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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. Rich D

    Epstein-Barr virus reactivation is not causative for post-COVID-19-syndrome in individuals with asymptomatic or mild SARS-CoV-2 disease course

    I know I'm only one person, but oddly, I have no EBV antibodies. I've never had it, it can't have reactivated (though I do have HHV6 antibodies). And I have a classic case of ME/CFS in terms of onset, presentation and progression (to the extent that there is such a thing). For this reason, I...
  2. Rich D

    safe and sound protocol

    It is important to do it under the supervision of a therapist. I don't see how it could mess you up, but maybe it isn't for everyone. Like I said, I had to be very careful and do short intervals. You can't push it.
  3. Rich D

    safe and sound protocol

    I have done the SSP with my therapist. I am in therapy for childhood trauma, and I have a lot of PTSD, and supposedly it can help with that. It also may help with sound sensitivity, which I have. I could only listen for 5 minute intervals. I'd say it didn't help much with sound sensitivity, or...
  4. Rich D

    Doctors In The US Doing IVIG

    You could try getting treatment at the online RTHM clinic, if you are in a state they cover. They are expensive and don't take insurance, but I use them, and my doctor there is willing to prescribe SCIg.
  5. Rich D

    Several long COVID patients report improvements within days from antihistamines

    I think antihistamines are most useful if you have MCAS, which many of us have. And some work better than others depending on the person. I saw significant (though not huge) improvement with Singulair (Monteleukast) within a week, but no effect from Pepsid or Zyrtec.
  6. Rich D

    Declining (and relatively low) HH6 IgG - Antivirals?

    XX.
  7. Rich D

    Fragmented sleep - too many dreams, not enough deep

    High THC indica marijuana works well much of the time for me. Though I still have quite fragmented sleep and racing thoughts and dreams. I’m about to try Guanfacine, you might look into that.
  8. Rich D

    If money was no object, which doctor/clinic would you see?

    Sure, I will once I have some energy. I’ll start a thread about it. For now, I can say if you have money but no options, I would strongly recommend it. You have to be in certain states, listed on their website. So that’s a constraint. It’s like getting an me CFS doctor to treat you. They have...
  9. Rich D

    If money was no object, which doctor/clinic would you see?

    I just started at the RTHM online telehealth clinic. They specifically treat CFS and Long Covid. Very expensive but they are the real deal. https://rthm.com/
  10. Rich D

    Federal Reserve Blog Post on Long Covid and ME/CFS

    Yeah, I totally get it. I feel lucky that I have a research job that I can do remotely. Many are not so lucky.
  11. Rich D

    Federal Reserve Blog Post on Long Covid and ME/CFS

    You got it exactly! This was my thinking.
  12. Rich D

    Federal Reserve Blog Post on Long Covid and ME/CFS

    I’m an economist with the Federal Reserve, and I have ME/CFS. I put out a blog post today Long COVID Appears to Have Led to a Surge of the Disabled in the Workplace - Liberty Street Economics (newyorkfed.org) mostly about long Covid, and I tied it to ME/CFS as best I could. I write about how...
  13. Rich D

    Unbearable restlessness and burning of nerves

    I have something very similar happen to me for periods of time. I believe it is cortisol. It feels literally like coffee has been dumped into my system. I have been driven to the treadmill at 3 AM. I have not found any solution, I just try to ride it out until it passes.
  14. Rich D

    Long covid improves after vaccine

    I found this interesting because they propose two alternative theories based on these anecdotes. If Long Covid is a latent virus, the vaccine should result in long term improvement. If Long Covid is an autoimmune response, then the vaccine will result in only short term improvement. These...
  15. Rich D

    what do you take for sleep

    Cannabis. Works very well for me most of the time. High THC rather than high CBD.
  16. Rich D

    Has CFS really been a form of Long Covid all along?

    I was really just raising a possibility here. Not trying to take a position. It just seems so similar to what happened to a lot of us, I think it is worth considering.
  17. Rich D

    Has CFS really been a form of Long Covid all along?

    Has anyone made a direct link? Have we all caught a coronavirus of some sort in the past and got a version of long Covid? many of us think our CFS started when we got a virus, but others think they did not have a virus first. Were those people just asymptomatic? Wouldn’t this theory also explain...
  18. Rich D

    Something to Ponder

    Given that you mentioned trauma, I have seen some amazing improvement after dealing with childhood trauma. Have you heard of Gabor Mate? He talks about this connection. Here is a video if you are interested:
  19. Rich D

    Noise cancelling headphones - great for those with a sound sensitivity; horrible for those with a significant other. ;)

    I'd like to know whether it is worth spending $300+ for the noise cancelling effect, since I don't want to use them to listen to music because of my sound sensitivity. Has anyone compared the more expensive models to cheaper ones that are under $100 in terms of how quiet they make things?
  20. Rich D

    Alternative to peanut butter?

    Glad you like it! Wish I could get a cat again, but my wife is allergic.
  21. Rich D

    Alternative to peanut butter?

    Tahini is a great peanut butter substitute, and is made from a seed rather than a nut or legume. Black tahini, while bitter, tastes more like peanut butter when used as an ingredient in smoothies and recipes.
  22. Rich D

    How to Stop taking Ambien

    I think it depends on the person and what you have access to. I would suggest trying a low dose product with high CBD first, if you can get it. Like a tincture. Otherwise you can try to just take a couple hits of weed and see if it helps. Start low and go from there. That should give you an idea...
  23. Rich D

    How to Stop taking Ambien

    I went through this myself a few years ago. I had been taking a large dose of the slow release form for 2 years, so I was very hooked on it. I decided to quit and steadied myself for the withdrawal. I worked from home for 2 weeks and decided i was just going to be getting terrible sleep until I...
  24. Rich D

    High THC Cannabis - Sleep inducer and MCS Buster (!)

    I have found similar results in terms of helping with sleep. In fact, I recently gained access to medical M and tried a high CBD product. It was nowhere near as effective as the high THC product I had been using. I make my own infused oil.
  25. Rich D

    Surprising (Scary!) results from new gut pathogens GI test

    I am seeing a doctor in Ithaca, NY named Richard Cohen. He is an MD, but practices as a chiropractor. He sees a lot of patients from all over.
  26. Rich D

    Surprising (Scary!) results from new gut pathogens GI test

    Thanks for your comments! So I’m curious - what did your tests uncover?
  27. Rich D

    Surprising (Scary!) results from new gut pathogens GI test

    It is called Tanalbit. You can find it on Amazon. I took 3 capsules twice per day between meals.
  28. Rich D

    Surprising (Scary!) results from new gut pathogens GI test

    I’ve been seeing a doctor who practices alternative medicine, and he had me take a test called GI-Map. It’s only been around for a couple of years now. It uses DNA maps to test your poop for a number of pathogens – including bacteria, parasites, fungi/yeast, and a few viruses. It does not...
  29. Rich D

    Best Biofilm Busters?

    I took a test called GI-Map which uses DNA testing to identify pathogens, including candida, malignant bacteria, viruses, and parasites. Much more reliable than ordinary tests since it is mapping DNA.
  30. Rich D

    Best Biofilm Busters?

    I am seeing a doctor now who is attacking this very problem for me. For the candida, he had me take a product called Tanalbit, 3 pills 2x per day between meals. I did this for a couple of months and I noticed a huge difference. After completing that, he had me take a product called Para1 from a...