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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. used_to_race

    Some long-haulers say symptoms subsiding after vaccines - Washington Post March 16, 2021

    I received my second dose of the Moderna vaccine one week ago. No tinnitus. Also no change in my (mild) ME/CFS symptoms, such as constant sore throat, mild fatigue, mild POTS. For anyone who's interested, I was pretty concerned the vaccine would hit me hard in terms of secondary effects, but it...
  2. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I wanted to wake this thread up again real quick. I posted back in September of last year that I was feeling fairly symptomatic again. This was after 4-5 months of feeling 90-95% recovered. I'd like to report that I've again been feeling 90-95% recovered since probably early January of this...
  3. used_to_race

    Escaping the metabolic trap (IDO)

    I wish I had something tracking my HR and HRV all day. It would be so much easier to look at the data and correlate it with, say, a symptom journal. I think Apple Watch is going to support oxygen saturation soon as well as these other quantities.
  4. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    EDIT: I'm going to PM you @Swim15 because this discussion is getting off-topic for the thread
  5. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I'm not sure there's good evidence for that. Certainly there is an abnormal response to an infectious trigger in a large majority of cases. But other than some decades-old studies on positive enterovirus PCR in a group of ME/CFS patients, I don't think there's really any good evidence for active...
  6. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Would you have a link to this research? Also wouldn't this be dependent on there being, you know, an active viral infection?
  7. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Wanted to update everyone here because I have been feeling symptomatic again for a few weeks. I think it was caused by doing a number of hard bike rides in pretty hot conditions, which I should have avoided. Waiting to see if it will gradually subside or this is a more medium/long-term decline...
  8. used_to_race

    Escaping the metabolic trap (IDO)

    I live in the US and have owned a Macy Pan for about 8 months. So far it works well, the only complaint I have is that the frame retention system isn't as good as the one OxyHealth has. But you could DIY this with zip ties pretty easily. The other complaint I have is that there was a...
  9. used_to_race

    NIH: Citizen Scientists Take on "Long Haul" COVID-19

    It's good that you point this out but I think this is a little misleading. Most of the studies in this long list look at antibodies, which are not evidence of persistent infection in any way. The detection of viral nucleic acid is somewhat more concerning, but it's not the gold standard for...
  10. used_to_race

    NIH: Citizen Scientists Take on "Long Haul" COVID-19

    From the article: It's not really a false-negative though - there is just a really low level of virus below the sensitivity of the test. They've cleared the virus and the symptoms caused by the immune system. These people are no longer infectious, even if they still feel terrible. Really...
  11. used_to_race

    $700 mold toxin test

    I wouldn't really be able to say anything about those levels other than that they seem pretty low to me. Could it be that these particles are coming in from the surrounding area outdoors? Did you just have the basement tested or other areas in the house?
  12. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I didn't DIY my own chamber but I've repaired a hole in one of the more traditional commercial versions using flexible epoxy and PU coated fabric. This seems like it would work but after the parts, the pump, and all the work involved you're still looking at probably close to $1000 or more...
  13. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    You're just going to have oxygen toxicity more readily if you're frequently using 2 or more atm. You can run the numbers but I don't know how safe it is to be in 2atm with supplemental oxygen for more than 30ish minutes at a time. When I did the calculation for 1.3atm and guessing the % oxygen I...
  14. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Why do you want something in the 2-3atm range? Is there any specific evidence you've seen that this is a more effective range?
  15. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Did you get a home chamber? Which brand?
  16. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Yeah I would say that I'm about 90% back to normal. My doctor thought there might be some evidence I have an inflammatory process going on. Cytokine results and most inflammatory markers were mostly normal and I didn't test positive for any specific autoimmune pathologies, but there were some...
  17. used_to_race

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Just wanted to check in. I'm still doing great, for anyone following this thread. I've considered making a separate thread to document things. I take hydroxychloroquine and fludrocortisone daily, and do HBOT 3-4 times a week for 45-90 minutes each time. There's no more soccer due to the pandemic...
  18. used_to_race

    Intravenous Cyclophosphamide in ME/CFS, An Open-Label Phase II Study. (Rekeland, Fluge, Mella, 2020)

    I think n=6 for severe patients isn't enough to say anything conclusively, especially since two of those n correspond to incomplete or nonexistent data. I wonder what the HLA types were among the 4 severe non-responders.
  19. used_to_race

    What helps you with POTS or OI?

