Tammi Shlotzhauer on AP | Arthritis Information

In her book, Living With Rheumatoid Arthritis, Schlotzhauer, M.D. says this about Antibiotic Protocol, minocycline (generic), Minocin (brand name):

Minocycline is an antibiotic in the tetracycline family. Its story as it relates to RA is a very interesting one. For over fifty years, researchers have been trying to prove that there is an infectious cause or "trigger" for RA. One physician, Thomas McPherson Brown, ardently believed this to be true. Just before WWII, he isolated a microorganism, mycoplasma, from the joine fluid of a woman with RA. This finding could not be confirmed by other researchers, and so it was discounted by the scientific world. Despite this, he started treating patients with tetracycline-type antibiotics and had good results. He published a report on 98 of his patients in l985: because his study was not a "double-blind" study, his results were not considered scientifically valid. He wrote a widely circulated book called The Road Back describing his unique perspective as an early pioneer in this area (Brown's work included in Scammell, l998).

In the last decade, several scientific studies have shown that minocycline IS a safe and effective treatment for RA. The largest of these trials, called the MIRA trial (minocycline in rheumatoid arthritis) was published in l995. After this report, many physicians began prescribing minocyclkine for RA. Minocycline has not been approved by the FDA for use in RA and likely will never be. The studies needed for FDA approval are very costly, and since this medication is available ina generic form there is no source of funding to perform the necessary testing required for approval. Because of its widespread use, effectiveness and safety, this medication has become a commonly prescribed DMARD, particularly in patients with mild, early RA.

This is a brief history for anyone new and not familiar with AP.

Thank you Jan, a very concise and accurate historical protrayal of minocin and RA. I will have to read this book. The point that more tests are not going to be conducted makes alot of sense, why waste the money when you have a good drug already working? The Mira trial was corrupted. The study group was provided corticosteroids and nsaids along with the anti-biotic, thus corrupting the findings. Even then the benifits were modest. The American College of Rheumatology Hot Line posted this conclusion and truths about the Mira Trials. For some reason, the APers conveniently don't post the fact that the trial was corrrupted and the ACR's conclusions. Here is the complete story link from ARC HotLine, you will have to copy and paste:

http://www.rheumatology.org/publications/hotline/archive/0195minocycline.asp?aud=mem

Here is the conclusion from the ARC Hotline article about the Mira trial, 1995:

"A similar study has been reported by Kloppenburg et al (Arthritis & Rheumatism 37:629-636, 1994). Although this Dutch study was of shorter duration (26 weeks), it included patients with more severe disease than in the MIRA trial. Again, the drug was well-tolerated, but the improvement in clinical parameters was modest.

The precise mechanisms whereby minocycline may be efficacious in RA 2re unclear. Apart from the potential anti-microbial effects of this medication and the interest in Mycoplasma as a causative or contributing agent for the development of RA, minocycline has been demonstrated to be an inhibitor of metalloproteinases, including collagenases and gelatinases. Conceivably, reduction in enzymatic activity induced by minocycline might exert a beneficial effect. Other potential mechanisms of action might include inhibition of phospholipase A2, suppression of neutrophil function, and reduction in T cell proliferation.

Although these results are clearly of interest, enthusiasm for minocycline in the treatment of RA must be tempered. The patients in the MIRA trial appeared to have moderately severe disease, and many had required remittive therapy prior to inclusion in the trial. Modest responses were noted for some, but not all, parameters. Both minocycline- and placebo-treated patients showed improvement in joint swelling and tenderness, although statistically significant changes were observed in the comparison of agents. Many patients received either NSAIDs or low-dose corticosteroids during the study which may have influenced disease activity. Furthermore, the duration of response after discontinuation of treatment is unclear. Finally, longer treatment periods and comparison with disease-modifying drugs will be necessary.

Additional trials are required before minocycline can be favorably compared with, or used instead of, current second-line agents in RA."

January 16, 1995

Prepared by Paul Katz, MD, and Robert Thoburn, MD, editors.

