What type of antibiotics are used for AP therapy?
They usually prescribe minocycline. Sometimes doxycycline. Both are in the tetracycline group.
Gramma I can't answer the teeth question as I have dentures but my insurance does pay for my Minocin since it is an approved DMARD. I told my Dr about AP and took in some info that I printed off of roadback.org and she was like it's worth a try. She has since educated herself in AP therapy.
I do take it with my other RA meds. No since in getting damaged while waiting for the AP to work.
AP is a long term therapy but you can get a lot of info from the site I posted above. I have taken it for 6 months and since it can take a very long time I am going to give it a year but need my RA meds as swelling was too intense.
Hope this helps some.
It took two years for AP to totally erase my RA. There were a lot of ups and downs. But I must say that even though it too sooo long. I was never as bad as when I was on the traditional meds prescribed by my rhuemy.
It is not an overnight fix. It is a process. I've heard some have positive results immediately and I've heard as long as 5 years. Bonny, I wouldn't give it just a year.
I feel it is a lot safer than the biologics. They repress your immune system and then you are open to all kinds of crazy infections.
Check out roadback.org and find an AP doctor. He will be familiar with the ups and downs of AP. I had a wheelchair access card last summer. That is how bad I was. I've been in remission since December. My RA was very aggressive and my original rhumy said I would be in a wheelchair within a year if I didn't do what he said. I'm happy to say I am leading a normal life and will never take my health for granted!!
Becky
AP is a long term thing from what I have read so it would do no good to start then stop then start. Actually by doing that you make the therapy less effective.Hey -
The drugs are usually in the tetracycline family. The first choice is Minocin but the generic Minocycline will work as well. Those who develop a 'true' allergic reaction can usually switch to doxy. For those with allergies or high Lupus levels - Zithromax can be used. You need an AP doc to sort it all out. There are ways to get yourself over drug allergies - but I'm only beginning my research on that. For example - I am allergic to sulpha drugs and those are used in the advanced protocol, the Marshall Protocol, or MP. Since I am seriously thinking of that, then I need to get over my sulfa allergies - and if it works (cure) it's worth it to go to all that trouble.
These are the same old drugs and they are off patent - meaning - the drug companies make a hell of a lot more money on the new stuff then the old which you can get in generic. Children who do not have their permanent teeth can still get the grey permanent teeth when they come in from them those drugs. Children on AP are usually on zith for that reason. Pregnant women cannot take Minocin but I just saw a post that says they can take erythromyocin to avoid grey discolored teeth for the baby. Don't quote me on that - get an AP doc who can tell you what won't hurt an unborn baby. Apparently there is something.
In the beginning you can get black, grey, or yellow teeth. I did. It was ugly. But it comes right off with a dental cleaning, and I mean clean! The discoloration of your teeth comes with killing bad bacteria in your mouth. I had periodontal disease and even some bone loss and have been told multiple times that there was no cure for that. Periodontal disease is linked very strongly to heart disease. Not only are my teeth clean (ok, I'm heading to needing another one) but my peridontal disease reversed too. I am not kidding. These guys know.
Insurance companies will cover the drugs for AP - but after about 6 months they will try to move you to the generic from the brand. I cannot believe this. My meds cost 6 a month and how much do all the the traditionals cost??? We come off drugs - you guys add things in (mostly, not all, I'm trying to make a point) and they're *itching about Brand vs. Generic!
If you think you might ever go on to one of the advanced protocols, or that you'll want IV ABX (I want IV's) - you should get tested for mycoplasmic infection. There are labs and AP docs all over the country that look for it. Get this - the tests are notoriously faulty - but - if one of the buggers swims into the test tube - insurance will now cover your IV therapy. So...it doesn't hurt and can really help in the long term. I tested positive for strep so I'm really happy on the IV issue.
This is how you approach a traditional RD. Go to the Roadback and on their homepage is a lot of info. One is education. I think one is for doctors. Go to the studies and print off anything that looks good. I think the RB does a synopsis. That will work but I wanted to hit my doc hard so I did a Google search to find the actual study by using the words in the title. I found the actual Israeli study etc. I bundled it up, got the book "the New Arthritis Breakthrough" and took it to my doc. Now get this - I've posted I've had problems finding a local doc to monitor me. With my history, I need monitoring. Every doc except one was willing to write a scrip but none were willing to monitor me. How is that for crazy? So I think you can get somebody (usually a GP) to work with you if you are not near an AP doc. But rheumy's are a whole other bird. There was just a post on the RB about what this woman's doc said to talk her out of AP. I've heard that they only use it for severe cases, or they only use it for mild cases, or it can cause hepatitis, or you can get Lupus, or...that's why I tell people to read the book and lurk on another board (or email me) to get the truth from those of us taking our health back. Word of warning - if the doc's not looking you in the eyes - that should tell you something.
