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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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Search results

  1. S

    Elevated ACE2 & MASR autoantibodies, what to do for them?

    Hmmm. I can't fly, so going to Germany would be out. And the cost is a factor, also.
  2. S

    Elevated ACE2 & MASR autoantibodies, what to do for them?

    I did a GPCR+ Autoantibody Panel and it came back that I have antibodies to ACE2 and MASR. I have a history of hyperadrenergic POTS, where my b/p goes up when I stand(and for other issues, too, like eating wrong foods), but sitting it is very normal, like 110/70. I am mostly housebound and...
  3. S

    OAT - Organic Acid Testing - is it useful?

    So, I know this is an old thread, but bringing it back up because I was re-reading my old 2018 OATS test results. I had elevated malic, fumaric, and citric acid results. Their interpretation says if all of these three are elevated, it could point to a Cytochrome C Oxidase deficiency, which...
  4. S

    Elevated endogenous Serotonin cause of my fatigue?

    I have been tested through a neuroendocrinologist for most things, and have had a few fancy scans(octreotide, gallium dotatate) to look for neuroendo. tumors, and nothing shows up. That's what makes me think my gut just over produces serotonin.
  5. S

    Elevated endogenous Serotonin cause of my fatigue?

    No, no one has tested my dopamine levels.
  6. S

    Elevated endogenous Serotonin cause of my fatigue?

    A couple of years ago, my functional medicine doctor ran a lot of labs, one of which was serotonin. It came back elevated, and I thought little of it. I do not take any meds that would affect serotonin. A year or so later, I decided to look into it again. I realized foods that increase...
  7. S

    Hyperpigmentation/ do I have ME?

    Definitely have a doctor test your ACTH, which when elevated, causes hyperpigmentation. Of course, add a cortisol with that, all around 8 a.m.
  8. S

    Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    I saw this posted elsewhere, so sorry if it has been posted and I didn't see it. https://www.frontiersin.org/articles/10.3389/fmed.2021.628029/full?fbclid=IwAR0pe0_2Zu-KYqsh1DtqhgsgjLEaPEnwLcmBKhxqyv2PtsMyQfWRSZj7EmE I couldn't read it all just now, as my brain doesn't want overload today, but...
  9. S

    Too many ME/CFS hypotheses! Where do you lean? (POLL)

    I am going through with the path of Berg's hypercoagulation theory at the moment. Hint was I felt better when in the hospital and given anti-coagulants. After years of noticing this effect, I finally saw a doctor who understands it and did the initial testing and found I have hypercoagulation...
  10. S

    Update on my testing for Berg theory

    I had written about a month ago that I felt better on blood thinners twice while given in the hospital over the last 10ish years. I ran into mentions here about the Berg hypercoagulation theory, read up on it, and made an appt. with a functional medicine doctor that has mentioned it as...
  11. S

    Elevated serotonin?

    Anyone else have this? Level was 327 (56-244). If it is not caused from a carcinoid tumor, what could it mean here? ((I had a few fancy scans looking for neuroendocrine tumors a year ago due to my elevated VIP (vasoactive intestinal peptide) levels. Nothing was found)) I had wondered about...
  12. S

    Sticky blood & inflammation question

    Great story! I am going to be tested for "sticky blood". So, did you feel/think better after your blood was "thinned"?
  13. S

    Sticky blood & inflammation question

    The first time it was an injection in my abdominal fat, so maybe heparin?? The second time it was oral Xarelto that I brought home, but not sure if they gave me an injection before, during, or after my hip replacement surgery.
  14. S

    Sticky blood & inflammation question

    I have an appt. tomorrow with a functional medicine MD that addresses Berg's theory of hypercoagulation due to a hidden infection. All I know, and I've told my story before, is two times while in the hospital and received anticoagulant therapy for surgery and bed-bound stay, by the time I got...
  15. S

    Organic Acid Test (OAT) results – do we ALL show the Warburg effect?

    Thanks. I am seeing a functional medicine doctor in a month, and I was already set up to look for hidden infections. It will be interesting to see if finding and addressing that makes a difference. And yes, coffee helps me, but I can't do as much as I like or I don't sleep, which in turn...
  16. S

    Organic Acid Test (OAT) results – do we ALL show the Warburg effect?

    Thanks so much for pointing all this out! I appreciate that information I had done this test on my own, but had shown it to my functional medicine doctor at the time. They did not say anything about it. I am honestly not sure what kind of doctor might address this issue? I have not been...
  17. S

    Organic Acid Test (OAT) results – do we ALL show the Warburg effect?

    Here is mine. I don't fall into the pattern you mention, but have odd high numbers everywhere, so not sure what that may signify.
  18. S

    What if we do a "poor man's" home test for tryptophan, such as this?

    I posted my story(issue) a couple of years ago, and I posted it after reading that Phair was looking into the IDO theory. As I mentioned in my thread(will post at end), it rang a bell for me because I had been up kynurenine specific to my issues, and that is because I have left a blue ring in a...
  19. S

    Accidentally better on bouts with anti-coagulant

    Thanks for the links!
  20. S

    Accidentally better on bouts with anti-coagulant

    Did you have an infection that they found? Also, thanks for the describing the difference between aspirin and Xarelto, as that narrows down the "why" one works and one doesn't. So many clues.
  21. S

    Accidentally better on bouts with anti-coagulant

    Interesting. So do ME doctors test for a lot of possible infections? I could believe that I have an infection even though there are no outward signs, as I FEEL that malaise you get when ill. I've told many of my doctors that I don't have just fatigue, I have malaise.
  22. S

    Accidentally better on bouts with anti-coagulant

    If I remember correctly, all the tests were normal. Definitely negative for APS. She just wanted me to try the mast cell route, where you take different meds for it. I'm not sure I have it, so I didn't delve any further on that.
  23. S

    Accidentally better on bouts with anti-coagulant

    I do not remember the names, but the first was a daily injection, and the second was a pill, maybe Xarelto? (just guessing, as I looked at a list and that looked familiar)
  24. S

    Accidentally better on bouts with anti-coagulant

    (I posted this in a FB group yesterday, so some may have seen this there) I was thinking today about something. I have to give a little back history first. Over the last 20 years I have had lots of bouts of low blood sugar. I am not diabetic. So about 10 years ago I was in the hospital for a...
  25. S

    Vitamin C worsening symptoms (sodium ascorbate)

    I have gotten that same response for a couple of years trying Vitamin C. I finally read a few places that Vitamin C lowers cortisol(or clears it faster from the body), so I am assuming that is why I get so fatigued. I am already on the lower-normal range for cortisol when tested to begin with.
  26. S

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I didn't think to ask, but does good insurance generally pay for CCI surgery? I'm sitting here just assuming they would, if the doctor found an issue. I agree that invasive traction might be a great first step.
  27. S

    Labs finally point in the right direction?

    @jtex What was the real issue?
  28. S

    Raised Amino Acids in Urine

    Mine of those mentioned were normal. I did have elevated urinary Glycine and Aspartic Acid.
  29. S

    My first visit to see Dr Klimas and team (Success in the End)

    Have you been to the Mayo Clinic in Rochester, MN? I can't remember if I've read that somewhere or not. If not, it might be worth a shot to go to them. Technically, they are supposed to look at the whole picture and figure it out. I've seen some good stories, and I've seen some not so good...
  30. S

    C3/C4 at top end of range, what does it mean?

    I searched through the forum, and see most posts regarding this talk about people having low levels. Mine were literally a point or four from being over-range. I was being tested for all things autoimmune. What does that mean in the grand scheme of things?