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  • #467867
    Maz
    Keymaster

    Glad something might have helped. Please post again if you happen to read Ebringer’s book and let us know what you think of it. Wishing you all the best in your researches, and finding the ideal treatment approach
    for you.

    PS there was a poster here with user ID Dragonslayer who used to share info on Ebringer as he also researched the ankylosing spondylitis and K. Pneumoniae connection. If you run a search for his old posts you might find some interesting reading material.

    #467865
    Maz
    Keymaster

    Hi Netterdun,

    Professor Alan Ebringer (Middlesex Hospital, England) has extensively studied P. Mirabilis and the UTI/RA connection. You’ll find some of his research on this site in the RA Research section. He’s written a book on this very topic, called “Rheumatoid Arthritis and Proteus,” which likely describes his recommendations for treatment, though I haven’t yet read this book (available on kindle).

    My fellow patient thought is that treatment might benefit the addition of biofilm, urinary pH/diet protocols and gut healing support protocols.

    At one time, years ago, I read quite a bit about his work and, from memory, I recall that his belief is that P. Mirabilis sets the stage for a cross-reaction, called molecular mimicry, whereby in its chronic state, the microbe’s proteins confuse the immune system, creating anti-CCP autoantibodies that trigger and perpetuate the attack on cartilage.

    I can’t recall any specific protocol but my guess is that it would involve a combination approach, similar to the C. Pneumoniae or K. Pneumoniae Protocols?

    #467861
    Maz
    Keymaster

    The first few months/first year of dealing with acute onset rheumatic disease is very, very difficult. It’s completely understandable how you’re feeling about all the unknowns in the early days, added to all the concerns of how life-altering this can be for everyone in the family, not least the person affected. You sound like an amazing mama bear, so hang in there. Waiting for test results and hopefully answers can be nail-biting! Your new doc sounds experienced and will hopefully be able to answer all your questions as they arrive. Just so you’re aware, this is just a patient-peer group so we can’t answer how your daughter may respond to treatment – really all we can share is personal experience and perspectives so nothing here should be regarded as medical advice.

    In the meantime, while waiting for tests to return, do what you can to get as informed as possible in the quieter moments (but also make sure you get rest so you can remain centered and healthy). If you can manage this, you will be a strong advocate – knowledge in this sense is power. To start, you can wade through info on this site (and others you might find helpful). There are patient JRA/JIA stories, research, FAQs, and more. The last FAQ section provides info on what WB antibody bands mean. It is an indirect test (I.e., provides info on how well a person’s immune system is “seeing” the infection and responding). It’s imperfect in this sense (variables like strength of individual immunity can abrogate results such as if something might have suppressed immune response) and it’s quite an old test that was originally intended for epidemiological purposes. In my case, I had 2 bulls-eyes, which are clinically definitive signs, but tested negative on standard two-tiered testing.

    Other Important Questions

    I think you’ll find reasonable answers to the questions you have in the FAQ section and they are good to refer back to, as reminders, I find.

    This forum is very quiet these days and it may take time for others to read and respond but there are old-timers who check occasionally who will be able to share personal experiences that might help. If you run searches on old posts, you will find other parents who have travelled the same road that you can read about and possibly contact. One Mom who immediately comes to mind had the user ID, Evalon. She also posted her daughter’s story on the website stories section.

    Wishing you the very best, lulusca, and hoping you get some more definitive answers from testing very soon.

    #467841
    Maz
    Keymaster

    Hi Brian,

    Have PM’d you a few lists to check out. All the best in your search for your Mom!

    #467838
    Maz
    Keymaster

    Okay, give me a few mins and I’ll PM you the info. Sorry you had tech difficulties – it happens occasionally, which is why I checked.

    #467836
    Maz
    Keymaster

    Hi Carey,

    Were you able to receive the lists you wanted by using the automated Doctor Search page? If so, and you had trouble with the system, will send you the lists via the PM system.

    Click here to find the Doctor Search

    #467821
    Maz
    Keymaster

    First, great news you’ve got your RA back to behaving! Covid certainly has a lot to answer for! So many case reports have emerged of the infection and autoimmunity, not to mention reactivation of other latent infections (e.g. h. zoster and shingles).

    Well done getting onto the rashes as quickly as you did in order to rule out stuff. Hopefully, the dermatologist will have some insights when you go in for stitches removal and you can ask any burning questions. Of course, the itchy rashes could be due to any number of things from candida to dermatitis, etc., so here’s to hoping you get to the bottom of this, Whaleharbor!!!

