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This topic contains 9 replies, has 5 voices, and was last updated by  Rockin Annie 8 months, 1 week ago.

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  • #461443
    laurieah
    Participant

    Hi, I’m new and would like to try ap therapy. I’m confused as I read many different protocols. Is there a starting dosevand schedule? Most likely going to use doxycycline.

    #461446
    Airen
    Participant

    The therapy, I believe, should be started low and slow. I have RA and started with Dr. Brown’s protocol of 100 mg, once a day on Mondays, Wednesdays and Fridays. After 4 months I increased my dose to 100 mg once a day Monday thru Friday. Ever 4 months or so I did some sort of increase in dosage to the dosage I am on now which is 100 mg twice a day every day of the week. I noticed more and more improvements as I increased my dose. Your dosage will also depend on your ailment. Why doxy and not mino? I am now in remission…I did well on generic mino very quickly. The first 6 months were complete hell and I wasn’t sure it was going to work but it did and I am doing so well now.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #461448
    laurieah
    Participant

    Thank you. I guess insurance issues. I have diffuse scleroderma.

    #461451
    Maz
    Keymaster

    Hi Laurieah,

    If this helps, the general recommendation for SD is to follow what has been dubbed, the “Harvard (or daily dose) Protocol. Details of how this was done in the trial are found at this link:

    Minocycline in Early Diffuse Scleroderma

    All patients were administered minocycline at a starting dose of 50mg twice daily for the first month. The dose was then increased 100mg minocycline twice daily for the remainder of the study. In evaluations that were carried out at three-monthly intervals, this dose was found to be well tolerated.

    Airen’s description of dosing for RA is accurate. Similarly, for SD patients with measureable inflammation, patient experience tends to be that dosing needs to be more gradually increased, because although many SDers don’t experience noticeable herxing, some find they feel worse initially, so going “low and slow” can help to reduce these effects. In this light, degree of herxing is relative to the amount of pre-existent inflammation. The goal of most SDers is to treat as aggressively as possible to obtain more of the DMARD effects of minocycline. Minocycline is preferred over doxycycline by most SDers, because it works faster due to its superior ability to penetrate skin tissues (greater lipid solubility to cross cell membranes).

    Additionally, even when remission is reached, most SDers find they need to remain on their mino for life, though some are able to reduce their dose just for maintenance and may switch to doxy, if skin hyperpigmentation becomes an issue.

    Does that help, at all?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #461452
    Rockin Annie
    Participant

    Hi Airen, are you taking any other conventional meds?

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #461454
    Airen
    Participant

    Rockin Annie, No I am taking nothing else at all. I did however have to continue with my prednisone for at least the first year of being on mino. Then as I slowly felt better I slowly weaned off the prednisone. I have been prednisone free for 1 year now and feel great. After prednisone I would take 4 advil every morning and slowly weaned off that too. Haven’t taken Advil in a long time either. I have no pain. I take other supplements like vitamin D, methylation support (MTHFR), WP thyroid for hypo/hashis, Vitamin C occasionally, natural calm magnesium occasionally, 100 billion probiotics daily (I have tried a lot of different brands, good quality ones, they all seem the same). I will try new things here and there and only keep them in the rotation long term if I feel they help me.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #461455
    aboyer
    Participant

    Rockin Annie…How are you doing on the Zithromax?

    Diagnosed with severe RA 12 years ago
    Tested positive for M. pneumoniae and C. pneumoniae

    Current meds: Kineret 100mg daily, plaquenil 100 mg daily, and just started on minocycline 50 mg m, w, f

    Supplements: fish oil, vitamin b12, folate, b6, iron, NAC, selenium, zinc, vitamin c, and biotin

    #461472
    Rockin Annie
    Participant

    Airen you are doing well thanks for update on your supps as well and so good you have no pain at all 😀

    aboyer, my doctor would only let me take Zith because it helps with my bronciectasis, not for my RA, but I do feel it helps with my pain levels. My Rheumy has a closed mind to AP protocol, so I don’t tell him, I do however want to go back on to either mino or doxy if I can find an obliging dr.

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #461473
    Maz
    Keymaster

    Hi Annie,

    Tetras are commonly used for bronchiectasis, too, so you may have luck with the doc currently prescribing your zith? Might depend on the organism you are dealing with, though.

    Antibiotic Treatment Strategies In Adults With Bronchiectasis

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #461479
    Rockin Annie
    Participant

    Thanks Maz, will have a go when I visit her this week, thanks for the reply😀

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

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