Home Forums General Discussion Diffuse, Ap and supplements

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  • #461644
    laurieah
    Participant

    Hi, I have diffuse and starting ap. What dose is good to start out? Also what supplements do you recommend?

    #461645
    Maz
    Keymaster

    Hi Laurieah,

    You’ll find the method Dr. Trentham used for starting minocycline for Diffuse SD at the link below. As most SDers want to treat as aggressively as possible to slow down the SD freight train, aiming for the Harvard Protocol (100mg twice daily) is the goal, but starting on just 100mg daily (or 50mg twice daily) for the first month, as mino can lead to some early dizziness until the body adjusts, is generally what Trentham advised. Also, to ensure one is taking a good quality probiotic in adequate quantity to preserve gut health.

    Minocycline in Early Diffuse Scleroderma

    All the best as you begin your road back!

    #461646
    laurieah
    Participant

    Thank you so much Maz.

    #461686
    MarlaCL
    Participant

    hi
    Does anybody take 2 mino at the same time? Im not feeling any real benefits yet . Its only 2 months that I have acheived the full protocol Shortness of breath seems worse but it seems to be coming from diaphragm breathing,,,,,,,can’t say I have felt this way before……Sometimes i wonder with Scleroderma and slow digestion if the capsules of the supplements( I sure take a lot) are just blocking me…….any comments would be appreciated
    THANK YOU

    #461689
    richie
    Participant

    it is better to take one in the morning and one later on –have you had a PFT ??

    #461690
    MarlaCL
    Participant

    Hi Ritchie
    I have lung fibrosis and did my bi annual pft today. Dissapointed with result. I went down to 44%. Last March I was at 42% and Sept 2017 with just a small dose of mino 500 mg a week I went up to 47%. I also take 1500mg cellcept. I feel I’ve hit a wAll or need to be more patient. On 1400 mg since Feb 1 2018. I’m gf df and sf and now grain free. Any suggestions would be hugely appreciated. I take NAC and many other supplements
    Thank you

    #461710
    Pinkmoth
    Keymaster

    Hi,
    Bovine colostrum has been very helpful for me. I just started digestive enzymes also.
    I can eat just about everything now except still not certain forms of starch. Whole wheat flour or whole corn flour isn’t a problem but white flour is, as well as cornstarch and baking powder (weird).

    Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
    Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
    Meds: minocycline (Zydus generic) 100mg 1x daily,
    Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

    #461711
    laurieah
    Participant

    Thank you pinkmouth

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