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

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  1. boohealth

    Benzodiazapines

    I did water titration and am down to 1.05 mg of temazepam from a 15 mg pill. I have done the most super slow titration of all time. I used to think I'd like to always stay on 1 or 2 mg given the tendency to anxiety and panic disorder in my family but I'm not sure. You can definitely do it you...
  2. boohealth

    Tracking CCI / AAI MRI & Treatment outcomes

    I've been reading these threads--in astonishment--don't come on here that much. I'm so sorry for all this suffering and so amazed there might be a structural cause for some. I wonder if traction such as a neck brace actually helps short term but longterm allows muscles to atrophy and then...
  3. boohealth

    Nancy Klimas Gulf War Syndrome results

    Thank you! Frustrating as heck about the funding.
  4. boohealth

    Nancy Klimas Gulf War Syndrome results

    Thanks. I can also contact her directly but if you find out please come back and post. The two conditions overlap a lot.
  5. boohealth

    Nancy Klimas Gulf War Syndrome results

    Anybody else have info on the patient? Thx.
  6. boohealth

    Nancy Klimas Gulf War Syndrome results

    Does anybody have any more info on the GWS syndrome sufferer that Dr. Klimas mentioned in her talk a few months ago? Apparently there was clinical success. I'm interested in finding out more. Thanks!
  7. boohealth

    Special Message for you from Ron Davis (video)

    @Research 1st Ummmm...what is the genetic predisposition that all Caucasians have which renders them vulnerable to cfs from vaccinations? This would be a genetic vulnerability related only to skin color????? It is unfortunately not as simple as you wish. There’s likely no knowledge...
  8. boohealth

    Special Message for you from Ron Davis (video)

    Of course he’s driven and intelligent. Look at his accomplishments and how unflagging he is in regards to CFS. I’m not sure who you are referring to in regards to snake oil scientists? Anyway, I think he looks and sounds drained. Hope he gets some rest over the holidays.
  9. boohealth

    Special Message for you from Ron Davis (video)

    Sorry that Ron looks so flat--just exhausted mentally and spiritually--hope he can get some rest.
  10. boohealth

    Hyperbaric without extra oxygen

    Breathing 02 in a room doesn't help the way hbot, mild or deep dive does, period. This is from years of experience. Secondly 48 hours in an animal study, and Vitamin E, really isn't applicable to one hour in a chamber. However, if you want, take antioxidants in the morning or evening, but not...
  11. boohealth

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Yeah I can understand that. All I am saying is the likeliest answer for your "ME" and your response to high-pressure hbot is lyme as a sentinel infection. Could be other reasons, too, but fairly likely. In which case, hbot is a good ongoing therapy.
  12. boohealth

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    In order to be more certain you don't have Lyme (which is epidemic in Westchester, Long Island, NJ and CT, all places you've likely visited) you need to take a course of antibiotics and retest using MDL or other excellent lab. The antibiotics will kill enough to bring out your antibody response...
  13. boohealth

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    @Laurajnyc if you need 2.0 then you probably have lyme...keep at it but when you stop you will slowly relapse if you don't maintain boosters. You might check into buying a mildhbot for home and continuing with that to keep the infection silent.
  14. boohealth

    Hyperbaric without extra oxygen

    They're not at all a con. I had no response (beyond feeling a little relaxed) to using my 02 concentrator in my room. HBOT even mild has a tremendous effect and I consider it one of my ongoing medicines. There is no comparison clinically, but you're welcome to try an 02 concentrator and see if...
  15. boohealth

    Hyperbaric without extra oxygen

    No time. Please educate yourself on borrelia. Thanks!
  16. boohealth

    Hyperbaric without extra oxygen

    No, oxygen at room pressure will not treat lyme, as it is in the tissues and connective tissue. The mild portables are very effective in many cases.
  17. boohealth

    Hyperbaric without extra oxygen

    The oxygen level in a portable chamber at full pressure is about 28%, so its higher than regular air. This will increase the amount of oxygen in the plasma. In addition, pressure shifts the nervous system to a parasympathetic mode, which is healing. Adding in oxygen with a concentrator and leaky...
  18. boohealth

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    It might also be the phosphatidyl choline itself. That's the major fatty acid composing the cell membrane. might
  19. boohealth

    Ben and Claire's adventure to Davis-Dafoe land!

    @Binkie4 I think he was upstate New York but there was enough reporting on it that his use could be a guideline. Its just isotonic saline. Doesn't require extensive tests.
  20. boohealth

    Ben and Claire's adventure to Davis-Dafoe land!

    David Bell treated patients with IV saline. I think it's just an IV bag of isotonic saline. He even if I recall had one woman with a port, because she needed daily infusions to function.
  21. boohealth

    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Sorry to ask a redundant question, but last week I saw an email address to send queries about the serum experiment(s)--I ran across an interesting 2013 Tufts Univ study in the course of researching luteolin for something entirely unrelated here, that finds extracellular mito DNA components in...
  22. boohealth

    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Thanks for the transcript--totally mesmerizing how he is using these new technologies.
  23. boohealth

    For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

    @SunMoonsStars I was told a long time ago I couldn't get correct readings and interpretation of immune activity without going off ivig for several months. I don't know if that was accurate but I do know from the scientific literature that the passive antibodies (which are pooled from thousands...
  24. boohealth

    For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

    @josephine2 I really think you should ask Levine about the medical oxygen. Better to treat the swelling causing the headaches than the symptoms with heavy duty drugs like opioids. She ought to know about this for cluster headaches.,.its simple to do and rx.
  25. boohealth

    For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

    Not sure if this will help or not but oxygen is used for refractory cluster headaches--it might help break your migraine. It's simple--just have doc Rx medical oxygen at home. Low flow, I don't recall the specific protocol, but it's widely known and covered by insurance if for the above dx. To...
  26. boohealth

    Ben and Claire's adventure to Davis-Dafoe land!

    Very endearing and entertaining thread. Thanks, Ben.
  27. boohealth

    A unofficial update on Prof Davis and Janet Dafoe...

    @Rose49 I'm thinking of something like...fundraising for 100 hours at 20$ hour...(so, fundraising $2000), 10 hours a week for 10 weeks, on 2-3 separate days each week depending on your needs/schedule, for simple tasks to get your book keeping and business desk in order...maybe a mild CFSer who...
  28. boohealth

    Building a mold free house

    It's hard to say, because AZ and Nevada are very different...Nevada is drier. AZ has a high-ish risk of valley fever, from the whole Tucson to Phoenix corridor, for instance, partly because it is actually more humid and has monsoons. High altitude is a far different situation than low altitude...
  29. boohealth

    I'm in love with Ketotifen!

    This is a good idea because eyedrops go systemic anyway...that's why certain glaucoma eyedrops cause heart symptoms.
  30. boohealth

    A unofficial update on Prof Davis and Janet Dafoe...

    Well, is it possible for us to find you someone like that? Is that a part-time book-keeper local to Palo Alto? How many hours do you need? I don't mind trying to locate that for you. Maybe they can even come at night if you have to stay up at night sometimes. Let me know what's needed and I'll...