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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. C

    Extreme intense itching

    Thanks for the advice everyone, I'm going to try all the suggestions on this page as the itching is driving me mad! I'm speaking with my GP somtime this morning too as I have been getting a bit of a temperature so I'm wondering if it might be something viral? Anyway thanks for the advice...
  2. C

    Extreme intense itching

    Thanks Mark, there is some really useful info in the threads. I'll try avoiding synthetics and see if that helps. If not I think I'll try and see my GP. Do you mind me asking what your itching is like? Mine is like intense episodes, feels like almost crawling on my skin and scratching...
  3. C

    Extreme intense itching

    Hi Nielk, It's not brand new had it for a couple of months so I don't think it's that. Also I stay at my mums quite a bit and still itch there. Thanks for the suggestion though!
  4. C

    Extreme intense itching

    Hi I was wondering if anyone has any advice, over the past week or so I've been experiencing extreme all over body itching. My itching is so intense I have broken the skin and caused bleeding by scratching. It's mainly at night but today I've been scratching almost all day. My mattress is...
  5. C

    Xrmv and Breastfeeding

    Thank you for all your advice and reassurance, it's good to know that there are others who have breastfed their children and they are perfectly healthy. I'm sure the risk is fairly minimal but I have put off his vaccines for a while too. Thanks everyone for your help, Chrissie x
  6. C

    Gcmaf and diet

    Thanks Janey, I saw something mentioned about that. I'll have a look into it. Fingers crossed GcMaf goes well! X
  7. C

    Gcmaf and diet

    Hi there I'm due to star gcmaf on wednesday, does anyone have any advice regarding diet? Are there any foods that should be avoided or increased? I read on an hiv forum that some people stick to a mainly veggie diet? Any advice would be great
  8. C

    Xrmv and Breastfeeding

    Thanks for all your replies, it has really helped to put my mind at rest and put things into perspective. He has had his first lot of vaccinations at 9 weeks and is due for his next ones in a week. Is it possible that the vaccine could trigger the Xmrv in some way?
  9. C

    Xrmv and Breastfeeding

    Hi I am hoping someone can give me some advice on the possibility of Xmrv being passed through breastmilk. I have a 3 month old son who up until today has been breastfed (I am Xmrv positive by culture). When I first found out I was pregnant I emailed Dr JM as I was concerned about passing the...
  10. C

    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    Hi, I havent had a chance to read all the way through this thread but I didn't know if I could maybe offer some advice. I'm XMRV positive and recently found out the I am pregnant, Judy M kindly emailed me with her advice and in my case as I am positive via culture only she said that it is...
  11. C

    Left arm tingling, short of breath, feeling sick

    No I didn't go overboard with anything. I'm actually detoxing! So I have no idea what it was about. I'll definitely see my normal doctor see what she thinks. The neuro stuff is interesting, I've never been to a neurologist but its probably something I should consider. Thanks so much for the...
  12. C

    Left arm tingling, short of breath, feeling sick

    I just had a call from my doctor, he basically said it was a panic attack. I'm pretty certain it wasn't as I was not stressed out at all not even when I was getting short of breath and was totally relaxed when it came on. I'm pretty sure he is a non M.E. believer so probably thinks I'm nuts...
  13. C

    Left arm tingling, short of breath, feeling sick

    Thanks for your advice. I'll go to the hospital this afternoon just to be on the safe side. I'm sure I'll be fine bit I probably should get checked out. When I know what they've said I'll come back on to let you know. I always thought being laid back was a good thing but maybe not in this...
  14. C

    Left arm tingling, short of breath, feeling sick

    Hi Athene thanks for your reply. I don't have the symptoms at the moment but if they happen again I will definitely go and see a doctor quickly. A heart attack must be unlikely surely? 22 year olds don't normally have heart attacks do they?
  15. C

    Left arm tingling, short of breath, feeling sick

    Hi I just wondered if anyone had any advice. Last night I felt really strange became really short of breath, was sick and sweating and my left arm felt really numb and tingly. I know these are symptoms of a heart attack but is that possible in someone my age? I'm only 22 and am not...
  16. C

    Nancy Klimas Opening ME/CFS Clinic Next Month

    I'm going to seem a bit stupid as i'm planning on seeing the woman...but no actually. I will try and find out.
  17. C

    Nancy Klimas Opening ME/CFS Clinic Next Month

    The tests from Kilmas cost $1500 all in. People with insurance can be covered for the testing as far as I know, just not the consultation.
  18. C

    Who is a good US doctor?

    Hi Tony, I'ts great to hear you are doing well with Dr Merlier. I wasn't disregarding fructose tests, its just my sister who was taking me to Belguim is a specialist dietician and she felt than in my case I would be demonstrating specific symptoms with regard to fructose and a few of...
  19. C

    Who is a good US doctor?

    I'd be happy to see anyone! The only thing I think may be a problem with staying in the uk is getting access to drugs. I'm not hugely knowledgeable with regard to anti viral treatment but I think you need to be overseen directly with some of the stronger stuff? I don't think I would be able to...
  20. C

    Who is a good US doctor?

    Hi, I had an appointment with Merlier in October, but I was advised by my Uk doc not to go as he wasn't able to offer anything new and I was slightly put off by some of his tests for fructose absorbsion etc. I didn't know he was looking into XMRV though, I think for now i'm going to see...
  21. C

    Simon Wessely on XMRV

    Well said Katie, I couldn't agree with you more. I can only imagine Holmsey that you arent from the uk? I was diagnosed as a kid in the 90's, my parents were told by shrinks to lock me in a room and ignore me as I wasnt ill, merely attention seeking. And because they were being told this by...
  22. C

    Who is a good US doctor?

    Thankyou for replying so quickly. I'll get in touch with both, its got to be worth a try. Thankyou!
  23. C

    Who is a good US doctor?

    Hi i'm hoping to be travelling to America in the new year for help with my ME. I was just wondering if anyone could advise me on who to contact regarding testing and treatment of xmrv? The UK is very limited with drug therapies and also ME specialists, so I was hoping for some more help...