The theory is that you should be on AP alone as anything else is suppressing your immune system. But that's hard. There has been a trend lately for people to stay on their meds until the AP kicks in and then wean off the DMARDs and Biologics. I was lucky that I was newly diagnosed and not on anything. You have to make that decision.
You cannot do AP therapy short term. The whole idea is that you have an infection living in your white blood cells and you need to get that bacterial/viral load down. AP can do that because the drug works by interferring with the reproductive cycle of the microbe. But it is extremely difficult to get rid of all the infection. A portion of people on AP manage to get better enough to get off ABX forever - but for many people it was only wishful thinking. My thinking is if you feel a twinge - you are still infected. DO NOT GO OFF THE ABX BECAUSE ITS HARDER TO GET UNDER CONTROL A SECOND TIME. That warning being said - there are advanced protocols that started with Dr. Browns work and ran with it - I think we have a lot more options than just Mino - and I think it's possible to have a real 'cure'. But you need to get through AP first. :-)
I'm not sure I understand that last question. Oh, maybe I do. No, you can't use AP between treatments of DMARD's and Biologics. One suppresses the immune system and the other is trying to clear out enough infection so your body take over and does what it's supposed to do. There are a group of people that are close enough to being 'cured' that they feel comfortable getting off AP for 6 weeks at a time or only get the clindy IV's twice a year. Imagine that! But if you're doing AP you should not be doing DMARDs and Biologics - at least long term. They are defeating the purpose of AP.
Hope this helps,
Pip
Does eveybody in the wold type faster than I do?can anyone tell me if azulfidine is an antibiotic therapy?and does anyone on here take it?
thanks
I don't think so - it looks like an immunesuppressant to me. Here's a link to info on it that says don't take with MTX - so if anybody is on this - don't take MXT! Or folic acid!
http://www.healthsquare.com/newrx/azu1045.htm
P.S. This seems to be mainly for IBS or colitis.
Healing to you!
Pip
my doctor just gave me this prescription yesterday saying it is a apx and to take it with my MTX, so now I'm really confusedCall your pharmacist right now because I'm no doctor and you need to know for sure. Sulfa drugs are a type of ABX but sulphasusine (spelling?) isn't. Can't these guys come up with better names?
Pip
yes the spelling on my bottle is Sulfazine EC 500 MG take one twice a day. it says its a subst. for AZULFIDINE.Here are some interesting links for those who might question some of the things they're taking.
http://www.providence.org/healthlibrary/contentViewer.aspx?h wid=hn-1368003&serviceArea=alaska
On the above one - if you erase everything up to 'health library' you can get some really interesting subjects. It's their main library page!
http://www.pccnaturalmarkets.com/health/Index/Drug.htm
I had one for checking the meds themselves but I can't find it right now. Try a Google search for the drug and "PDR" and "contraindications" and see what pops up.
Pip
Please call the pharmicist - I'm allergic to sulfa drugs so I kind get weird about them. I may have just freaked myself out and took you with me.
Sorry,
Pip
Oh gosh,don't get yourself upset. I will call and I haven't taken any of these yet.
thanks for your concern for me
:-)
Pip
I am sure that I will keep on going with AP after a year. Just a little frustrated but in the end it will have been worth it.
Pip we don't type faster you just type a lot more.
I got my AP protocol from a roadback volunteer who's been on AP for 13 years and runs an AP support group. Their thinking is if you slowly build up your AP to the max dose (in my case, 200mg MWF) stay there for a few months, then start slowly decreasing your conventional meds you may avoid a herx. While I feel impatient to get the AP going full steam I suspect there's wisdom in those words! Plus, I haven't actually told my rheumy I'm doing the AP thing---mostly because I've been waiting for my appointment for 5 weeks (I see her Monday). I feel confident she will reluctantly follow this plan, since I'll still be on her mtx for a while. The only drawback I can see is, as usual, it will be hard to distinguish a herx from a flare with this method.
Watch that pain with xrays. I though I was herxing off and on for several years while on AP, and actually the disease was getting worse. I have lots of damage from that period of time.
Bonny -
I adore you!
