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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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  1. fromstrawtomore

    Help me make sense of my GPL-MycoTOX results!

    - Serum osmolality is often high while ADH is often low - C3 and C4 aren't the same as C3a and C4a, and are often low as opposed to high for the latter. That's a pretty good panel you've got there. The GPL-Mycotox test is a bit of unknown at this point.
  2. fromstrawtomore

    What does the effectiveness of mold avoidance tell us in light of the latest research?

    Probably. Without stopping toxins coming in and their on-going inflammation, little or no healing of downstream issues will take place. I believe that CIRS by itself can overlap with all symptoms of ME/CFS but can also trigger other ME/CFS states as the ongoing chronic inflammation and the...
  3. fromstrawtomore

    Mold doctors in Europe

    VCS (preferably Suriving Mold *and* VCStest.com) is the only cheap test for biotoxin illness / CIRS (aka mould illness). It has a fairly high false negative rate though (8.5%) but a small false positive (2.5%).
  4. fromstrawtomore

    What can C4A indicate?

    C4a can indicate other inflammatory conditions (search PubMed and SelfHacked) but when combined with high TGFb1, positive HLA, low VEGF, low ADH and high MMP9 it strongly indicates CIRS. Whether this is CIRS-WDB (mold) or CIRS Lyme, or both can't be determined from those results. Have you...
  5. fromstrawtomore

    Questions re: mold testing, labs, treatment

    Mycometrics (the lab Shoemaker recommends) costs $275 for ERMI (36 mold species) and $125 for HERTSMI (5 mold species), if you supply your own swiffer cloth.
  6. fromstrawtomore

    Questions for Cholestyramine users

    1. How long did it take for you to notice a POSITIVE difference? It took two months of TID-QID dosing (4g CSM) to pass the VCS test. 2. How many weeks or months did you use it? Seven months. Still on it. I changed from compounded to normal (with aspartame) after four months due to cost. 3...
  7. fromstrawtomore

    Questions for those taking activated charcoal for mold detox

    1) Have you (past or present) taken activated charcoal pills as part of a mold detox program? Yes. 2) If so, what brand, dose and frequency did you take them? Was it twice a day approx 12 hrs apart or another protocol? One capsule twice a day, Bulletproof activated charcoal (500mg). About...
  8. fromstrawtomore

    Low Hemoglobin

    I had progressive decreasing hemoglobin since being ill with ME/CFS, it went from 138 in 2001 to 101 (g/L 135-180 male rang) in 2006. It was labelled by doctors as anemia of chronic disease. It normalised on the simplified methylation protocol going up to 145 (2011). I took a year break from the...
  9. fromstrawtomore

    Recruiting now in Australia for NCNED Study (ME/CFS patients and healthy controls)

    The same group (NCNED) are doing another study this year (2014), collecting samples in May. It will be a follow-up to the moderate/severe study done last September/October which has led to two studies being published so far (see here and here). They are hoping to track the people from last year...
  10. fromstrawtomore

    Analysis of the Relationship between Immune Dysfunction and Symptom Severity in Patients with CFS/ME

    This is now available at http://www.name-us.org/ResearchPages/ResearchArticlesAbstracts/ImmuneArticles/2014HardcastleImmuneDysfunctionSymptomSeverity.pdf I was part of this study, in the severe group, so it's especially pertinent to me. The interesting findings for me were the different...