• 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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Search results

  1. Gecko

    Acyclovir for CFS & meniere's - Experiences, hair loss?, general thoughts?

    Hi all, I have been put on Acyclovir, 400mg 3 x per day for Chronic fatigue (and also through my own research for Menieres). I have been on it for about a week with no changes. I have also just started taking L-Lysine alongside. Does anyone have any comments or experiences on Acyclovir? I am...
  2. Gecko

    Jo Bongiorno - routine and success story

    Hi all, Along with my CFS I have many Menieres symptoms and in fact this is what I was initially diagnosed with before it being changed to Labyrinthitis, then CFS. I beleive this is where the virus started with me and the subsequent illness. (I have blocked ear feeling, dizziness, fatigue...
  3. Gecko

    Atlas subluxation - Link to illness?

    Thanks for the advice guys. I just put a post up on my experience prior to this regarding a chiro/osteo with similar claims that has made me worse. I'm now looking for someone just to sort out my new found back and neck pains!!
  4. Gecko

    Chiropractics/Ostepathy for ME/CFS - worse than before!

    Hi all, I was suckered into another hindsight scenario where I was told that my symptoms could be caused by my C1/C2 vertebrae being misaligned. After further research and thinking it wouldn't do any harm (plus a large amount of desperation) I went to see the Osteo/Chiro that made these claims...
  5. Gecko

    Atlas subluxation - Link to illness?

    Hi all, Another avenue I almost pursued in my desperation was related to the Atlas vertebrae. I don't fully understand the 'science' behind the theory but it relates to nerves and blood vessels being blocked by the Atlas being subluxed. I actually made an appointment with an Atlas Profilax...
  6. Gecko

    Completely eliminated my severe anxiety symptoms with three supplements!

    I think I may try the first 3 you recommend. N-acetyl-glucosamine - is simply Glucosamine or Glucosamine sulphate ok?
  7. Gecko

    Research Trial for Sodium Oxybate - Should i volunteer?

    Thanks to a recommendation, I emailed about a study on the effects of Sodium Oxybate on ME/CFS and received a response in the affirmative that I could attend if I wish. I was hoping you guys could take a glance and let me know what you think? (below) Has anyone partaken in a trial before? It...
  8. Gecko

    Doctors, treatments and facilities in New Zealand? - Thinking of moving there...

    Thanks for the reply! It's called a temporary working holiday visa which apparently is different. After speaking to the embassy I don't think I'll have much trouble obtaining the temporary visa but it's all down to if I should go or not based on personal circumstances. That does worry me that...
  9. Gecko

    Breakspear, KDM or other suggestion? Should I go?

    I recently had a consultation with Jean Munro at the Breakspear clinic. Consultation was £210 and the recommended initial tests are around £3250 including a neurologist appointment with Dr Peter Julu. I do not have this kind of money but is it worth me obtaining it and continuing with this...
  10. Gecko

    Doctors, treatments and facilities in New Zealand? - Thinking of moving there...

    Hi all, In my often failed endeavors to not let this all completely destroy my life I often try to push myself to do things that at least give me some vague feeling of control and excitement even if those experiences are a struggle and more than marred. It has always been my dream to move to...
  11. Gecko

    Joseph Cohen - Self hacked

    has anybody heard or dealt with Joseph Cohen? His website http://selfhacked.com/ has a lot of insight into many CFS and ME symptoms. I was drawn to him because of my severe brain fog, which he cured himself of, and he seems very intelligent and well read....too much so in many ways as I find a...
  12. Gecko

    Advice needed please. After 10 years could this be the answer!?

    Hi all, thank you for your replies! I am still yet to get B12 injections but I am verging on persuading the Doctor after an NHS chronic fatigue clinic recommended as such. Thank you for vit d insight Martial! It does bring a little hope if that could reverse damage, especially as it seems to...
  13. Gecko

    Can I have hope? :( My latest treatment attempts & failures + Anyone heard of the Wimbledon Clinic?

    Hi all, I am tempted to write my whole back story but you’ve heard it all before although there are a few variants to the most common stories. I may write in more detail at some point but as it stands I just have some questions and comments for you if you don’t mind? Firstly….Can I have...
  14. Gecko

    Advice needed please. After 10 years could this be the answer!?

    I've just returned from the doctors after asking for a b12 test. I had a level of 247 bit was told it is normal. I have had chronic and severe brain fog, tinnitus, chronic fatigue, strained head/headaches, along with 'fullness' of the ears, a vibrating sensation, ear aches with fluctuating...