Home Forums General Discussion 3 Month update , Progress but stomach issues

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  • #465831
    Vincentpre23
    Participant

    Hi all,

    I just wanted to write a quick update. I am back on 200mg of Minocycline after taking a few weeks off. Needless to say all disease symptoms came back during this time. I had the original Par Tablets crushed and placed into an acid resistant capsule by a compounding pharmacy. They seemed to not irritate my stomach as much but after being on them for a week the disease symptoms continued to get worse. I believe the pharmacist may have put some filler in the capsules and I just don’t think they are as strong as the original tablet form.

    I began taking 50 mg of Par tablet every other day and that seemed to work better and I have finally worked my way back up to 100 2x a day. The difference this time is that I take one in the morning with food and a bottle of water, and I take my second dose at dinner again drinking a lot of water. Previously I had been taking them without food and although the medicine worked better I think overtime there was too much irritation in my stomach. I hope that the pain does not return . I continue to take milk thistle , slippery elm, probiotics and digestive betters.

    On a separate note I am currently seeing a AP rheumatologist who personally knew and worked with Dr. Brown. Although he is retiring in August I hope to learn as much as I can from him. He reviewed my lab results and was interested in retesting for Myco P. to see if it went down since initiating AP. He gave me a script for Zyduss capsules and told me that some of his patients did better on them . He also told me that for those patients who experienced sided effects from Mino, he would lower the dose and add Doxy. He also stated that he and Dr. Brown would use Ampicillin with Mino but I unfortunately have an allergy to penicillin. I will follow up with him in a few weeks. If anybody has any questions they would like for me to ask him let me know.

    4/19 symptoms onset
    UCTD , 1:40 ANA Speckled, Negative for all other Autoimmune antibodies
    Mycoplasma P, EBV, HSV1
    1/20 started 100mg minocycline once daily
    2/20 200mg minocycline each day

    #465833
    Linda L
    Participant

    What is it Par and Zyduss?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, vitamins and minerals.
    MTHFR heterozygous

    #465834
    Lynne G.SD
    Participant

    They are brands of minocycline

    #465840
    Lucy91
    Participant

    Where is the AP rheumy located at? I am interested if they are close to me and would love to have their expertise. Even though they are retiring, I wonder if they trained someone else in the practice? You can PM me if needed with location and dr .name.
    Thanks!

    #465841
    Maz
    Keymaster

    Hi Lucy,

    Dr. W. is in NYC and he notified the foundation a week or so ago that none of his colleagues at his hospital were willing to prescribe AP and asked us for doc lists for NY and surrounding states for his patients. This rheumy is retiring in one month and Vincente will no doubt share how they made an exception and he got squeezed in as this doc is no longer accepting new patients.

    There is another very experienced AP rheumy in Riverside, CA, however, if you’d like his contact info?

    #465842
    Lynne G.SD
    Participant

    Hi Lucy;
    Have you looked into an LLMD? Often they are better that some AP docs.

    #465843
    Vincentpre23
    Participant

    Hi Lucy,

    As Maz stated he’s unfortunately not accepting new patients. I think Lynne is right and I myself will probably seek out a Lyme doc next . They are not as hesitant to treat with abx and if you are having symptoms I believe most will take you as a patient . Often times it takes more than one abx to put us in remission and I really would like to pulse Zithromax . The few Lyme docs I’ve tried calling would haven seen me as a suspected autoimmune case. Lyme patients are treated with multiple abx and iv for a number of years . Many do not have positive Lyme labs and it is my belief that Lyme docs are actually treating autoimmune patients who are infected with other organisms. I wish they were more transparent but it doesn’t hurt to call them up and explain your situation . Feel free to private message me.

    4/19 symptoms onset
    UCTD , 1:40 ANA Speckled, Negative for all other Autoimmune antibodies
    Mycoplasma P, EBV, HSV1
    1/20 started 100mg minocycline once daily
    2/20 200mg minocycline each day

    #465845
    Lucy91
    Participant

    Hello all
    Yes Maz, I would like the contact info for the experienced dr.

    #465847
    Maz
    Keymaster

    Hi Lucy – just sent to you in PM.

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