I had never heard of antibiotic therapy until coming to this site. It is something I am just starting to research. Why have none of my 3 rheumatologists mentioned this as an option? This is what they study and their field of expertise. Why would they keep this information from me? I am a mental health therapist. I specialize in adoloscent issues. I stay on top of my research. If there are new treatments out there I usually know about them before my clients and research them thoroughly. Wouldn't my doctors do the same? One of my doctors is the top in the field here in my large town. Why is this information I should be bringing to THEM? Again, I'm just starting to look into this antibiotic treatment and don't have any opinion on it whatsoever at this point. (Though I do have a strong opinion on why I have to learn how to treat myself when I should be able to trust my doctors). I'm not as interested in anectdotal reports as I am controlled research studies. I'm open to any information anyone has to share. I don't know why this post would turn into a debate, as I've yet to figure out why this subject causes such rifts, so hopefullly it won't. Thanks for any info, J
Hi Juliah - I've just started antibiotic therapy myself, so by no means am I an expert. Karin and Pip are the one's you should talk to, as they are EXTREMELY knowledgeable.
My RD never mentioned AP to me either, I was the one that brought it up. He's willing to work with me on it however, but I am doing it in conjunction with traditional for the time being. My goal (and his) is to get my RA more stabilized, then hopefully do AP only.
A good book that was recommended to me is "The New Arthritis Breakthrough" by Henry Scammell. I ordered it from Amazon and received it a couple of days later. LOTS of information.
Hang tight, and I'm sure Karin, Pip, or GoGo will reply back.
Gale
Remember everyone --- To each their own.
Darn was trying to post before someone else posted
Just wondering.
I didn't ask my RD specifically why he never mentioned it to me, but I did ask him if he had anyone on antibiotic therapy and he said he had only one patient doing AP. BUT, he said that patient is doing very well and swears by it.
I see him in two weeks again, and I think I will ask him why it was never mentioned as an option. Especially since I'm at the end of the line as far as biologics. Orencia is the only thing I haven't tried, and I start that next Tues.
I'm not sure why Joonie said "To each their own", as no one (as far as I can see) is promoting AP or traditional therapy. This board is for learning and support, whatever your treatment choice may be, so it shouldn't make a difference. But for some reason as soon as AP is mentioned, everyone gets their panties in a wad. I'm still kind of new here, so I don't quite understand the rationale of that type of thinking.
Hummm... Juliah can you put that into "dumb people lingo" for me.
Brisen - I said it so people will reflect tell their story and not start a debate, like it has happened in the past. Like Juliah said she would hope it would not turn into a debate. Just reminding everyone... no need to get their panties in a wad.
When ya run out of options AP might be the next step.
Juliah, I can't answer your questions about why your RD didn't give you the info on PA. You need to talk with your RD about all of the medications that are used as RA treatment. When I was first diagnosed the first choice of treatment was AP therapy and it was recommended by my RD as the starting point. I was on it for a year with no benefits but I do know that it has been beneficial for others. If you do a search of this forum you'll find tons of research and information that the AP users have posted. The forum search will be a great start for your research into AP therapy. Good luck. LindyJoonie - I was at work all day and hadn't read the other thread when I posted to Juliah. After just reading it, I NOW see why you were giving a gentle reminder not to turn this thread into a debate. :)
Sheesh! The natives have been restless today!
Ah, there's the ,000 question.
Well, I'm the poster child for AP - in that I've seen 10 docs (3 were rheumies) trying to get AP. Most of the other's were PCP's. One was an infectious disease doc and my neuro (at one point the were ruling out MS) was actually impressed by my progress on AP. I think he knew about all the research coming out of Vanderbilt on MS, ALS etc. I am actually in the process of reorganizing my records and hope to have a 'time line' made from when I first bacame ill to my official diagnosis like 2 years later. I'll post what I find because it bothers me that their might have been more than 1O docs in this fiasco.
Actually - somebody once posted that they'd seen something like 40 docs - but maybe that wasn't to get an AP doc.
Karin actually posted this (she's ahead of me on the Roadback to health) and I copied it and saved it months ago.
1. http://www.annals.org/cgi/content/full/122/2/81
Tilley MIRA 48 wks minocycline vs placebo, 1995
2. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&a mp;db=PubMed&list_uids=10446869&dopt=Abstract
O’Dell 4 year Minocycline vs placebo, early-onset RA, 1999
3. http://www.rheumatology.org/public/factsheets/minocycline.as p
ACR on Minocycline, updated 2006; “Minocycline is prescribed for patients with symptoms of mild rheumatoid arthritis, sometimes in combination with other medications to treat patients with persistent symptoms of this form of arthritis.”
4. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&a mp;db=PubMed&list_uids=16447240&dopt=Abstract
Doxycycline + MTX vs MTX alone, no previous DMARD, <1 year with RA, 2006
5. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&a mp;db=PubMed&list_uids=11273473&dopt=Abstract
India study, 6 months, Doxycycline vs MTX 6 months, 2000
6. http://www.medscape.com/medline/abstract/11665963
Minocycline vs Plaquenil O’Dell 2001
7. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&a mp;db=PubMed&list_uids=9592865&dopt=Abstract
Chinese, Minocycline + unspecified DMARD, DMARD resistant before study, 1998
8.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&a mp;db=PubMed&list_uids=10047718&dopt=Abstract
Japanese study, DMARD resistant, 6 mos, 1 yr, minocycline only, 1998
9.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&a mp;db=PubMed&list_uids=1334514&dopt=Abstract
Israeli study, DMARD resistant, 48 weeks, minocycline only. Limited data, 1992
10. http://www.jrheum.com/abstracts/abstracts06/224.html
London study. Tetracycline plus clindamycin vs no treatment, 1 year, DMARD resistant, 2006
If I remember correctly - #6 doesn't come up right and the correct study is -
Thanks for all the links. I have been on all the TNF's and had two courses of Rituxan with no luck. I really don't feel like trying Orencia, so I am going to talk to my RD next week.
I have no idea what his stance is, but, he hasn't mentioned it in over 4 years.
I am tired of infusions I guess, I just figure it can't hurt to try another way at this point. Seems to me I don't have a lot to lose if it doesn't work since nothing else has either.
Good luck Juliah, I am going to be doing some research myself over the next few days.
Crispy -
Good luck with the RD. And get the book the New Arthritis Breakthrough by Henry Scammell. It's a easy read, explains a lot of how AP came about and makes the whole process less 'out there'.
Juliah -
When I first became ill I had bouts of excruciating pain that kept landing me in the ER. They couldn't say for sure what it was but after the 3rd time (6 months apart) they referred me to a rheumy who said I was Palindromic RA but that I had a lot 'unusual' symptoms. Like carpel tunnel not usually being part of RA. And pins and needles in my hands and only one foot. Whenever questioned the rheumy said the 'best fit' was RA. Now when they said "PRA" and we'd just recently lost my husbands aunt to complications or RA - well - I wigged. Does anybody here blame me?
I started all this Internet research and found a case study on 'early onset severe' (my diagnosis) RA that was treated by antivirals where the patient was cured. I wanted antivirals. The docs said no. I can't blame them as I was such a mess I had to take my hubby to doctor appointments to 'translate' what I was trying to say. This is some sort of infection we keep saying over and over but they won't listen. We were also sent to an infectious disease doc because of being out of the US and that we'd been camping. Then we had the rheumy in with my PCP to facilitate my treatment. Both of them understood our position - but "first we start with Plaq for a couple of months and then MTX and then the biologics. If after 8 years it doesn't work, we'll consider AZT." That is a direct quote. When we left my husband looked at me and said, "I'd bet if this was happening to their kid they'd look at something else".
So, a month goes by and I find AP. We make another apointment. We see the same rheumy. He's see's my hubby and looks at the book in his hand. My hubby says we want Minocin - sweet, nice, etc. No recriminations. And what did that rheumy say? "Well, it's better than any medicine I could give you".
Oh yeah? When you knew what we were looking for? Why didn't you suggest that LAST month?
So Juliah, I can't answer why your doc never brought up the possibility of this. Even if it didn't work, I wanted to try it. And I made myself abundantly clear about the infection etiology.
Since I found AP I've spoken to maybe 50 people starting AP. One woman was told by a high rent rheumy that AP can cause hepatitis. Excuse me - AP can cause a virus? The most common is the medicine-induce-Lupus hyperbole - duh - stop the Mino and the MI Lupus goes away. But a rheumy should know that, right? Or that there are other tetracycline drugs to use if that is a concern. But they weren't told that.
Go to www.rheumatic.org. Read the ancedotal evidence you don't really want to hear - read it for patterns. Like rheumies prescribing 400mgs of Mino a DAY. That could flare a HORSE!
Like you - I was only interested in studies. This is not alternative. This is full on western peer reviewed mostly double blind medicine.
Tell me why I wasn't offered this.
Pip who just got her knickers in a wad just thinking about this again.
