One Doctor

[Padro46]

Like everyone else, I have been dealing with EBV since Dec 07 or so they say.  Have spent many $$$$$$ on MRI, Chest X-rays  Blood Test etc.   Have come to the end of my rope,   Everything but the EBV panel is negative.  Back of the head pain sometimes, Lightheaded just about every day,  Light pains that move around sometimes stomach sometimes chest (have went to a heart doctor as well (acis reflux or so they say)   Does anyone have ONE Type of doctor that might be the ONE to talk to about this??   From what I read there is NOTHING that can be done>

[woody53]

My wife was recently diagnosed with EBV. She has expereinced low Hemoglobin (8.4-9.7) and has many of the symptoms described by others. She has an appt with a hemotologist in the next 3 weeks. Cannot get her hemoglobin levels above 9.7 and is not producing red blood cells.  Not sure what that really means?  She is concerned about bone marrow issues. Any ideas?  

[iwannasee]

I have been battling this since 1957.  Yeah you read that right... 1957.  I was 10.  Misdiagnosed by the Army doctors.  Sent to a shrink that told my parents to discipline me more because I was lying.  Several months of spankings and running away instead of resting my body was ruined by the time it (Mono) was detected by a civilian doctor.  I've played hell to this day.  I've been to every type of doctor, in several hospitals, taken every test imaginable so many times I've lost count, and pills out the gazoo.  No one could find anything or do anything.  When CFS was discovered by the medical society in the 80's, that fit my problem but no one knew what to do with it either.  Even now, the CDC and the CFS organization are messing things up (long story) and dropped the neurological symptoms involved.  This is now the ME part of CFS.  There is another organization that calls it CFIDS/ME, and I go more with that.  But no one seems to know what to do about it in my area.  I still have constantly high EBV readings, much higher than you'd get if it's just showing that you've had it sometime in your life.  Anyway ... after the hell I've experienced with being called a liar, that I was nuts, that there was nothing they could do, the bad side effects of the pills they did try, I have totally given up on doctors and have gone my own way with it.

Because I am super sensitivities to foods/drugs and chemicals I've done a lot of trial and error on things I use/eat and get around.  When I was poisoned by sevin dust in 05 I was so toxic that I could barely tolerate eating any of my favorite junk foods and prepared foods.  So I just quit eating everything except fruits, veggies, and boiled chicken.  I don't drink anything except water too.  As time passed I did find a few items I could tolerate that weren't pure, like white bread (whole wheat has too much gluten in it), a certain brand of flour tortilla's and noodles, and one brand of pumpkin pie.  Not very exciting but I'll tell you this.  My new diet took away a lot of the horrible muscle and bone pain I had, and that horrible flu feeling I had all the time.  I also started walking which has helped, and now that I'm on ZERO caffeine I finally, FINALLY, am able to get to sleep most nights which I had a lot of trouble with.  I also have less restless leg syndrome symptoms.  I also take a multi vit, calcium with D, extra magnesium, C, and a banana everyday cuz the pills don't set right with me.  

Be prepared to suffer, I'm sorry to say.  But hopefully a little of what I did that helped me will help you if you try it.  I think the crap they put in our food is slowly poisoning us, so I'd start there.  It's a pain not eating the good tasting stuff, but I'll do without pizza, and burgers to feel a little better.  I just wish I would have tried this a loooooooooooong time ago.  Perhaps I would have had a better life.

[Padro46]

Nuero 3 advised EBV aftereffects may never go-away

[Padro46]

all I know is my last Nuero (number 3) told me some people are left wioth lasting effects--I did not even go to a doctor b4 this--keep your head up Jen

[Jenelle44]

I visted my ENDO last week, and all he said was the Epstein Barr " takes time". There is no cure, but hopefully someday. I cannot wait to see what my levels are, been quite a while.

[fashiono]

I am glad you have seen a Endo because my GP said my levels were normal at 3.24. I didn't give up and went to an Endo which said the new standard levels are near 1.0. So he put me on meds to try to regulate. I am not there yet but working on it. I to have EBV and my doc will not retest me. Just says there isn't anything they can do.