Less131 -
Would you tell me what dose you were on, length of treatment, AP doc? etc. Every once in a while I run into somebody that says AP didn't work for them - but when I ask for more info, I don't get it. Please? What happened?
Pip
Pip - You are great too! Pip excellent info and thank you for taking the time to answer all my questions. I have another one for you. I am allergic to sulfa drugs also and you mentioned there are ways to get over a drug allergy? How does one do that? I had never heard of that before.Yep, I've been told that multiple times but especially by a very reputable source. She gave me a name of a doc that works with people about that. Send me a PM and I'll give you his name. She said just call. :-)
I've also read that there are other ways - something involving a lazer? - some do tolerence building. Like I said, I haven't done all my own research yet so I can't say it really works or not - but I really want to try so I have the option of that additional antibiotic protocol.
Pip
Pip - I was on the AP for five years. I started with MIno, twice a day 100 mg. I did not take generics. It seemed to work great at first, but acted more like an anti-inflammatory. Within eight months it was losing its effectiveness and I also had pretty sever hyperpiementaiton issues on my legs. My rheumo took me off it immediatly after he saw my legs.
I then went to Vibramycin ( doxi) at twice a day. My once mild RA turned wild, labs shooting through the roof. I had normal labs prior except for a very low elevated RA factor. I had so much pain and could not even turn overin the bed at one point. I kept thinking that it was a herx, and just kept getting worse. I believed it was the get better before you get worse stage. Zithromax was added in at one point, but it made me hurt so bad that I couldn't walk.
I started HRT and my symptoms started backing off.
I have so much damage that I did not when I was on Plaquenil alone. I cut my Plaquenil on my own in half, and I am sure that is when the damage started. I really need a wrist replacement, possibly the other fused, several finger joints and various joints of the foot. I should have kept up better with my xrays, but I didn't.
So please keep up with the xrays if you have pain.
Less,
Regular rheumy or AP doc? How familiar was he with AP? Why didn't he keep up with the X-rays?
That 8 month thing sounds a bit like a reaction most people get on the pulsing method (MWF) at around a year and a half - if they were not taking probiotics. Were you on probiotics? If so, how much?
Are you saying you were mostly symptom free and after month 8 the symptoms came back and worse?
Do you have a theory on why HRT helped?
Pip
P.S. Thanks for answering, I appreciate it a lot, and I think people should know all possibilites of a treatment - while yours was a bad experience; they have to know what happened.
I've got to agree with what Less131 says. I have a friend who tried AP for 2 years (the first year she stayed with her usual meds, the second year was just AP). When she went to just AP all her blood work started going wrong and got gradually worse. She couldn't convince herself that the AP wasn't working and kept believing it was some kind of "die off". In the end = after two years AP = she couldn't get out of bed and had bad damage in her feet and hands.
Anna,
Nobody is mad about it - people just want to know what is going on and why. I asked you before if you'd get your friend to email me - I'm on AP and my figuring out what can happen and how to get around it determines whether or not I will eventually be successful (long term and this includes the possibility of a cure) on AP. The problem with medicine in this country is we're trained to not question our doctors - and I am at that point in my life where that will NEVER happen again. I want to question both the people that are successful on AP and those that are not.
We who are on AP occasionally hear stories of people like your friend - but I've never been able to substatiate it. To someone like me it seems like some sort of urban legend - instead of aligators in the toilet it's AP failures that have damage - but you never get to talk to the people themselves. Less is talking about it...and I'm listening.
My biggest question is why would such a benign medicine cause such a reaction? I've seen TONS of posts about the reactions people have to the tradition meds - and to me that is very understandable because the medications themselves are so toxic. But Mino?
So, to my way of thinking, either these people had some sort of allergic reaction (which to my way of thinking is impossible even tho the medical establishment thinks it's a possibility) or their doctors did something wrong. I want to know which it is - and if there is something I need to do to 'go around' it.
Pip
Hey AnnaUK, I don't think anybody actually gets mad about you posting your or your friends experiences with AP. I'm interested in hearing all stories, be they successes or failures, because I learn from them. AP doesn't work for everybody, but no RA treatment does (plus no RA treatment is NOT dangerous, IMO). I am interested in doing everything I can to make AP work for me, so stories of it not working are a valuable source of information about pitfalls and things to watch out for. Please continue to post whatever you want!I went to one of the best AP docs in the country. Flew 2500 miles each way to see him. That was probably the problem...too far away to keep up like I should have. I had xrays the first time, the machine was down the second time, and the thrid trip I took xrays from the local hospital whew I had had them done and that is where the damage was really starting to show. I then changed back to my original rheumo who kept me on the AP for one more year, but told me that my window of opporturnity was running out for MTX. That is when I switched. I was his first patient on AP ( my original rheumo) and he has since discontinued usage of antibiotics as he did not see the results he had hoped for in his patients.
