• 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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  1. starlily88

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

    To Daffodil - I have severe gastroparesis/colonic inertia and bad IBS-C. What I don't understand is how are you or anyone getting testing like fecal calprotectin, Zonulin, sCD14 to check for leaky gut? I have gotten increasingly worse stomach/colon wise since having major surgery. Not...
  2. starlily88

    My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

  3. starlily88

    If you just need to talk to someone: Phone/chat/email support available to patients and carers

    Emma Rose - I belong to Phoenix rising for awhile. But how did you get a counselor to speak to? I have gone thru pages on here - can't find how to get counselor. Also need help on housing issues - I need to move now and it's very hard to know how to do this. Let me know, thanks Starlily
  4. starlily88

    If you just need to talk to someone: Phone/chat/email support available to patients and carers

    Thanks but when you hit URL for REDDIT chat - there is no telegram chat - just a bunch of them, when I downloaded one most specific - there is no cfs chat.
  5. starlily88

    If you just need to talk to someone: Phone/chat/email support available to patients and carers

  6. starlily88

    Dr Patterson on Long Haul Covid vs ME/CFS

    Hip I just read about Patterson so know nothing. But articles on him say he is starting to "treat" Fibromyalgia and CFS" patients. So being a virologist wouldn't he know the difference between long haulers and CFS/ME?
  7. starlily88

    Whole Body PET Scan

    A simple chest x-ray most of times will NOT show lung cancer - sometimes shows a black spot which most see as scar tissue or a fungus. The standard to show any lung cancer in the States in the CT chest Scan.
  8. starlily88

    Whole Body PET Scan

  9. starlily88

    Whole Body PET Scan

  10. starlily88

    Whole Body PET Scan

    Not sure what you mean - I was told to do PET scan - (didn't) but the PET included doing an iodine isotope and barium to light up "cancer" spots in whole body, lungs, stomach, etc. No one called it a whole body PET scan. Bad thing is - a lot of false positives, and it sometimes lights up lymph...
  11. starlily88

    Whole Body PET Scan

  12. starlily88

    Rivka Solomon speaks on NPR Newshour tonight (4/22/21): ME/CFS and Long COVID

    Thanks Sushi. It was wonderful to see ME/CFS being presented by Judy Woodruff on NPR, and Rivka as always is great speaker for us.
  13. starlily88

    Long-term Disability (LTD) Appeal was denied (US)

    Thanks for clarifying this point. I was very lucky, as my company was young, and the owners had just gotten LTD due to a few female employees getting ready for a baby and had to take 6 weeks off, so perhaps the STD paid for their leave. When I got ill, it was in place. You are correct in my...
  14. starlily88

    Long-term Disability (LTD) Appeal was denied (US)

    Thanks for this case. I read most of the court case. Brian Vastag went from a Science Reporter at The Washington Post to a temporary, I think, test subject at NIH - I was particularly happy that Mr. Vastag wrote to NIH to tell his story - as NIH gives the least money to research ME/CFS. I...
  15. starlily88

    COVID Vaccine Only Provides Transient Protection

    The vaccine does stop one from getting COVID. And if enough Americans get it, there is Herd Immunity, which does in fact stop the spread of the COVID Sars-2 Virus. That is the point of a vaccine - when all babies had smallpox vaccine - it stopped smallpox in the world. When children got the...
  16. starlily88

    Had my first COVID vaccine January 18th

    Yes waiting for your results on February 10th - hoping it's mild reaction for you.
  17. starlily88

    COVID Vaccine Only Provides Transient Protection

    The people that have done trials 1,2 and 3 haven't gone past the 8 month mark right now - so it's too soon to tell. More than likely all COVID vaccines will have to have "boosters" - the virologists don't know yet if this will be a yearly Vaccine just like the flu. I took the Jonas Salk...
  18. starlily88

