, that's where I'm different! Every once in a while I run across somebody who says AP didn't work for them and when I ask for more info they never reply. :-( Maybe I scare them. :-)

I'm under the impression AP can work for anyone - but in my opinion they have to have emotional support. Think about it. If you are not being helped by a doc who believes in AP and you're on your own and your family thinks you're crazy for not listening to your doctors (which my sister in law said to my mother about me) and you have a hellacious herx and nobody tells you you can just cut back the dose until your body can handle it - who is going to withstand that? Then the doc says see...it just doesn't work. But with support, with others to talk to about what is happening to your body and recent research etc. then you say, "I can handle this" and you do and eventually you have your life back.

I haven't figured out the American kickback situation yet - but I will. Dr. Brown thought that rheumys were underpaid and under appreciated. So you'd think that those that learned AP and had their patients adore them (and I'd adore anybody that took away my pain) would be into AP. I have a friend that is a pharmacist and he says that rheumys do not get paid alot because they can't keep the costs down on the meds they prescribe and the meds they prescribe are expensive. Then I met a nurse that used to work in a rheumys office. She said that when a GP referred a patient that they would send over this HUGE gift basket because they knew they had a person for life. She said it was true, the trips, the stuff etc. that drug reps sent to Dr.'s offices. So, I have conflicting info...but one day I'll figure it out. :-)

Sounds lucky on the 'nobody is pushing Enbrel on a Canadian'. In that conference we had with the docs that was one of the meds they wanted me to try. It was like Plaquenil, MTX, then Enbrel.

That's exactly what I was thinking about AP - even if it bought me a few years - it was a few years before I had to try the Plaquenil.

Just don't be surprised if you get a pooh-pooh from you doc. Thats mostly what I got. It's the twisting of the info that infuriates me. I actually said to one dentist after he told me that there just were too many side effects to ABX and I should try the immuno-suppressents, "Are you telling me a medicine that is safe enough to give to teenagers for years is unsafe for me". He never did answer me. He also was my periodontist and neglected to mention that my periodontal disease would be 'cured'. Hmmmmm. These guys know.

Pip

Hi Gimpy! Yes, I am on AP almost 2 months now. I expect to be on it for life. My scleroderma had progressed to lung involvement in early 2006. All my (former) rheumy had to offer was, "Well, when your lungs get really bad, we can try Cytoxan". Cytoxan is a cancer drug much more powerful than Mtx! Fortunately I stumbled upon the Roadback website. When I asked him about it at my next visit, he dismissed it with all the usual scare tactics, "you will develop resistance (the class of antibiotics used is the LEAST likely to cause resistance), "we might need it later for gut issues " (well, later may never come if my lungs do me in) and my favorite, "it can cause lupus" (drug-induced lupus is very rare and reversible upon stopping the drug that caused it). So, long story short, I found a new rheumy willing to prescribe AP and feel that I am doing all that I can to, if not reverse the lung damage, at least stop it in its tracks.

Pip, I wish I knew more about the kickback system. I do know that doctor's offices in this area are treated to weekly catered-in lunches for the entire staff, courtesy of the drug reps. I am sure that rheumys do not rake in the dough like surgeons or docs that do procedures, but like you say, they have patients for life. If AP put lots of them into remission, they would not be seeing these patients near as often. Hmmmm Pat

Did you see that link to the N.Y. Times on the RB. It was about the percentage of the FDA's budget that comes from Big Pharma and watchdog groups were upset. When I read the article all I could think was, "we've got the fox watching the hen house".

Pip

Well, I finally talked to my Rheumatologist about AP Therapy. She said it wasn't something she would choose but if her patients want it she'll put them on it for 3 months. She said it was because there's research to back the MTX/hydroxyquine approach and it slows or halts joint erosion whereas AP hasn't been researched as well. She said also AP therapy only works for mild, early onset RA, which she said mine could be classified as (now, after months of MTX/hydroxyquine it's mild---it wasn't mild to start). Plus she talked about possible side effects of antibiotics.
After the amount I've read about AP therapy NONE of that came as a surprise (including the not so accurate arguments---AP can work on established severe RA). I'm also aware the therapy needs to be more extended than 3 months, but I figure if I start on it I'll just negotiate going longer at the 3 month mark. I'm encouraged that she's not dead set against it. I know there are other RDs but mine has loads of experience, is involved in research and I have confidence in her ability, so I'd like to stay under her care. All I have to do now is finish reading these books and perhaps consult an AP specialist.
On a good personal note she approved of my choice to take massive doses of fish oil. On a depressing note she described RA as a slow downhill train wreck. I can't wait until stem cell research or whatever makes having to suffer from this disease a bad memory!
Keep on truckin' folks!
Gimpy-a-gogo39093.7340162037

Hey GoGo!

Congrats!!!! You just go, girl!

Did she write the scrip? What dose are you going to be on? Remember, too much in the beginning can cause a hellacious herx. Also, there's two protocols 1) MWF 200 mgs and 2) daily. What did she write the scrip for? What did she/you decide about weaning off the other meds?

Also, if you've been reading the 2 AP sites, did you notice all the posts about avoiding vitamin D? Which would be fish oil. Not trying to be a downer - but have you looked into the MP at all? (I think their website is www.sarcinfo.org. - I'm not sure tho). I'm not on it (yet) but as a nod to it I'm cutting down my dietary D (and sort of avoiding sun as I'm in the NE and we don't have sun here 6 months of the year anyway).

Yeah for you!!!

Pip

Great news! You are fortunate to have an open-minded rheumy, and if you have trust in her, stay with her for now. She will probably be willing to extend AP if she sees that you are committed to it, and you will need her cooperation if you try to wean off the Mtx and Plaq. You have taken a major step forward - it may be an uphill road, but it certainly does not have to inevitably become a train wreck! Best regards, PatWell, I tried taking the tetracycline prescribed by my rheumy for my OA, and I have quit. I gave it a good shot, but saw no improvement.

It was given to me because I commented that I felt much better when taking Bactrim for a UTI. The doctor said there have been studies showing antibiotics can block the enzymes which attack the cartilage in the OA process.

So, this one did nothing. Perhaps when I go back to see him he has another one I can try. I'm willing to try anything!

a train wreck? I wouldn't like a doc to say that but with the current meds it seems like a slow ride... maybe someday they will be able to say this med will stop the arthritis and good news you will keep your hair and liver and heart.. yup one day maybe

Hi Hillhoney,

My mom is starting AP for her OA which is very, very, bad. She might be too far gone (I'm hoping for an improvement in her calcium deposits in her spine) which would ease a lot of her pain. The other reason she wanted to start is it will help her with her IBS. We just have to get her through her knee replacement surgery and then off she goes.

May I ask - which tetracycline were you on? And what dosage? What did you mean about giving it a good shot but saw no improvement? Do you have OA and RA? I'm not trying to be nosy...I'm trying to figure out how AP doesn't work? Mainly I've never heard of it not working if you stay with it and tweak it so it works for you. Of course, that means you have to be your own doc a lot

Again, hope I'm not offending - just want to know.

Pip