(I was on probiotics and many supps). It just wasn't for me.
I do believe there is a horomonal link - I did not have RA until I went of BCP's. I had had fleeing pain for years, but until I was hormone-free did the RA stay and never leave! WHen I wnet on HRT, my symptoms backed off by at least 70 percent.
I don't understand it either about why you get worse and whether it could be an allergic reaction. ALl I know is my RA went from MILD to WILD while on Vibramycin. WHen I first started mino, I went into four different lung problems... Walking pneumonia twice, bronchitis, and flu- all within the first six weeks! Rare for me. I did test positive for mycoplasma ferms and I read mycoplasma can hide in the lungs, so I figured it was drawing it out as my first herx.
Strangely,even after three years on AP I still tested postitive for mycoplasma ferms so it was not beating it down.
I will be glad to let know anything about the five year journey that you would like. Feel free to ask if you have any questions.
Cassandra -
Yep - I've read a ton and I intend to switch over to the 'naturals' to maintain my remission when I get there. I have a friend that did this entirely the natural way - I mean got her life back AND her energy. If you send me a PM/email with your address I'll send her your contact info. I'm learning a TON from her - and reading a lot about it too. I couldn't start with this because whatever infection I have is just too agressive and I have stomach erosions - meaning every anti-inflamm I take burns another little hole in my stomach or GI tract. I can't 'heal the gut' until I can get off the anti-inflamms.
Garlic is a natural chelator - meaning if you have a lot of heavy metal toxicity - garlic will bind to it and help pull it out of your body.
Less - I have so many questions - and a truck parked outside my front door so I may not respond for a while - but when we get to the new place I'll find this thread and finish.
If you still tested postive - I agree that it sounds like it wasn't beating it down. Have you ever looked at some of the advanced protocols - like www.sarcinfo.com or www.cpnhelp.org? Both places are a little clannish - but their logic is good. I know you're not into this (and from what you describe, with good reason) but they have advanced protocols for dealing with 'unstable' diseases. I'm thinking of doing one of these to try for the 'cure'.
I flew 2500 mile too! Did you see Dr. F in Riverside? Just had to ask.
There's a book about the hormone connection I wanted to get because of a lot of research I've seen on the high estrogen levels for people with RA - even men! I don't have time to look for the name (if you're in a hurry go to the RB and search for 'hormone' and 'book' and see what pops up.) The guys name was Dr. Brownstein? Bowenstein?
The probiotics - you were on 3 - 4 times the recommended dose?
I just got over pneumonia - and knew I had those buggers even tho the test came back negative. These are hard to kill - really hard - which is why I'm looking at the other protocols.
Got to clean feverishly - we're supposed to be out of here in an hour - HA!
Pip
Pip, Your the fastest.Geez,
Gimpy- I wish I had NEVER gone off them! the only reason I did was my blood presure was running a tad bit high and my gyn would not hear or me takign them anymore. My internist ( female )begged to differ due to my bad cramps, but he took me off of them anyway. I wnet into full RA within months.
When I hit menopause, my RA went nuts. My internist had treated a lady who after a hysto was not put on hormones and had RA symptoms. After my internist put her on HRT, her arthritis went away. That is the main reason I went on it. It has been great ( until the last tow months and I have had my first flare in years). It is still nothing like it was before hormones.
Thanks for the info, Less131---I guess I have a new thing to research! It is ok to take MTX and Azulafine and folic Acid. That is bad information.BeeBee,
It depends on what you think is going on in your body. If you think there is an intercellular infection; you want to kill it off. If that means a long term use of ABX - then to make sure the ABX work and the buggers are gone - you have to take a heck of a lot of probiotics so the good flora is replaced. ABX kill off the good guys when they're going after the bad guys.
If on the other hand you think your body randomly decided to attack itself - and the immediate need is to remove the pain - then it doesn't matter which DMARD you use, does it?
My biggest concern starting AP was if I could avoid the deterioration as AP kicked in. I was able to do that with AP. But I've read here that MTX only slows the progression and the biologics stop the progression. Don't know if that's true.
Pip
P.S. Was there some other reason I was supposed to find this thread? My brain hurts from my trip. :-)
BeeBee hi there, could I ask you if you think the azulfidine has worked for you? &n bsp; thanks