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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. NilaJones

    Please, update re: HHV6?

    Wow, thank you folks so much! You are amazing! @Hip @gbells @Garz @Judee
  2. NilaJones

    Please, update re: HHV6?

    Thank you, @Hip ! Is there any current theory about why some of us have high antibodies, but are negative for indicators of active infection?
  3. NilaJones

    Please, update re: HHV6?

    Hi folks,! I would be so grateful if some of you could update me on the current thinking regarding patients who have high levels of antibodies to HH6, but are negative on PCR or T cell tests, and whether valcyte is warranted Back when I saw Dr deMierlier, 10 or 15 years ago, he said that he...
  4. NilaJones

    Full remission after 7 years of ME/CFS - What worked for me

    I'm so glad to hear this! Yeah I felt ironically a lot better when I had covid. So I know what you mean about the miracle cold Unfortunately then I got long covid and severe lung damage, so that didn't work out very well
  5. NilaJones

    Vitamin D levels not rising after high dose, why?

    When my vit D was super low, I had the same problem you do, not absorbing supplements well What worked for me was, in addition to the supplements, getting a special light bulb that emits the UV wavelengths we need to create vitamin d (but not the ones that cause skin cancer) These bulbs are...
  6. NilaJones

    Insomnia from oral cromolyn -- why???

    Hmmm... I don't think I have any intolerance to salicylates. I looked up a food list and I am fine with most of the foods listed. (I've done extensive elimination testing.) I didn't know that about NAC! Thank you so much, @Krokus , for trying to think through the fog! And please let me know...
  7. NilaJones

    Insomnia from oral cromolyn -- why???

    Hello folks :-). It has been a long time ! I now have quite severe lung damage from covid in 2020. Am on inhaled steroids, and supplemental oxygen. I decided to give oral cromolyn another try and I'm absolutely amazed to find it helps my lungs! Ramping up, the lung improvement started when...
  8. NilaJones

    Oxaloacetate. I am joining a study. Maybe you want to try

    Hello everybody! I haven't been around much lately. But I heard the news about oxylacetate, and I came here to see what you all had to say about it. I'm excited about this because the very first thing that I ever found that helped me was eating large quantities of green leafy greens everyday...
  9. NilaJones

    Survey suggests post-viral fatigue form of long COVID might be the most common subtype

    Hello everyone :). It's been a while since I've been around! I have long covid and am fairly active with the community. I don't know a single LC person who doesn't have all three of these supposed subtypes. I think it is may be impractical to ask people to separate themselves into those three...
  10. NilaJones

    I need feedback about explaining illness to others (specific incident)

    I think people are afraid to ask, but they like to have some kind of a label. As for how much you should push yourself physically, I don't know an answer to that. I certainly understand that you need to take care of your soul, as well as your body, and that sometimes it is worth it to use up...
  11. NilaJones

    I need feedback about explaining illness to others (specific incident)

    I have EDS, so I usually say, 'I have a genetic disorder that affects my joints, my immune system, and my brain.' 'Genetic' is the only part that people care about. I can see the change in their eyes when I say that word. It tells them that it's not contagious, and is not going to get better...
  12. NilaJones

    From brain fog to clarity in 30 minutes

    Nicotinamide riboside works topically, too, in case anyone else finds that useful. It's a very powerful supplement for me! I initially tried 50 mg, which turned out to be way too much. I couldn't stop working :-). I'm experimenting with dosage. So far 3 topical doses of about 2mg each, a few...
  13. NilaJones

    'Good' vs. 'bad' energy increase from supps?

    Do you feel like some supplements give you an energy increase that is good for you, and others give an energy increase that is bad for you? Or am I the only one who experiences it this way? :-). For me, the good kind of increase is one where if I take the supplement everyday for a couple of...
  14. NilaJones

    Other people's guilt about 'wearing me out'

    As for why people feel guilty, I think it's because they feel like they are not that wonderful, or important, that you should spend your precious energy on them. But it might take a lot of energy for you to persuade them otherwise ;). Personally, I feel like social interaction is really...
  15. NilaJones

    Other people's guilt about 'wearing me out'

    Do you feel the way I do, that when at the end of your energy it's hard to navigate social complexity? If so, maybe you could stop a little earlier in order to have the energy for that, and/or plan ahead some phrases or sentences to say that will mollify them more. For example, instead of...
  16. NilaJones

    Vitamin D supplementation causes worsening of symptoms?

    You could try using a special light bulb to produce vitamin D, instead of oral supplements. They market them for lizard owners, because lizards need them. They're pretty cheap. I use one. The UV light n't good for your eyes, and I find it all so unpleasant for my eyes. The lamp is only warm...
  17. NilaJones

    Grocery Delivery--Target (US) and other options

    Tania, I am sorry you are having such a crappy time :(. Something that I have done in different locations is hire people off of Craigslist 'gigs' section. You will find people advertising errand running and similar, although they usually ask pie in the sky prices. I find it is better to...
  18. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    Thank you so much! Lots of useful info on that page about things that could mess up my test, too. Good to know.
  19. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    I found quite a few papers, also ones citing EBV, etc. But if you find some contrary ones, let me know ;).
  20. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    The answer is that they have the same receptors (which they probably use for different purposes). For example, see this paper: Thyrotrophin (TSH) binding sites on Yersinia enterocolitica recognized by immunoglobulins from humans with Graves' disease. P Heyma, L C Harrison, and R Robins-Browne
  21. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    Well, KDM said that the Yersinia was an active infection and not just old antibodies. Maybe @msf can shed some light? I am working on getting thyroid antibodies tested, and saliva cortisol (does anyone know who has the best price on that?) Have you read up on how the antibodies that attack...
  22. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    KDM tested for it. Not sure if it was the poop or blood test.
  23. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    Here is a 2015 list I found, abx that kill yersinia. Do any of you like or hate some of these for me? Y enterocolitica is usually susceptible in vitro to aminoglycosides, chloramphenicol, tetracycline, trimethoprim-sulfamethoxazole (TMP-SMZ), piperacillin, ciprofloxacin, and third-generation...
  24. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    Hello all -- I was too sick to post for a few weeks. Yes, @CFS_for_19_years , you are correct -- it is 0.2. I cannot even read right :(. I have been trying to do some reading on the issue, though, and I found that there is new evidence that there is a connection with my yersinia bacteria...
  25. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    Well, I would like to hear more about that, from you and anyone else! I don't know muh about it. The lab flags it as low, as does my GP.
  26. NilaJones

    need a dummies guide to folinic acid

    As for the folinic, what are the inactive ingredients in the pills? Could you be reacting to one of them?
  27. NilaJones

    need a dummies guide to folinic acid

    A potassium pill has about as much potassium as one large bite of a potato, so I suggest you not worry too hard :). You can also dissolve the pill in a glass of water, and just drink a little, then see how you feel. It will take effect within minutes.
  28. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    Thank you, @daisybell and @caledonia ! Caledonia, I was just reading about mercury yesterday, including some of your posts. I seem to be a good candidate, as I have a LOT of fillings.( I take super good care of my teeth, but they get cavities anyway. It may be EDS relsted.) I don't have...
  29. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    Thanks, @barbc56 :). I definitely do plan to treat the Graves. LDN is a treatment for Graves. I am asking whether folks here think it might be the best one to start with.
  30. NilaJones

    Low TSH, Graves, LDN, B12 intolerance?

    Hi everyone :) I have been worse this year, and especially the past few months. I was finally able to get an appointment with my primary care doc. She tested me for a bunch of stuff, and found TSH was low at 2. Retested after 3 weeks, same result. I have never had thyroid issues (that...