    COVID Vaccine Only Provides Transient Protection

    It is speculated that the 5% from Pfizer and Moderna vaccine that don't "take" - they will still have some protection - if they get COVID, that 5% should get milder case, so far this is what the trials have shown. Pfizer has a 95% effective rate, Moderna has 94.1% effective rate.
  19. starlily88

    Had my first COVID vaccine January 18th

    Thanks Sushi for posting Fauci's 2nd response. I looked at the tweets - most got what we (or at least I) have everyday, fatigue, chills, achy muscles. If we get reaction, it will be just like our ME/CFS!
  20. starlily88

    Had my first COVID vaccine January 18th

    Sushi, I had on my normal 2 masks - goggles you wore, genius. I should have worn my Face shield too. Sorry you had that reaction - but it is good - shows vaccine working. The Reddit report on the CFS person on 2nd shot- I truly hope we don't feel like we're dying, OMG, scary.
  21. starlily88

    Had my first COVID vaccine January 18th

    Thanks Sushi. I was also at large hospital. I was there by 8:30 AM so had no wait at all. After the shot - I had to sit in the same large room on folding chairs while others got vaccine. It was fine at first - maybe 10 of us spread out. But after 15 minutes the people seated after vaccine...
  22. starlily88

    Long-term Disability (LTD) Appeal was denied (US)

    But so far NIH has not classified ME as a mental disorder, they view it as a real physiological disease. Unless something changed......................... Yes, I paid my disability lawyer nothing - it was contingency basis.
  23. starlily88

    Had my first COVID vaccine January 18th

    Dear Rebeccacare - I assumed I might get vaccine around March 1st. So when my Internist early Friday morning January 15th told me I had to do vaccine on Monday January 18th - I went into tailspin, just not prepared. Biggest concern is my Anaphylasis I have had whole life. This scared me the...
  24. starlily88

    Had my first COVID vaccine January 18th

    The "pain" I mentioned on right/left side of temple was absolutely nothing. I am a senior, have history of migraines - this was NOT a headache. The pain was NOT scary - it was minimal - and perhaps happened 4/5 times for 3 seconds at most. It went away as quickly as it came. I have...
  25. starlily88

    Long-term Disability (LTD) Appeal was denied (US)

    So sorry for what happened to you. I got mine long long time ago. I live East Coast, and got a private lawyer (he and other guy only did SSA disability claims). He was terrific, and my fee would only be a % of what I got from SSA - long story - I was on my work's disability, so I didn't apply...
  26. starlily88

    Had my first COVID vaccine January 18th

    Have been scared to get COVID vaccine. I have anaphylasis. CDC recommends anyone allergic to any ingredient in the vaccine to not take it. Called Internist to see what ingredients are in it, which can give anaphylasis. It's Polyethylene Gycol - main ingredient in Miralax. Got Moderna vaccine...
  27. starlily88

    Colchicine as a potential anti-inflammatory and COVID-19 treatment

    I can't remember the dosage, see if I can find out. When this happened to me this drug was used for GOUT. It was never to be used long term. It does lower one's white blood cells, and over time that increases. My cousin told me he was amazed that the head of Oncology had to call the CDC...
  28. starlily88

    Colchicine as a potential anti-inflammatory and COVID-19 treatment

    I was not impressed with this study, because of course it was not a double blind trial, and there was not statistical proof that colchicine changed what outcomes they claim. This is a drug which was used for gout - is not supposed to be used for any length of time. My dr put me on colchicine...
  29. starlily88

    Colchicine as a potential anti-inflammatory and COVID-19 treatment

    I was not impressed with this study, because of course it was not a double blind trial, and there was not statistical proof that colchicine changed what outcomes they claim. Colchicine - being "tested" for 42 days is not sufficient to see anything. This is a drug which was used for gout - but...
  30. starlily88

    Persistent sore throat (PVFS)

    Thanks for your post. I got mononucleosis - and never got better. Extensive testing showed high titers of EBV virus which includes an HV6 virus, high T cell counts, B cell counts low, etc. I also had quite large lymph nodes in my neck. I have difficulty in swallowing which is worse now -...