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  • #305224
    motherbear
    Participant

    Hi everyone,

    just a quick and rather silly couple of questions I suspect.

    If my son stayed on 100mg of Doxy on M,W, and Friday forever would the desired effect still happen over time?

    In relation to AP what is the max dose of Doxy to be taken?

    Caroline.

    #354743
    Trudi
    Participant

    Hi Caroline–
    I am on 100mg doxy MWF right now. I asked my pharmacist what he thought when I reduced some other antibiotics awhile back–he said it would just take longer to get well (on smaller doses).
    I’ve thought of you and your son often, especially when I read that he has been having more pain again–darn!!!! Haven’t had much chance to post much–trouble doing the stairs right now 🙁 .
    I hope he will feel better soon on the reduced dose —
    Take care,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #354744
    aynurrzepa
    Participant

    Hi Caroline,

    As much as I understand, small doses of abx is the key and essense to AP. It wouldn’t work and/or would make you feel much worse if the dose was higher. So, some people have to start slowly and increase gradually until they achieved the recommended AP dose of abx, in order to avoid major herxing or hypersensitivity issues.

    AP works with small doses, not bigger doses. it’s a long term treatment and completely differrent rules apply…

    I hope I could help. if you search in protocols on the RB website, you will get a lot more info, as well.

    #354748
    Valsmum
    Participant

    I agree with Aynur, and those that go by”low and slow”. I can’t tell you how painful it was for me to take 100mg minocycline and I have a fairly new case of RA. I had to start out at 50mg just Monday and Friday, after 4 months I can finally take 100mg. Just the other day I wanted to see what would happen if I added another 100mg on a Tuesday, bad idea, I am still in pain and it’s Sunday. I can tell the diffrence now between herxing and my good ol’ arthritis. The herxing makes my back really hot and tingly, and painful, it seems to affect my chest too and I have more inflammation in my chest on those days.
    So I have no choice but to be very patient and just take it low and slow, otherwise it seems there is more inflammation, which is not good thing.
    Have you joined Kickas.org?
    I hope your son does better soon! Take care, Sheri

    #354745
    motherbear
    Participant

    Hi Guys,

    thanks so much for all your responses.
    I have been investigating in my own mind what is going on with him.
    Is is a herx?
    Is he hypersensitive?
    Is it a flare?
    It is good to know that his AP will work even if we don’t increase the dose.

    I have now come to the conclusion that he is hypersensitive to the increase and I am going to pull his dose back to the original.
    I won’t increase him at all if we have to go through this again.

    How long would you expect to wait before he starts to become less painful ?I don’t think he can put up with this iincreased pain any longer.

    Thank you all for your help.

    Hi Trudi,
    We will have to PM each other when we can find time amongst everything else going on. X

    #354746
    Maz
    Keymaster

    @motherbear wrote:

    I have now come to the conclusion that he is hypersensitive to the increase and I am going to pull his dose back to the original.
    I won’t increase him at all if we have to go through this again.

    How long would you expect to wait before he starts to become less painful ?
    I don’t think he can put up with this iincreased pain any longer.

    Hi Caroline,

    If this helps, I will paste a transcript of Brown giving a presentation in the 70s on hypersensitivity and the actions he took in those situations in a PM to you.

    The tetracyclines can be tolerated in very high doses. In AP, the max dose used is usually 100mg twice a day, every day, called The Harvard Protocol, because this is what Dr. T used in the MIRA and Sclero trials. In Lyme treatments, upwards of 600mg a day might be used in split doses. However, for the hypersensitive rheumatic, these doses are clearly too much to tolerate.

    Hypersensitivity can build over time and so Brown would usually stop the medication altogether for up to a week and then re-commence the antibiotic at a lower or the same dose, depending on the individual case. More is explained in the article.

    My guess, just as a fellow patient, is that as your son is in the spondyarthrophy grouping, he might do better on a combination protocol, but that is something to discuss with his doc, of course. 😉

    #354747
    motherbear
    Participant

    Thanks Maz,

    just sent you a PM or two as one went missing!

    I never thought of combining two abx. When I can contact DR. H I will mention it to him.

    Caroline 🙂

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