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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. Stevew

    What the heck is going on with my vitamin D levels?

    How much were you taking to get up to 136? How much time between the tests (136 vs 60)? The half-life of 25(OH)D is around 70 days. When you were at 136 you stopped supplementing. Without supplementing you might go down to say 30. Then after 70 days you would drop down by (136-30)/2 = 53 ending...
  2. Stevew

    Serum Iodine low, is this a clue?

    There are a couple books to read. 1) The Iodine Crisis: What You Don't Know About Iodine Can Wreck Your Life by Lynne Farrow. 2) Iodine: Why You Need It, Why You Can't Live Without It by David Brownstein. They recommend the 24 hour loading test. You take a 50 mg (that is 50,000 mcg) pill of...
  3. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    Funding for study has been reduced I just did my 3rd interview and there was no blood draw this time. I was told that their funding had been reduced. They plan on continuing the full amount of time but without any more blood draws. Is it just me or has anyone else had this happen to them? Maybe...
  4. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    I made some posts a while back that may answer your questions. Check out #36 and #34 in this thread.
  5. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    I would like to know what is going on inside me but I am in no hurry until there is something they can do about it. Is there any benefit in knowing if you have XMRV or not?
  6. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    I was supposed to have my blood drawn and phone interview today but because the blood draw was postponed the phone interview is also postponed. I was able to ask some questions though. They are trying to correlate the answers to the questions with what they find in the blood. They are looking...
  7. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    My fatigue level is not too terribly bad (compared to some of the others on this forum). When things are going well I can ride my bike for 15 minutes once or twice per week. If I overdo it I will "get the flu" and it will take two months to get back to "normal." During that time I will have a...
  8. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    This is a great question, I can't believe it never occurred to me. Must be my $%@# CFS brain fog. I don't know the answer but you asked for our thoughts so... My first guess is that they want to see if there is a correlation between the expression of the HERV-K18 env gene and the EBV's...
  9. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    Good call. I have watched some of the Berkeley courses titled "Physics for future presidents." This is a great course for most people because they don't make you do much (any?) math and you still get to be smart.
  10. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    Retrovirus 101 DNA is the double helix with the C, G, T and As. Each chromosome contains a long strand of DNA. There are 46 chromosomes, 23 from Mom and 23 from Dad. A segment of DNA that codes for a protein is called a gene. Each chromosome's long strand of DNA has many coding regions...
  11. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    Herv-k18 Previously I asked if all of the HERV-K18 proteins are being made (in CFS patients) and if the (HERV-K18) virus is being assembled. I found the answer in this 2004 article: http://jvi.asm.org/cgi/content/full/78/14/7852 Only one protein is being made. It is the env gene - one of the...
  12. Stevew

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    New member / HERV-K18 specifics You can add me to the list. I am in Florida. It has been over a year since I was first contacted. My first blood draw will be in a couple of weeks. Does anyone know anything about HERV-K18? I understand there are 3 variants and one is more likely to cause CFS...