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  • #464406
    jasregadoo
    Moderator

    I’m on my 3rd rheumatologist now…the first changed to a different insurance, the second moved to another part of the state. None of them are AP physicians, and none of them are well versed. I have been fortunate though that all have been willing to give me the prescription for Minocycline. I had my first appt with the new doc yesterday and was worried when he opened with, “I don’t generally prescribe Minocycline….” But he followed up by asking me questions about how I am doing, and said, “Well, if it ain’t broke, don’t fix it”, gave me the RX, and said he might consider using it for other patients in the future. I do not talk to my doctors about the protocol or infection connection, I just tell them I don’t want to take medications that affect my immune system, and that plaquenil and sulfasalazine didn’t really work for me. I feel fortunate that I have been able to stay on the treatment and that my doctors have been at least a LITTLE bit open minded about it.

    #464407
    Luck20
    Participant

    Thats so wonderful! I’m so glad your helping to pave the way for others. Your really doing your bit to help change the world for the better. Thank you! 🙂

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464426
    Spiffy1
    Moderator

    You are very fortunate. My rheumatologist in MD would have never gone for it. Told me I would have to find a new doctor if I wanted that. So I did. A functional medicine doctor.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #464437
    Nana47
    Participant

    Thanks for sharing. It must be quite unsettling to have to train another Dr. My husband has been with the same Rheumatologist for three years now into the fourth. His RA factor was over 600 when first diagnosed. She would not put him on Minocycline after he had bacteraemia while on Methotrexate. She was more concerned about her reputation. She did send him to an infectious disease Dr who has been his life saver in my opinion. We wanted to keep her in the loop and she gave him Sulfasalazine. So now its two and a half years on the Minocycline and Sulfasalazine and his RA factor is down to 39. He also takes lots of supplements including Serrapeptase and uses Stevia, both of which reduce bacterial biofilm and therefore help the Minocycline to get the bacteria. He also takes mega Probiotics including Sacharromyce Boulardii or S Boulardi for short. Last visit to the Rheumy she was in a hurry but was quite flustered because she couldnt find any RA symptoms, no joint damage, no swelling, no pain! I said well just be happy that he is well like we are. And when I suggested he taper down on the drugs, the Minocycline and Sulfasalazine – hell no. That was not an option. But he had cut down on the Sulfasalzine about a year ago.

    #464439
    Spiffy1
    Moderator

    Wow! This is great! I love reading success stories! I am always so amazed that people with a really high factor can see the most difference in their numbers. Down to 39! His is lower than mine and I have been on AP five years. My hat is off to you both! Keep up the great work! Maybe I should get back in my probiotics.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

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