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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. J

    Detection of Mycotoxins in Patients with CFS

    @Forebearance my sinuses have also given me quite a bit of pain and respond to Zinc treatment, however in my case the Zinc at first seemed to cause a flare up and I had to reduce the dose for a while till it settled. I had a zinc deficiency by medical standards at the time though. I am using...
  2. J

    Detection of Mycotoxins in Patients with CFS

    Hi @Ifish do you know if J Brewer would be prepared to make the formulation for the nystatin and edta mixtures available to a pharmaceutical compounding company in New Zealand? There is quite a forward thinking compounding company here, who do one off treatments. My GP is friends with one of...
  3. J

    Mold therapie change – The Nasal Biofilm

    Hi @student. I'm becoming progressively more convinced that sino/nasal microbiome is a major factor in my CFS and that biofilm, staph aureas and mold are all part of it. Apparently myrrh has some antifungal effects too. Have you seen this paper? www.ncbi.nlm.nih.gov/pubmed/25027570 Can you...
  4. J

    Mold reaction to the new house?

    This info is bound to be in lots of places but I can't find it in my current head space... We decided about a month ago to move somewhere warmer, drier and sunnier to help my health. Then I started reading about mold and we made a hasty departure from the old place, leaving everything behind...
  5. J

    Do Abnormal Mold Markers Really Mean Exposure to Mold/Toxins?

    @Gingergrrl, @Dufresne. Since you've posted that you hope people will read of your experience and explore mold as part of their CFS sooner, I just wanted to say I heard ya and thanks! I've been exposed to water damaged buildings in the past and we are currently in a very old timber house that...
  6. J

    Probiotics for the nose

    @heapsreal, here is the thread with the two posts you might find useful.
  7. J

    Sinusitis , beg spray alternative, cheaper.

    The only other probiotic I've tried is "snot transplants". They reduced the staph in my nose but didn't clear it. The Sakei seems much stronger against active infection/heavy colonisation. I also tried fiddling with my mouth microbiome with lactobacillus strains found in the mouth, to see if...
  8. J

    Sinusitis , beg spray alternative, cheaper.

    @heapsreal, I've recently had a pretty classic onset sinus infection (maxillary) following a cold. I treated it with probiotic lactobacillus sakei mixed in with saline rinse and got a really rapid improvement, whereas saline rinse on its own does noting much for me. I'm becoming progressively...
  9. J

    Unfolded Protein Response and A Possible Treatment for CFS

    Thanks @mariovitali. It seems that some of us react negatively to just about anything. I'm interested in the liver ideas because of the hammering mine has had with previous illness. My enzyme tests look ok though. I've been thinking about your data mining approach a bit but too tired to post...
  10. J

    New antiviral drugs in the pipeline.

    Shingles vaccine, now there's an idea. Agree there is more than one way to interpret high titres. I notice that my "post herpetc neuralgia" has improved remarkably after only 5 days aciclovir. The problem is the medical attitude "if I can't see it or measure it, it doesn't exist."
  11. J

    Pulsing tincture?

    I also took something with astragalus and felt it became less effective after about 3 weeks. Zinc was great for about 5 days..... The honeymoon effect seems to be something a lot of people experience with new sups, there's something going on that's worth looking into. Even with antibiotics...
  12. J

    New antiviral drugs in the pipeline.

    Thanks @heapsreal, you cheered me up. I also get the 'tingles' from the shingles. VSV doesn't seem to be recognised as an ME/CFS associated virus. Any ideas why? Has it not been searched for, or perhaps it's not found in the blood?
  13. J

    Valacyclovir dosage

    @M Paine, thanks for the info. That means I would be better to split my doses in half to 200mg 4x daily. By slightly built I actually meant I'm small not large, so the dose seems ok. At this point for me it's about getting on with treating the obvious culprits while trying to figure out the more...
  14. J

    Valacyclovir dosage

    @M Paine, I'm also in Auckland, just beginning trying to get some treatment for what is aptly described in someone's avatar as Cluster F--- Syndrome. I'm now on 400mg aciclovir twice daily as of Tuesday, prescribed by my GP, cos I asked her for it. I had shingles almost directly after surgery...
  15. J

    Unfolded Protein Response and A Possible Treatment for CFS

    Science is a process of exploration and gaining new knowledge. It begins with observing patterns and trends and forming new hypotheses from the observations. It then involves creating new strategies to rigorously test the hypotheses. Applying existing knowledge is for technicians, not...
  16. J

    Probiotics for the nose

    @joe12 The only probiotic I've seen marketed for the nose is iFlora nasal, but it's an oral supplement supposed to help the mucosal linings or epithelium somehow and didn't seem to do me any good. Also it has a strep in it, which I don't want in my gut! It makes some sense to rinse the nose...
  17. J

    Unfolded Protein Response and A Possible Treatment for CFS

    Thanks for this info @mariovitali, it's really clearly laid out. I like the way you formed your hypotheses and think it could be worth becoming a guinea pig. It will be a while till I've done the basic gut steps and got my 23andme though.
  18. J

    Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.

    Fascinating thread. These bits stood out: It's pretty exciting that Mella and Fluge are now investigation other CSF treatments. They're not stopping at the rituximab study, they're listening to patient observations and trying other stuff.....and they seem to be in a position to peruse their...
  19. J

    Probiotics for the nose

    I've certainly stuck 'probiotics' up my nose to clear a persistent nasal Staph. Aureaus infection, which was spreading and causing some sinusitis. I had surgery to remove a pituitary tumor (acromegaly) via the nose in February last year. Afterwards the mucosal lining had a lof of persistent...
  20. J

    Acromegaly misdiagnosed as fibromyalgia

    Hi, I'm new here, but have been lurking for years. I was "diagnosed" as having fibromyalgia some years ago, but kept fighting for an actual diagnosis because it didn't seem to match what people here described. Turns out I had Acromegaly and have since heard of another person who was also...