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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. JAH

    Abnormal Catecholamines

    Hi Everone, I had a 24 urine test for catecholamines, and all results were either low normal or out of range low (dopamine, creatine). In my blood, creatine and dopamine are high. Does anyone have any ideas about these results? on this forum I read that low urinary Catecholamines could be...
  2. JAH

    Ron Davis Update

    Do you get the idea of taking co enzyme a?
  3. JAH

    Has there been any news from Dr. Davis or others?

    I agree that his last post was the worst but the this was actually encouraging- a few theories that may lead to treatments. Nothing imminent unfortunately but much more uplifting than his last update. (I also think that having Janet there is helpful to rein him in and make him talk to the...
  4. JAH

    Muscle spasm medications?

    Baclofen and Valium. I know many are wary of benzos, but Valium has been a miracle drug for me when I need it.
  5. JAH

    What has improved your quality of life?

    Noise Cancelling headphones, an expensive purchase, but I couldn’t live without them (they are on my head now! Not listening to anything). My tolerance for noise and light is poor, so I have many eye pillows and masks, but the headphones are so critical. They’ve changed how I live my life. I am...
  6. JAH

    Anyone use Binaural Beats (Sound Therapy) to Reregulate Brain Waves?

    I listen to binaural beats from the Insight meditation app. [which is free, and I recommend to anyone interested in just about any style of meditation) and I bought ‘the best binaural beats” by Jody Hatton, which is just one pulsing tone made by the difference in frequencies. I like the Jody...
  7. JAH

    Gastroparesis and Nutrition - Please Help!

    You might take a look at Orgain. I found their high protein formula preferable to ensure. They have a few different varieties, including vegan, maybe one would work for you. I think you can get a single bottle to see if you can tolerate it. Good luck, I lost a lot of weight and know how rough...
  8. JAH

    Saunders Neck Traction and Medicare

    No I hadn’t seen that Medicare page- kind of surprised that no medical supply company I’ve contacted takes Medicare, oh well. Thanks for the link, I’ll keep looking into it and talk me my doctor jah
  9. JAH

    CNN Article on Ron Davis -- A Stanford scientist's quest to cure his son could help unravel the mystery of Covid-19 long haulers

    Thank you Ryan Prior for this excellent article. Appreciate that you got into the SIPs study. comment on the CNN Twitter post here:
  10. JAH

    Saunders Neck Traction and Medicare

    I have no problem with lying😀 but seriously, I’ve emailed a few medical supply stores, and none of them take insurance, so I’m not sure how that would work. I don’t think I can “bill” Medicare. thanks for your feedback J
  11. JAH

    Saunders Neck Traction and Medicare

    Hi Everyone, Like many of you, I am looking into the role that cervical instability might play in my CFS. I’ve started to use a cheap over the door neck traction device, which I don’t like it and can’t use by myself, I’ve read some of the threads here about the Saunders and ComfoTrac neck...
  12. JAH

    Abilify- Stanford Clinic Patients

    I really don’t have much to offer- just been on the medication for a week. Been poring over this thread, because I knew I had chance to try it and just wanted to chime in about the dosage, since there were some questions about that. my case is severe, so it’s not easy for me to read or post...
  13. JAH

    Abilify- Stanford Clinic Patients

    Yes
  14. JAH

    Abilify- Stanford Clinic Patients

    You can also get 0.1 mg capsules from a compounding pharmacy. my prescription is from the Stanford CFS clinic.
  15. JAH

    Im going to a neurologist tomorrow. What should I ask her?

    Dysautonomia could be relevant, Do you have POTs? A neurologist could treat that, I would ask about testing for POTs, GAD antibody. You have some kind of neuropathy if your have burning. You could get a EMG. sorry if I’m a little all over the place, I have had tons of neurological...
  16. JAH

    Formed pillows for neck issues

    I love this travel pillow. https://www.nestbedding.com/products/the-easy-breather-travel-pillow my neck hurts all the time; I have some kind of neck support whenever I’m in bed or sitting. (or slouching to be more accurate) I use this as almost my main pillow when I sleep. I also have their...
  17. JAH

    Tracking CCI / AAI MRI & Treatment outcomes

    Can you tell me what are “tethered cord symptoms “? Thanks and I hope there’s a chance for more improvement for you soon.
  18. JAH

    Grant Awarded to Nitrogen Hypothesis Study

    Does anyone have any thoughts about what this hypothesis might lead to in terms of treatment? is the OMF looking for volunteers for this study? thanks Ben for posting and the continued hard work by everyone at the OMF. JAH
  19. JAH

    Michael VanElzakker, PhD

    Thanks, I am going to be in Boston in October, so I was thinking of talking with him if possible. Not up to going to the ME/CFS meeting, unfortunately. JAH
  20. JAH

    Michael VanElzakker, PhD

    I know Dr. Michael VanElzakker is not an MD, but does anyone know if he sees or consults with patients? his vagus nerve theory fits my symptoms exactly. Thanks
  21. JAH

    Scalp itching

    I have that too and don’t know why. The sensitivity to odors is a symptom of vestibulopathy. I talked about this with an ENT and was surprised that it is connected to sensitivity to light, sound, hearing your joints pop, hearing a heartbeat in your ears. If your sister has vertigo, that is also...
  22. JAH

    Mestinon?

    Galantamine Hydrobromide is the generic name for the drug Razadyne. It’s used to treat Alzheimer’s disease. It’s also can be used in the same way as mestinon, and has similar side effects. I’d echo some of the other posters to start slowly with mestinon. If you have a doc you trust, it’s...
  23. JAH

    Dr. Ron Davis gets NIH grant!

    Tremendous news. Couldn’t be two better Davises
  24. JAH

    Soundtrack of your CFS life…

    Avicii, R.I.P.
  25. JAH

    Soundtrack of your CFS life…

    Wake Me Up, when it’s all over Acoustic version
  26. JAH

    Diabetes Meds

    Really sorry about your leg- hope it does heal soon. Thanks for your feedback, all the best.
  27. JAH

    Diabetes Meds

    Hi Everyone, In Ron Davis’ last update, he mentioned that the metabolic signature of ME/CFS looks a lot like diabetes. And he knows of a physician using metformin. Has anyone tried metformin or another diabetes med? Thanks, JAH
  28. JAH

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    P.S. just an addendum to say that my appetite has increased, dont know if it has anything to do with rapamycin, but my stomach has been s@#t, so happy with any improvement, coincidental or not.
  29. JAH

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I’ve been on rapamune for 5-6 weeks, 1 mg. First week was half dose. I could tell that I was taking something for the first few days, but since then I’ve noticed no change- good or bad. I could be taking a sugar pill. Weird for me because I’m usually very sensitive to medication. Honestly, my...