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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

    Science at the UK CMRC Conference, 1-2 Sept 2014

    Personally I think the only way we can improve is when pharmaceutical companies create viable antivirals & immune boosting /NK drugs. So many people have been unwell after getting a virus & here in the UK u are unable to get I viral count or even if a virus is active!
  2. S

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    I have been taking beta blocker propranolol 40mg twice a day for the last 6 months which has really helped lover the Hard pounding & shaking, but I ran out & did not take any for 3 days, now back on, the beta blockers seem to no longer work :(, heart is pounding so hard that is rocks me from...
  3. S

    IGM HIGH?

    HI thanks, I have been taking acyclovir from sexual health clinic for 12 months for suppressing herpes 2.! Getting antivirals from GP doctor is virtually impossible here in the UK.
  4. S

    IGM HIGH?

    Im in the uk & have finally got a print out of all my blood test results that the doctor says are all normal but I have checked & my igm is high from october last year & may this year. October igm 2.27 May igm 2.49. Lab range 0.50 - 2.00 Mid last year tests show ebv & cmv antibodies in my...
  5. S

    How to improve immune function? - UK based

    As far as I am aware here in the uk they do not do levels test just immuglobulin for past infection tests? Unfortunately
  6. S

    How to improve immune function? - UK based

    Hi thanks I have now been on aciclovir (as it is spelt in the uk) for 12 months now for herpes suppression not sure if it is helping or not, but dont want to come of it just in case it makes me worse? Aciclovir is the only antiviral the NHS sexual health clinic have.
  7. S

    How to improve immune function? - UK based

    Is acyclovir similer as immunovir for helping the immune system? Or is it just an antiviral, I have antibodies for EBV, CMV & herpies 2. Temp between 36.5 & 37.0ºc constant feel cold but skin feels hot.
  8. S

    Feeling better after sweating.

    You are lucky there is NO test here in the UK for level testing they only test if you have been or recently been infected :( All Dr says is you have no active viruses, but impossible to say that if there are no tests for levels. I am so cold intolerant I have cold sweats & shaking every day...
  9. S

    Temperature Intolerance ideas?

    I am extremely cold intolerance I have to wear 5 layers all winter outside & I am still chilled to the bone. Even now in June where it is 20°c outside I have to wear 4 or 5 layers. Any breeze on my face or hands sends me shaking & freezing for a few days, but I am NEVER warm, my internal...
  10. S

    Does everyone who has ME/CFS have Fatigue ?

    If you have no fatigue could you have "post viral syndrome" instead m.e. /cfs?
  11. S

    UK: Department Work & Pensions Assessors Training Guide to ME/CFS Published - 28 May 2014

    It's disgusting really NICE & the benefits you are too I'll to work but not I'll enough to pass stupid questing to get benefits. Everyone can see your ill your symptoms say you are ill BUT because all blood tests come back normal, obviously you are not ill. Will we ever get a blood test to...
  12. S

    Does everyone who has ME/CFS have Fatigue ?

    I think I have a mild form of fatigue! I am no were as bad as out on here. I get slight brain fog & start to feel tired in the afternoon but feel a bit better when get home from work. I haven't been bad enough that I have to go to bed before 10pm well not since last September. It's for...
  13. S

    The beginning of the end of the UK Work Capability Assessment?

    They just need to get rid of the point system & have a medical professional sit & ask what's wrong & run tests. Too many are too ill to work but not ill enough to get help.
  14. S

    The Work Poll

    13 months unwell coped for 5 months then 2 months off I'll now back to work 6 months Still unwell but still working, I am told I have to go on a 5 day I. T. Trying course or I will not be fulfilling my job & it's been 6 months back in work are you not better yet! , which soundly like do the...
  15. S

    Cold Intolerance but no fatigue!

    Hi yes CMV was a new infection last year, which I believe has caused my current illness, there is no test to see the viruses are currently active. I got my results for IGG 12.63 , IGA 2.38 & IGM 2.49 they said all normal? over the phone but will ask for a copy next time in Doctors.
  16. S

    Cold Intolerance but no fatigue!