    #467816
    Maz
    Keymaster

    Hi Aynur! So lovely of you to take the time to pop by with an update. It’s so good to hear you are still doing so well and I’m sure that anyone new here with scleroderma will appreciate this update very much. Do hope you manage to figure out your prescription there!

    For anyone interested in reading Aynur’s story, click here:

    Aynur’s Scleroderma Story

    #467811
    Maz
    Keymaster

    Hi Ellie,

    I’ve had similar questions as you have – Lyme is such a complex and mystifying infection, for sure. If you take a look at study #s 1 and 5 at the following link, you should find these intriguing, if not a complete answer, as the first is a small study and the 5th one is in a mouse (albeit mammalian) model. These are in the RA Research section of the site:

    Research RA/Lyme

    #467809
    Maz
    Keymaster

    Hi there! Have sent you the requested lists via the forum PM system.

    Best wishes

    #467802
    Maz
    Keymaster

    Hi Ellie, will send you a PM shortly.

    #467801
    Maz
    Keymaster

    Hi Buddy,

    My main confusion is whether to start AP without having a formal diagnosis yet.

    If you have a copy of The New Arthritis Breakthrough, this question is addressed by Dr. Brown. He mostly saw rheumatic patients who had run the gamut of available treatments at that time, and who were needing new vision. His expert opinion, after treating over 10,000 rheumatics, was outlined in chapter 12 of this book, entitled, “The Case for Early Detection and Treatment.” You can get the book on audible, I believe, if you’re not an avid reader.

    Anxiety is very normal when facing all this stuff in the early days. So, above all, be kind to yourself. It’s a learning curve and within a few months, you will be quite an expert, most likely offering tips to others just starting out.

    You might also find it worthwhile looking at the LLMD list for UK, as well, as experienced ones will automatically run infection testing. Sometimes, it requires a team to figure things out. Integrative docs can be helpful in terms of looking holistically at the picture, able to offer supportive therapies to protect/heal the gut and aid digestion, help with diet, detox, nutrients, hormones, etc.

    #467798
    Maz
    Keymaster

    Hi Buddy,

    Are you experiencing any symptoms in addition to positive labs?

    As we are all patients here, we can pretty much equate with how concerned you must feel. It’s great that you’ve done your homework first – have you had a chance to also read the Scammell books? I found them great for understanding Brown’s mechanistic approach as well as heartening to read the patients stories.

    There have been posters from the UK in the past but nobody visiting recently – you might find other Brits on FB. If you type in “UK” or “England” in the forum search box, you should find those from the past.

    Have you located the Doctor Search page on this site yet? Altho the lists are old (patient feedback is slim on the ground), you may find one to help if your private rheumy doesn’t work out. It’s possible he/she will, however, so keep the faith. You can always print out the Physician Packet (daily protocol) to take, as well as pertinent research listed under SD in the Research section.

    As for infection lab testing, you could try calling the listed UK labs and asking for testing kits to take with you to your appt. I’m unclear regards how that works in England these days, but there is a Lyme clinic in London, I believe who might be able to direct you to resources. Some in UK send their samples to Armin Labs in Germany, and you should be able to request a testing kit with requisition slip from their website.

    Please let us know how you get on, Buddy, and all the best!

    #467781
    Maz
    Keymaster

    Reminder bump

    #467743
    Maz
    Keymaster

    Hi Heidi,

    I think we can all appreciate wishing for that “off-switch!” Sorry to hear you’re having a rough go. Sixth months in is a reasonable time to reassess. We are just patients here so can’t offer medical advice per-se….just some ideas based on personal experiences and what is known about Dr. Brown’s approach and the research.

    Quick question: do you have any recent labs (SED, CRP, RF and anti-CCP) to compare with when you started AP? As Dr. Brown described in the book, sometimes symptoms improve before labs, but also vice-versa. It can be heartening to note labs improving when symptoms are lagging.

    I also started out on the daily protocol, but quickly found it was too much and did much better on 200mg BID M-W-F. The days off allowed hypersensitivity to settle. Brown describes this in his hypersensitivity presentation in the Resources section here (see text in bold in article):

    Presentation by Thomas McPherson Brown, M.D., “Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis

    Another idea to consider: have you been taking the same generic brand since starting? Some folk have found that switching can resolve things.

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