This Hotline is provided by the American College of Rheumatology (ACR) Communications and Marketing Group as an information service for members. This Hotline does not represent a position statement of the College

There are a couple of other points that I would like to make. We've been told over and over how Doctor Brown found an micro-organism, in the synovial fluid of a woman. One woman. Nobody else could confirm his finding from the early 1940's. Here it is:

"One physician, Thomas McPherson Brown, ardently believed this to be true. Just before WWII, he isolated a microorganism, mycoplasma, from the joine fluid of a woman with RA. This finding could not be confirmed by other researchers, and so it was discounted by the scientific world."

Why if the researchers/biologists/scientists of today can find all the make-up of the fluids from RA sufferers, do they never mention micro-organisms? Is it some big conspiracy from the whole wide world? Me thinks not. Even if Doctor Brown had found a micro-organism in the fluid in one woman, could it not be a disease such as we now know to be "reactive arthritis"? A arthritis disease that is indeed cured through anti-biotics and is micro-organsm related, I believe.

Second, we are constantly told of the widespread use as was just posted:

"The studies needed for FDA approval are very costly, and since this medication is available ina generic form there is no source of funding to perform the necessary testing required for approval. Because of its widespread use, effectiveness and safety, this medication has become a commonly prescribed DMARD, particularly in patients with mild, early RA."

If that statement were true, they would not need fda approval. The world news organizations and the peoples of the world would demand that miracle cure. There is no world wide conspiracy against AP therapy because there is no scientific data showing it's effectiveness because it is not effective. It's just that simple and that's simple stuff. In fact, the American College of Rheumatology in a July 2008 updated recomendations for treatments of RA, for almost all RA treatments, does not recommend AP therapy. Only for the very mildest of the mild. Practically no recomendation worth speaking of.

LEV

Lev -

The Great Dr. Thomas MacPherson Brown was able to show one mycoplasma in 1940 without the Darkfield Microscopes invented 60 years later. Sheesh.

This is from the Great U - the little blue dashes inside the cells - that's what's making you sick.

Pip

http://www.med.umich.edu/opm/newspage/2007/microbes.htm

Pip,

I disagree with the "greatness" of Doctor Brown. He knew that the Mira trial was corrupted because he was part of it. Had the study been done today by a group of Doctors, they would probably be brought up on criminal charges and at least lose their licenses to practice and be disgraced. I was surprised to find that you actually believed that all other drugs were stopped during the Mira study rather than combined with as is the true facts. You and yours constantly post snippets of the Mira study as proof of the "great" miracles of minocin. I just took it for granted that a researcher and practicing medical practitioner such as yourself would know what you are talking about, would know the Mira study inside and out. I don't have a medical or science background so "sheesh" I'm sure I look quite ignorant at times when talking medicines or science. But, when someone starts making miraculous statements about a drug that supposedly cures my disease, I am going to find out the truth, just as I did about minocin. I didn't just go to roadback as was suggested and read only what seemed like amazing "snippets". Being me, I actually looked up the complete studies of the "amazing" snippets. Then I realized how misleading and corrupt you and yours and even roadback is. You and they have absolutely no science or medical facts to back up what they profess. I don't know how they get away with it. It seems to me that someone, some organization, some AP doctors would have to have a documented history of the results of minocin in the treatment of RA effectiveness. I still don't consider "your study" as credible, Pip. No offense. I still ask that if yous are going to continue to advocate minocin for treatment, that you quit posting ancient snippets of studies with no credibility and start posting some scientific facts or maybe those "multiple clinical trials" proving the effectiveness of minocin in the treatment of RA. You may want to send your studies to the American College of Rhumatology. They may change their treatment recommendations after seeing "your" study.

LEV

Dr. Brown was dead when MIRA came out.

Pip

Ooops, maybe Doctor Brown was great, I confused him with one of the other doctors, Trentham. Sheeesh. My ignorance shows again. Any other part I need to know that I was mistaken. Thanks for the correction of the part that I stated that was not true. My humblest apology to Dr. Brown.

LEV
Trentham is at Harvard and is working on reversing Scleroderma. He had nothing to do with MIRA. Recently (last year) Harvard refused to treat kids under 15 years old, causing parents coming in from Asia no end of heartache.

Pip

Oh, and Lev, you conveniently skipped the part about the MIRA trials used people on "moderately severe" arthritis'.

And you say it's only for mild.