Hi, Juliah: Here is a list of CLINICAL STUDIES done on antibiotics for RA:
http://www.roadback.org/index.cfm/fuseaction/studies.sub/sub group_id/16.html
Please note-- the complete studies are not listed here, just a brief summary for copyright reasons. If you want the complete studies, go to nih.gov and search the name of the study and the authors.
Take care.
Sorry the link was not live before, I just fixed it.
Juliah: You also asked why you haven't heard about this treatment from your doctors. It is a long and complicated answer, but it boils down to medical politics. Here is a brief history about Dr. Thomas McPherson Brown and the struggle he was up against:
http://www.roadback.org/index.cfm/fuseaction/aboutrbf.displa y/display_id/397.html
RIP, Tom Brown, and thank you for giving me my life back.
There's a book called "Why Arthritis" which attempts to explain all theThank you all for taking the time to post your responses on here. I really do appreciate it. And it's not that I don't want to read the anectodal material, I just don't want to base any decisions on it. It's good as a supplement.
One more question.....I keep hearing others say that AP is great after all else has failed. Is that the general consensus on AP?
Ok, I'm off to read all the links you guys generously provided. I come to this site with baggage of my own. After my son was born (9 years ago), I became very ill. I was seen by numerous doctors (including 2 hospital visits) and was told that it was anxiety, costochondritis, post partum depression, etc. I got sicker. It turned out that I had congestive heart failure (Post partum cardiomyopathy). I was livid! I had been sent home numerous times with xanax, being told that being a new mother is stressful, get some help. I felt that if a young MAN had been complaining of shortness of breath and similar symptoms, he would have been admitted to the cardiac unit right away and had a full work up until the cause was determined. I'm fortunate that the cause was found, but do realize that my son nearly lost his mother during the first year of his life.....and I fault the medical profession and their treatment of women.
[QUOTE=JuliahRA]Thank you all for taking the time to post your responses on here. I really do appreciate it. And it's not that I don't want to read the anectodal material, I just don't want to base any decisions on it. It's good as a supplement.
One more question.....I keep hearing others say that AP is great after all else has failed. Is that the general consensus on AP?
Ok, I'm off to read all the links you guys generously provided. I come to this site with baggage of my own. After my son was born (9 years ago), I became very ill. I was seen by numerous doctors (including 2 hospital visits) and was told that it was anxiety, costochondritis, post partum depression, etc. I got sicker. It turned out that I had congestive heart failure (Post partum cardiomyopathy). I was livid! I had been sent home numerous times with xanax, being told that being a new mother is stressful, get some help. I felt that if a young MAN had been complaining of shortness of breath and similar symptoms, he would have been admitted to the cardiac unit right away and had a full work up until the cause was determined. I'm fortunate that the cause was found, but do realize that my son nearly lost his mother during the first year of his life.....and I fault the medical profession and their treatment of women.
[/QUOTE]
Juliah, there are studies that suggest that you are correct; that men do, in fact, get taken more seriously when having heart pain, palpatations, etc.
And no AP is not just for "after all else failed." It has been my first and only DMARD (yes, it is a DMARD according to the American College of Rheumatology).
Take care, Karin From what I have been reading, it says they check your blood work, I read the list of things they check and most of mine is relatively normal, only slightly elevated crp despite all the swelling I have and you stay on it until your blood work becomes normal. What if your blood is relatively normal to begin with are you still a candidate for ap therapy?
GoGo -
I reread that post - damn - I type a lot! LOL But did you notice!!! I hit the nail on the head. It was something like 6 weeks later and I got pneumonia again. Damn, myco's!
Elaine -
Good for you! See my response to Michelle! The only traditional med I was on was a couple of Pred packs and it made me worse. Enough so that my hubby argued with the docs about it.
Michelle -
When approaching docs - don't call them an idiot - which I did on occasion. My lack of walls from the stroke/adverse reaction makes me blurt things - so, if you think there is the slightest chance you are apt to say something not entirely polite - take somebody with you. Actually, we should all take somebody with us to get a second set of ears and to verify that we are having our concerns met.
Go to the Roadback and get the info on the studies. There may be more than the ones I reposted from Karin here. Those are summaries. Google the main words in the summary to find the entire study. Print all studies out into a neat packet. Also, look at the section they have on the Road back that says "Physician packets". Make sure there is no overlap but just check that you have everything.
Get a copy of The New Arthritis Breakthrough by Henry Scammell available at Borders or on Amazon. Read it through. There is a lot of info in the stories. Take the book with you. I even bought an extra for a doc on the off chance I could find a doc willing to learn about this with me. What's if I can get somebody to help me help myself. (I also got if back from anybody not into learning and said..."Next").
