• Welcome to Phoenix Rising!

    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. R

    Does anyone have a ME-literate MD or DO in the Portland OR area for filing SSDI claim?

    Yes, @junkcrap50 , but those are also hard to find (MD or DO). By the way, I have even checked into Dr. Kaufman and Dr. Ruhoy in Seattle (3-4 hours away), and they are not accepting new patients. By the way, my wife, @PWR (PeacewithoutRest), is bedbound, and I am her sole caregiver. She is...
  2. R

    Does anyone have a ME-literate MD or DO in the Portland OR area for filing SSDI claim?

    Because i haven't been able to find a doctor, Oregon's DDS (Disability Determination Services) has set up a "Consultative Exam" for me with a doctor in early January. Here's a link describing this step. Not looking forward to this. Still hoping I can find a ME-literate MD or DO first
  3. R

    Does anyone have a ME-literate MD or DO in the Portland OR area for filing SSDI claim?

    Someone else is trying to help me with this, but I can't find any MD or DO who can help me file my SSDI. I have a N.D. for my regular doctor, but that won't help me with Disability.
  4. R

    Can anyone recommend a qualified ME-aware disability lawyer in Portland, OR area?

    Maybe this has already been posted here on Phoenix, but I am unable to find a M.D. or D.O. in the greater Portland OR area who is M.E.-literate enough to handle my SSDI & SSI claim. I am the original poster, actually, but I accidentally used my wife's account, PWR (Peace without Rest)...
  5. R

    NIH's "Accelerating Research on ME/CFS" Conference April 4-5, 2019 - livestreaming

    Thanks so much. I actually meant "transcript" instead of summary. I know that would take MANY pages and is probably not available. Thanks for the quick reply!
  6. R

    NIH's "Accelerating Research on ME/CFS" Conference April 4-5, 2019 - livestreaming

    Does anyone know if there is a written summary of the two-day conference available yet? I assume that it was supposed to be written. Anyway, they referred to it on the videos.
  7. R

    Honey for sleep

  8. R

    In Memory of Dr Annie Macintyre who passed away last night 24th November 2018

    We are so sorry for your loss @Countrygirl. We know how much she meant to you (and vice-versa). RWP + PWR
  9. R

    I think I have food poisoning, probably from Salmonella. (Don't order the hearts)

    @Murph Sorry to hear about this. I've had something similar before. RWP
  10. R

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Can anyone post the handouts that were available this morning? I didn't get a chance to download them, and now I can't see them anymore. I DID find the agenda and Dr. Davis's letter, but I assume there's more, like there was last year. RWP
  11. R

    One of The Most Widely Used Antidepressants Has Just Been Implicated in Breeding Antibiotic Resistan

    A Quick clarification: I realize that the study was conducted in vitro, not on patients. So I was theorizing why they even bothered to do so, and I wonder if they already have some good hunches how the in vivo study (with patients) will turn out. Also, since the article postulated that the...
  12. R

    One of The Most Widely Used Antidepressants Has Just Been Implicated in Breeding Antibiotic Resistan

    While there may be many types of drugs that affect the gut, there is a specific relationship to SSRI's and other similar drugs and the gut due to the key regulation of the neurology of the gut muscles via serotonin. @Judee posted this article on her thread concerning her difficulty while taking...
  13. R

    Mayonnaise/vinegar?

    It's possible that the brand was inferior either in initial quality or storage or ingredients. We use only 1 (U.S.) brand, and it's expeller-pressed canola oil. That's significant because solvent contamination (from extracting the canola oil from the seeds) can encourage pathogenic organisms to...
  14. R

    Significant association of DNA variants with self-reported ME/CFS (Chris Ponting blog)

    So, I guess what this means is that if you have the genetic defect, you are less able to use ornithine and less able to detoxify ammonia. This would therefore make you less able to fight bacteria and parasites due to being unable to deal with their waste product. RWP
  15. R

    Significant association of DNA variants with self-reported ME/CFS (Chris Ponting blog)

    My wife's cancer doctor, in her 1999 book, says (p. 68), " . . . bacteria found in common dirt must not be allowed to enter with food and invade you. They make amines that remove the 'brakes' on cell division. They also make ammonia. Ammonia is extremely toxic to living cells, giving you fatigue...
  16. R

    Omer Rains' interview with Dr. Dan Peterson

    Thanks @Gemini ! This interview had a number of interesting tidbits that related to research I've been doing, so it was very helpful. RWP
  17. R

    NOTICE: All ongoing prayer requests will be done in a Conversation instead of here.