Sheesh,

Pip

so minocin works better than Aleve????? i know some who just take aleve and do quite fine......and they don't have to worry about constant yeast overgrowth.....Pip-

Good point.

Mabus - yes, it works better than Aleve.

Jan, did you see where Lev supposedly showed the 'corrupted' MIRA trial? I can't find that link, can you? What I keep finding is there were there were less 'deviations in protocol' for the Mino people (109 Mino, 110 in Placebo group) and the Mino had 46 deviations and the Placebo's had 74. What bothers me is that they counted the Mino people as dropping their pain killers as a 'deviation'. Whatever. Same with the steroid injections. Only 6 in the Mino group and 17 in the Placebo group. It goes on about how the Mino people were going down in their doses but the placebo group was moving in the other direction.

Pip

Pip-

I think Scammel addresses this in the New Arthritis Breakthrough. I'd have to check

Pip,

What does it matter if it were mild or severe RA? The trial was corrupted. Even though the trial subjects were given nsaids and corticosteroids, the benifits were "modest", not much better than those given a placebo. So? Pip, I don't mind you correcting me when I'm wrong but let's not get back into trying to make a corrupted study from 1995 somehow smell good. You actually thought that the study was done without nsaids and steroids. C'mon. I can give an RA sufferer vinegar and honey, add in some nsaids and steroids and get results that show an anti-inflamatory result, right? Probably with the same results as from the Mira study. Please, pick battles that are worth it. This isn't one of them, seriously.

LEV
Lev,

I don't believe the study was corrupted. Can you please repost where you found that on the ARC? Or anywhere else? Where did you see the words 'corrupted?' Did you make that up? Why would you do that?

Pip

Yes Pip,

That was my word, corrupt. I stand by the word. Yous constantly try to tell everyone that the Mira report shows the benifits of Minocin therapy, right? Where has it ever been said, the benifits of minocin along with dmards and cotocosteroids? Even in the study they don't state that. I stand by the word corrupted. A study to show the effectiveness of minocin is just that. A study to show the effectiveness of steroids, nsaid and monocin is just that. There is no room for deceit in medical studies. You were surprised to find out that nsaids and steroids were given. Any body would be. The one study from 2006 that yous love to post is a study about the effectiveness of mtx and mtx with minocin. What if it were called a study for effectiveness of minocin and the mtx were not included. Would that be a corrupt study? Yes, it's my word and I stand by it. When have any of yous ever mentioned the Mira study and said that the study group was also given steroids and nsaids? That's deceitful. Doctor Katz stated it this way on the ACR Hotline:

Additional trials are required before minocycline can be favorably compared with, or used instead of, current second-line agents in RA."

I call it corruption when other disease modifying drugs are given that will influence the findings and nsaids and steroids will alter the outcome of anything given to ra sufferers. And hey, modest results for some? Why brag about that? If you want to show me a clinical trial with minocin and it shows good results, I will be glad to consider it.

What does it matter what I say about minocin? Whether I say for mild or moderate or severe. I have to agree with the American College of Rheumatology's recommendations for the use of minocin which is practically not recommended at all. The American College of Rheumatology used to be your bible when you could use snippets. "ACR calls Minocin Dmard for Minocin. They never recommended over other dmards but you didn't tell that. Now that the American College of Rheumatology is very clear on the recpmmendation for Minocin, yous all of a sudden seem to distance yourselfs from the ACR. Why is that? Why do you think that the ACR has just about quit even mentioning minocin? Do you think they have been paid off or do you believe that they have made the proper recommendations from based science and medical fact and their great concern for the sufferers of rheumatoid arthritis? Or, you tell me why. I didn't make up the word, but I stand by the word corrupt. tThe study was corrupted with the use of nsaids and steroids, period.

LEV

Will repost for newbies.I'm sure all the newbies thank you... they haven't been properly indoctrinated until they've read a Pip/lev thread.

babs-

I have no idea what you are talking about.

bump for the newbiePlease, for all those pursuing AP with success will you at least give everyone the heads up?

For me AP has been a total success and I didn't/haven't had to deal with the possible side effects. If AP works for some and other drug regimens work for others can't we all just be glad for all?

I do like the exchange of information and ideas on the board but it isn't necessary to be argumentative, etc.

