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  • #300529
    whaleharbor
    Keymaster

    I'm still trying to tweak my dose.  Dr. T had initially prescribed 100mg of mino twice per day on an empty stomach.  Probiotics weren't mentioned.  My tummy couldn't take it.

    So he told me to lower to 100mg every day, still no mention of probiotics.  Still to take on an empty stomach.  My tummy still couldn't take it.

    So I put myself on 100mg every other day with food and a probiotic.  Tummy holding tough so far…thank goodness…But I was doing arthritis wise fantastic on the 200mg per day or 100mg per day dosage.  I mean immediately.  This new lowered dosage is doing nothing for pain. 

    Perhaps I was just tapping into mino's anti-inflammatory effects with the higher dosages.  Perhaps I just need to be patient.  I need some reassurance.

    Has anyone gotten better on 100mg every other day?

    — whaleharbor

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #314428
    lynnie_sydney
    Participant

    Yes whaleharbor – my success was with 100mg on just MWF. That has been my regime from the beginning.You may be right about the anti-inflammatory effects of original twice daily 100mg dosing. However, you may now be herxing from the change of dose. If the pain is bearable, it may be an idea to hang tight for a while. I know some people have had good relief with infra-red saunas and hydrogen peroxide baths for pain relief. Am just thinking of things that will not upset your GI tract further. Others will no doubt have other suggestions. Hang in there. Lynnie

    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)

    #314429
    Cheryl F
    Keymaster

    WH,

    This is not answering the question you asked, but here goes anyway…

    Mino also comes in 50 MG doseage. You may want to consider asking Dr. T for the RX for 50 mg pills. That way you could take 50mg daily, then twice a day to try to build back up to the originally prescribed higher dose. Also, did you ever try the daily dose with food? I know that Dr. T is firm on the without food requirements, but if it helps you take it daily, then it might be worth the small amounts of med being lost so that you get some med more often.

    Just a thought.

    Also, I know one lupus patient who has recovered greatly on 25mg minocin M-W-F. She simply couldn't tolerate more than that.

    Cheryl

    #314430
    whaleharbor
    Keymaster

    Lynne:  Thank you for your quick response!  I'm so glad to hear that you have done well on 100mg MWF.  I appreciate all of your ideas for pain relief that doesn't impact my tummy.

    Cheryl:  Great thoughts also!  I actually did try 100mg with food…but I think I hadn't started probiotics soon enough.  Your idea of the 50mg is great!  Thanks for the insight!

    — whaleharbor

     

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #314431
    Rosey UK
    Participant

    Hi Lynnie

    can you tell me how much piroxide to put in the bath and what strengh please?

    I would like to try this.

    Thanks

    Rosemary

     

    #314432
    lynnie_sydney
    Participant

    Rosemary – I have not needed the bath myself. Below is what someone from anonther AP board recommends. Lynnie 

    Soak in a bath of 2 cups Epsom salts[/b] and 2 x 16 oz bottles of hydrogen peroxide for about 30 minutes. It helps rid the body of toxins deep in tissues and kills a wide spectrum of microbes. (First, soak in tub about 5 minutes before adding the Peroxide and Epsom Salts[/b] to open pores.) This can be done at least 1 to 3 times per week. Take no vitamins 4-8 hours before bath. The hydrogen peroxide may be increased later to 3 bottles per bath if well tolerated.

    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)

    #314433
    Rosey UK
    Participant

    Hi Lynnie

    And thanks very much for the information.

     I did use  Epsoms salts regulary until the sack emptied and we didn't replace it, so I will definatley start again, as the mineral magnesium is essential to us all and I will also add the pyroxide.

    Thanks again much appreciated.

    Rosemary x :roll-laugh:

     

    #314434
    Tiff
    Participant

    I can only share my situation:

    I did great on 100mg 2x/day for a number of months, then my tummy balked, too.  I played around with the dose for months after that.  Nothing helped.  Getting the dose up to daily warded off the pain, but again my tummy balked.  Drop doses and the nausea went away, but the pain returned.  Apparently I was getting immunosuppressive help at that high dose.

    Since starting MP I am finally pulse dosing and feeling like I am making headway.  No tummy troubles and much pain reduction.  However, it is not gone!  I truly feel that I will continue to have some pain for years as I fight off this infection.  This I believe because I think killing mycos is a long, nasty process.  I SAW it happen with my skin over 18 months, and I think my joints, which came later and might have a more insidious occult infection, will take AT LEAST as long.  I will be progessing on the MP, and I think I will not see more pain reduction until I add another ABX.  And that may be preceded by another nasty flare while different mycos are being addressed.

    While I think it would be great to be symptom free, I do not think that having some symptoms means you are not making progress.  At least that is my hope, again in part because I saw that process occur on my skin.  I had skin issues right up until the infection was slowed down enough that my own body could kick in and help, and that was FAR longer than most derms would have been willing to wait.  I also had some striking changes in my labs which give me hope.  I think MP is still addressing skin issue because my skin continues to improve which I though was impossible.

    Just sharing my experience.  It is a work in progress, and yes, patience can be needed, but you have to follow along to make sure damage is in check, something I have addressed with my doctor, but still worries me at time!

    Good luck!

    #314435
    GlitterGirl
    Participant

    Hi Whaleharbor,

         Sorry to hear that your tummy is bugging you:(, that is rotten isn't it?  I too have been having problems with it, I also on 200mg MWF, but I also have been taking Losec, which I have been taking for years because of the ulcers from the Anti-inflamatories, it helps a whole lot, and would not be able to take them without it The doctor wants me to start taking 100mg, mwf, because I am having some bad flares, but after reading Lynies message, maybe I will try and stick it out, he wanted me to stop altogether because I have a bad yeast infection in my mouth and other, but I was resistent to that, and he conceded to just the 100mg til the thrush is better.  He started me on an antifungal which I can get tomorrow. 

         Have you ever heard of Losec, or Pariet?(sp) they are not antacids, as I found out, but tricky little numbers, they prevent the acid from starting , as opposed to turning the  already there acid into alkaline,  I take one every time I take in inflam, and take the three of them together, losec, minocyn, and inflams.  It's going not bad, the stomach is not doing great, but like what else is new, I have lost quite a bit of weight over the last week or two, and my doc is not too happy with that either.  I have found that they make me nauseous,  on my bottle of pills it says to take with food, are they meant to be taken alone??  I just realized that, I eat with mine, alot!!!   The doctor doesn't know if I am having a Herx, and neither do I:P!! 

    I hope things get better for you soon, nothing worse than having a bad tummy!!  Best wishes to you Whaleharbor, I am thinking about you. Take care and be well!!

    GlitterGirl:D

    #314436
    lynnie_sydney
    Participant

    GlitterGirl – In case I have inadvertently caused confusion, just wanted to let you know that I was on 100mg MWF for most of the time – 4 years in fact. I had great success with that. I raised the dose myself last year to see if it would help push my RF downwards any more. But my new AP Doc told me she didnt want me on that much. It was more important to heal my gut. I am now down to 50mg mino MWF (with a couple of low dose other abx). Lynnie 

    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)

    #314437
    GlitterGirl
    Participant

    Hi Lynnie-Sydney,

         I was just really trying to keep at it, at all costs really, and after reading alittle more on the road back, I see that the objective is to really get better, with the least amount of Ap possible, not the other way around!!  I finished the week with the two, and on monday will take one away, and go from there,  take care,

    GlitterGirl

    #314438
    lynnie_sydney
    Participant

    GG – you also dont want to reduce the dose too fast or too much without doctor's advice. Lynnie

    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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