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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. Thomas

    Completely eliminated my severe anxiety symptoms with three supplements!

    I think the exact same thing happened to me but only realized it when I ran out of it and didn’t bother going to buy any more. It feels better without it so I’m stopping it.
  2. Thomas

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    So this morning I went for my first infusion. I requested 150 mg instead of their starting dose of 250 mg. It was mixed in 500 ml of saline and the infusion lasted about 2 hours. I felt a tad bit of nausea but nothing too uncomfortable. I'm sure a higher dose would have been more noticeable...
  3. Thomas

    Video Dr. Byron Hyde - Enterovirus theory?

    That’s a good question.
  4. Thomas

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Good question. And I’m not sure what the answer is yet. I guess everyone is different and once you try the first IV you’ll have a better idea if it intuitively feels good to continue for added benefits. But this is coming from someone who hasn’t tried it…yet. Still working out the details with...
  5. Thomas

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    So maybe I ask them to add the NAD+ to 1 litre of saline rather than 500 ml and slow it all down also. Sorry if I asked this already but would a 50 mg or 100 mg subcutaneous injection be a quick and less tortuous experience than a long IV? In other words are there less side effects with SQ while...
  6. Thomas

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Infusion clinics in my area that provide NAD+ infusions have varying protocols and pricing. Some were $1,000-$2,000 US per infusion!! but those were for higher doses. The one closest to my home was the most reasonable at $289 for a 250 mg infusion over 2 hours (adjusting the drip rate for side...
  7. Thomas

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Haha Thanks for the tips! Sounds like quite the adventure. I’ll be making some calls to some local clinics this week to see what their protocols are like and cost.
  8. Thomas

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Yeah I read through most of this thread and the infusions definitely don’t sound so pleasant. I’ve had my fair share of unpleasant infusions over the years with various medications and natural substances so I’d prefer not to have to unreasonably suffer another one haha. That is why I plan on...
  9. Thomas

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Thank you. Out of curiosity just so I can be as clear with the infusion center as possible: How is the NAD+ administered via the IV? Is it mixed into saline and if so how much or is just the NAD+ that is dripped through the IV without being mixed into anything?
  10. Thomas

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    A friend of mine is doing subcutaneous NAD+ injections prescribed by his doctor. It is 0.20 ml (or 20 units in a diabetic needle) daily. It’s helping a lot although he doesn’t have full blown ME/CFS. wondering if anyone here is still experimenting with SQ injections and/or IV and how that’s...
  11. Thomas

    Encapsulating leaky gut repair supplements in capsules to target the colon (where bacteria & LPS live) rather than the sterile small intestine

    Yes good point I guess it’s not a guarantee that the healing properties of these herbs would successfully reach the colon. ah thanks for the reminder for NAG from your list. I was having a little success with that supplement a few years ago. I didn’t get the anxiolytic effect as you did but it...
  12. Thomas

    Encapsulating leaky gut repair supplements in capsules to target the colon (where bacteria & LPS live) rather than the sterile small intestine

    Wouldn’t other leaky gut herbs like slippery elm bark, marshmallow root, licorice root etc reach the colon? They contain fiber which tends to reach the large intestine. With Glutamate being an amino acid I can see why it wouldn’t reach the large intestine. I have a leaky gut repair formula from...
  13. Thomas

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    I used to use brand medicines dot com but it looks like it has been shut down. It’s been a while since I’ve needed to purchase meds for myself. Does anyone know what the best ones are for shipment to USA?
  14. Thomas

    Abilify- Stanford Clinic Patients

    Interesting that in Jay Goldstein’s book Tuning the Brain which was written before Abilify was approved, he made mention of this drug, the drug developer, and similar compounds that he thought might be very helpful in ME/CFS and related Neurosomatic conditions (see attached screenshot) ...
  15. Thomas

    Research update from Prof. Ron Davis (video!)

    What’s the difference between modern day trials of various medications that Ron is planning and Jay Goldstein’s trial and error protocols from the 90’s and 2000’s? What I mean is, Goldstein’s meds were often effective right away but wore off over time, how can Ron ensure that a potentially...
  16. Thomas

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    Yeah maybe if you’re an Aspy with genius level math skills that’s able to live alone. But I’m guessing the parents with kids who can’t speak, shake back and forth, have multiple seizures a day, and shit their pants would welcome an effective treatments or “cure”. Also, if an effective...
  17. Thomas

    OURA ring sleep monitoring

    Yes I guess so. I feel it’s been happening consistently lately not just today so I’ll have to inquire again w them. Thanks.
  18. Thomas

    OURA ring sleep monitoring

    Yep that sounds more reasonable to me as well.
  19. Thomas

    OURA ring sleep monitoring

    Yeah same. When I first got it I thought it was undercounting. Now I feel like it’s overcounting. I haven’t left my relatively small apartment today and it’s already telling me I’m beyond 4,000 steps. This can’t be correct as I haven’t been walking around that much. I guess the only way to test...
  20. Thomas

    OURA ring sleep monitoring

    I’ve had the Oura Ring for around 16 months and I’ve been wearing and updating it very consistently since I got it. I always wear it on my non-dominant index finger. The only time I take it off is when I’m showering. As much as I’d love to keep it on for this exhausting activity, the soap just...
  21. Thomas

    Dr Byron Hyde's video talking about the 1904 epidemic, the compensation paid to LA ME victims etc

    Dr. Hyde's "limbic system injury" requirement for ME is straight from his friend Jay Goldstein's early work (See "Chronic Fatigue Syndromes; The Limbic Hypothesis" by JG). Where their opinions differ however is in the classification of this particular phenomenon. Hyde thinks it's a requirement...
  22. Thomas

    New Lipkin/Hornig publication imminent?

    This? http://www.nature.com/tp/journal/v7/n4/full/tp201744a.html
  23. Thomas

    Update on Ampligen Availability in the US

    I think like with any ME/CFS treatment you have to try it to see if it will help you or not. And "severe" can mean many different things to many different people.
  24. Thomas

    Update on Ampligen Availability in the US

    When you find out would you please let us know which countries/cities/doctors in Europe will be using Ampligen? Thanks a lot.
  25. Thomas

    Anyone tried ketamine?

    Furthermore, you might find this old letter from Dr. Goldstein that someone gave me which may help explain his protocol. See attached.
  26. Thomas

    Anyone tried ketamine?

    Yes my experience with IV ketamine wasn't very good. Being on the drug was pleasant but after it left my system the payback was quite uncomfortable and bizarre. But that was just my own personal experience. Goldstein infused ketamine at least a thousand times according to his own estimation...
  27. Thomas

    Influenza vaccine as possible cause for cfs/me - help needed

    They do contain adjuvants. The injection type do at least. I'm not sure about the live flu mist vaccine though. I think aluminum is way more of an issue than mercury in it's ability to trigger ME/CFS and similar illnesses. I don't believe it's from a lifetime exposure type thing as @Hip said...
  28. Thomas

    Third Metabolomics Study Info (Gordon Medical Study)

    That's great information - thank you for checking and reporting back :)
  29. Thomas

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    This forum isn't so public. Feel free to comment - I'm interested!