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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. Sparrowhawk

    Low dose Naltrexone

    I have not lost any gains, in fact I continue to see minute but additive improvements in things like fibro pain over time. Having read years of the LDN Yahoo group I've not seen anyone post about losing gains as long as you stay on LDN. Folks who do stop using it usually revert to previous...
  2. Sparrowhawk

    Low dose Naltrexone

    We are all so different, but I'll just say that the side effects I had while ramping up my dose by 0.5mg every two weeks all leveled off and then mostly disappeared after the 4th month (odd dreams/nightmares). I'm still seeing steady improvements now about 11 months in. For the first several...
  3. Sparrowhawk

    B-12 - The Hidden Story

    We're all so different, and even the same person may react one way to supplements and a different way later. Now that I have a few things addressed (MCAS mast cell mediators, H1 blockers) I can supplement again in ways I simply could not for the previous 4-5 years. My saying is "some things work...
  4. Sparrowhawk

    B-12 - The Hidden Story

    Here you go - I first found mention of these in Phoenix Rising via the inimitable @garyfritz - I've found them very effective. Note the inventor counsels we take selenium, molybdenum and a bit of iodine to facilitate processing of the B12, and my Dr. says I should never take B12 without...
  5. Sparrowhawk

    B-12 - The Hidden Story

    Many thanks for both the responses. Very helpful, informative and much appreciated! I have MCAS and only able to eat about 8 foods at this point, so food-based C and similar are not in the cards for now. If you have specific brands/products to recommend for these I'm all ears "I take Thorne R5P...
  6. Sparrowhawk

    B-12 - The Hidden Story

    Great guidance, above, well said. One question on what you wrote here: Is this a standardized infusion IV, or do your providers customize it for you each time? I'm curious which vitamins can be infused vs. which can't. For instance I have yet to find a Vit E pill that I tolerate without...
  7. Sparrowhawk

    Transdermal B12 oils

    Great to get your updates @garyfritz and glad chelation has been working out for you. Thanks also, again, for being the one who let so many of us know about the existence of the B12 oils. I recently (this year) learned I can't tolerate injected B12, for whatever reasons I break out in hot and...
  8. Sparrowhawk

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    That's the core truth right there. I've been on this board for going on seven years, and some folks have found their way to health, as far as I can tell from an incredibly wide variety of pathways into and out of illness. Thank you @jeff_w for sharing your journey so eloquently and...
  9. Sparrowhawk

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @Daffodil this was Jen's latest post on Medium - FYI https://medium.com/@jenbrea/health-update-2-my-pots-is-in-remission-8fceff9c1744 Also, @jeff_w posted this to Twitter: @jeff_says_that That number has now grown to 11 people with ME, from...
  10. Sparrowhawk

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Really great advice you have provided, and wonderful to hear your improvements, especially on this solemn day.
  11. Sparrowhawk

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I've been away from this thread for a while and just catching up today. Hooray for you Jeff! So happy for you. Fantastic to hear this.
  12. Sparrowhawk

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Looks like Jen just posted an update in Medium: https://medium.com/@jenbrea/are-a-subset-of-us-members-of-a-lost-tribe-ee8942f35577
  13. Sparrowhawk

    Transdermal B12 oils

    Super excited for you @garyfritz ! Great to hear that is going well.
  14. Sparrowhawk

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Has Jen Brea provided any new updates on her progress since her procedure? Just curious. I know she posted photos the day of surgery but would love to know how it is working out for her if she has provided a public update since then. Thanks.
  15. Sparrowhawk

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Fantastic, so happy for you! Such a familiar set of issues to those of us here (down to one food--yep), and yet every time I read another person's account my heart breaks that anyone should have to go through such circumstances. At the same time huzzah, wonderful and amazing that you have...
  16. Sparrowhawk

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Good gracious, no need to apologize, that was a magnificent introduction to a treatment modality -- thank you! Very clear. Also fantastic that it helped you so much. That's tremendous. Anything that can help your body heal from bedbound to your current activity level is worth exploring. I...
  17. Sparrowhawk

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    I haven't been for a while but I tried two different chiropractors -- I wasn't aware that there were "kinds" so I apologize I can't give more specifics.
  18. Sparrowhawk

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    Are you able to say any more about the specifics of that cranial osteopathy approach? Many thanks in advance.
  19. Sparrowhawk

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    I've been thinking about this for days. What if... What if part of the onset of ME/CFS (from a purely mechanical basis, per this thread) is having spent a few weeks in bed with viral and/or bacterial infections, the simple fact of head-on-pillow for that length of time lengthens and/or...
  20. Sparrowhawk

    Transdermal B12 oils

    The Aussie gent who makes the oils is supposedly a PhD chemist so I assume he has worked out stability and absorption issues. @garyfritz would have more.
  21. Sparrowhawk

    Staph vaccine to treat CFS??

    Right, and the gods know I ate way, way too much tuna over the years as a penniless grad student. :-)
  22. Sparrowhawk

    Staph vaccine to treat CFS??

    @Hip the only counter to your advice above is (per Andrew Cutler) that folks with Mercury Amalgam fillings still in their mouths should not take DMSA or any other mercury chelator -- can unfortunately mobilize more mercury around the body and into the brain than you would help remove from the...
  23. Sparrowhawk

    Staph vaccine to treat CFS??

    Thanks for the index -- as always, thorough and helpful as you are so consistently. Sorry to hear about the side effects and it will be important to see if any others report similar. Meanwhile sending you all the best for better outcomes with your next trial.
  24. Sparrowhawk

    Hemex ISAC Hypercoagulation Profile?

    Thanks for the response and overview of your attempts along these lines. My reading so far this morning seems to run into dead ends, such as the fact the testing service recommended doesn't exist any more.
  25. Sparrowhawk

    Hemex ISAC Hypercoagulation Profile?

    Bumping this one again as well. Anyone have luck pursuing this path? Thanks in advance.
  26. Sparrowhawk

    Has Anyone Seen Dr. Kogelnik?

    As an alternative, I have a good friend currently seeing Dr. Kauffman at OMI and getting great, attentive care for the past year or so. Dr. Kauffman seems to be open to working with the patient to map out and attempt to remediate complex medical issues.
  27. Sparrowhawk

    Transdermal B12 oils

    No worries! Common confusion given how vague the username is. I'm honored, really. :-)
  28. Sparrowhawk

    Transdermal B12 oils

    @Athene* thanks so much for the thorough response. Very helpful. How do you supplement the potassium, just with salt substitute or did you get potassium pills? I ask because I had been eating an avocado a day to get potassium but started having histamine issues with that so I had to stop...
  29. Sparrowhawk

    Transdermal B12 oils

    If you don't mind my asking, how do you recognize the low folate and low potassium as separate issues when they crop up? Thanks!