Home Forums General Discussion Hello to all ..been a while and need some advice!

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  • #307850
    casey
    Participant

    Hello everyone!
    Been awhile since I have posted but I do occasionally lurk and think of you all often !!
    I have been on AP for 6 years now and am doing fairly well but do have the occasional issue pop up. My son (now 19) has been on AP for the almost the same amount of time. My question is about him .
    He had a few lupus symptoms in 2007 . Testing then showed pos ANA 1:10 titre, speckled pattern and a equivocal dsDNA. Took him to my AP doc (got a positive mycoplasma test there) and due to that, a few symptoms and a big fat huge family history of this crap he thankfully started on AP. He has been on different protocols using mino, doxy, zith and clindy and different antifungals for the 6 yrs. Twice a year he gets his ANA related testing done. The tests have pretty much come back the same as above with 1 being 1:20 though the pattern has switched to nucleolar the past yr and a half. Five months ago his test was pos ANA 1:10 titre nucleolar . Five months ago he started rifampin , a abx he had never been on before. He was just tested again and his ANA is now 1:80 still nucleolar .
    Any ideas on why the jump in number??
    Thanks!
    Casey
    Hoping this post will go through ..for some reason my last 4 posts wouldn’t.

    #370131
    Cheryl F
    Keymaster

    Casey,

    So nice to “see” you! I cannot believe your son is 19! My how time flies! Jess just turned 24 and is more than half way through med school and my younger daughter is 19 and just started her second year of college.

    ~Cheryl

    #370132
    lynnie_sydney
    Participant

    Hi Casey
    When I was on straight mino my ANA always tested positive and range was 1:80 to 1:160 and it varied between homogenous and speckled to a mixture of both. I was told it was low at 160 and not to be concerned. When I came off mino and all tetracyclines it went back down to negative and has stayed there ever since. I suspect it was related to the mino. Am wondering if your son’s recent result is something of a herx?

    In terms of your 4 posts not going through can you say what happened? Was it a login problem?

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #370133
    Maz
    Keymaster

    @casey wrote:

    Five months ago he started rifampin , a abx he had never been on before. He was just tested again and his ANA is now 1:80 still nucleolar .
    Any ideas on why the jump in number??

    Hi Casey,

    According to some quick searches just run, Rifampin can, in some cases, be hepatotoxic and may cause elevations in ANA. This is not to say that this is what is happening with your son, but it might not be a bad idea to get anti-SM ABs tested just to rule out any issues with liver metabolism of this abx. If this is causing it, then withdrawing the rifampin should resolve any drug-induced liver hypersensitivity issues. Just seems a bit coincidental that the elevation in ANA has occurred since starting rifampin…while it may be herxing, after 5 months of use and considering that this abx may have liver effects, might just be worth exercising caution with this and, depending on what his doc is treating, switching to a different anti-microbial. You may also find more info from patient experience on this on the http://www.cpnhelp.org website, where rifampin is sometimes used as part of the protocols used there.

    I am unable to access the full text of the following article, but there are other studies online you can search, discussing rifampin and drug-induced liver toxicity/hypersensitivity causing elevations in ANA:

    http://www.ncbi.nlm.nih.gov/pubmed/7826225

    Nice to “see” you again, Casey!

    #370135
    casey
    Participant

    Thanks for the response ladies!!

    Cheryl..so glad to hear about Jess! Really hoping she is interested in focusing in anything related to these illnesses. I cant believe how fast time has flown! Hope you and the rest of your family are doing well!

    Lynnie…I was thinking “herx” and am hoping that’s what this is. I am not sure about the mino causing this jump in number as it was never this high before on any combination mino or not. I just hope its not disease progression. Symptoms are still few so I don’t know. I find these diseases so hard to figure out. Anyhow, sounds like you are doing well and I am so happy for you!

    Maz..you are like a walking set of encyclopedias!!! I did some searches on rifampin and never found that pubmed info. Even now when I clik on that article it wont open to allow any reading other than the title. I will certainly check into that though with the doctor. Again I am so hoping its a herx but not sure if herxing would do this 5 months later. I wonder what the number would have been if he was tested in the 2nd month. If it had have been higher I be somewhat relieved right now. Oh well on goes the battle. How are you doing? Hope all is well with you!

    Thanks again ladies for the responses!
    Casey

    #370136
    Maz
    Keymaster

    @casey wrote:

    I did some searches on rifampin and never found that pubmed info. Even now when I clik on that article it wont open to allow any reading other than the title. I will certainly check into that though with the doctor. Again I am so hoping its a herx but not sure if herxing would do this 5 months later. I wonder what the number would have been if he was tested in the 2nd month. If it had have been higher I be somewhat relieved right now. Oh well on goes the battle. How are you doing? Hope all is well with you!

    Hi Casey,

    The study seems to be referring to “one” case study and correlation doesn’t always imply causation. Studies like this may be incidental, though, and worth checking into as it may occur more often than is recognized, too. Just thought it might be something worth checking into with the doc. Sometimes when we drill deeper into things with various anti-microbials and biofilms get busted, other latent infections rise to the surface. These may mean labs can fluctuate a lot, too. I once listened to an experienced AP doc on a chat session (you may have listened into that one, too, as it was a few years ago), where he said that it was pretty common to see elevations in ANA right before a patient went into remission. I thought that was pretty fascinating.

    If you young man isn’t experiencing much in the way of symptoms, he’s rockin’ it and this sounds like good news. So, hang in there, Mom!

    Your doc should be able to access the study, if you pass it on to her. It may or may not wind up being relevant, but the title seemed appropriate (though ANA pattern wasn’t mentioned).

    #370137
    lynnie_sydney
    Participant

    Casey – am assuming your son’s doc is checking his liver enzymes regularly? The 3 to check re drug induced toxicity are ALT (the most important) AST and Bilirubin. Know this from a personal experience that ended happily!

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #370134
    casey
    Participant

    Lynnie, Liver enzymes are checked every month and all is well there!

    Thanks,
    Casey

    #370138
    lynnie_sydney
    Participant

    Great news sounds like your son is doing well!

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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