my doc declined AP therapy | Arthritis Information
hi
went to see my doc today and she said wont be able to prescibe antibitoics since theres no study proving AP therapy and that she might loose her licence
i satb whole day today copllecting information for her to read..she just read a few lines and said"no"
i haveread that this has worked for so many of us........no harm in trying..what do i do
I don't do the AP therapy but there are many people here who do and I have read their posts and they recommend a website called www.roadback.org You can find a doc in your area that does do the AP therapy and a lot of support there. Good luck and I hope you find a doc that will do this for you!If you lived in North America I would say you need to look for another
doctor but I'm not sure how health care works in Fiji. Is getting
another doctor possible?
When I talked to my rheumatologist about going on AP she wasn't happy
about it, but she agreed to go along with it because, she said "it's a
proven therapy", so I'm not quite sure why your doctor said what she
did. Maybe she's not up on the research?
I expect the reason that your Rheumy says that it isn't "proven" therapy is because according to an article from Johns Hopkins Hospital Arthritis Center, there has never been a controlled study to confirm that AP is more affective than a placebo. The article can be found below:
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ANTIBIOTICS IN THE TREATMENT OF CONNECTIVE TISSUE DISORDERS
By Alan K. Matsumoto, M.D. |
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The role of antibiotics in the treatment of arthritis, in particular rheumatoid arthritis (RA) in an old but persistently controversial topic. Certainly one of the most well known and controversial figures in this area was Dr. T. Brown, who believed (like many others) that RA is caused by a difficult to identify bacterial infection and should be treated with antibiotics. Unfortunately, Dr.Brown never did the rigorously controlled clinical studies to prove his theories. Despite this, he had many supporters among physicians and patients. Dr. Brown has died but there are proteges still practicing out there.
There have been exhaustive studies to look for a causative infectious agent in RA without much success despite using very sensitive tools of molecular biology. The NIH has attempted trials of high dose intravenous antibiotics for RA without much success. The antibiotic minocycline has been well studied as a treatment for RA and I think the studies support that it has a modest benefit for patients with mild RA. Interestingly minocycline may have anti-inflammatory properties independent of anti-microbial effects.
As an aside, anecdotal (uncontrolled) reports of the benefits of certain therapies are generally not useful. That is because there is a strong placebo effect in arthritis clinical trials. As many as 30-40% of patients receiving placebo (sugar pills) may report that they are better. The power of positive thinking is real! So when you see those ads claiming the cures for arthritis is at hand-- buyer beware.
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Ta2d39170.4105671296
My rheumatologist agrees that it IS a proven therapy. Your article was from a Q&A done in 1999, and in my opinion,
somewhat misleading. I say that and not go into detail why, but I hate
"arguing" on the internet and to be honest, I don't care if you do AP
or not. After reading about the therapy in depth and weighing all my
options, I decided it was worth a try for me. Here are some
actual clinical, scientific studies which convinced me (and my
rheumatologist) that the AP approach is legitimate:
Doxycycline compared to methotrexate
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&am p;am p;am p;am p;am p;am p;am p;
cmd=Retrieve&dopt=AbstractPlus&list_uids=1127347 3&am
p;query_hl=2&itool=pubmed_docsum
Chinese study of minocycline in other treatment resistant arthritics:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&am p;am p;am p;am p;am p;am p;am p;
cmd=Retrieve&dopt=AbstractPlus&list_uids=9592865 &
;query_hl=4&itool=pubmed_docsum
Japanese study:
An evaluation of efficacy of minocycline as an anti-rheumatic drug in patients with active and refractory rheumatoid arthritis
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed& cmd=Retrieve&dopt=AbstractPlus&list_uids=10047718&am p;query_hl=25&itool=pubmed_docsum
Mira study, sponsored by NIH: (CONCLUSIONS: Minocycline was safe and effective for patients with mild
to moderate rheumatoid arthritis. Its mechanisms of action remain to be
determined.
