Home Forums General Discussion Fighting Strep/ reliable Toronto AP docs?

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  • #463074
    monmar
    Participant

    Can anyone here recommend the antibiotics they used in their protocol to fight strep? Currently on penicillin and finding it is having very minimal benefits. Mino stopped working for me 8 months in (numbers started to rise again). I was on the TEVA brand. I’m ANA + (1:320), RF negative, HLA-B27 negative, ANTI double stranded DNA negative, ANTI-CCP negative, ENA negative.
    Current doctor doesn’t know much about AP therapy, looking for anyone who may know of a reliable AP doctor in Toronto area. Really need the help, stuck in bed, swollen in all joints 🙁

    Thank you in advance!

    #463077
    Maz
    Keymaster

    Monmar, really sorry to hear you’re struggling after such a hopeful start. The upside is that you’ve learned of the strep involvement in joint fluid, which may account for why the mino is not having much effect at the moment. Brown was clear about treating strep, if it was found.

    Hoping others will chime in when they see your post to share what helped with their strep treatment. Brown used ampicillin in his day, but nowadays, folks are able to stay on the mino for its wonderful DMARD effects (anti-collagenase properties that help block the enzyme that causes joint erosion) and can then add in a second antibiotic to treat strep, like azithromycin, which is compatible with minocycline. Azithromycin has a long half life, so not as much is needed as with penicillin. Treating the strep as a cause of rheumatoid disease is a long old process – can take months to years to bring titers down because it is one of those low-grade, chronic infections that lives in hard-to-reach colonies (as described in Scammell book). It’s hard for antibiotics to penetrate swollen, inflamed joints, so sometimes AP docs will use low dose cortisone to help reduce the inflammatory barrier so that can enable the antibiotic to do its work more effectively in those deep tissues.

    Can’t recall, off hand, if Brown talked about actual dosing for strep in the book, but you might find other useful info there. Also, not forgetting that he did recommend IV clindamycin in a series to help give a boost to oral antibiotic therapy and also at intervals. Clindamycin, in one study, was found to reach the joints within an hour of administration.

    Penetration of lincomycin (‘Lincocin’) and clindamycin (‘Dalacin’) into the synovial cavity in rheumatoid arthritis. Curr Med Res Opin. 1972;1(2):108-15.

    In a study of 18 rheumatoid arthritis patients, treated with either lincomycin or clindamycin, minimal inhibitory synovial fluid concentration of the antibiotics were achieved within one hour.

    So, those are a couple AP options you could talk about with the doc – IV clindamycin as per Brown’s approach (found here in IV clindamycin section) and also to ask about adding azithromycin to the mino in a pulsed fashion, in-between intermittent rounds of IVs.

    Were you able to get any testing run to rule out any chance of DILE? While it’s good that you’re anti DS-DNA is negative (real lupus marker), it can help to diagnose DILE if anti-histone ABs are present and also running the anti SS-DNA. Was there a homogenous pattern with your positive ANA?

    Re: docs – was the doc in Cambridge a no-go? Also, did you try the Lyme doc in Plattsburg?

    Hang in there – might take a few days for others to read and reply to your post as it’s been quiet around here lately.

    #463078
    monmar
    Participant

    Hi Maz,

    Thank you for taking the time to reply to this post! Super helpful having everything written out. From what I’ve read, and I’ve read it multiple times, there is no dosing for it in the book, unfortunately. What is DILE? I think I missed that from our previous conversation. Yes there was a homogenous pattern in my ANA results! What does that mean? I’ve tried to understand that myself but no go!

    I called for Cambridge and no answer – on Holidays for 2 weeks. I will try again soon. I want to try all my options here in Toronto first before trying the states! But definitely on my list to try 🙂

    Thanks so much Maz!

    #463081
    Maz
    Keymaster

    Hi Monica,

    “DILE” is drug-induced lupus erythematosus – you can read about it here (FAQ #17). It’s rare, but can occur in some instances with chronic use of a medication that can cause it and in those who are predisposed. So, when someone experiences sudden worsening, it’s just worth testing for it to ensure it’s not a drug reaction. If it is DILE, then one has to stop the medication. I think you had mentioned before, though, that you stopped minocycline to start the penicillin (?), so it’s likely a bit too late to test accurately for DILE. Also, if it had been DILE while on mino, you’d have noticed significant improvement in symptoms within a week or so of stopping it.

    It’s also possible, with the change in antibiotic (from mino to penicillin) that you’re herxing and the dosage may need adjusting? In these instances, it can provide a little insight for the doc to run routine labs run to recheck disease markers. Initially, with herxing, disease markers can worsen, but then usually begin to improve 2-3 months later in increments, over time, as herxing settles down.

    I hope you can find help with one of the more local AP docs in and around Toronto. It sure would save you traveling. There are some others who come to this forum from Ontario, so you can keep bumping this discussion thread up, if you want until someone near you sees it and can share what they’re doing for docs. Fingers crossed for you, Monmar! If not, and travel is an option, ultimately, we can definitively brainstorm experienced AP doc options. Even one visit to one of these may enable your present doc an opening to consult with them for your further treatment locally.

    #463084
    monmar
    Participant

    Hi Maz!

    Thank you for explaining that for me, helps a lot! Yes, I’m doing routine labs to check the markers. I have noticed that there is some decrease in pain upon waking and my right knee is starting to look a lot more boney, which means the inflammation is starting to go down. Hands are also feeling better, more grip strength and less pain! Going to do blood tests this weekend to determine the numbers! However, the progress is slow, only been on penicillin for 6 weeks now. Hoping to get IV clindamycin soon.

    Thank you for all your wonderful knowledge! So helpful 🙂

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