    Hi yes I take my temperature first thing in the morning as well as through the day sometimes. I was given my thyroid result which they did say was normal but cannot remember the number I will have to ask for it again. Do you no the normal range?
  17. S

    I dont get Fever

    No never get a fever it stuck at a normal temperature even if my skin temperature is over heating & I am shivering & shaking, & because my internal temperature is normal, Doctors just say, nothing wrong, even though been ill for 13 months.
  18. S

    Does everyone who has ME/CFS have Fatigue ?

    If you have M.E. / CFS does everyone get some form of regular fatigue?
  19. S

    Cold Intolerance but no fatigue!

    Immunologist thinks I have Post Viral Syndrome?? Blood tests show past infection with EBV & CMV also have Herpes type 2, All other blood test come back normal, FBC, Thyroid. Been ill for 13 months, symptoms include - *** Feeling cold all of the time, 5 clothing layers on when outside even...
  20. S

    my famvir trial

    Many thanks, I will try 125mg twice a day & maybe also stay on the acyclovir. Do you think it would be ok to take acyclovir & famvir?
  21. S

    Famvir- my story

    I have been on Acyclovir for 5 months since becoming ill, i stopped taking Acyclovir 400mg 3 x day & changed to Generic Famvir (Famtrex) 250mg 3 x a day within 2 days my sleep is dreadfull, I have been having 8 hours good sleep but now takes forever to get to sleep & feel so bad when I wake...
  22. S

    my famvir trial

    I have been on Acyclovir for 5 months since becoming ill, i stopped taking Acyclovir 400mg 3 x day & changed to Generic Famvir (Famtrex) 250mg 3 x a day within 2 days my sleep is dreadfull, I have been having 8 hours good sleep but now takes forever to get to sleep & feel so bad when I wake...
  23. S

    Does anyone NOT have flu-like malaise?

    I have mild flu like symptoms for the last 5 months almost constant, I have chills & body feels hot to touch & clammy but I feel cold (but thermometer says only a very slight temp increase sometimes). I have skin flushing/rash over most of my body & face. Its very unpleasant & now feel so bad I...
  24. S

    Famvir- my story

    Heapsreal, Many thanks, I will look at this website & have found the thread with other links. Cheers.
  25. S

    EBV & CMV, Flu like symptoms??

    Been back to the Dr & he Refused point blank to try me on Famvir or any other antiviral because there are no clinical studies & he does not care about what I have read on blogs. Help can anyone suggest any websites that I can buy Famvir without a prescription (I hear from india are the best)
  26. S

    Famvir- my story

    Been back to the Dr & he Refused point blank to try me on Famvir or any other antiviral because there are no clinical studies & he does not care about what I have read on blogs. Help can anyone suggest any websites that I can buy Famvir without a prescription (I hear from india are the best)
  27. S

    EBV & CMV, Flu like symptoms??

    Sorry I forgot to add that I have been on Aciclovir from the G.U.M Clinic for over 5 months for herpes suppression, but still feeling unwell. I have read that Famvir or Valtrax work better than Aciclovir, but Dr's say they dont????
  28. S

    EBV & CMV, Flu like symptoms??

    I do read that some have had success with Famvir or Valtrex, I have asked a couple of times, & they keep saying they dont work. I have seen 2 different DR is the same surgery but they keep saying the same. The NHS is sometimes like talking to a brick wall.
  29. S

    Famvir- my story

    Hi thanks for the relpy, I have been ill for the last 5 months now, but bad the last 2 weeks & have been off work since then, body does not seem to be healing self & I think it needs some help. I have not been diagnosed with anything yet, just that I have EBV & CMV, they just seem to say it is...
  30. S

    EBV & CMV, Flu like symptoms??

    I have been ill with flu like symptoms, slight hand shaking & a skin blushing/rash on most of my body including face. I have had this for 5 months now. No real fatigue, just feel the cold easily & them get a chill & shiver. I have had So So many blood tests, I have has Herpes 2 for over 4...