)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&am p;am p;
cmd=Retrieve&dopt=AbstractPlus&list_uids=7993000 &
;query_hl=9&itool=pubmed_docsum
Treatment of early seropositive rheumatoid arthritis: a two-year, double-blind comparison of minocycline and hydroxychloroquine:
Treatment of early seropositive rheumatoid arthritis: Doxycycline plus methotrexate versus methotrexate alone:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&am p;
cmd=Retrieve&dopt=AbstractPlus&list_uids=1644724 0&am
p;query_hl=22&itool=pubmed_docsum
As anyone who's done even a cursory check into AP therapy would know,
it can take years for it to be fully effective, and while most of these
studies were done over short periods of time, most if not all still
showed a statistically significant improvement when RA was treated with
antibiotics. If that's the placebo effect, I WANT SOME!
Gimpy-a-gogo39170.4496990741Please understand that I'm not saying that AP Therapy is not legit. I think that it is although I don't know that it's any more or less effective than any other treatment. I have been researching because I am up in the air as to what approach I want to take for myself, so I have been doing some research which is where I came accross that article. There are risks to any treatment option. All we can do is pick which treatment option fits us best. I haven't decided which way I'm going yet.
Okay, Ta2d...I didn't mean to sound harsh. But it did prompt me to post some great research resources, didn't it? Haha!
Yes, I encountered many nay-sayers on the path to my decision, and I've
only been on AP for a short time so who even knows if it will work for
me, but the more I looked into it, the more I realised that there's
somethin' kinda fishy going on around the medical establishment's
response to AP. I think most doctors mean well but there's so much
phamaceutical and peer pressure the issue gets politicised. I suggest
reading The New Arthritis Breakthrough by Henry Scammell as a starting
place to research AP. The book also goes a way in explaining why it is
shunned by some in the medical communities.
So far I think AP has about the same success rate as most other RA therapies, but what's appealing about AP (to me, anyway) is:
* the side effects of the drugs used are less daunting than those in conventional RA meds
* It's the only therapy where you take LESS drugs over time instead of MORE
*a small number of people are able to stop all drug therapy for good.
Good luck with whatever
approach(es) you may try!
Gimpy-a-gogo39170.4590625Doxy and Minocycline are DMARDS, but the reason most doctors don't
recommend it is:
it doesn't have the same success rate as MTX or any of the TNF's.
It can take up to a year or more to start working. Can you imagine waiting
a year for it to work? The damage? the pain?
You'll note that most of your research states for mild to moderate RA, not
severe.
Antibiotics long term has just as many side effects. You digestive good
germs will die so you will have to drink something to put them back.
You'll have to take something else for the yeast infections. It can effect
your liver just like MTX AND can cause lupus/MS symptoms.
What I don't understand is why so many people promote it when it hasn't
even worked for them yet. Don't you think you should wait to see if it
works?
BeeHiya Bee,
The first study I linked up there, while small, showed that doxycycline has
the same effectiveness as mtx is the treatment of RA. It concludes
"Doxycycline is a safe disease modifying drug in RA whose effect is
sustained at six months. It compared favourably with methotrexate over a
six month follow up."
db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=11273473& query
_hl=2&itool=pubmed_docsum">first study I linked up there
I haven't been able to find any studies on how it compares with biologics
(TNF inhibitors). I'd actually be greatful if you could direct me to some
information about that.
Hey Bee,
Something clicked when I read your post last night---you're Annaart from
www.arthritis.org! I lurk but don't post there. I thought your posts
looked familiar! Anyway, I was wondering if you could direct me to the
sources of some of your information in your post, as it contadicts some
of what I have learned. I am always looking to expand my knowledge.
Thanks!
Gimpy-a-gogo39171.537974537Gimpy, I couldn't go to that link. I needed a password.
Could you cut and paste? Because I would be very interested in the dosage
for the doxycycline and MTX in the study. I have never seen a study where it
compared any drug with the various doses of MTX. I've been looking too. I
would love to find a comparable drug for injection MTX 25mg. It gets tiring,
but it works.
Arthritis.org? Are there message boards? I just went there and didn't find
anything. Though I see its the official Arthritis Foundation website.
