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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. P

    B12: a simple 5-second poll for everyone

    I never felt a cyanocobalamin shot or supplement. Turned out I'm a non-secreter and some of us have to do the injections. The hydroxycobalaman hit the spot. Sorry for the spelling errors. I can't figure out what kind of test would be the equivalent of the mma with the B12 for folate. A regular...
  2. P

    Patient privacy and confidentiality in relation to DNA data under risk?

    I put it off the testing because of privacy until I read on a forum that if they (they? meaning insurance co's, medical facilities, on and on) want your DNA it's no problem to get it. The forum member (and TV) said that once they get that blood from a test or whatever it's theirs, to do with as...
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    High aldosterone and low ACTH means?

    Hi @Gingergrrl ! No, no endo, we are kind of low on docs right now. I'm on HC right now because my morn. cortisol stayed right around 4. However, I passed the ACTH test so I don't know. Would love to get off them mainly because I can't get regulated. I think the Aldosterone has to do...
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    Increased CD4/CD8 ratio as a risk factor for critical illness in covid19

    Yup, I shouldn't have commented, just didn't want to look them up. Seems like they're all bad news.
  5. P

    Increased CD4/CD8 ratio as a risk factor for critical illness in covid19

    @pattismith , those sound like genes.
  6. P

    Moderate nerve inflammation in both legs

    @Nanni , I have that. Mine is either coming from my cervical (possibly) spine or maybe a rheumatism of some kind, or no telling what. Hopefully I'll be getting started with a knee replacement soon. Maybe she could take an MMA test for her B12 to see if it's getting in her cells.
  7. P

    High aldosterone and low ACTH means?

    May I add a little more info? The aldosterone has been climbing now way over the top, my cortisol has been dropping and the ACTH is < 5. If anyone knows anything I can find the renin, although the cortisol wasn't run it stays around 4 in the first morning draw. Thanks if you can. Paralee
  8. P

    High aldosterone and low ACTH means?

    I have tried to find this out but I have been at it a long time and maybe I'm not putting the right search words in. Anyway, going downhill and docs don't seem to think anything of it. I think I'm also hyperthyroid because it's growing and used to be atrophied but the FT3 isn't rising very much...
  9. P

    Adrenal Crisis?

    @sunshine44 , good luck. There's some things you can check and see what your body does at home, also. One is watching your pupils with a light in a dark room, and I can't remember more, but google and you should find them.
  10. P

    Adrenal Crisis?

    @sunshine44 , I think I'd get several morning cortisol levels taken between 8-9 AM. Also get an aldosterone and ACTH level with it.....several times if you haven't already. PM levels were normal in the hospital? Circadian rhythm? I'm wondering if you have any morning cortisol levels to compare...
  11. P

    Dante Labs

    @tiredowl , if you hit manage your kits it just goes to white and says close kit manager. They're supposed to be redoing their webpage so hopefully it won't take much longer. I don't know how long it's been like this though, if it's been this way a while, it may last a while longer?
  12. P

    Dante Labs

    @vaer , I sent it in November and they received it by the 15th of November of 2018.
  13. P

    Dante Labs

    @Silencio , thank you, that was the first thing I did but I wasn't surprised when it didn't work because I only have one. I've been all over the site since then clicking on anything I could see. Thanks for the answer, I would have continued on all nite…..sigh.
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    Dante Labs

    Hi! I have received an email from Dante Labs that my report is ready to download but I can't figure out how to do it. I can't find the place on the webpage. If someone has already done it I would really appreciate any help you can give me please. I'm so excited....but maybe shouldn't be...who...
  15. P

    My ACTH skyrocketed on Cordyceps

    @Iritu1021 , I think I'm overloaded with adenosine, from what I can tell from my variants. Thanks for letting me know. I think I checked this out before, and that's why I didn't go on with getting some. Thanks again. (I have the rare variant from AMPD1)
  16. P

