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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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Search results

  1. vli

    Lyme doc in Reno area?

    Does anyone know of one such, aside from Dr Bruce Fong (and obviously Prof De Meirleir)? Thank you.
  2. vli

    Rocephin shots

    Thank you so very much @Hip!
  3. vli

    Rocephin shots

    U. P. won't ship outside of the US :cry:. Does anyone know of a source that will ship outside the US?
  4. vli

    Rocephin shots

    I don't know what you're talking about?
  5. vli

    Done reading PLAGUE by Dr. Judy Mikovits

    Yes I must say I found this part particularly interesting as well (if someone'd write it... it looks like it deserves a book of its own).
  6. vli

    Results for Lyme...

    That's really interesting Justy... are you talking about this place? http://www.thelondonclinic.co.uk/
  7. vli

    Done reading PLAGUE by Dr. Judy Mikovits

    Surely that would depend on whether Autism One, and Age of Autism, are really "quack conferences"? I don't know them (I was wondering whether the author would think IACFS or IiME were "quack conferences" as well).
  8. vli

    Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

    Hi Esther--I can say this much, we are taking 0 for a party ;) None of us have ever actually met one another!
  9. vli

    Done reading PLAGUE by Dr. Judy Mikovits

    @Antares in NYC--you are familiar with Erik Johnson right?
  10. vli

    Rocephin shots

    Hi @Daffodil and @lizw118, I hope you don't mind me asking this. As far as I can tell from this thread, the improvements you both saw on Rocephin were cognitive/neuroinflammation-related, correct? But what about energy, i.e. physical exertion? Did you find increases in physical energy?
  11. vli

    What is your NK cell function?

    You definitely get more than a L. Actually it really depends on how you feel because if you tell them you feel rubbish after the infusion, you'll get a L of plain saline right after the drug is infused but before I reported feeling crappy they gave me like half of that, so it's possible to not...
  12. vli

    What is your NK cell function?

    Quick answer: I noticeably improved (although not astoundingly) in the first six months, and then pretty much went back to baseline in the remaining six months. Was with Enlander for a year. You can try to catch me on chat or PM with specific questions, I am here most of the time.
  13. vli

    What is your NK cell function?

    Peterson in NV Bateman in UT Klimas in FL Lapp in NC Enlander in NY (I took it from him for one year)
  14. vli

    Reports of a small outbreak of a polio-like disease in California

    I agree, @Bob. Too bad there is absolutely nothing I can take for it.
  15. vli

    Reports of a small outbreak of a polio-like disease in California

    I DEFINITELY have asymmetrical limb weakness (only on the left side, never the right, in 14 years). What's even more interesting for me is that for me it's not just confined to a limb - the entire left side of my body from my head to my feet is weaker than my right side, which always feels fine...
  16. vli

    Wessely congratulates himself again

    Can say that again.
  17. vli

    Wessely congratulates himself again

    That's a great idea Matthew, thanks for that.
  18. vli

    Wessely congratulates himself again

    Agreed, Sasha - I particularly appreciated this ending to Dr Shepherd's letter.
  19. vli

    A thread to thank the Phoenix Rising team of volunteers!

    Sorry to have come in rather late from half a world away! Thank you so much to @Mark, @Kina, @wdb, @Sushi, @Butydoc, @adin, @Jody, @Jonathan Edwards, @Gingergrrl and any volunteers I am sure my ME brain has left out. It'd be 100% correct to say that if not for your help and for the existence of...
  20. vli

    Fundraising for Dr Lipkin's study.

    Well you're definitely not alone there then @adreno
  21. vli

    Fundraising for Dr Lipkin's study.

    Want to help out in publicising it @adreno?
  22. vli

    Join the National PR Campaign for ME: Power to the Patient (P2tP)

    oh it's a phone APP? nothing like what I thought then...
  23. vli

    Join the National PR Campaign for ME: Power to the Patient (P2tP)

    hi @caledonia I only thought of Jen Brea because I thought there might be overlaps between what you are doing and what she is doing for the campaign she aims to launch in Feb http://meactionnetwork.org/. Do you know if there are overlaps??
  24. vli

    Join the National PR Campaign for ME: Power to the Patient (P2tP)

    Hi @caledonia --are you in touch with Jen Brea?
  25. vli

    Join the National PR Campaign for ME: Power to the Patient (P2tP)

    Yes. Fwiw it looks great to me!
  26. vli

    Join the National PR Campaign for ME: Power to the Patient (P2tP)

    No, you should not make a big change to the site like that simply because what my one friend thought. It sounds as though you are about to add new things to the "Take Action" tab however. Is that so? If so, then I for one would be very keen to see how we can help aside from signing up and...
  27. vli

    Join the National PR Campaign for ME: Power to the Patient (P2tP)

    Thank you Wally--sorry I was not even aware of the CFSAC meeting today. Apologies!
  28. vli

    Fundraising for Dr Lipkin's study.

    A quote from the latest project update email from Jen Brea on Canary in a Coal Mine: It would be no exaggeration to say that it would be sheer lunacy for us to give 10% of a potential $1 million to Kickstarter if we had used one of these sites. It would be lunacy even to give Kickstarter 10% of...