• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. D

    SOD

    I had my genetic profile done by 23andme, which costs $99, then ran my 23andme raw data through GeneticGenie http://geneticgenie.org
  2. D

    FMO3 gene

    Hi, Has anyone heard of any research that may implicate the FMO3 gene with CFS/ME? I have a couple of genetic variations that predispose me to TMAU (fish odour syndrome), but as far as I'm concerned, TMAU is only a symptom of malfunctioning FMO3. My version of TMAU is intermittent and...
  3. D

    Article: The Best XMRV Study Underway? Dr. Singh Talks!

    My ME abruptly started within hours of having uterine surgery. Ovaries not touched but, with hindsight, the surgery prompted a sudden drop in oestrogen production. My gyn consult says there are anecdotal reports of sudden, premature, menopause precipitated by uterine surgery, although there...
  4. D

    Palpitations

    I've had palpitations and 'skipped' beats for years, moaned at my GPs, had tests, sent to a Cardiologist etc etc etc, but all tests came back clear, except, at a routine time each evening, monitoring showed that my 'skipped' beats were not actually skips, but a slightly weaker than normal beat...
  5. D

    New here please help/sleep disorder

    I had 'insomnia' for years, Temazepam sometimes knocked me out, but, usually, it didn't. I'd go to bed and lie awake for hours. The problem got much worse as my M.E. increased in severity. I finally realised that as long as I stayed up until I feel tired, when I went to bed I would fall...
  6. D

    UK Daily Mail publicises PACE

    "Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study" Yes, the Daily Mail is covering the PACE results too. http://www.dailymail.co.uk/health/article-1358269/Chronic-fatigue-syndrome-ME-patients-exercise-best-hope-recovery-finds-study.html
  7. D

    Comment by 'dotdot' in 'LDN 1.4 and other things'

    Hi, thanks for your comments. The metabolism thing has always been an odd feature, since I was a teenager. I've never been able to get drunk (!), I develop tolerances incredibly quickly to certain drugs, and, conversely, I'm very very sensitive to others (LDN, possibly?). It seems there are a...
    • dotdot
    • Blog entry comment
  8. D

    LDN 1.4 and other things

    I've been on 1.4 mg/ml LDN for a couple of days, had been on 1.3 mg/ml for 5 days before that. My sleeping is chaotic - got up yesterday at about 10am, slept from 4.30pm until 9.30pm, stayed up until 8am this morning, then back to bed and slept until 3pm this afternoon. Currently awake...
  9. D

    Most efficacious in every case. Not

    Thinking about taking LDN, and the process of slowly increasing the dosage, has coincided with taking Furosemide for water retention. I hope my reaction to LDN isn't the same as my experience with the diuretic... My experience of drugs, legal and otherwise, is that, quite often, I have a...
  10. D

    Comment by 'dotdot' in 'LDN and me'

    I have 50mg dissolved in 50ml, so I tend to think of the amount in terms of the liquid I draw into the oral dosing syringe. I'll write it as mg/ml from now on - is that clearer? I'm not sure! I have Displaced Sleep Phase Disorder - I tend to go to bed at 5 or 6am, get up somewhere between 1pm...
    • dotdot
    • Blog entry comment
  11. D

    LDN - up to 1mg/1ml

    Took a dose of 1ml (=1mg) LDN last night, without too much ill effect - I think I'm getting used to the stuff now. I want to get up to 1.5 as soon as I can (the recommended initial dose), so that, psychologically, I feel like I'm, at least, at the start of maybe getting somewhere. Atm I'm...
  12. D

    Low dose Naltrexone

    Hi Moonchild, the facial pain and pressure thing (and dizziness, sometimes progressing to full blown vertigo) has been a problem for me for a couple of years, initially diagnosed as Sinus infection. After a year of antibiotics and steroid sprays etc etc etc, the Consultant has decided it's not...
  13. D

    Switching to daytime LDN

    I missed last night's LDN and I'm about to take a dose now. I'm increasing it to 0.8ml and it's now 4.30pm - hopefully it won't keep me awake tonight - having taken the dose earlier in the day, rather than midnight, as I had been doing.
  14. D

    dotdot

    • dotdot
    • Blog
    • Blog entries: 5
  15. D

    LDN and me

    I posted on the Low dose Naltrexone thread the other day and thought it might be helpful if I blog my initial LDN experiences, so here goes... First off, I'll copy (with a couple of corrections) what I wrote before, after that I'll be updating in real-time...
  16. D

    Low dose Naltrexone

    I started taking LDN about a week ago. I got a prescription from my lovely GP, who even faxed it through to Glasgow for me. The LDN then arrived in the post. The recommended initial doseage level is 1.5ml, which I took the night it arrived. Oh dear! Palpitations, nauseous, dizziness, extreme...
  17. D

    Rhesus Negative

    Hi August59, And I'm B neg, so that's 2 of us then! :cheeky grin: trace
  18. D

    Rhesus Negative

    First of all, I know next to nothing about the general implications of having Rhesus Negative blood, mostly because I can't find anything much on the web. One of the main subjects of internet discussion seems to be whether RH- humans are actually descended from lizards... so maybe the problem...
  19. D

    Hormones

    M.E. after myomectomy - fibroid surgery I've been diagnosed as having M.E. since '99... This illness appeared immediately after I had surgery to remove a fibroid. Literally, I had surgery, came round for a few minutes in the ward and felt brilliant, fell asleep and woke up again a couple of...
  20. D

    CFS Blood Bank Drive

    As a veteran of Feminist, Gay then AIDS activism, errr, what's 'ethical' got to do with it? Nobody is being physically harmed (except ourselves probably - I know I'll end up knackered!) and, for me, that's the primary ethical consideration. This arguement is typical of most groups...
  21. D

    Article: XMRV at the Fed: Conspiracy or Confusion?

    Maybe the CDC are bolstering their psychiatric definition of CFS, knowing that the Canadian definition is going to be adopted very soon - courtesy of the WPI work. They're preparing for that split, and they're just trying to make sure their CFS-lite/ psychiatric definition stands strongly in...
  22. D

    Article: XMRV at the Fed: Conspiracy or Confusion?

    What happened to Peter Buxton?
  23. D

    Article: The CDC XMRV Study: How Not to Find XMRV?

    strategic pause There's always the possibility that this paper is Reeves' last gasp and it had to be published. Maybe Alter's study is being held back to provide a 'strategic pause', as it says in 'Nature', before utterly contradicting the 'Reeves' study and re-directing the CDC's research...