Home Forums General Discussion M-W-F or Daily?

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  • #307666
    Rosey UK
    Participant

    Hello,
    It seems like the modern protocol for the AP is 100mg twice a day now? Is this because they know more or the bacteria’s worse or more of, or are some people still sticking to M-W-F protocol and getting the same results?
    I’m just waiting for the go ahead from the rheumatologist to get back onto minocycline now that my liver is back to normal. What dose should I say I will take?

    Rosemary πŸ™„

    #369036
    lynnie_sydney
    Participant

    Hi Rosey
    There has been plenty of discussion recently about why the MWF regime is called the ‘historical protocol’ and why daily dosing is sometimes thought of as more current because of the Mira trials. That doesn’t mean that the MWF regime is out of date and, indeed, it is sometimes more appropriate especially for those with inflammatory rheumatoid disease manifestations.
    This thread (link to it below) and particularly the post by Maz gives a fuller explanation of these differences:

    viewtopic.php?f=1&t=9356&p=68883&hilit=historical+protocol#p68883

    There is plenty more recent discussion on the topic. If you go to first page of General Discussion (where topics are all listed) and type ‘historical protocol’ into the search box, you can look through the various posts

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #369037
    JohnnyMax
    Participant

    @Rosey UK wrote:

    Hello,
    It seems like the modern protocol for the AP is 100mg twice a day now? Is this because they know more or the bacteria’s worse or more of, or are some people still sticking to M-W-F protocol and getting the same results?
    I’m just waiting for the go ahead from the rheumatologist to get back onto minocycline now that my liver is back to normal. What dose should I say I will take?

    Rosemary πŸ™„

    Rosey,

    I asked the same exact question not long ago. On one hand we had Brown who had 50 yrs experience with AP, then comes along Trenthham and he revamps it, from slow and easy to hard and fast. Kind of confusing, which is right? Brown used to piggyback different antibiotics in tandem at times to stir things up, since Trentham did not have the option to do this he made up for it by a more aggressive use of one antibiotic. Both seem to achieve the same end results, it just seems Brown was as concerned for the comfort of his patients and herxing than Trentham was. After all Trentham only had a certain period of time to demonstrate whether AP worked or not, not years as Brown.

    John

    #369038
    lynnie_sydney
    Participant

    Rosey, all

    This could be a good time to re-post this – a forum contribution from Henry Scammell that dates back to 2005. He mentions infectious theory, Dr Trentham’s work and also provides a link to the main site about Brown’s rationale for lower, intermittent dosing in inflammatory forms of arthrides – which excludes the forms of Scleroderma that dont encompass an inflammatory component.

    this is an old post of Henry Scammell (yes that Henry!) that I found from 2005 and posted a while back. It includes some reflections on herxing and the differences (for those who accept the infectious theory) between people who have RA and SD.

    Why Dr Brown was a Lumper Posted by Henry Scammell on Sun – Aug 14 – 5:40pm: 2005

