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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. AbbyDear

    This is what we're up against

    these doc's opinions is terrible. it's bad enough we have to suffer and struggle, but to be degraded by people who are in position to help... while there might be range of illness, there might be some taking advantage of situation, but there are many who are truly ill. it's their job to...
  2. AbbyDear

    Moving talk by Dr Jemsek - Lyme physician.

    brings tears to eyes, to find a doc with such compassion and passion (and even in the face of adversity). I applaud! this is too rare. he acknowledges the extreme effect lyme can have on people...
  3. AbbyDear

    Mystery condition: I react to ALL Food, herbal supplements and spices - Why?

    Sounds familiar @Fogbuster , you are not alone... For me you can add massive pain, and insomnia...and I am quite certain it is not due some psycho-bable crap I found nothing to help, cept of course avoiding the worse offenders. Not sure about additional testing, I have already spent a...
  4. AbbyDear

    documenting pain

    I didn't quite understand the relationship of the PET/MRI and the TSPO marker, but, at least is sounds as if they are getting closer to documenting pain: http://news.harvard.edu/gazette/story/2015/01/breakthrough-on-chronic-pain/
  5. AbbyDear

    EEOC anyone?

    hey hugo, ya makes things even worse when you gotta put up with crap from others, specially when job is a stake (?), or even just the workplace environment/stress. For me, the FMLA leave was the kiss of death. After that, the company, HR, dept. manager, etc. was out to get rid of me... even to...
  6. AbbyDear

    Why your doctor may not be listening to you

    i don't like the so much reliance on statistics, it seems that outliers do happen, and should be considered. just seems to me when the statistics suggest something to be too rare, then it is not considered possible (at all). on the other hand, (it seems to me) blood tests that are outside the...
  7. AbbyDear

    Mast Cells and TINNITUS

    my tinnitus gets worse due to certain foods/supplements/meds as well, the same things that make other symptoms worse (including pain, sleep, and the wired mind/feeling...). I have found nothing that helps me with this increase in tinnitus, cept time to decay/avoidance of triggers.
  8. AbbyDear

    First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

    @osisposis i pretty sure i got olfactory damage also.
  9. AbbyDear

    bacteria translocation test ?

    Can anyone tell me if there is a specific blood/urine test for bacterial translocation - that directly checks for bacteria or bacteria fragments (even from supposedly friendly probiotics) in the blood ? Is this done indirecly via nagalase and/or LPS ? or some other leaky gut test ? or is...
  10. AbbyDear

    Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia

    i thought another interesting video that showed up after the short clip (in first post) was finished:
  11. AbbyDear

    Chronic sinusitis without yukky mucus: what's wrong with me?

    @Sasha, i have similar problem, cept pain is always present, just made worse by things like food and MCS, etc. Been to many docs, no one has a clue. still after all these years not sure if there is problem in sinus, or gut, or brain, or immune system (though likely outside of sinus if food is...
  12. AbbyDear

    Treated like a criminal at the ER

    I feel I should be treated as a person, with respsect, with a serious health problem first, and not right out as a criminal, or simply as a psychosomatic case, when visiting a doctor for professional, serious, health concerns.
  13. AbbyDear

    Treated like a criminal at the ER

    felt like being treated like a criminal by a doc once, interrogated. and pretty sure they called my pharmacy to check med history before the office visit, even though they asked for current medications on the intake form... (and there was no history of pain med use at that time).
  14. AbbyDear

    Can anyone explain TH1/TH2 shift and possible drugs to alter it?

    I agree with @Charles555nc - i believe the liver flush is legit (actually having done several of them myself). They are difficult, and it may be that some should avoid due to the high fat, the high magnesium sulfate, the removal of the stones, and any other possible risk/complication...
  15. AbbyDear

    making a PRObiotic chart -- Bifido spp only!!

    here is nother site with probiotic info: http://probiotic.org/bifidobacterium.htm
  16. AbbyDear

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    i wonder if some 'probiotic' strains can be "friendly" to most people, but not so friendly to others, in so much as the immune system is activated for some reason (we know some bacteria are bad for all). i also wonder about the diversity and if the symbiotic population can somehow mutate or...
  17. AbbyDear

    Mold Illness Physicians

    thanks for the link/info.
  18. AbbyDear

    MSH & VIP test questions

    i think labcorp and quest do both (though i could not find MSH in quest online): http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=920&fromFlyOut=true...
  19. AbbyDear

    Sulphur/Sulphite Sensitivity

    not sure if you caught this, but here is other thread about those test strips: http://forums.phoenixrising.me/index.php?threads/test-for-sulphate-and-sulfite-levels.29104/#post-444311
  20. AbbyDear

    Test for sulphate and sulfite levels?

    sorry about the confusion. I think here is link to quantfix sulphate test strips (pH 4-8) http://www.mn-net.com/tabid/10341/default.aspx or http://www.ctlscientific.com/cgi/display.cgi?item_num=91329 and a link to the sulphite test strips (pH 6-9)...
  21. AbbyDear

    B12 causing numbness?

    check into the possbility too much B6 also. http://www.drweil.com/drw/u/ART02763/vitamin-b6.html
  22. AbbyDear

    Test for sulphate and sulfite levels?

    i think there are some test strips (for urine) available at amazon. not sure how accurate they are. they show just finite number of levels (crude), so not a fine measurement, but may give indication of "too much". also, i think you have to buy many as opposed to a few for a quick test.
  23. AbbyDear

    TILT...I have this, do you?

    I can imagine. I can only skim the text, and not able to understand it all, but I think this is close to what I am experiencing - can not tolerate much of anything, hyper-sensitive (odor, food, chemical, etc.). what bothers me is that nobody in my area has any clue about diagnosing anything...
  24. AbbyDear

    Bacterial toxin may trigger multiple sclerosis, research finds

    is there a test to see if this toxin is present in blood ?
  25. AbbyDear

    Comment by 'AbbyDear' in 'Lectins worse than gluten?'

    good catch. i think gluten is only one of many lectins in grains. there are a few books written about this, e.g. "going against the grain", and i suppose the paleo diet is wrapped around this also. i forget, but the book "breaking the vicious cycle" might have touched on this also (though...
  26. AbbyDear

    How can isolation, loneliness and inability to make friendships be managed.

    correct Raindrop. You can (left) click on the name (generally in blue) and the popup allows you to "start a conversation" also.
  27. AbbyDear

    Hesitant to start Allergy Immunotherapy!

    A few other related PR threads: http://forums.phoenixrising.me/index.php?threads/food-and-chemical-sensivity-and-allergy-shots-drops.21254/ http://forums.phoenixrising.me/index.php?threads/enzyme-potentiated-desensitisation.4860/#post-106097 I wish there were more about this (immunotherapy)...
  28. AbbyDear

    The Electrical Apocalypse: Can we avoid it?

    in 1990 i read the book "The Zapping of America" by Paul Brodeur cause i was concerned about the man-made signals back then, AM, FM radio wave, analog TV, radar, etc. Today we are bombarded by so much more, cell phones, wireless phones (1.9GHz, 2.4GHz, 5.8GHz), microwaves (ovens 2.45GHz)...
  29. AbbyDear

    Am I “Allergic to Life”?

    @JanisB Thanks for the answers.