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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. S

    Diabetes...a brain disease?

    New research showed positive remission of 17 weeks in mice after injecting a hormone directly to their brains (link below). Ever since becoming sick I've been insulin resistant and wondered whether pots and possibly me could be just brain diseases. Possibly to treat the brain directly to see...
  2. S

    Hypertension can possibly be autoimmune

    Please let us know how it goes! When do you get treated?
  3. S

    Hypertension can possibly be autoimmune

    With the knowledge that pots and cfs/me very well could be autoimmune and that some with us develop hypertensive blood pressure, here is an article from last year relating why they think up to 20% of hypertensive cases are actually an autoimmune phenomena. I'd love to hear any thoughts or more...
  4. S

    Medical marijuana & pots

    Thank you for sharing! Eating or using oil probably would be a healthier way to get the benefits. MM is probably something I'll never be able to try anyway.
  5. S

    Medical marijuana & pots

    Thc would probably be to exciting for my system. Caffeine and chocolate give me palpitations.
  6. S

    Medical marijuana & pots

    Maybe a strain wouldn't effect BP. My BP started low with my pots. Now it is getting higher so I Def wouldn't mind it to lower it a bit. I really don't want high bp. This disease can stop developing any time. I'm done :-(
  7. S

    Medical marijuana & pots

    Can you describe how it make you feel better. Can it slow your HR?
  8. S

    Medical marijuana & pots

    Interesting. Do you use it for pots or me or something else?
  9. S

    Medical marijuana & pots

    This woman has found positive treatment apparently for her pots. Her story: http://www.tcharleslaw.com/medical-marijuana-it-is-time/ Anyone tried it or been able to? Anyone know about anyone who has?
  10. S

    Methylfolate Lowering Blood Pressure

    http://forums.phoenixrising.me/index.php?threads/dr-jay-goldsteins-rapid-remission-me-cfs-treatments.34516/
  11. S

    Methylfolate Lowering Blood Pressure

    I also wanted to ask if anyone has considered the NO pathway? It seems some have seen remissions from their symptoms by focusing on it. I will try to provide a link below.
  12. S

    Methylfolate Lowering Blood Pressure

    Very interesting. I started this disease with low bp. How high does yours get and how well does methylation seem to control it? Thanks for taking time to answer.
  13. S

    Methylfolate Lowering Blood Pressure

    I was hoping the high bp in this could be caused and treated the same way. I hope the niacin will work for you and you can report good things soon!
  14. S

    Methylfolate Lowering Blood Pressure

    @shannah I realize this post is older but I was hoping you could answer some questions. Do you still take methylfolate to control bp? Is it something that can be done indefinitely? If not, how are you dealing with your bp these days? @dannybex are you doing anything recently to control yours...
  15. S

    Histamine intolerance and pots

    I stopped neuroprotek a month ago cause I can't afford it right now and notice my heartrate is higher.
  16. S

    Stem cells potential treatment for MS & ALS

    "Medical research is constantly advancing the ways that stem cell transplants, in which damaged cells are replaced with healthy ones, can be used to treat disease. This year saw significant advances in the potential treatment of amyotrophic lateral sclerosis (ALS) andmultiple sclerosis (MS)...
  17. S

    Stem cells potential treatment for MS & ALS

    http://www.everydayhealth.com/news/advances-stem-cell-research/
  18. S

    Six Siblings With Lyme Disease Travel To India For Stem Cell Treatment

    Stem cells help people like Robert waddell. Google him and "kidney'. He is on no immunosuppressive meds after kidney transplant. They are good and lifesaving in situations.
  19. S

    Six Siblings With Lyme Disease Travel To India For Stem Cell Treatment

    That is sad. I didn't know they used that type. So eventually whatever drives the disease totally stopped responding to the cells. If it worked in the beginning and tapered off, what would cause that reaction? If they had a suspicion that could probably help tremendously
  20. S

    Six Siblings With Lyme Disease Travel To India For Stem Cell Treatment

    Mesenchymal stem cells from umbilical are safe and home to where repair is needed, after first going to the lungs for some reason. But it is one of the safest type of stem cell and no risk of graft v host disease yet. We should all be given the option to try it. I don't have lyme btw.
  21. S

    My Rituximab experience for ME

    Can a gp order a test for nk count? I'd like to test mine, is it expensive?
  22. S

    New Video on ME/cfs - "The Signature"

    So grateful you took time to put that together so more people can learn. We finally have something diagnostic. There will be an answer to this disease.Thank you!
  23. S

    Vitamin C Dosing and Megadosing

    I used to always have tender lymph nodes. Since vit. C they are normal 95% of the time, also energy is somewhat better, but that's always hard to gauge because it can be everchanging. Heck, I even believe mine just changes due to weather. *Edited to say* I take 3-4 g a day
  24. S

    Finger pads are wrinkly at times

    Makes sense, I was cleaning up my dog's mess from being sick as well the night before, so maybe my skin didn't like the cleaner. Thanks!
  25. S

    Finger pads are wrinkly at times

    Yes, I think mine is oi related.
  26. S

    Finger pads are wrinkly at times

    Ever since getting sick I don't sweat much. During my remission my underarms started sweating some again though. Tmi, yes.
  27. S

    Finger pads are wrinkly at times

    Thank you all, this morning when I woke up they didn't indent like yesterday so who knows lol. I think I started the day off yesterday being dehydrated from possibly not drinking enough the day before. That's what I'm going with.
  28. S

    Something good potentially

    Rtx wipes b cells out, so doesn't that dampen the immune response? But this Dr. Gottfries got great results from raising immune response with a toxoid in the berna staph vaccine. So what does that paradox mean? How do both ways help? If one doesn't work for a specific subset, could possibly the...
  29. S

    Something good potentially

    http://www.cortjohnson.org/blog/2015/11/21/gottfries-chronic-fatigue-syndrome-story/
  30. S

    Finger pads are wrinkly at times

    Thank you @Sushi I'll take a look!