Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 Unbelievable. Go to the CDC website and download the information on CFS. I read this and it changed my life. CFS is real and if you don't treat it, the results could mean the difference between living and being bed-ridden. Not my idea of fun at 40. I crashed from drinking too much caffeine,and too much sugar just to stay awake. I was in so much pain I just wanted to die. I had to make a total lifestyle change; no more work, no more stress, I cut out lots of foods I had been eating and I left my demanding husband. He couldn't understand that I needed to rest and have someone take care of me, but he wasn't going along. Selfish. It's been two months since I made the change and filed for disability. I rest when I'm tired and I have some sleep aids to help me rest through the night. My outlook is better, and I'm happier. CFS is REAL. I took the CDC info to my doctor and she added it to my diagnosis. Find a doctor that lives in reality, K? God bless everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 You definitely do need him to test you for everything else that could possibly explain your symptoms, in case the doc can find something that can be cured. If he cannot find anything, I would consider finding a doctor to do the RnaseL blood test which is a specific diagnosis for ME/CFS. (It measures the molecular weight of RnaseL, which your immune system uses to kill viruses while they are reproducing inside your cells and which is halved in ME/CFS.) You will have to do this privately as it is not yet paid for by the NHS or US insurance companies, but at least it will give you certainty. If you think it is worth persisting with this doctor you could also order the hydrogen sulphide urine test from www.proteabiopharma.com and take the result to him to see how he can explain that you have hydrogen sulphide poisoning. Also, if it comes up negative, you don't have ME/CFS which would be good t0 know!) When I was diagnosed with ME my GP said " What? You don't seem the sort to get a psychosomatic illness. Don't tell anyone at all about this, especially not at work or you'll never get another job in your life. " I really liked and trusted her but I had to change doctor. There have been over 5,000 research articles published which prove and explain the vast range and amount of biochemical and physical changes that ME/CFS brings about. You get no help from a doctor who hasn't read any of them! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 Find another doctor. diane I had a doctor's appt today and I specifically asked him if I had CFS. He said, " That doesn't exist " . He said that that is something doctor's diagnose when they don't know what is wrong. So he is ruling out all kinds of other stuff, but my question is....when that diagnosis is all that is left, will he diagnose me with that? He said that even if he did diagnose me as having chronic fatigue, it wouldn't mean anything anyway. I was kinda wondering how he figured that. I mean, I know that no medication can really help. I just know that the fatigue I have experienced over the last year is way different than the fatigue I have had with the fibro. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 to the bestof myunderstandng therre is no diagnnostic test for CFIDS YET byt hear the researchers are working on it. diane You definitely do need him to test you for everything else that could possibly explain your symptoms, in case the doc can find something that can be cured. If he cannot find anything, I would consider finding a doctor to do the RnaseL blood test which is a specific diagnosis for ME/CFS. (It measures the molecular weight of RnaseL, which your immune system uses to kill viruses while they are reproducing inside your cells and which is halved in ME/CFS.) You will have to do this privately as it is not yet paid for by the NHS or US insurance companies, but at least it will give you certainty. If you think it is worth persisting with this doctor you could also order the hydrogen sulphide urine test from www.proteabiopharma .com and take the result to him to see how he can explain that you have hydrogen sulphide poisoning. Also, if it comes up negative, you don't have ME/CFS which would be good t0 know!) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.