1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
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  1. jen1177

    jen1177

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    Don't give up...wait a few days for the rash to go away, then try the Plaquenil again. The rash might just be a total coincidence and not caused by the plaquenil at all. Especially if you had no other symptoms like a flare or something.
    If the rash was all over your body, I'd think, yeah, it's probably the Plaquenil, but since it's so localized...seems like it's probably from something you came in contact with or a bug bite or article of clothing or something. Just my opinion...
    sianrecovery likes this.
  2. jen1177

    jen1177

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    Here's an update on my protomyxzoa adventure...
    After 6 months of being on doxycycline (50 mg twice a day) my IBS (constipation and bloating and gas) are worse than ever as well as the ringing in my ears. I stopped taking the doxy several weeks ago and no improvement in symptoms. I feel it has destroyed the gut flora and now my main objective has completely switched from protozoa-killing to IBS and tinnitus relief as these are the things taking over my life now. The only thing the doxy may have helped is my IC (interstitial cystitis) but it could have improved due to diet changes. No way to really know for sure. Bottom line, I do not recommend taking doxycycline if you have IBS.
    I am taking probiotics and extra fiber and using senna tea...nothing is working. And I have acne now that I didn't have nearly as bad as before I took the doxy. I'm beginning to think it was a huge mistake. Protozoa or no protozoa.
    sianrecovery likes this.
  3. sianrecovery

    sianrecovery Senior Member

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    Really sorry to hear that Jen. The abx are a temporary fix in my experience. In terms of your gut, dannybex recommended a great site to me which discusses which probiotics do and don't help, and why. You may already be very knowledgeable on this, but just in case, it was

    cfsremission.wordpress.com

    Sarah Myhill's website site has a good page on the gut as well, just google drmyhill and it will come up. I found olive leaf extract helpful for in beating back the thrush extra.


    Also, have you been tested for parasites? I think their presence worsens some people's reactions to antibiotics. Also, if you get the metametrix test you can get a picture of what the impact of the doxy has been on your gut in terms of different bacterial colonies. There' s parasite forum that discusses different tests, type in pptu parasite forum and google it, and it will come up. Good quality aloe vera juice might help. Do you take sacc boulardi? Some people find it helps. In terms of the cystitis, I had many many years of it, but it improved with d mannose dramatically. I also found a herbal tincture in Rinzai's in Sedona for urinary tract infections that helped a lot - I notice you are in AZ. He will send stuff and you can order over the phone as well. I don't know anything about tinnitus, what a rotten symptom to get stuck with.

    And did you get much support from the doc on this?

    pd I don't know why this is all in bold font. Sorry...
    jen1177 likes this.
  4. jen1177

    jen1177

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    Thank you for all the links and info. I will look into all of it.
    I think I was tested for parasites, but not sure. I just started (today) taking Sacc. Boulardii. I had it lying around but was afraid to take it.
    I did not get much support from the doc about this. I ran out of time again and didn't even get to discuss the IBS problems with him. I told him previously that taking probiotics while on doxy made me very sick (nauseous, bloated, feverish) and he just said to switch brands of probiotics. Same thing happened when I switched so I stopped taking them and figured he didn't know what was going on. He also told me that doxy doesn't have much of an effect on gut bacteria so don't worry about it. I don't believe that at all. (since I stopped taking doxy I have restarted the probiotics, but they seem to have no effect)

    I'm going to look into the Mutaflor and Prescript Assist probiotics...hopefully they aren't expensive. And the D Mannose, too.
    Thanks again!
    sianrecovery likes this.
  5. sianrecovery

    sianrecovery Senior Member

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    and have you been tested for h pylori? that would be a logical thing to do. Maybe message Creekee, she had similar probs to you on the doxy (and got the same amount of help). doxy might not be as harsh on the gut flora as some abx, but it can cause oesophageal ulcers (hence not lying down for 30 mins after dosing) and rarely stomach ulcers, so its not exactly inert in terms of its effects on the gastric system.
  6. Creekee

    Creekee Senior Member

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    Mine ended up being in the duodenum. An ucler and a constriction. Have no idea how much the doxy contributed as I was already having trouble before I started it.

    Doxy may not have "much of an effect on gut bacteria" but its side effects include severe stomach pain, loss of appetite, nausea, vomiting and diarrhea (per drugs.com).

    jen1177: two good products for gut issues (got these from my naturopath) are GI Benefits and ProbioMax Plus DF. I bought them in his office, but you can also get them online. If you're really having trouble, use them both for awhile. I'm much better these days, but still keep them on hand for occasional use. The thing that really helps me is the homemade yogurt. I eat it twice a day. It totally saved my life.

    I was negative for h pylori by blood test and biopsy. Still wondering what causes non-pylori ulcers. Anybody know?
    sianrecovery likes this.
  7. jen1177

    jen1177

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    I was tested for H. Pylori years ago and was negative.

    Home made yogurt sounds good. I can't eat dairy...wonder if I can make it with rice milk...
  8. Creekee

    Creekee Senior Member

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    Has anyone heard of an ILADS treatment protocol for protomyxzoa?

    o_O

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