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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. Galixie

    Fatigue May Be the Wrong Term

    I came across an obsolete word on social media a few weeks ago that had me thinking; If I use this term instead of "fatigue" when talking to a doctor, they will be immediately clued in to the fact that they have no idea what I'm talking about. Which, at this point, feels like the first hurdle in...
  2. Galixie

    Is this an adrenal problem?

    Yes, I've had hydration IV's before. I was on florinef for about three years, but came off of it because of side effects. After that I switched to hydration IVs. At first they also contained vitamins, but I really didn't seem to get any benefit from the vitamins, so eventually I just did...
  3. Galixie

    Is this an adrenal problem?

    I had my follow up appointment. I didn't get to ask very many questions, so I'm still a bit puzzled. Here is what I was told about my results: I'm not perimenopausal yet (despite my age). DHEA can start going low as early as your 40's and that's "normal". But low isn't good, so it should be...
  4. Galixie

    Is this an adrenal problem?

    I haven't been to an endocrinologist in years. I'd have to find a new one. The ND who ran the am cortisol did run other hormone tests also. The only levels out of range were DHEA and testosterone. I believe the only one I'm missing is the ACTH test. She might order that one next. My follow up...
  5. Galixie

    Is this an adrenal problem?

    Ok, I will. :thumbsup:
  6. Galixie

    Is this an adrenal problem?

    I don't recall what I had originally searched, but there is definitely an established link between hypovolemia and adrenal insufficiency. This article dates back to 1970: https://academic.oup.com/jcem/article-abstract/30/2/252/2716021 And here is one from 2020...
  7. Galixie

    Is this an adrenal problem?

    I have not tried to replace testosterone. I did try low dose DHEA (which is actually difficult to find anywhere as the majority of what's available it much higher dose). I stopped taking that when it was suggested that it might be the cause of the polycythemia, but the polycythemia persisted...
  8. Galixie

    Is this an adrenal problem?

    I'm hoping those who are more familiar with the topic can help me figure out if I'm dealing with some type of adrenal issue (bonus points if you can also tell me what type, lol). I have been trying to manage presumed hypovolemia (presumed because actual testing isn't available for confirmation)...
  9. Galixie

    Plasma Volume Testing

    According to the internet, Daxor has a blood volume testing method, but I can't seem to figure out where any labs that offer it are located. I tried emailing the company almost a month ago to ask, and never got any response. :(
  10. Galixie

    Plasma Volume Testing

    Does anyone know where it is still possible to get blood volume (plasma volume) tested in the US? I'd be willing to travel, but would prefer to find something nearby. I'm in Washington state.
  11. Galixie

    Weird blood test results. Can you help interpret?

    I emailed the hematologist and asked which, of the raft of tests they did in September, ruled out relative polycythemia (the version caused by low blood volume). The response I got back was that there is no test to rule out relative polycythemia. So frustrating. The first hematologist dismissed...
  12. Galixie

    Inverse vaccine shown to reverse autoimmune diseases like multiple sclerosis and type 1 diabetes

    I wonder if this could also be used to stop the body from making excess antibodies to things such as EBV? I know the argument against it would be that, because it's a virus, you could get it again and become very sick. But I've also been told that high EBV antibodies can be a precursor to MS...
  13. Galixie

    Unicorn EBV

    They think it's chronic EBV even with a negative PCR? The hematologist quoted didn't believe in chronic EBV, so was disinclined to think that my results indicated that. My naturopath leans the other way, so I don't really know what to think. I did try acyclovir for a time years ago and it...
  14. Galixie

    Unicorn EBV

    Wow, thank you. I would not have guessed lyme as I have never been outdoorsy at all. If serology is a bit unreliable, how would lyme be detected?
  15. Galixie

    Unicorn EBV

    I just requested chart notes from 2016, which was the year I got a sort-of-formal diagnosis of ME/CFS based on my perpetually high EBV antibodies. I found this paragraph interesting, because I'm apparently a unicorn: "When I first got the EBV acute infection antibody profile back I was puzzled...
  16. Galixie

    Weird blood test results. Can you help interpret?