Bee
Bee, my mistake, I guess. But you should talk to Annaart if you ever get a chance to because you're like,
eerily similar posters.
The link in my post with multiple studies works. Those studies are actually worth taking a look at, IMO.
Here's the link again, and here is the cut and pasted study for you:
- < ="1.2">
< ="1.2">
Links
Department of Medicine, All India Institute of Medical Sciences, New Delhi.
OBJECTIVE: To assess the efficacy and safety of
doxycycline as a disease modifying anti-rheumatic drug (DMARD) in
rheumatoid arthritis (RA) and compare it with methotrexate, a standard
DMARD. MATERIAL AND METHODS: A single (assessor) blind prospective
study with 15 patients of RA randomized to doxycycline and 14 to
methotrexate. Baseline disease characteristics were similar in both
groups. RESULTS: All disease activity measures studied viz. tender and
swollen joint counts, physician and patient global assessment, visual
analogue pain scale, health assessment questionnaire and ESR improved
in both the treatment groups after six months of treatment. The
difference between doxycycline and methotrexate was not statistically
significant. No major side effects necessitating drug withdrawal were
reported from either group. The side effects were few and mostly
gastrointestinal. CONCLUSION: Doxycycline is a safe disease modifying
drug in RA whose effect is sustained at six months. It compared
favourably with methotrexate over a six month follow up.
PMID: 11273473 [PubMed - indexed for MEDLINE]
You'd have to actually read the case study and not just this abstract
to determine the dose, and I don't have time to look that up for you
this minute 'cause I have to go to work.
I was just wondering if you could direct me to some of the resources
you based your post on? I'm particularly interested in how you know mtx and TNF
inhibitors are more effective than AP, and why you think antibiotics
have "side effects that are just as bad" (I assume from the context you
meant as bad as mtx and TNF inhibitors).
I'm just wondering because I haven't come accross that information and
I like to know as much as I can about what I'm doing, to better
increase my chance for success, so I would really appreciate it if you
could direct me to those sources.
Also, you seem unaware that you can take conventional DMARDS and
steroids while beginning AP therapy, thereby avoiding laying around for
a year sustaining joint damage and pain....*internet smiley thing here*.
Whatever course you choose for you, good luck!
Gimpy-a-gogo39171.7360069444PS...Another one of those studies I posted on the first page (in the
post with a lot of links) looks at mtx and doxy compared to mtx
alone...you should give them a looksee!
Gimpy-a-gogo39171.7308333333I did find the message board, finally. For being the Arthritis Foundation,
you would think it would be easier to find. Read a couple posts of that
person--she takes a lot more meds--lucky for me I only need MTX.
Perhaps she is from Penna Dutch country like me? and has a writing
accent?
I might try to sign up to that link you posted, because I have read several
places about comparsions between it and MTX but never any dosages.
Will reread the beginning post-though I thought I read the whole thread.
Arthritis.org RA discussion seems very nice and a bit easier to read, so
thanks for directing me. You really go to a site and just lurk? I mean
forever? Isn't that hard to do?
Bee
BeeBee39171.7884722222Hey Bee,
I wasn't trying to make you go away, haha! Anyway, you don't need to
sign
up for pubmed to view the studies...they just have weird linking problems
sometimes (plus I posted that one link that didn't work from my laptop
which has problems sometimes). Just go to their site at
http://www.pubmedcentral.nih.gov/
http://
www.pubmedcentral.nih.gov/
then enter whatever you're researching into the search bar. It's pretty easy
to use!
I would still like to see where your information from your post was
gotten, if you ever find the time.
Good luck with your search for wellness, on whatever board that may be
on!I did read a study that showed that mino did control the symptoms but did not halt the joint damage. When I have time, I will look for the site that I read it on. I guess this was the case for me when I took mino it acted more like an anti-inflammatory.Hye Less131, I would be interested in that. I have read conflicting things
regarding joint erosion, so I'll admit so far all I have on that is heaps of
anecdotal eveidence. Some people report no joint ersions, some people
report some erosions, and some people actually report cartilage repair!
