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Hi Owen,
Have sent you a PM as promised. All the best in your search for the ideal doc for you. Feel free to post any questions as you go, bearing in mind this old forum moves at a slower-pace.
Hi Owen,
Thanks for your intro and welcome. Happy to send you the list in a PM for CO and will check back in the morning to see if you’ve replied to let us know which other states you think you might be able to travel to before I put these together for you.
That’s great news, Whaleharbor! Weird blips like this can happen (transient), as you say, and, unless there is a distinct trend over time and symptoms evolve, prob nothing to get concerned about. 😀 Btw, way to get your last flare under control!!!
Hi Whaleharbor,
Try not to be worried – easy to say, I know, but labs can vary between blood draws and between labs.
Minocycline was shown to lower IgM rheumatoid factor (see study following) – the autoantibody specific to RA, other autoimmune diseases and even some infections – but I’m unsure if it would lower IgM antibody counts in general. For the most part, folks here have reported fewer colds, etc., while taking it, which might suggest it’s immune-supportive effects.
Just a few vague fellow patient ideas to ask your doc, but some infections may be immune-suppressive, reducing immune function and ability to respond to infections (but so can things like anemia or hypothyroidism).
Do you know why your doc ordered IgM? Are getting more infections lately?
Hi Mya, welcome here. Hopefully someone with SD will chime in soon for you! Meantime, if you type key words into the search box at the top of the forum, such as scleroderma and itching, you’ll find a number of past discussion threads describing patient experiences of this occurring. If you have trouble finding things, just let us know.
I was told by the rheumatologist that minocycline and plaquenil do not prevent joint damage but help with inflammation.
Hi TG,
Tetracyclines have numerous properties in addition to their anti-microbial ones. One of these properties is that they have anti-collagenase effects. Collagenase is the enzyme that breaks down joints in RA. The following research describes this but there is a plethora more if you want to research further. This property is one reason why dentists use this class of abx in periodontitis; to prevent breakdown of soft tissues and bone in dental decay and why it’s been classed as a DMARD by the ACR for RA.
Tetracyclines inhibit human synovial collagenase in vivo and in vitroo
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.
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?
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.
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.
