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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. TracyD

    My experience on plasmalogens

    I don't have any reason to think that ProdromeGlia reduced inflammation that would show up in a blood test, but it greatly reduces my periodic limb movement disorder ('restless legs') and, more subjectively, significantly reduces my brain fog. Other pills have reduced my inflammation and had no...
  2. TracyD

    Is Apheresis an effective treatment for Long Covid and ME?

    Definitely, there are different types of apheresis, but I received heparin during the INUSpheresis.
  3. TracyD

    My experience on plasmalogens

    If the evidence for each seemed equal to me, I'd try the cheaper one first and then the expensive one, separately.
  4. TracyD

    My experience on plasmalogens

    To a large extent, our bodies are composed of cells. The outer wall of each cell is called its membrane. The membrane is actually complex. Plasmalogens are a type of molecule that make up part of the cell membrane, They protect the cell from different types of damage. They might do other helpful...
  5. TracyD

    Is Apheresis an effective treatment for Long Covid and ME?

    If, despite my experience, someone is interested in INUSpheresis, here is a partial list of providers and the prices, in Euros, that they quoted or had on the websites: Frankfurt area https://www.ganzheitliche-arztpraxis-kronberg.de/kontakt/ 4900 EUR...
  6. TracyD

    My experience on plasmalogens

    Despite the cost, I tried ProdromeGlia for two months. I took one softgel upon waking and another at bedtime. Right away, my 'restless legs' at night (technically, 'periodic limb movement disorder') seemed to go away, my brain fog was significantly weaker, and there were signs of greater mental...
  7. TracyD

    Is Apheresis an effective treatment for Long Covid and ME?

    Out of desperation, I tried INUSpheresis in Frankfurt recently. The treatment itself cost almost $6000, plus the travel. I had two sessions, with two days between them. I felt normal (not sick) after the first treatment, and this continued for three days - that is, though my return to the U.S...
  8. TracyD

    Vagus nerve stimulation - Nurosym device

    I used the Nurosym vagal stimulator for an hour a day for at least two months. I imagined that it had helped a little with my IBS, but my meticulous records show that it had no discernible effect - except on my bank account. However, I also do daily breathing exercises and take pills that...
  9. TracyD

    What's your first/last sign of PEM?

    I'm in the same boat. Somehow this question had never occurred to me before. Pacing, pills, and breathing exercises have reduced my PEM symptoms in number and severity. Like @Woof!, I used to have greater difficulty breathing (to be specific: expanding my chest/diaphragm to breathe) as an early...
  10. TracyD

    What's your first/last sign of PEM?

    Thanks for these answers! My last sign of PEM is difficulty lifting my arms in the morning.
  11. TracyD

    What's your first/last sign of PEM?

    To put my data-science lessons to work, I'm trying to develop an early-warning system for PEM. I would appreciate others' input: For some of us, there's a delay between overexertion (or whatever the trigger is) and the onset of full PEM. In my case, it's often 36-48 hours before the huge...
  12. TracyD

    IDO2, Autoimmune Issues, and Cancer

    Add me to the list: I'm T/T as well.
  13. TracyD

    Valcyte: Third time lucky

    Thanks for the comments and interesting links! Based on your scale, I guess I went from moderate to mild. On the other hand, I saw from the OMF's meeting last weekend that my pre-Valcyte activity was the same as at least one participant in the Severely Ill Study. Moreover, I have trouble...
  14. TracyD

    Valcyte: Third time lucky

    I've written a longish blog post on my varied experience taking Valcyte three different times using different regimens. The upshot is that a half dose has helped me significantly: "Valcyte by itself hasn’t come close to making me fully healthy ... But I’ve gone from maybe 25 percent capacity to...
  15. TracyD

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    The reference in the paper is pretty opaque. But, as far as I can tell, it refers to a drug (not BS-69) that isn't on the market.
  16. TracyD

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    The PDF link worked for me just now.
  17. TracyD

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    As far as I can tell, it's in early stages of development: https://wistar.org/research-discoveries/technology-development/discovery-pipelines/ebv-targeted-anticancer-therapy
  18. TracyD

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    Eriksen has provided an update: https://tracyduvall.com/2018/09/20/eriksens-me-cfs-hypothesis-an-update/
  19. TracyD

    Great video/article on addressing energy problems in ME/CFS

    I take 100mg 1x/day of R-lipoic Acid, 300 mg 1x/day of benfotiamine, and 500 mg 2x/day of acetyl-l-carnitine. I read a lot of official and not-quite-official recommendations about maximum dosages, but I can't remember the details. I generally avoid exceeding the maximum recommended on the bottle.
  20. TracyD

    Great video/article on addressing energy problems in ME/CFS

    Thanks for posting the link! I did the research (a lot!) to improve my own health, and I thought that sharing the results would interest - and possibly help - others. It's on an all-in-one blog, but people can avoid it by watching the video here:
  21. TracyD

    Video: ME/CFS - Dueling Hypotheses

    Oops! I must have been tired when I did that. :) Thanks for the kind words and helpful proofreading.
  22. TracyD

    Video: ME/CFS - Dueling Hypotheses

    Here's a video with a simplified comparison of VanElzakker's Vagus Nerve Infection Hypothesis and Eriksen's "ectopic lympoid aggregates" hypothesis. The script is here: http://wp.me/p5r8mP-xf
  23. TracyD

    Video: How Cells Produce Energy: The Basics and ME/CFS

    Awesome! That's great to hear.
  24. TracyD

    Video: How Cells Produce Energy: The Basics and ME/CFS

    I'm going to look for one of those shirts.
  25. TracyD

    Video: How Cells Produce Energy: The Basics and ME/CFS

    Sadly, I know the feeling. My video certainly isn't an attempt to comprehensively explain ME/CFS. My understanding is that the feeling of exhaustion when a person is ill results from 1) resources being diverted from ordinary activities to fighting the illness and 2) signals from the nervous...
  26. TracyD

    Video: How Cells Produce Energy: The Basics and ME/CFS

    Here's another video, summarizing and simplifying a topic in physiology and making it relevant to ME/CFS. I hope it clarifies some terms and the relationships among some processes.
  27. TracyD

    Riddled with Lactic acid?

    Your example of CBT is not apt, since there are peer-reviewed research articles supporting it. They're just faulty. If you require that every source provide conclusive evidence for everything before you try it, that's your choice. But for me a doctor's published opinion, edited by other...
  28. TracyD

    Riddled with Lactic acid?

    It's not "not a useful statement," but it could be a better supported statement. It was written and edited by MDs, and the article contains references, albeit not tied to that specific treatment. It would be nice to see such support (and from the folks recommending bicarbonate and D-ribose), but...
  29. TracyD

    Riddled with Lactic acid?

    To quote Medscape: "Oral citrate is often used to treat acidosis."
  30. TracyD

    Video: Why there's less energy, even on good days

    :) That's interesting! I've never read a description of how a higher heart-rate might move molecules in the blood to the wrong spot. A faster pulse can move hormones, oxygen, and other things in the bloodstream throughout the body more quickly. But who knows? Maybe the same stronger current can...