• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. Never Give Up

    Julie Rehmeyer's 'Through the Shadowlands'

    Photo credits: Book jacket photo: Bob Elsdale/Getty Images Frances the dog in Death Valley: Julie Rehmeyer Julie Rehmeyer dancing at her wedding: Andrew Young
  2. Never Give Up

    Your Dream Place for an IACFS/ME Conference: Take the Poll

    San Diego, because that’s where I am.
  3. Never Give Up

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

    Thanks for the update @jeff_w . The story of your symptoms, diagnosis, surgery, and your response to the surgery is just fascinating. I am sorry to hear about your infection and hope it will be gone soon. You’re a tough guy. Thank you for sharing your story. Hope you will be well soon. :hug:
  4. Never Give Up

    My Job-Going Out Of Business.

    Have you onsidered taking on a partner? It might be more maneagable that way.
  5. Never Give Up

    Does anyone understand the trigger of POTS/Dysautonomia re: bending from a standing position?

    We are using a toy grabber left over from his younger days, but Amazon has a very large selection of them.
  6. Never Give Up

    Does anyone understand the trigger of POTS/Dysautonomia re: bending from a standing position?

    My son experiences this and has gotten quite good at picking things up with his feet! I have no idea why it happens. Perhaps bending over increases the blood pressure in your head, which might overwhelm the parts of your brain responsible for heart rate, BP and respiration. Maybe it increases...
  7. Never Give Up

    How can one find a good Doctor for Dysautonomia?

    Dysautonomia International is a very good resource. You are more likely to get information on personal experiences with these doctors if you join the Facebook group called POTS and then search the doctor’s names on their Facebook page.
  8. Never Give Up

    FDA Warns Of Kratom Harms Including Death

    If there haven’t been any good studies we don’t know if it effectively treats pain, depression or anything else, nor do we know the full extent of it's negative effects. The FDA is passing on information that has come to their attention to temper potentially dangerous blind faith in this poorly...
  9. Never Give Up

    FDA Warns Of Kratom Harms Including Death

    When proven treatments don’t exist desperate people try the unproven. Be careful what you try. https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm584970.htm The FDA is warning consumers not to use Mitragyna speciosa, commonly known as kratom. There are currently no FDA-approved uses...
  10. Never Give Up

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    That Seahorse is really coming through for ME/CFS!
  11. Never Give Up

    Dr Nath's intra-mural study at NIH is currently recruiting

    Yes. The contact info is here: https://clinicaltrials.gov/ct2/show/NCT02669212
  12. Never Give Up

    should i pay $90,000 for stem cells?

    Thanks for the update. Please do continue to keep us apprised.
  13. Never Give Up

    Seeing Dr John Chia on Friday, What Questions Should I Ask?

    Ninety miles is a long trip. How big is the machine you are renting/buying? What has it done for you so far? There was a great neuroimmunologist down here, but he is having a major health problem and not currently seeing patients. Have you Google “neuroimmunologist” plus your city? I think they...
  14. Never Give Up

    Seeing Dr John Chia on Friday, What Questions Should I Ask?

    That’s a great list! Is your insurance covering your mHBOT? What is poly-MVA? Have you seen a neuroimmunologist to help you hunt for autoantibodies? The seem to be way ahead of the game.
  15. Never Give Up

    Seeing Dr John Chia on Friday, What Questions Should I Ask?

    You get the greatest information from Dr. Chia, @Jesse2233! Well done! What are your next steps?
  16. Never Give Up

    Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

    Wow, that was quite a story! The fact that it took them so long to figure it out, with both parents being physicians, is very telling of the limited knowledge and point of view of individual practitioners. It the Parents thought it was PANS or PANDAS, why didn’t they bring their daughter to an...
  17. Never Give Up

    Publication On Brain Lymphatic System

    Here’s an NIH article about the path the researcher took in finding the lymphatic vessels: https://www.nih.gov/news-events/news-releases/nih-researchers-uncover-drain-pipes-our-brains
  18. Never Give Up

    Publication On Brain Lymphatic System

    https://elifesciences.org/articles/29738
  19. Never Give Up

    Finding a good surgen for MMA

    I would NOT do that surgery! It has been many years since I've seen patients before and after surgery, but back then, it was always a big fail, with a lot of pain!
  20. Never Give Up

    At what Oxygen levels is using Oxygen with APAP recommended?

    I know of some in California, if you are also in CA, PM me. Dysautonomia International lists regional support groups, some of which maintain lists of member recommended physicians. Try looking here: http://www.dysautonomiainternational.org/page.php?ID=24 The types of doctors who diagnose and...
  21. Never Give Up

    At what Oxygen levels is using Oxygen with APAP recommended?

    Orthostatic Intolerance is usually a part of ME/CFS. It is often highly treatable. Treating it can improve symptoms and quality of life. Here is a good explaination: http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
  22. Never Give Up

    At what Oxygen levels is using Oxygen with APAP recommended?

    That's got to be uncomfortable. Is it worse when you are upright?
  23. Never Give Up

    At what Oxygen levels is using Oxygen with APAP recommended?

    Well, if you are adequately ventilating, that is moving air in and out and CO2 out, most would try to match your sleep saturation levels to your wake time saturation levels. But you have to measure it all to know why the sats are low. Under treatment of apnea and hypoventilation should never be...
  24. Never Give Up

    At what Oxygen levels is using Oxygen with APAP recommended?

    Oxygen would be added if a sleep study demonstrates that your CPAP/APAP is effectively treating your apneas and hypopneas and that your CO2 levels are in the normal range(if they are too high, then BiPAP would be titrated), but your oxygen levels remain low.If that were the case they would...
  25. Never Give Up

    Seeing Dr John Chia on Friday, What Questions Should I Ask?

    My motto is to take whatever improvements you can find.
  26. Never Give Up

    Seeing Dr John Chia on Friday, What Questions Should I Ask?

    Haha, that was my son! However, it was not exactly immediate, it took a few months. Can't remember how long he took it anymore, seems like it was 3-5 months. That was after several years of slow, but steady improvement on Equilibrant and Inosine. He DC'ed it due to intolerable side effects, but...