On a recent post of mine there are some who thought I was bashing other arthritis drugs. It certainly wasn't my intent and " I APOLOGIZE!"
The discussion following my post was a good one.

As stated, it works best for MILD and early RA. It is not prescribed by many doctors, or why else do people have to travel to other states for treatment.

I happy when anyone does well, I am not happy when people use stupid, bad marketing tactics to "reel" them in. After all if it really worked, you wouldn't have to constantly promote it. If it really worked, it would be main stream after over 50 years, right?[QUOTE=Bird Girrl]As stated, it works best for MILD and early RA. It is not prescribed by many doctors, or why else do people have to travel to other states for treatment.

I happy when anyone does well, I am not happy when people use stupid, bad marketing tactics to "reel" them in. After all if it really worked, you wouldn't have to constantly promote it. If it really worked, it would be main stream after over 50 years, right?[/QUOTE]

You are 100% right! Here is proof that the study WAS corrupted. I think you AP-ers need to read the whole article and not just what you want.

To participate in the trial, patients had to meet established criteria for rheumatoid arthritis and have six or more swollen joints and nine or more tender or painful joints. All study participants taking nonsteroidal anti-inflammatory drugs and/or low doses of oral steroids such as prednisone prior to the study could continue taking these drugs. If patients were taking any of the so-called disease-modifying antirheumatic drugs (such as gold, hydroxychloroquine, methotrexate, or sulfasalazine) or intravenous steroids, they were taken off these drugs for at least 4 weeks before starting to take minocycline.

Here is the link to where I found this information:

http://www.niams.nih.gov/News_and_Events/Press_Releases/1995/01_14.asp

I like her point about the cost of testing.GOod book.For newbie 41eeannFor newbies.Jan thank you for this I was looking for this thread but must have passed it over.To All Forum Members, New and Old,

Always take your medical advice from books and those without medical degrees and/or clinical trials to back up the statements they make. Afterall, you can have almost any human joint that gets destroyed by ra, replaced with a brand new manufactured joint. Keep in mind that there is a worldwide conspiracy by the medical industry to keep you from the truth.

Disclaimer: My medical advise is for entertainment purposes and to make money on my book only and should not be taken as medical advice. Always check with a medical professional before starting or changing therapies. This disclaimer keeps me free from all liablities, civil or criminal.

LEV

Living With Rheumatoid Arthritis is a very highly regarded book.

Jan,

With all due respect, who is it highly regarded by? Does the American College of Rheumatology ever reference to it?

LEV

[QUOTE=levlarry]Disclaimer: My medical advise is for entertainment purposes and to make money on my book only and should not be taken as medical advice. Always check with a medical professional before starting or changing therapies. This disclaimer keeps me free from all liablities, civil or criminal. No, compulsive questioner, I have no contract with Johns Hopkins Press, the publisher.Frankly, I see no questions being asked asked so no possible answer can be forthcoming by simply bumping this, or any other "old" topic compulsively.

Oh, well, whatever floats you boat...I still find LevLarry's comment spot on and conclusive.
Good book.Person opinion? As someone else once said in another topic, this incessant bumping has the look of an agenda. You like the book, good for you. You find the book to be worthwhile, good for you. But the question still remains why you find it necessary to compulsively bring "old posts" to the topic without an examination of the contents of either the post or a detailed appraisal of the contents.

Provide us with an in-depth assessment of WHY you are bumping this post-why is the information either necessary or important for newbies? Why is this a "good book"?

I too ask questions and would appreciate a comprehensive review of this book, or any other, rather than the incessant bumps for mere attention.
Incessant criticism has an agenda,Absolutely. However, that begs the request for an indepth review of the book you so highly regard. [QUOTE=Jan Lucinda]Incessant criticism has an agenda,[/QUOTE]

As does incessant avoidance. When you view questions as criticism and refuse to answer, it makes people think that you are afraid of the truth.............

if you want to push a book .. put it in your signature line........ title the book(s) there...

unless you DO have an agenda of irritating everyone here....because that's pretty much what this does..Which is exactly what she wants, to irritate everyone, she does this in every post she makes, if she bumps it dont click on it, said by me as I answer this post for the last time.

