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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. S

    Relevance of CellTrend results for treatment

    Thanks @Castorp. Agree re treated with caution. From my perspective (CFS for 25 years, and have now reached a point of being relatively functional), I'd still love to have a conversation with a clinician who's across the field. (Doubtless someone like Dr Scheibenbogen would be interested in...
  2. S

    Relevance of CellTrend results for treatment

    Does anyone know if Dr Scheibenbogen sees patients ... or if there's another clinician who's across the CellTrend panels who sees patients? I did the POTS panel and have a number of elevated autoantobody readings, but wonder who I can talk to about possible treatments.
  3. S

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    Hi @2Cor.12:9 - no, am not taking anything else. Re dosage - I was on the 1000mg for a couple of months and noticed benefits. I do think they (benefits) increased somewhat when I increased the dose. My doctor's experience is certainly that 2000mg sees people getting best results. Cheers, S.
  4. S

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    Hi all - just thought I'd post an update on my treatment with Valtrex (valaciclovir). In an earlier post I wrote: "Whatever the lowest level of cautious optimism that exists as part of human consciousness, divide that by ten ... and that's where I am". At that stage I had been on 1000mg a...
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    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    Hi @2Cor.12:9 (and anyone else who's interested!) - just thought I'd post an update on my adventures with Valtrex (valacyclovir). I've now been on 1000mg for a bit over a month. (I'll increase that to 2000 in a few weeks). Whatever the lowest level of cautious optimism that exists as part of...
  6. S

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

  7. S

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    @Learner1 Yes - other anti-virals are possibilities if the valacyclovir doesn't help - will evaluate at three months. I believe people with EBV and HHV6 have responded to valacyclovir. @2Cor.12:9 - happy to compare notes as we go. I'm still feeling pretty 'off'. Have been on the 1000mg for eight...
  8. S

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    Hi @hopeandsparkles - thanks for your (very interesting) post. Are you still taking the valacyclovir? Just wondering if you could identify differences in ingredients/excipients which could explain the bad effects of the generic versus the brand? Also, can you tell us what brand you took which...
  9. S

    Amisulpride — A Multipurpose Drug for ME/CFS

    Thanks for that. I'm about to try a low dose of selegiline...but if that's not useful I think amisulpride is another for me to try. Cheers, S.
  10. S

    Depression Tied to Infections, Autoimmune Disease

    Many thanks! S.
  11. S

    Amisulpride — A Multipurpose Drug for ME/CFS

    Such an interesting thread! I've been convinced about the role of dopamine in me/cfs (at least my version) for many years, but unable to find a sustainable way to address it. Thanks for all the insights @Hip
  12. S

    Depression Tied to Infections, Autoimmune Disease

    Hello Marco - I'm just re-visiting this old thread. I'm very interested to read your blog posts above, but these links don't seem to be working? Can you point me in the right direction? Thanks!
  13. S

    Low dose Naltrexone

    Thanks for the responses. GG- my sleep quality has been affected (fitful sleep/not rested)...but last night it was probably a little better, so that may be settling. It's more the washed out feeling + some depression/nausea. Also noticeable facial pallor and thinner face- I 'look' more ill...
  14. S

    Low dose Naltrexone

    Hi all I have been on LDN 1.5mg a night for 4 days now. (I have me/cfs) Can't say the initial experience has been much fun. It's not a strong effect...but what's happening is making me feel wore, not better, at this stage. Makes me feel drowsy and ill the next day and my face is noticeably...
  15. S

    Similarities between ME/CFS and MS

    Ok- just to be clear, I am not talking about 'piggybacking to get recognized' (what does it matter what some people on an MS forum say!!??) or 'ms-light' or tangential questions about the evolution of the human diet. (I could refer to the health benefits of a Mediterranean diet, which has been...
  16. S

    Similarities between ME/CFS and MS

    Thanks Mij. Ummm- I'm a little confused by your response. At no point did I suggest ME is "MS light" or anything of the sort, so perhaps it wasn't necessary to respond in a terse/defensive fashion?! I know this "Ms Light" concept has been referred to in earlier posts, but I am not your straw...
  17. S

    Similarities between ME/CFS and MS

    I have just read the excellent book by Professor George Jelinek "Overcoming Multiple Sclerosis- an evidence based guide to recovery." The recommendations in the book come across as very credible, especially given the amount of evidence marshalled to support them. I was just wondering if anyone...
  18. S

    What's your CD4/CD8 ratio?

    Just dug out test results from 2012 High cd 4 High cd4/cd8 ratio "Mild reactive changes" etc. I also found test from 1998...which showed similar thing- high cd4 and high CD3...but npot high CD4/CD8 ratio. "Response to subacute virus /inflammatory response" etc
  19. S

    BETRAYAL by the BRAIN: Jay Goldstein, MD - Has anyone read???

    Thanks Jacque. I am in Canberra, Australia but I definitely like the idea of getting in touch with Dr Madill so will follow that up. My feeling is that infection is often the cause of these illnesses (+ other variables such as genetic pre-disposition, specific environemnetal stressors etc)...and...
  20. S

    Depression Tied to Infections, Autoimmune Disease

    The ME/CFS community has done itself a massive disservice by only/primarily characterising disturbed mood as a 'reactive' phenomenon in the condition- lots of sufferers have disturbed mood as a central symptom- hardly surprising for an illness that involves the brain and central nervous system...
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    BETRAYAL by the BRAIN: Jay Goldstein, MD - Has anyone read???

    Just stumbled on this old thread. I actually think Jay Goldstein was a genius and was way before his time. I agree to an extent with those who suggest he wasn't focussed on the 'entire' picture....but his willingness to trial many medications off-label remains above and beyond what is available...