    Fludrocortisone helps me sooo much. Went from mild-moderate POTS symptoms to zero POTS symptoms almost all the time.
  20. used_to_race

    Dr. Ian Lipkin in China being interviewed about the novel coronavirus (COVID-19)

    Dr. Lipkin's colleague, Dr. Vincent Racaniello, hosts a weekly podcast called "This Week in Virology" that has been discussing the new coronavirus extensively over the past month or so. It's been really informative for me to listen to this discussion, linked here
  21. used_to_race

    Dr Paul Cottrell,Harvard, on the the alleged bio-engineered Coronavirus.

    This guy isn't a medical doctor or even a scientist btw, his doctorate is in finance management (Linkedin) so I wouldn't really trust anything he has to say about science. It's also really cringey that he's decked out in Harvard gear, comes off as him trying to seem credible by wearing a hoodie...
  22. used_to_race

    Question about the Lerner protocol

    From what I recall, he would always say that if CMV is an issue, then only Valcyte would work. I don't think anybody ever took both Valcyte and Valtrex at the same time.
  23. used_to_race

    Has Chia helped anyone we know?

    This always gets brought up in these discussions but there are underlying assumptions that haven't been validated. This is just according to Dr. Chia's own anecdotes, right? How many people have actually been treated for ME/CFS using interferon and how many of those cases have been documented...
  24. used_to_race

    Has Chia helped anyone we know?

    I can recall a few specific users on here saying they had a noticeable improvement, at least temporarily, with Dr. Chia's treatment. There was one lady whose child was being treated by Dr. Chia and she said he had improved as well. Overall maybe 3 or 4 users on this board who specifically posted...
  25. used_to_race

    Hanson Study: ME/CFS T-Cell Metabolism & Cytokine Associations 2019

    Here is a link to the paper which I haven't read. Looks like three key sets of findings here: Dr. Hanson and her colleagues did not see significant differences in mitochondrial respiration, the cell’s primary energy-producing method, between healthy and ME/CFS cells at rest or after...
  26. used_to_race

    amazing recovery

    Ugh, you're wrong. It is an additional $50 a year. From the site: For every "friend who got better" there are dozens on here and IRL who have tried stuff like this and feel like they were scammed. Why is it that none of these people have published their methodologies in the scientific...
  27. used_to_race

    amazing recovery

    That first one costs $300 initially and another $50 a year thereafter. They even charge an extra $100 for a USB stick with the videos on it... All the testimonials and recovery stories could be made up obviously. Claims to be based on neuroplasticity which is a huge buzzword phrase and an active...
  28. used_to_race

    HBOT for ME/CFS/CFIDS

    Typically ranges from 45 mins to 2 hours, but most people probably do an hour. It's not "trying" to simulate anything. It's high pressure, so if anything, it approximates an altitude far below sea level (maybe 3000m).
  29. used_to_race

    Help me make sense of my GPL-MycoTOX results!

    The classic response to all your moves not changing anything is that the toxins are embedded in your clothes and other possessions, so if you took those then you're screwed anyway. I'm not sure how true that is but if you truly had a mold issue then you probably at least want some new clothes...
  30. used_to_race

    HBOT for ME/CFS/CFIDS

    Basically the two inputs are the compressor and the concentrator, and at the other side of the chamber there are usually a couple release valves that start to open at a certain pressure (for most of the soft chambers it's 1.3ata, or really just below that). I think it's designed that way so that...