It is a good book - I like the opening paragraphs of the medications section when it talks about "More Agressive Approaches to Therapy" and "The Future" I won't type the full paragraphs, but a few key sentences. I don't believe posting these only will take anything out of context - but if so, feel free to let me know.

"DMARD's and biologics appear to be the most effective in preventing damage, if they are used early"

"In late 1998, we took a giant step into the future treatment of rheumatoid arthritis. After years of research, the first biologic drug, Enbrel was made available to people with RA. This drug is the first of a new class of drugs called biologic response modifers. The future will clearly bring efforts to identify the pivotal component of the immune system that has gone awry in RA and correct it. This may involve the use of a single biologic drug or the use of a combination of more than one agent"

"The challenge today is to determine how early in the course of RA we should use our most powerful new biologic response modifiers"

[QUOTE=Dalmatinka] Here is proof that the study WAS corrupted. I think you AP-ers need to read the whole article and not just what you want.

[/QUOTE]

Can you please explain specifically how the study was corrupted. Guess I'm not catching that part.

It was corrupted because participants were taking NSAIDS and prednisone along with the minocycline as is very clearly highlighted in the quote, open your eyes and READ!

What was actually working for these patients, the NSAIDS, the mino, or the prednisone????

This is why it is corrupted. You dont know if it is actually the mino that is working.

In the book, "the New Arthritis Breakthrough" by Henry Scammell, they have a biostatistician who says the breaches of protocol were allowing the Mino people to REDUCE their meds. Non-Mino peoples breaches of protocol were to INCREASE their meds.

Pip

[QUOTE=Dalmatinka]

It was corrupted because participants were taking NSAIDS and prednisone along with the minocycline as is very clearly highlighted in the quote, open your eyes and READ!

What was actually working for these patients, the NSAIDS, the mino, or the prednisone????

This is why it is corrupted. You dont know if it is actually the mino that is working.

[/QUOTE]

exactly, Maria....

PIP reads what she wants to see....... but no one else can see it...we aren't special ....

[QUOTE=babs10][QUOTE=Dalmatinka]

It was corrupted because participants were taking NSAIDS and prednisone along with the minocycline as is very clearly highlighted in the quote, open your eyes and READ!

What was actually working for these patients, the NSAIDS, the mino, or the prednisone????

This is why it is corrupted. You dont know if it is actually the mino that is working.

[/QUOTE]

exactly, Maria....

PIP reads what she wants to see....... but no one else can see it...we aren't special ....

[/QUOTE]

So true Babs, we arent smart enough, we are failures because AP didnt work and we choose to go the traditional route, HOW DARE WE??????

[QUOTE=Pip!]

Pip

[/QUOTE]

Pip-

Good point.

Living with Rheumatoid Arthritis by Dr. Shlotzhauer covers the DMARDS and biologics up to 2003. This is the segment she wrote on Antibiotic Protocol, Minocin, information for the newcomer. It is published by Johns Hopkins Press.Here is some real good FREE information titled "Living With Rheumatoid Arthritis":

Rheumatoid Arthritis-Living With Rheumatoid Arthritis

LEV

2003??? [QUOTE=LinB]2003???[/QUOTE]

Well, there was an Antiques Road Show thread this week, so it kinda fitsam I correct in saying that biologics have only been available for the last decade?... so, this book covers only the beginnings of their use.... and most like misses the successes and positives that incur with biologic medications.......

wow...

Enbrel and Remicade were approved in 1998; Humira in 2002. ok.. so with the advances made.. can we assume that this book is out dated and a poor source of RA medications? [QUOTE=babs10]ok.. so with the advances made.. can we assume that this book is out dated and a poor source of RA medications? [/QUOTE]

Probably with regards to the newer biologicals. It may have some relevant information about older therapies, though. I've not read it.
The book is dated even as regards the older biologicals. It would benefit by a thorough revision. Although the information in the book might be an adequate starting place for someone newly diagnosed, there are internet sources that present a current account of RA drugs. Jan Lucinda,

What information(s) of the book do you think are so important to us rheumatoid arthritis sufferers? I'm not being mean or nasty but I am not going to read the book so thought that you could give the highlites.