(although all the reports I've read of that happen in really young people). I
wish Pip was around because she probably has more info on that. But if
you find any please post it!
Minocycline does have antiinflammatory qualities and that is one of the
ways it is theorised to work. Like most RA DMARDs, no one is sure what
the exact mechanism of the drug is. It is also theorised to do other things
(I have a killer mtx hangover right now and my brain hurts so much it
can't dredge up the terminology. It might suppress your bodies
production of stuff that is harming you, or it could be killing off
mycoplasma which is sending out stealth pathogens your body is having
an allergic reaction to).
I wouldn't believe in the infection theory as much as I do (that is to say,
with a certain grain of salt) if it weren't for the presence of the Jarish-
Herxheimer Effect* in antibiotic treated RAers. People without RA who
take minocin do not experience the herxheimer effect.
*Herxheimer reaction
From Wikipedia, the free encyclopedia
Both Adolph Jerisch, an Australian dermatologist, and Karl Herxheimer, a
German dermatologist, are credited with the discovery of the Herxheimer
reaction.
The Herxheimer reaction (also known as Jesrisch-Herxheimer or herx)
occurs when large quantities of toxins are released into the body as
bacteria (typically Spirochetal bacteria) die, often due to antibiotic
treatment and rarely due to the use of colloidal silver. Typically the death
of these bacteria and the associated release of endotoxins occurs faster
than the body can remove the toxins via the natural detoxification
process performed by the kidneys and liver.
Symptoms are typically influenza-like, with musculoskeletal pain and
inflammation, nausea and gastrointestinal complaints and heavy
perspiration, night sweats and fevers.
The Herxheimer reaction was first noted in the treatment of syphilis, as a
response to antibiotic treatment killing off large numbers of organisms. It
is also well documented in Lyme disease[1][2] and tick-borne relapsing
fever[3], infections which, like syphilis, are both caused by spirochetal
bacteria.
Hey All!
Damn Go-Go! I think you have studies I haven't seen! I have to get my list to compare! LOL.
I'm back in Cali - whoo hooo! I didn't realize your backside could actually fall asleep - until I spent 4 days in a car traveling across the country. I'll be busy for a week trying to find an apartment and getting the baby in school - but - I'm baaaaack!
Ok, with mushy brain - here's my take. From what I've been able to understand about RA's progression - it's the inflammation that causes the erosions. Take away the inflammation - and the erosions stop. As a drug stops working and inflammation rises again - erosions start up again. The Harvard Protocol (daily) Mino - supposedly has a more antiimflammatory effect. The Brown Protocol supposedly has more mycoplasma killing effect.
I've seen a bunch of studies that suggest that up to 70% of all AI diseases start in the gut. Unless we deal with all 'gut issues' then BeeBee is correct, we can end up worse on ABX.
Yep - I've read ancedotal evidence about the repair of damage on young children. I think it has something to do with their age and the growth hormones. (I swear the hormones are the link but I just can't figure it out!!!) I keep praying that is what will happen to Suzanne's little girl. For us, we can assume that as long as AP is working, we are avoiding damage. I have baseline X-rays that show no damage (except planters heel which has since gone away). I intend to have more X-rays taken to verify everything is going well - but since I have no pain and pretty much no inflammation (visual - I'm not in remission and my labs still show inflammation) I'll be talking to my AP doc about it next Monday on my next appointment on when/how often I need X-rays.
I brought all my files to Cali with me and hope to actually organize then in the near future - so I'm hoping to find the ones that mention the effectiveness of AP and the biologics. I think Alan said they were the same - but the study I saw that convinced me to do AP was the one that said 85% success rate. I figured that at half that rate I had pretty good odds. :-) I've been looking and looking for that study (in my files I SWEAR!)
Pip
P.S. My diagnosis was 'early onset severe' - and AP worked wonders on me. I think there was a study that said it works on 'severe' but I can't lay my hands on it now. It's funny - I know of one doc that said she only does Mino for severe cases when her patient was mild and then have heard of other docs that say only for mild - when you're severe. Hmmmmm.
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