• 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 (FM), 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. Diva55

    Esophageal dysmotilty/poor gullet peristalsis/ineffective oesaphageal motiltiy

    It showed on the gastroscope (camera down the throat). I believe is quite obvious as it's a lesion. They took a biopsy as well but think that was to test for bacteria. I had a barium, ultra sound, camera both ends about 2 years ago as I had a painful swollen stomach - I was diagnosed with...
  2. Diva55

    Esophageal dysmotilty/poor gullet peristalsis/ineffective oesaphageal motiltiy

    Hi I've had the food getting stuck about half way down my gullet (about mid chest) for some time. I have to, in effect, burp up to get it down but not with acid reflux. - very painful & unpleasant. I had a gastrocopy a few days ago & they diagnosed a Sliding Hiatus Hernia & prescribed...
  3. Diva55

    Low dose Naltrexone

    Video on How LDN works in the body In case people haven't seen this. A very interesting (& simple!) video on how LDN works in the body. Good website for info on LDN as well. http://www.ldndatabase.com/
  4. Diva55

    Esther Rantzen, Lightning Process & Coeliac

    This is in todays' Daily Mail (UK Newspaper). Remember when Rantzen said LP had cured her daughter! How many people flocked to get the same cure because of her?? --------------------------------------------------------------- At last, I have discovered the secret of Emily's 14 lost years...
  5. Diva55

    Low dose Naltrexone

    Dr. Tom Gilhooly's Newsletter This was posted on an LDN Yahoo group. Interesting explanation about how LDN acts on addiction & FM.
  6. Diva55

    Scientists find gene that could help body cure itself of HIV

    I was attracted to the "immune exhaustion" idea as that seems a good explanation for us. I did wonder if LDN might fit into the puzzle in some form as in theory that moderates the immune system to enable it to fight but obviously doesn't target specific as this seems to do. But to be able...
  7. Diva55

    Scientists find gene that could help body cure itself of HIV

    This article was in The Daily Mail (UK newspaper) today. Maybe it could fit with XMRV or even CFS / ME / FM. ---------------------------------- Scientists find gene that could help body cure itself of HIV By Fiona Macrae Last updated at 11:19 AM on 4th February 2011 Scientists may...
  8. Diva55

    EECP Treatment is Very Helpful/My Daughter Helped Alot

    This sounds intriguing. I looked up a UK site and found this video at a private clinic. Not sure if I would be strong enough for the treatment as it looks a little uncomfortable. Although they're talking about treatment for Angina they do suggest 35 sessions...
  9. Diva55

    Low dose Naltrexone

    Hi Jenny I'm sorry to hear you are going through such tough times. Hope it improves for you soon. I have FM and was also diagnosed a few years later with CFS. Although I personally think that the CFS component is part of FM. I had a viral onset for FM. Still waiting for my XMRV home draw...
  10. Diva55

    Touch & Pain Response

    LOL keeping hands together permanently! Ive had a look at most of the techniques you mentioned none caught my eye. I was put through CBT / GET by the NHS. Surprisingly they didnt push it too much as I think I made it obvious what I thought of it. I suppose people with little...
  11. Diva55

    Touch & Pain Response

    I know this article on the surface seems a little silly but I was intrigued by the "mirroring effect" & the brain response (I've bolded some sections) As my FM pain responds to nothing I will give even a silly notion a go! ------------------------------------------------------------------...
  12. Diva55

    Stem Cells

    I don't know if this has been posted already or whether it's appropriate to post it here. The UK newspaper - The Daily Mail- has an article on stem cell research and trials on stroke patients. It goes on to say that it could be used for a wide variety of patients and even mentions the C...
  13. Diva55

    WPI UK XMRV testing/study

    Hi I cannot access the forum - even though I've registered. I've not had my blood drawn though I'm supposed to be included in the study. So you could update this list or even PM me. I'd really appreciate it Thanks
  14. Diva55

    Low dose Naltrexone

    Hi Frank I think that may have been me further back on the thread when quoting something Dr. Zagon had written. It was discussed a lot on one of the LDN Yahoo groups. www.forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone&p=92840#post92840 It's post number 503 As I said...
  15. Diva55