LEV

Larry

the book is actually a fairly well written introductory book on RA. It covers everything from diagnosis to treatments to alternatives. It has sections on exercise and diet as well as surguries. The section on minocycline is 3 pages long with 1 1/2 pages discussing side effects. The authors devote no more time to it than any other medication. They discuss the infectious theory only briefly.

As its most recent update was in 2003, originally written in 1993. I have the 1993 copy and the 2003 version is 70 pages longer with vastly expanded medication and complimentary med sections added.

Buckeye,

So anything that should be posted here that would be of new information to us ra sufferers?

LEV

it i not ikely to be new information to anyone who has been diagnosed for a while. For a newbie it might be worth a look

I agree, it's probably not new information for anyone dx for awhile, but I found it very helpful when first diagnosed. It gave me some good basic information about the disease from A to Z. [QUOTE=buckeye]Larry

As its most recent update was in 2003, originally written in 1993. I have the 1993 copy and the 2003 version is 70 pages longer with vastly expanded medication and complimentary med sections added.

[/QUOTE]

Yes, BUckeye, it is a well written book.

[QUOTE=Jan Lucinda]

Yes, BUckeye, it is a well written book.

[/QUOTE]

True, Jan... but it's old information.

THe saying, If it ain't broke, don't fix it applies for APers.Ok, I have to say this. It might be old information, but alot of old information still applies to RA. There are many advances, that, if not for some of the older info to build off of, wouldn't have been accomplished. Much of the info out there on TNF inhibitors(biologics)or DMARDs could be considered old information, but that doesn't make it irrelevant . When I was first diagnosed, I read everything I could get my hands on. perhaps that is the case, for APers... but she's missing SIX years of information on all aspects of RA treatments.. That isn't "okay" for me and others.... that means it IS broken.

I have a feeling that some think this is a book that goes into detail on AP therapy. It doesn't. I don't think antibiotic therapy is even in the book, other than 2 pages on Mino and that's in the DMARD section as a mild med for early RA. It's just an overall book on RA - 275 pages, with 2 pages on mino and the other 270+ pages are on medications (with a push for early, aggressive treatment) exercises, coping skills, fatigue, general info on RA and it's progression, nutrition, etc.

When I was first diagnosed, I went to Barnes and Noble and there were only 2 or 3 books on RA and this was one of them. I felt as a newbie it gave some good, basic information and would still recommend it. To tell you the truth, I'm not sure why Jan kept popping it back up. Anyone that read it wouldn't think it was a great find for APers and something to shout about. Just my opinion.

Agreed, CathyMN... I know it's not about AP..... I also know it's old info.. I also have the book.. among about 6-8 others I've purchased since DX'ed again.

Six years of testing, research, etc.. makes for a huge void when it comes to being informed near the cutting edge of what is available.

when I was first diagnosed all we had were the books...the internet wasn't available. Even a just published book coud be missing new information but we did what we could. Now with the internet the reliance on the books for medication information is not as needed as it used to be. So use the well written books to learn about RA and other non medication ways of dealing with the disease. Yeah some newer information may not be represented but much of it is just remember as you are reading that what you are reading may have been displaced by newer research.

Never rely on just one research avenue to learn and everyone will be able to achieve a better picture of things

This is information on AP for the newcomer. If you've seen it, you can ignore it.Info on AP for the newcomer. If you've seen it, you can ignore it.This is some information on Antibiotic Protocol by Dr. Schlotzhauer, published by Johns Hopkins Press. She also says regarding side effects that minocycline has very few side effects compared to other DMARDs.Why do some of you keep reminding us how old the information is; it isn't relevant. If you are researching you should start at the beginning & work your way into present day ....

There is a lot of good information out there, some relevant and some outdated, but good information & background nevertheless. Any information you can get in the beginning if your quest to find out about any disease is definately relevant, whether it be old or new information...

Some of you seem to be presuming that because a person is newly diagnosed with a disease (in this case RA) that they have forgotten how to research things. I give them more credit than that, for example, If you are researching Psychology you will have to go back to Freud and work your way forward, in fact at the close of the 20th century, advances in the field of neurology began to show evidence for many of his theories.

This premise applies to any research.

Sometimes theories from the past are proven to have value in the present day, so you cannot summarily discount them because they happen to have been published a while ago.