Go over in your mind possible scenario's to see if you can figure out how you will respond if one of the 'scare tactics' are used. When my mom saw her doc he was really into the Minocin Induced Lupus possibility - rightly so - he had a patient actually get MIL when she was a teenager on it for acne. Poor Mom, she looked like a deer in the headlights when he told her she could get that. I just said, "but if you take away the Mino the Lupus goes away, right?" He said, 'yes'. Then I said, and you could switch her to doxy, right?" and he said 'yes'. So now he's running blood tests about her IBS. Like she's had a million times before. He's stalling. But mom is actually being a bull about this. Good for her! I also shut up a couple of docs by saying "are you telling me a medicine that's safe enough for teenagers long term is unsafe for me". That stops them in their tracks.
Tell them you want Minocin. When you get the script in hand make sure it has DAW - (Dispense as Written) on it. That will get you the brand. If it's just the generic, yes, it will still work. But, try to get the Brand first if you have any stomach/GERD issues. Better absorbtion, less stomach upset, and time released.
Now - here's a kicker. AP does not need an AP doc - most GP's will prescribe for you. But if you can get your rheumy to help he can run a lot of the blood tests to be sure you are moving in the right direction. Like Less says, get the X-rays until you're sure you've hit remission.
If however, you are anywhere near an AP doc - think about getting an appointment with them first to run mycoplasma tests. You may test negative (remember I tested neg for c. pneumonia but son-of-a-gun got pneumonia again) - BUT - if any of the buggers swims into the vial, insurance will cover the IV treatment if you choose them later. Insurance will cover IV's for an infection - but not for RA.
Juliah -
Oh, you and I are sooooo on the same page. I don't mind when they mess up on me so much - but there were 2 ugly misdiagnosis things for my daughter. Always double check. And yeah, we all get the 'it's only in your head' about this, not only the new mother stuff. I guess if we're on enough AD's we won't be bothering them about the RA.
As for the 'when all else has failed", that was exactly why I wanted to start AP first. It seemed that if AP failed I'd have nowhere else to turn if I did it in the opposite way. On the RB and other AP boards there are a lot of posts from people who tried AP in the beginning, didn't make it through the herx process (it hurts - but we hurt anyway) went on the traditional meds, they eventually failed, and they were back to AP - committed to making it work this time. This time they did diet work, supplements, learned all this 'AP stuff' and most then posted that it had started working. Mind you - I've posted before, the only BB I'd ever been on before was the RB. I didn't know other RA boards existed. So, meeting others with RA is eye opening for me. I am pretty darn glad I made the choices I did.
Pip
Michelle -
Yep - you're still a candidate. We've all seen sero-negative people get better. I don't think the MD's will say that you're not a candidate on that reason. I have heard people were told that "it doesn't work on severe" (I was severe and it DID work and quickly) or the exact opposite (I save that for my severe patients or when all else fails). Duh?!?!?! If that doc considers AP a BIG GUN I darn well want it first.
Chaps my hide! It's always what you are not!
Pip
I can't remember if anyone posted the roadback website on this thread....itPS....It's my belief that if people are given AP VERY early in the course of the
disease it will cure them entirely in about a year and a half. It's a really short
window of opportunity, though.
GoGo - how did you form this opinion? Did you read something that made you think this? A study? Just wondering because that's my thought too - but except for one similar case study I can't 'prove' it.
Pip
No, I have no scientific proof at all. I've just read many anecdotes of people who started AP early and then later they were so A-OK their doctors said they must have misdiagnosed them. I don't know how Mark1 from this board is doing these days, but he started AP right after he was diagnosed and that happened to him. I also believe it beacuse Dr Gabe Mirkin says so. I've posted this broadcast before. The AP part starts 4 minutes and 48 seconds into the broadcast (after some stuff about sperm counts and cell phones)---it's a pretty interesting listen that I think you would enjoy.[QUOTE=Gimpy-a-gogo]No, I have no scientific proof at all. I've just read many anecdotes of people who started AP early and then later they were so A-OK their doctors said they must have misdiagnosed them. I don't know how Mark1 from this board is doing these days, but he started AP right after he was diagnosed and that happened to him. I also believe it beacuse Dr Gabe Mirkin says so. I've posted this broadcast before. The AP part starts 4 minutes and 48 seconds into the broadcast (after some stuff about sperm counts and cell phones)---it's a pretty interesting listen that I think you would enjoy.
Download Dr Gabe Mirkin's MP3 radio broadcast about AP, starts 4min 48sec in
[/QUOTE]
Wow, Gogo, Ive read a lot of his stuff and know people who see Dr. Mirkin, but I've never heard him speak! Thanks! I think I'll post that on the RB.