    Low dose Naltrexone

    My simplistic take on LDN is (sorry if this has already been stated): LDN is an immune modulator. So if your immune system is low it is raised, if it is high it is lowered. So once your immune system is being "normalised" it jumps into it's main job of dealing with invasions such as bugs and...
  16. Diva55

    Low dose Naltrexone

    I was thinking of going to a much higher dose after tolerating 1.5mg. However I've had some periods of incredibly bad FM pain with scary chest pains. When I've had these episodes I've stopped LDN. It's difficult to know if these are just bad FM flares or if they are related to LDN stirring...
  17. Diva55

    Low dose Naltrexone

    It does make more sense to me for LDN to be called an immune modulator - I always have trouble following anything too scientific! However it seems that if your system is being modulated it will kick up some nasties especially for all us senstive ones, hence the side effects we mainly seem to...
  18. Diva55

    Low dose Naltrexone

    I've been browsing the LDN Yahoo forums and came across some information which confused me a little. Dr. Zagon is one of the original doctors to bring LDN to the forefront through studies on endorphins (don't quote me on this as my brain is mush!) This first part was enquiring about twice a...
  19. Diva55

    Low dose Naltrexone

    Hmm - all very confusing when you hear about different doses. I'll stick with 1000iu for the moment and then slowly raise it to see how it goes. Thanks for all the input.
  20. Diva55

    Low dose Naltrexone

    Hi ggingues The reason I take 1000iu Vitamin D is because when I spoke to Stephen Dickson he recommended 1000-1200iu a day if I hadn't been tested. I can't get Vitamin D testing on the NHS, although I'll try again. I always have a fear of overdosing on Vitamins as I am very sensitive to all...
  21. Diva55

    Low dose Naltrexone

    That's great you have been able to do a steady increase each week. Due to Stephen Dickson's advice I've starting taking 1000iu D3 a day. But I'm still not back on LDN as I'm having an awful pain flare in my neck, jaw, ear which doesn't want to settle. So until then I'm not back on LDN -...
  22. Diva55

    Low dose Naltrexone

    Hi Jace Great to hear you had 2 great weeks. What dose are you on now? How long have you been taking LDN? And are you taking Vitamin D along with it? I've stopped again but will get back to it soon. I'm recklessly thinking of starting at a high dose maybe 3ml to see if that suits me better...
  23. Diva55

    Vitamin D reduces mother to child transmission of HIV

    Interesting - thanks I was advised by Stephen Dickson who dispenses LDN to hundreds (or more) people around the world that I should be taking Vitamin D alongside LDN. He told me that I should be tested for Vitamin D levels and if not to take between 1000 -12000iu a day. As LDN is an...
  24. Diva55

    Low dose Naltrexone

    Excellent video - thanks Frank. How are you doing on LDN?
  25. Diva55

    Low dose Naltrexone

    Hi I'm the one that started at 0.1mg. I stayed on it for about a week before slowly increasing. I waited until I felt more able to cope. But it's a very individual thing as you stay on the dose until you feel strong enough to try a higher dose. There is a Yahoo group that deals with VERY low...
  26. Diva55

    Low dose Naltrexone

    The LDN poll is in this General Treatment Section about 11 threads below this one. It's not a Sticky as other polls are. It was started by Jace.
  27. Diva55

    Low dose Naltrexone

    I had / have the neck pain that Leaves had. Also bad headaches (although I've had a continous headache for years) and very bad pains in my face & ears radiating to my teeth. It's difficult to sort out FM pains with what LDN might be stirring up but the neck & face pain felt new which I think...
  28. Diva55

    Low dose Naltrexone

    There are a number of online pharmacies that you can get it from without a prescription. It comes in 50mg Naltrexone pills which you make into your own LDN solution. I think alldaychemist.com is one of them. They are under different brand names One is Naltima but there are others I cant...
  29. Diva55

    Acupuncture relief link identified

    Before being ill I had acupuncture quite a few times with no problem So I decided to have it for FM / CFS. I was extremely surprised that the needles hurt when going in as they hadn't even registered before. I told the therapist that they hurt and he said it was because I was very senstive...
  30. Diva55

    Low dose Naltrexone

    I too use the liquid which I preferred to pills . I've read that there' s a transdermal cream available which was designed for kids. Sounds good for sensitive people but I'm sure it's difficult to get hold of. I've had a 2 week break due to trying to get my rash & virus under control. I...