Posted 11/17/2012 3:48 PM (GMT -7)
I have EBV version of CFS although I didn't know they could tell it was active or not other than by symptoms. Of course my docs all act like I have the plague or something the doc who diagnosed me wouldn't even tell me what it was, I had to come here to find out it was some strain of mono(which I never had) and my current and aslo temp doc told me "its not treatable, except for the symptoms, and I leave that up to your specialists." Is there a specialist for EBV/CFS? I doubt it, I've had the entire gamut of symptoms including naseau, diarhea, constipation, vomiting and now vertigo which no one will touch. I literaly vomited for a months, I couldn't keep water, chicken broth or my medications down on and off, one day stuff would stay down the next, not. I ended up in the ER for dehydration and pain, lost 12lbs and my pcp docs contribution was a script for zopham(it worked once or twice)and a ref. to a gastro who freaked out on me told me I needed to go back to the hospital but wouldn't schedule me an endoscopy? I've seen an ENT who didn't have an opinion either except that I needed to see my neuro doc. So my DX so far is food allergies, I've had gluten, wheat and lactose intolerance for about 7yrs. Those tests are wrong about 70% of the time and the only way to really be sure is to stop eating whatever you think its for 2weeks and then add it back in and see what happens. Oh and check out the Celiac link, thats where I get all my info. I apologize for ranting on your post but I just started getting dizzy, naseau vomiting again yesterday, hopefully because I ate a hamburger with bun, I've been good for almost a month otherwise and I have felt somewhat better.
Fibromyalgia, Chronic Fatigue Syndrome, Brain Tumor 2nd, crainiotomy 2002, radiation 2007, mild scoliosis, carpal tunnel, surgical menopause, 44yrs old and on disability since 2009.