• Welcome to Phoenix Rising!

    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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Search results

  1. R

    Free Heart Rate App from Apple Store

    Great! Thanks for posting about the app. I have POTS too so this will be helpful.
  2. R

    Travel

    There are so many categories I'm not sure where to post things. I need to take a trip (family member is in very, very poor health). It's about a 16 or 18 hour car ride. I'm trying to figure out a way to travel that won't jar my nervous system or make me crash (if that's possible). I think...
  3. R

    Has anybody heard of this new book out?

    I'm not sure where to ask this but I just got an ebook called "Back from the Edge..." (I can't remember the rest of the title, lol!) but its about a guy who was really sick but can now hike (I think he climbed Mt. Whitney?) and work. I wanted to get people's input about it? I started...
  4. R

    Organic Food

    That's great that you feel close to recovered. I have never heard of Roundup so will have to google it. I have gone all organic while living in a bad place but it didn't help because the mold was so rampant. Thanks for being a pioneer in terms of trying different treatments including mold...
  5. R

    Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

    Well said. Count me as another very sick patient. They do try but they don't have the answers. I've paid them a lot of money but I haven't improved. I think their strength lies in treating other chronic illnessess rather than me/cfs. They did participate in a study with WPI. I took part in a...
  6. R

    Vasoactive intestinal peptide (VIP)

    The Shoemaker patients I'm in contact with were living in 'good' environments so there was no reason for it not to work. Similarly with the study my doctor's office did. I agree with Lono. The current form of VIP does not raise VIP blood plasma levels which has nothing to do with living in a...
  7. R

    Vasoactive intestinal peptide (VIP)

    I took it for awhile. It was expensive and it had zero effect. My doctor's office did a study using it and no one had any benefit from it. I've been in touch with 3 Shoemaker patients also who reported similar results.
  8. R

    anti retro virals and side effects namely facial fat loss and fat redistribution

    pinky- i'm currently researching arv's to see which one's cause lipodystrophy and ones that are toxic to the mitochondria. I was tested for xmrv as part of a study over 1 year ago and have yet to receive my results (apparently a lot of patients in this study are still waiting). the waiting is...
  9. R

    anti retro virals and side effects namely facial fat loss and fat redistribution

    ARV's can cause lipodystrophy. Here's a link: http://www.thebody.com/content/art12780.html Regular anti virals such as famvir, valtrex, valcyte are not known to cause this.
  10. R

    Pacing with a Heart Rate Monitor

    I just got my Polar F7 (?). I'm trying to figure out my AT. With the formula its only 88 which like someone else said means I'm over it when I stand up. Is there an updated formula? Great thread! I also asked to join the group on facebook.