    Well hallelujah, I'm cured! According to a different hematologist's office neither secondary polycythemia nor hypovolemia are blood disorders! WTF? Not having enough blood while simultaneously producing too many red blood cells is not considered a blood disorder because it is caused by some...
  17. Galixie

    Weird blood test results. Can you help interpret?

    I really hate being gaslit by doctors. After doing a sleep study that disproved apnea, I just went back to the hematologist to ask how to handle having both hypovolemia (low blood volume) and secondary polycythemia. She asked why I think I'm hypovolemic. This a telling question for a couple of...
  18. Galixie

    Weird blood test results. Can you help interpret?

    Update: When I asked the hematologist to do further testing to either confirm or rule out her diagnosis of secondary polycythemia, I was told that they won't do any additional testing. They won't even see me again unless I can prove I don't have sleep apnea. I'm fairly certain this is not how...
  19. Galixie

    The Times 9th August 2023: NHS told to stop blaming ME Patients for being ill

    I question this: As the pandemic has made abundantly clear, just because a government agency has proclaimed something, it does not mean that all practicing physicians will adopt that same stance. My experience, in the US, is that doctor attitudes have not changed at all. Many still see it as...
  20. Galixie

    Weird blood test results. Can you help interpret?

    Update so far: My tests didn't rule out either of the two types of polycythemia. The hematologist was specifically looking at my erythropoietin level. If it came back high, it would be secondary polycythemia. If it came back low it would be primary polycythemia. It came back normal (right in the...
  21. Galixie

    Weird blood test results. Can you help interpret?

    Is it ok if I rant just a little about something I've encountered more than once that is so annoying? What part of a doctor's training makes them think they can look at test results and know from numbers on a page whether or not your symptoms are valid? I finally saw a hematologist about my...
  22. Galixie

    Weird blood test results. Can you help interpret?

    I got some odd lab results that I don't know how to interpret. They include elevated red blood cells and hematocrit but low mean corpuscular hemoglobin and low MCHC. All my iron panel looks totally normal. I can't figure out how it's possible to have too many red blood cells and not enough...
  23. Galixie

    What to do/take if sensitive to B12?

    I'm sorry that I am not very familiar with with the genetic issues. Even if I had been following the subject, any info I would've gleaned would be a decade out of date by now. All I really remember on that topic is that the body is normally able to recycle most of the B12 it absorbs. It's so...
  24. Galixie

    What to do/take if sensitive to B12?

    Yes. B12 is a very complex molecule. In order for it to be absorbed from foods, it must first be cleaved from the food source, then it must land in the duodenum and bind with a special protein, called intrinsic factor, which is produced by the parietal cells that line the stomach. It is then...
  25. Galixie

    What to do/take if sensitive to B12?

    You are right to address your elevated MMA result. I am surprised that your doctor didn't order further testing. This article goes into the some of the many possible causes for a B12 deficiency: pernicious-anaemia-society.org One of reasons to further discuss this with your doctor is that...
  26. Galixie

    Just Dermatographism or MCAS?

    I tried an impossible burger (it's plant based, so there's no beef). I'm happy to report that it filled my burger craving without causing an allergic reaction. :thumbsup:
  27. Galixie

    Just Dermatographism or MCAS?

    A bit of dark humor I thought of yesterday: New weight loss strategy idea: Nothing but burgers! Since ground beef is one of my very few consistent triggers, it'd be like bulimia but with a mast cell assist. Note: I am just kidding. No matter how frustrated I get with my weight, I would never...
  28. Galixie

    Are there any doctors who work with sleeping pills other than psychiatrists?

    It was a neurologist who prescribed sleep medicine for my insomnia (my insomnia was caused by a concussion though). Perhaps a neurologist can be of help?
  29. Galixie

    List of all your MCAS symptoms

    Itching Flushing Hives Dematographism Headaches Irritability Nausea Vomiting Diarrhea Fatigue Sinuses swelling shut Lips/tongue tingling Coughing Brain fog (so I'm probably forgetting some also) My triggers constantly change. The only consistent trigger I have is grass, which is...