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>

[Padro46]

Yes--I have had them checked several times--all within range--even have seen a Endo that made the commernt why am I there

[fashiono]

Have you had your thyroid tsh levels checked? If so ,do you know your level numbers?

[PlateletGal]

"The three Nueros say I have left over Nerve damage most probable caused by EBV"


That sounds like a good question for Dr. N.  Is it possible for EBV to cause nerve damage ?

[Padro46]

Thanks so much for the responses--brett I have not really focused on EBV my many docs have because with all the testing I have had the ONLY thing to show up is high OLD EBV numbers--My primary will not even test for it anymore due to the old numbers do not come down and the blood does not show I have it now.  The three Nueros say I have left over Nerve damage most probable caused by EBV--I have had no other answers thus the EBV Dx--Janell I have Monthly B-12 shots and take a Vit D supplement-All is better but not The SAME as B4

[brettp7]

Padro,

          You described your symptoms as:

          "Back of the head pain sometimes, Lightheaded just about every day, Light pains that move around sometimes stomach sometimes chest."

          Unforutnately, EBV and even more so CFS are sometimes self diagonosed or even diagnosed by doctors as a, "If all else fails" syndrome. This is probably because over 95% of us will have had EBV at one point in our lives (Center of Disease Control). I mention that because this is a very common virus so it is easy for doctors to say this is the problem when in actuality it may not be it at all.

           I bring this up because your symptoms don't completely match up with many EBV carriers. Does this mean you dont have EBV, not neccessarily, considering you had high EBV levels in your blood work. With that being said high EBV levels doesn't always mean you have EBV.

           Try using a reliable source like The Center of Disease Control. This has some info on EBV: http://www.cdc.gov/ncidod/diseases/ebv.htm

           I realize what I'm saying doesnt hold many answers, and certainly isn't letting you know what you have. However, especially medically sometimes it is better to have the right questions than pre-determined answers.  

           You might want to go about this in a more objective way. It seems that you believed you have had EBV for over a year now and unfortunetly it hasn't gotten you anywhere. Maybe focus on your symptoms and how they may/ may not match up with different diseases and syndroms. You have done a TON of research and talked to many professionals which is impressive. Now, you might want to direct that in a different and less focused way.

            If you need anymore help, don't hesitate to ask.

          

[Jenelle44]

Hey Padro, I have had it for almost two years now. Yes, I am still working. It is tough, but I fight it out. The hardest part is the mornings. I used to be able to get out of bed and get moving. Now I take my time and alot of times make it to work late, I have an understanding boss. I suffer from Fatigue, muscle aches, restlessness( especially at night) , Headaches, Malise ( feeling ill at times), night sweats ( once and a while) tingling feelings legs and arms, Sensitivity to light, etc. These are just a few to mention lol. Anyway, I have visited a few doctors and they seem to shrug it off or give me a blood test and urine to see if anything is there. But, since my research I have found that there is really no specific Dr. to treat this disease. So, at this point I make the best on my own. The vitamins I take are B-12 with vitiman C, also Vitamin D is important. I remember I have taken AMINO acids (Lysine) at one point and they were extremely effective. I have to get those again. Try those for a while, I used to take like 3-4 a day. They can get expensive but they are worth it. What are you experiencing?