~Karin
Arrrrg!
I don't have sound! Why don't I have sound!?!?!?!?!? Stupid old computer!
Pip
Pip - Do you have the Quicktime player installed? Is your volume turned up? Just checking, LOL!Yes! Like 3 different audio players! And the button on the side. And even that little one on the top of the keys that has the little megaphone on it! I thought something was wrong the other day but...didn't sweat it because the computer was UP AND RUNNING!
I want my hubby!
Pip
Forget the hubby, just get a new computer!
*Just kidding, or course!*
You always make me laugh at loud!
We should do lunch! See me snort my diet coke across the table. Fabulous!
Pip
Pip: Didn't you give up the diet sodas awhile back? I noticed you're back to drinking them! Me too. I can't stop! Ahhhh!Actually, it's practically nothing now - but in honor of Gales' humor I might have to partake!
OK, OK What does this say!!! Somebody download this and keep it on their computer until I can find out what's wrong with my computer AGAIN! I can't get another one until the house sells! The 60 minutes link is off now!
Pip
http://www.winhs.org/media/media20070626.htm
I WISH I could stop drinking Diet Coke. I'm totally addicted, have been for years, and see no way of ever stopping...although I have cut back some.
**Note, I said DIET COKE. NOT Diet Pepsi or any of that other wannabe crap.**
Pip, we really SHOULD do lunch! Maybe see who can snort diet coke the farthest??
When and where? I have no idea where you are...but I'm in Riverside Monday. Anywhere near you?
Pip
Actually, Riverside is only about 15-20 miles from me. Unfortunately, I work on Monday.
I'm taking a couple of weeks off in August, so we MUST get together!
Works for me.
Want to boogie board?
Pip
Maybe if my mino kicks in! :)
I'm still struggling with the headache thing. It subsided for a day, but I've basically had a headache for a week. That, and my gut is kinda bothering me.
I know I said I was going to start taking my mino on MWF only, but then I felt like a wimp, so have been taking it every day. I probably need to cut it back.
Gale: No, no, no! Please do not feel like a wimp for going to MWF! I believe it works BETTER on MWF. So does Dr. Brown. See, the minocycline works from the inside of the cell out. It is called a bacteriostatic drug because it does not completely kill the bacteria, but inhibits a protein on the inside of the cell, that keeps the bacteria from reproducing. The immune system is needed to finish the fight. Pulsing gives the immune system a chance to step in and finish the fight. Have you ordered/received the book, yet? Here are some more reasons to pulse:
http://www.roadback.org/index.cfm/fuseaction/education.displ ay/display_id/127.html
Take care, Karin
Yes, I've received and read most of the book, and I understand how pulsing works. I guess it's just my warped mindset that if MWF is good, seven days a week is even better.
Hanging out at the RB, I read of someone taking 200 mg. twice a day, EVERY day...and they say they feel better. Guess I was just hoping that if I take it more often, it will kick in faster. :(
Hi, Gale! Yes, 200 mg per day is the Harvard protocol. But you have to remember that MORE is not better necessarily in AP. It is very hard to fathom because it is so ingrained in our society to think that more is better. But MWF can really work better, in the long run. I think you are talking about Rosemary, maybe, who needed it every day? I do think every day will work-- you are still killing microbes. But in my opinion, you are killing less microbes, and it becomes more of an immunosuppressive/anti-inflamatory effect on the every day dosing.
Hang in there! ~Karin
PS: I like Diet Pepsi better.
And BTW...I'm definitely hanging in there. I have NO intention of giving up, but I am going to back down to MWF. In addition to the headache and stomach problems, I'm also feeling really shaky and dizzy. It's just too much, too soon.
Gale!
I was so with you in the beginning - I wanted it to kick in yesterday! But I never did the daily because I was stuck on "Dr. Brown said...". Later, after reading tons of posts, I noticed a couple of things. 1) most of the daily people were either seeing Dr. T in Boston (who developed the Harvard Protocol) or were scleroderma patients. They tend to NOT herx. And here's the important one - #2) After daily people got the disease under control they would eventually lower the Mino to a maintainence dose - and herx all over again. That tells me you (we) need to herx to kill the bad boys. Lately the RB has a science girl that half of which she says I can't understand. She is convinced that pulsing kills more of the buggers from studies she's read and tries to explain to us (frankly she could dumb it down more) - anyway - I agree with her without having the microbiology background that she does.
Karin -
I was going to invite you to lunch with us - but - uh - diet Pepsi - uh - not so sure now.
LOL
Pip
I've been keeping a daily chart of how I feel since I started AP, and after a certain point I noticed "less is more".