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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. R

    Active B12 Protocol Basics

    Thanks Sherpa, Sueami and ahmo. Great info. I'll contact you privately.
  2. R

    Active B12 Protocol Basics

    Thanks Sherpa. I use the Enzymatic Therapy B12 Infusion now. Just wondered if there was anything better. It's kind of low dose at 1000mcg, but I guess its effectiveness is what counts. Hey, can you share a bit about how you recovered from your adrenal issues?
  3. R

    Active B12 Protocol Basics

    I've been supporting methylation with the B12's, etc. for about 4 years, but it's possible I haven't kept abreast of changes. Ab12 is now recommended only once/week? Also, I know there have been changes over time in the sublingual methylcobalamin recommended. Is there a particular brand...
  4. R

    Getting serious about Heavy Metal Detox?

    Deleted due to lack of response.
  5. R

    Nimodipine and where to get it?

    Thanks Iquitos. I managed to figure it out and minkeygirl was very helpful.
  6. R

    Online pharmacies?

    I posted about wanting to try Nimodipine, but really more interested in how and where to buy it. I don't have a prescription. Are there any online pharmacies that don't require a prescription and that are safe/reliable? Hoping to avoid being sold counterfeit drugs.
  7. R

    Nimodipine and where to get it?

    Thanks minkeygirl, but... this is kind of embarrassing... I haven't been out here for awhile and I can't seem to figure out how to PM you. Seems to have changed. Please advise.
  8. R

    Nimodipine and where to get it?

    Seen this. More interested in where and how to get it. Online pharmacy? India?
  9. R

    Nimodipine and where to get it?

    Interested in trying Nimodipine. Can anyone recommend how and where to get it? (Lots of info. out there on Nimodipine for ME/CFS. Here are a couple of interesting links)...
  10. R

    Xifaxan/Rifaximim

    Does anyone know how things are going for people who've tried this drug. Are people (presumably on a maintenance dose) who've improved dramatically staying well or relapsing. Does anyone know if "Esther" has reamined well?
  11. R

    What has helped best against your leaky oversensitive gut?

    Has anyone gotten better (significantly or "recovered") - and stayed that way - after fixing their gut?
  12. R

    B Complex

    I found this out recently too. Disappointed becuase it's really a good product for me. I was able to get it here, though: http://www.healthpalace.ca/ Don't know if they ship overseas, but you could contact them to find out. Good luck.
  13. R

    Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

    Hi xchocoholic. Clonazepam was prescribed to me for sleep, but I remember reading Cheney's philosphy on it later and thinking, hey, I'm helping my brain too. But if Dr. Ashton is right, (and again, from my own experience, I believe she is), not increasing the dose results in withdrawal. So...
  14. R

    Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

    Hi Leela. From a previous post of mine: This is why I made the comment about advice on this issue previously. As well intentioned as everyone is, (and again I know and appreciate the good intent) if you haven't experienced the nightmare of clonazepam's iron-fisted grip, you can't give valuable...
  15. R

    Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

    Hi Helene. All I can tell you is that getting the withdrawal (somewhat) under control has improved my sleep greatly. It didn't happen oevernight and it's not perfect, but I'm not having great difficulty getting to sleep and I'm not waking up after a few hours, with no hope of returning to...
  16. R

    Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

    Re the "little" doses Cheney uses: How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheneys most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most...
  17. R

    Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

    The short answer is "no". I was only able to switch to lorazepam after slowly getting down to a very low dose (.036161mg) clonazepam. The switch was made to reduce the total taper time overall - lorazepam has a shorter half-life. I should mention that at the very low dose of clonazepam I got...
  18. R

    Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

    Am I the only one with this problem? You're not alone, NeilK. I began slowly tapering Clonazepam from .5mgs nightly in March '11. It's been a nightmare - suicidal thoughts, uncontrollable temper, searing headaches, etc., etc. However, I was able to manage and in Jan. I was able to...
  19. R

    Fecal Transplants: Seriously, What Do We Think?

    I thought this made a lot of sense awhile ago and did some research. Works great for c.diff. I contacted some docs who were in favour of the procedure for c.diff. - of course not many responded - 2 or 3 did write back saying it would be highly experimental and they doubted there would be...
  20. R

    My visits with Dr. Byron Hyde

    I contacted them via email asking them what kind of successes they had and was told simply that "ME/CFS is not cureable".
  21. R

    Blood Brain Barrier

    Hi Brenda. How much has Samento helped you? Has it been significant? I ask because brain fog/fuzzy head is my worst symptom also and though some things have helped a bit, (ie. d-ribose), it's not significant and lasting.
  22. R

    Advice on EDTA

    I'd be very interested in hearing from Freddd and Rich on this. I'm interested in chelating since I'm pretty sure I have lots of toxins, (pretty sure most 21st century individuals do), and wonder if it will remove good stuff (like the active B's, etc.) as well.
  23. R

    Methylation - hair loss

    How much Biotin is recommended? I've lost a pile of my formerly thick, lustrous mane :) It's a price I'll gladly pay to get better... but I'm a long way from better... yet!
  24. R

    Zinc

    This sounds reasonable. Might get some next order from Iherb. Thanks.
  25. R

    Zinc

    If it's any consolation, I struggled greatly with magnesium, Bcom and vit E, as well, and I'm able to take them now after finding the right brand or going "low and slow". So hoping for same with zinc.
  26. R

    Zinc

    Interesting about toxicty. I tested high for lead about 5 years ago. Underwent IV chelation and was "cleared" of it, but now I understand that it's not that easy. Thinking of trying hair analysis to see what toxins are lurking in me and then address them via slower, oral chelation like I...
  27. R

    Zinc

    48, so not "very" young :) And I actually tested low, + Freddd recommends it as one of the co-factors, so I'm going to keep trying to find some that works.
  28. R

    MSM

    Well, pretty glowing endorsements so far :) And the doc was raving about it. Just goes to show, you can't just blindly follow their advice. Any good results out there?
  29. R

    Zinc

    After months of struggling with a few of the co-factors, I'm finally able to tolerate all - except Zinc. I'm currently using zinc chelate, 25mg, and even at 1/2 a pill, every second day, I'm not tolerating it well - lots of malaise. Any suggestions for a zinc that's more easily toilerated...