    My ACTH skyrocketed on Cordyceps

    @Iritu1021 , don't know if you were speaking in general or to someone, but what does adenosine have to do with it?......dreading answer.....
  17. P

    My ACTH skyrocketed on Cordyceps

    Oh my gosh! I'm going to try some cordyceps! Having a 4-5 cortisol level in the morning is keeping me in bed trying to breath. Thank you!
  18. P

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    This is interesting, @BeADocToGoTo1 , I experience this occasionally and sometimes it is followed by sand. I was assuming it was oxalates. I think (actually been thinking) I need my pancreas checked out. Thanks for that info....and everyone's. Paralee I really need to think of everything before...
  19. P

    Any Ampligen updates?

    I just looked into this info better and finally figured out why certain doctor visits ended up as they did. This is so interesting. You can find the biosimilar names online, and all the scary stuff that comes with taking certain drugs in this line.
  20. P

    Transgenerational hypocortisolism and behavioral disruption are induced by the fluoxetine

    This may include all SSRI's?
  21. P

    Thyroid and glutamate connection

    @YippeeKi YOW !! , thank you, I really don't expect a whole lot from it, will have to pay a geneticist to analyze it if I can find one, but it might help in the future with the kiddos.
  22. P

    Thyroid and glutamate connection

    From what I can deduce, and may be wrong, is that my adenosine overfloweth. I've also been really hesitant on taking glutamate....thinking it turns into dopamine? I can't take inosine either, though. Still waiting on dante labs to send my whole genome, hoping it will do some kind of good.
  23. P

    Hashi's and bi-polar cortisol, is it possible?

    @Iritu1021 , I read your first page in the link, thanks for posting it. It fits and it doesn't, but never blow anything off w/o a lot of thought. My thyroid is atrophied, I have no choice, but still a lot of info. Is there a reason there's no #5? Or did I miss something (totally possible). I...
  24. P

    Doing a Whole Genome Sequencing (WGS)

    Sooooo......... I got pretty bad for a while but somehow a sinus infection can make you feel like death is knocking on your door, I honestly feel like there's more to it than that but.....now that I'm really ready (and capable) of sending off for a complete genetic test I've lost track of which...
  25. P

    Cordyceps - broad spectrum eliminated my joint and body pain

    Thanks @klynn , I did try again after a while but I think my body caught on to the cortisol thingy, assuming that's what it was.....so, onward and forward (slowly) waiting for something else. That's a good idea not to push it, though. Thanks
  26. P

    Video Dr. Byron Hyde - Enterovirus theory?

    Why am I wondering about secretors vs. non-secretors? Any possible connection? I have some things I'm wondering about that play both sides.
  27. P

    Cordyceps - broad spectrum eliminated my joint and body pain

    @klynn , thanks for that piece of info, I hadn't thought to start out with something without ingesting. I don't know how you determined 15%, but I got what you were saying. I tried inosine not too long ago, just about a fourth of a tablet, and it was a wonderful day, full of energy and mood was...
  28. P

    Cordyceps - broad spectrum eliminated my joint and body pain

    @klynn , it seems like when I find something to help, it is a supplement that brings down cortisol and I can't afford to go lower, I'm in the 4's first thing in the morning. Do you know what the side effects are?
  29. P

    Doing a Whole Genome Sequencing (WGS)

    @Snoozy , ,I was on NDT, but developed a neurofibroma in my neck and read some articles on how hormones can make it worse, so I switched to the synthetic T4 and T3. Watching my levels, still working on it. I think I'll do some more "shopping" in the DIO2 gene. Thanks for your post. I'm fatigued...
  30. P

    Doing a Whole Genome Sequencing (WGS)

    @Snoozy , I read your post and pulled up my DIO2 gene and I think I have the same one you do, mine is hetero, but that could still make a difference. I've always suspected my thyroid, it's completely atrophied now, so I've got to figure out what's going on up there, you know? I'm wondering if...