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  • #308569
    niteowl
    Participant

    Not sure what to do. Have been having an RA flare for 10 maybe 12 months. Was put on methylprednisolone for a while which helped, but couldn’t take the lack of sleep nor the GI issues from it. Now I’m only taking my usual Minocycline 100mg every other day, Probiotic Pearl, Synthroid, and boatloads of ASA! Should I cut down on Mino frequency? It takes nearly 6-8 hours after I wake to move my hands with less stiffness. Inflammation in neck, hands, wrists, elbows, knees, ankles, feet. If the pain wakes me up, I take a Vicodin. If the spasms hit, I take my Flexeril. I use heating pads on my hands all nite, or I’d have a worse time upon waking.
    I am using my Primary Dr for most everything as when I had my Herx a month into my ABX initiation, I called my Rheumy to ask him to order muscle relaxer, he told me not to call him -said to use my Primary for that! So, I always rely on my Primary, who had a Grandmother who had RA, and actually gets it. I don’t think my Rheumy gets it; he just wants to put me on MTX 🙁 I do not want to ‘go there’. So I never reveal the true nature of the beast to him.
    Unfortunately, the out of pocket office fees for ABX Dr are in the $1500 plus range, so will not be going there at this time. I wish insurance would cover ABX Drs 🙁

    Diagnosed with RA in 2012
    Fifth Disease in '03
    Lyme? in 2000?
    Had radioactive ablation of hyperactive thyroid in 1997
    autoimmune thrombocytopenia resolved
    Anemia resolved with treatment of RA with Minocycline
    Blood type: B neg

    Meds:
    Minocycline 50mg once a week
    Levothyroxine .88mg
    Liothyronine 5mg
    Methotrexate 20 mg once a week

    Folic acid
    B12
    B6
    Vit D
    Biotin
    Biosil
    Cbd balm
    Flexaril as needed
    Aspirin
    Benedryl
    Ventolin inhaler
    Lactibiane probiotic

    #373952
    m.
    Participant

    Your PCP (primary care physician) sounds flexible, and caring.

    Perhaps your PCP would be willing to call Dr. S in Iowa and discuss your situation and get ideas for a reasonable next step?

    The protocol is not a one-size-fits-all protocol, and it takes TIME for severe disease to cool. It can be very reassuring to get the counsel of an experienced AP doctor.

    Some people benefit from a round, or several rounds of IVs. Some people have been able to arrange for IVs to be provided at a lower cost, and have them done locally.

    Some people benefit from a change in antibiotic dosage (either up or down), or a change in dosing pattern (more or less frequently), or adding in another anti-microbial.

    What is ASA?

    Are you taking anything for inflammation?

    Have you and/or your PCP read through the Historical Protocol here on the site, and/or read TNAB?

    https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/184.html

    http://www.amazon.com/The-New-Arthritis-Breakthrough-Inflammatory/dp/0871318431

    #373953
    niteowl
    Participant

    Thank you for responding so quickly! ASA is Aspirin, sorry, Keep forgetting about that one. Could you send me more info regarding Dr. S? I will read over those links and print them out to give to my PCP. I need to reread the historical protocol again, have forgotten things. Yes, I have read the book about 2 years ago.

    Thank you m. !

    Diagnosed with RA in 2012
    Fifth Disease in '03
    Lyme? in 2000?
    Had radioactive ablation of hyperactive thyroid in 1997
    autoimmune thrombocytopenia resolved
    Anemia resolved with treatment of RA with Minocycline
    Blood type: B neg

    Meds:
    Minocycline 50mg once a week
    Levothyroxine .88mg
    Liothyronine 5mg
    Methotrexate 20 mg once a week

    Folic acid
    B12
    B6
    Vit D
    Biotin
    Biosil
    Cbd balm
    Flexaril as needed
    Aspirin
    Benedryl
    Ventolin inhaler
    Lactibiane probiotic

    #373954
    m.
    Participant

    I sent you a PM with the info. Let me know if you have any trouble retrieving it.

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