    Tom Brown was a lumper, not because of the politics of the time or arbitrarily, but solely because he saw thousands of patients getting better on antibiotic therapy and he figured they were all improving for the same set of reasons. But the recent exchange on this topic contains a couple of misaprehensions. The concept of lumpers/splitters is particular to RA, and does not include the other connective tissue diseases such as lupus, fibromyalgia, scleroderma, etc. – although certainly Brown recognized that they all had a lot in common, especially their responsiveness to antibiotic therapy. Lumpers use the term rheumatoid arthritis generically to include all the inflammatory forms of arthritis (I think there are 106.) The rationale for this is simply that rheumatoid means inflammatory. Because Brown was virtually alone in using antibiotics for any of those forms of arthritis or for the other connective tissue diseases up to the time of his death, in those days whether a rheumatologist was a lumper or splitter had nothing to do with the AP or the infectious theory. In fact, lumpers and splitters alike held Brown, the theory and the treatment in low regard and often in contempt.
    Today the question of lumpers vs splitters has become even more politicized because it has obvious implications for the infectious theory and, to a lesser extent, the efficacy of the AP. Some 17 years after Tom’s death, the theory remains unproven. More happily, the AP has been accepted for use in RA (splitter’s definition) by the USP and the Arthritis Foundation – although it has NOT been approved for most of the other 105 inflammatory forms of arthritis. So today more than ever,the distinction is a critical one. If your doctor is a lumper and he believes the USP or the Arthritis Foundation,chances are good that he’ll treat whatever form you have with minocycline (which was available in Tom Brown’s time, by the way, and which he used – we refered to it as tetracycline because that’s what it is.)
    An apparent subsidiary to this issue is the JH reaction – doctors who doubt or reject the infectious theory obviously don’t believe their RA patients ever herx on the AP. Conversely, most doctors who do believe in the theory believe they can tell the difference between the JH reaction and a conventional flare. As for scleroderma, it’s not inflammatory, so obviously the herx, if there is one, would not present in the same way as in RA. I don’t know how a scleroderma patient would know whether he has ever had a JH reaction, or how he could be sure that he has not.
    Some years ago, about halfway between the time we wrote The Road Back and today, I updated our effort with The New Arthritis Breakthrough. As anyone who has read that book knows, it owes much to the helpfulness, insights, courage and cooperation of David Trentham . When we sat down to discuss that update, David commented that it was unusual that in the several years since Tom’s death, not a single statement in The Road Back had been proven wrong or false. We both knew we had leagues to go before the day when it could all be proven true.
    One last thought on the recent exchange: I don’t know how many of the RBF board believe in the JH reaction, and although I assume it is most or all of them, I could care less. As a loyalty test for supporters of the infectious theory, it’s meaningless.
    Okay – yet another last thought:it’s wonderful that RBF has so many good people who are willing to share their knowledge and experience and love of their fellow man, especially in the forum of this lively bulletin board. We now get something like 45 MILLION page hits a year on this site,and I’m certain most of those visitors look in on this running dialogue. Many, many thanks for all you do – whether you agree with each other or not. Keep on sharing. And keep on loving.

    Also, on our main site, there is this statement:

    https://www.roadback.org/index.cfm/fusea … id/91.html

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #369039
    Rosey UK
    Participant

    Hi Lynnie,
    Just read the Henry Scammell letter you put on here. It was smashing reading from the man himself.
    Thank you soooo much for that Lynnie. It was brilliant!!
    Rosemary
    πŸ˜€ πŸ˜€ πŸ˜€

    #369040
    richie
    Participant

    Hi -IT -was Trentham who used 200 mg daily for scleroderma with amazing results –MIRA was run by Odell of Nebraska with Trentham as investigator along with Alarcon of U of Alabama and others —-While Trentham did contribute to the use of minocycline in treating RA -he also used other meds –while for scleroderma he only used minocycline and strongly emphasized the use of the pelleted brand and if an insurance company turned down the use of the brand he would write a very eloquent letter detailing why the brand was necessary for treating diffuse scleroderma –He really left his mark in treating scleroderma –as results in MIRA and the use of minocycline in treating RA was only about 62% effective –Surprisingly he had once mentioned to me the many folks with psoriatic arthritis were being helped with Doxycycline


    Johnny MAX was correct in that Trentham really didnt believe in a person having a herx and was very reluctant to use pain killers –I think
    the furthest he went was to prexcribe ALeve or a stronger dose of naprosyn —

    #369041
    PhilC
    Participant

    Hi Rosemary,

    I always tell the doctor to write the prescription for a typical or standard dose, even if I am not planning to take that dose. The rationale behind this approach is that an atypical or nonstandard dose is more likely to attract unwanted scrutiny. Doing it this way also saves me money.

    This message that I posted last year may be helpful:
    Minocycline prescription tip

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

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