• 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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  1. LBS

    1 disorder which traditional medicine can't cure, and alternative medicine can?

    I do agree with this. A point to be made, though, is that the way money is made is vastly different between the two. Pharma exists because synthetic compounds are patentable, and therefore the company that develops them gets to become the sole owner and seller of that compound, at least for a...
  2. LBS

    1 disorder which traditional medicine can't cure, and alternative medicine can?

    I watched this the other day, after reading about it here. I do have to say that I wasn't much surprised by any of it.
  3. LBS

    Now another eye issue has happened. Flashing in vision

    I get the "silent" migraines, too. For me they are rarely, if ever, associated with headaches, but the visual symptoms are annoying. I hope that's all this was.
  4. LBS

    1 disorder which traditional medicine can't cure, and alternative medicine can?

    Im a little bit surprised by this question, and particularly by its presence on this forum, where so many discussions center around the lack of funding for avenues of treatment that seem promising, and the possible bias of influential researchers within this field of study. Youre asking for...
  5. LBS

    Harm from GET and CBT

    Nicely done. This is what we need, a piling on of better evidence and analysis as to why the "evidence" supporting these harmful treatments isn't sound.
  6. LBS

    Article: Dr. Nancy Klimas Forms Neuro-Immune Institute on ME/CFS at Nova Southeastern University

    Oh, more good news! This is very promising :cheeky grin: !
  7. LBS

    Bond university, collaborative cfs study

    This is exciting news, and that's quite a nice chunk of funding! Let's hope they can produce some quality results that will be of real benefit to this community.
  8. LBS

    Acute G.I. episodes

    Just catching up and reading about all of this now. It sounds awful :( I'm so sad for you, that you have to go through this, and I hope you can find something that brings relief soon.
  9. LBS

    3x2. Pills that is.

    I've stepped up to 3 "teapills" of the Gui Pi Wan, twice a day. Today I woke up with slightly better energy and was actually able to get myself going fairly quickly, which is unusual for me, especially on a day when I have the luxury of sleeping in if I want to. I had two chores which had to...
  10. LBS

    Is it normal to for a son to say I would rather stay asleep than be awake.

    When mine is flaring bad, I'd certainly rather be asleep than be awake, feeling that way.
  11. LBS

    Not great tonight, but not a bad day.

    My usual dosage of the traditional Chinese formula my doctor prescribed began, several months ago, at 4 "teapills" 2x a day. I've dropped that down to 2 pills, 2x a day, because the original dose seems to have caused flareups of my eczema, and other poor effects. Yesterday I had a bad...
  12. LBS

    LBS

    • LBS
    • Blog
    • Blog entries: 3
  13. LBS

    My non-traditional adventures with non-traditional medicine

    I think I'll start writing in this blog to share some of my experience. CFS has been somewhat crippling, though for many years I refused to call it that (CFS). That's mainly because I couldn't get an accurate diagnosis, I had read that CFS was considered a psychological problem, and I knew...
  14. LBS

    Fluge and Mella get 340 000 $ for bigger rituximab study 2012

    This is good news. I hope that they will get good, useful results and that patients will finally begin to get some useful therapies!
  15. LBS

    Article: Researcher Confesses, Implicates Dr. Mikovits in Theft of Materials From WPI

    I would agree with all of this, Enid. The saddest thing is that, whatever the dynamics that caused things to come to this, it's the patient population left standing with their mouths agape and their questions unanswered. The hope that I see in the recent developments is that, to my mind, if...
  16. LBS

    3 things you tried that made you WORSE!

    I can't think of three things that actually made me worse, but there are two things I recall taking at some point which did. 1. DHEA 2. Hormonal therapy in the form of birth control pills I ran out and bought DHEA a few years ago after reading about its health affects, and after...
  17. LBS

    Article: Researcher Confesses, Implicates Dr. Mikovits in Theft of Materials From WPI

    Ownership in a case like this should be crystal clear within the law. I work on grant applications which are going to the NIH almost every day, and one of the very first items on the application is the legal name of the applying institution. The institution signs off on the work to be...
  18. LBS

    Article: Researcher Confesses, Implicates Dr. Mikovits in Theft of Materials From WPI

    Disclaimer: New here, do NOT know the full story, have had no vested interest in how this research played out because I never even knew it was taking place, so not a side taker in this one. However, I feel like I'd like to say something about this. I work in an academic research...
  19. LBS

    More thoughts about TCM

    Another update: I'm now taking 1/2 the prescribed dose (which is 2 teapills 2x daily) along with 1000mg of fish oil, also 2x daily. I'm again at a point at which I have fairly steady energy through the day, better concentration, and-- perhaps best of all-- am waking up each day feeling as...
  20. LBS

    More thoughts about TCM

    Thanks; I ended up taking a dose this evening because I already feel I'm starting to fade, and I have plans for the evening. Maybe cutting back to half what I was taking each day for now would be better.
  21. LBS

    More thoughts about TCM

    There does not seem to be very much interest in this thread, but I thought I'd update anyway. I woke up this morning with the beginnings of a sinus infection, and decided to take a couple of days off from taking the formula. I am hoping to find some balance between feeling somewhat better and...
  22. LBS

    vaporized Cannabis

    Yes, Eucalypta is correct. Educating yourself on the various strains and their effects can make a huge difference in the medical experience of cannabis. I have used it for my insomnia with fairly good results, as long as I am very careful to use only certain strains. The wrong strains create...
  23. LBS

    More thoughts about TCM

    Okay, it's been a few days since I got back on track with this therapy (Gui pi wan). First of all, yes there is a huge difference between this brand and the other one I had used. This is definitely working. My energy level and ability to concentrate are both improving, not quite yet back to...
  24. LBS

    Good CFS doctors/clinics in or near Sacramento, CA?

    Thank you! I'll check out all the options before I decide what I want to do. Appreciate the info!
  25. LBS

    Diagnostics in or near Northern California

    Hi Sushi, I can travel, and would be willing, but I'm really funny about taking on debt and probably couldn't afford that and the testing, too. I guess it would depend upon how much it all actually costs. Then again, it would take me some time to save up the funds to do it, anyway. I should...
  26. LBS

    Diagnostics in or near Northern California

    Thank you so much. When you all say there's a long wait time, what do you mean? Six months? Two years? I'm hoping to at least get a diagnosis so that if, heaven forbid, I should become fully incapacitated I will have some documentation about what is actually wrong with me. Of course I'd...
  27. LBS

    sudafed/phenylephrine for OI/POTS anyone??

    I think I'll start adding it to my regular routine again. I used to take the old Sudafed in the morning in order to get out of bed and get to work, but by the grace of the powers that be I've been a bit less impaired than that over the past two years (usually). I would maybe take one more dose...
  28. LBS

    sudafed/phenylephrine for OI/POTS anyone??

    Yes, I could never take it after a certain point in the day, I have a hard enough time sleeping, anyway. I will have to give this new version another try. If it helps but is more gentle, that would be a good thing. Thanks!
  29. LBS

    Diagnostics in or near Northern California

    Thanks, I don't know about the controversy, but if there's controversy I will avoid it. I'm in Sacramento, so those options would probably work for me. I appreciate the suggestions! Thank you so much!
  30. LBS

    Diagnostics in or near Northern California

    I posted in the doctor recommendation forum but didn't get much response, so tonight am reading about an institute in Reno, NV which apparently does research on CFS and related issues and is affiliated with the University there. Is this an appropriate place to contact for a diagnostic workup...