    Hi All, Since our members preferred that, we will be using the Conversation to pass along our prayer requests on an ongoing basis. If you are a new member or an existing one who's not involved in that Conv., please contact RWP (Rest without Peace) to request addition into the Conv. RWP (Rest...
  18. R

    Genova Diagnostics Billing Practice

    This person we know was on Medicare, and the Dr. told her that it would cover the rest of the $ for the test if she paid $150. Actually, what happened is that all Medicare paid was the $150 and she was stuck with the bill for several thousand dollars to pay! This concerns me again because my...
  19. R

    Genova Diagnostics Billing Practice

    I'm curious to know if there are other patients, in addition to one specific person (not me or my wife) that I know of who had trouble with that test regarding billing. RWP
  20. R

    Genova Diagnostics Billing Practice

    Was the test for which you were hassled the NutrEval one or another? Just curious. RWP
  21. R

    #MEAction funds 2 research assistants with VanElzakker

    @JaimeS , Director of Scientific and Medical Research for #MEAction, sent out an email to announce the funding of these 2 research assistants. It is always encouraging to see the interest of the future doctors/researchers in our disease...
  22. R

    Virus-Induced Interferon-γ Causes Insulin Resistance in Skeletal Muscle and Derails Glycemic Control

    Thanks for thinking for me! My brain is just now starting to work again! :) RWP
  23. R

    Trying out Marine Phytoplankton

    @kitaara So glad the Uma-Core is working well for you! Yes, supplements can add up to a huge expense, especially when they're not covered like pharmaceuticals. RWP
  24. R

    Virus-Induced Interferon-γ Causes Insulin Resistance in Skeletal Muscle and Derails Glycemic Control

    @Gondwanaland What connections to ME are you thinking about? My brain is too tired to focus right now. RWP
  25. R

    Trying out Marine Phytoplankton

    @kitaara My wife, PWR (Peace without Rest), takes 1 drop (not dropperful) daily, and she's done that for years. I researched it and found that it supplied nutrients not found in many other types of "sea" supplements. We use the Sunfood brand. On amazon, people say it's way overpriced...
  26. R

    IBS and Serotonin

    @Judee That link you provided was very helpful. I was diagnosed with IBS in 1988, about 6 months before my "CFS" diagnosis (that's what it was called then). I have found quite a bit of help through the years, but it's still a weak area. I look forward to sharing more info with my PR friends...
  27. R

    IBS and Serotonin

    @Judee Yes, we've had poor results with 5-HTP (regarding effectiveness for sleep---actually backfired), and so that's no surprise. We look forward to reading more about this, using your link. RWP + PWR
  28. R

    Prayer Requests & Praises for Nov/Dec

    @Pen2 We totally understand, but please hang on, for all of us. Thank you for opening up. However, your feelings, while understandable, are not the true reality. As you said, the true reality is your relationship with Christ. But Satan is attacking you the way he does all of us, feeling...
  29. R

    B12 supplements increase cancer risk in men

    @Wonkmonk I should add a point #4. This is a key point. I will elaborate more later with citations. 4. Pursue a professional-grade herbal antiparasitic program that kills a wide range of classes of parasites, such as Ascaris and other B-vitamin-depleting organisms. Dr. Clark's 1999 cancer...
  30. R

    B12 supplements increase cancer risk in men

    @Wonkmonk Good points. I have some more ideas that I will share later. Again, I didn't discourage B12 usage (or any B vits), only indiscriminate, long-term use with the wrong mindset. I have recently taken massive doses of B vits (12 caps/day of Thorne Basic B complex, which amounts to 4-5...