Aa
One Doctor
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>
Lefty10, what you have described is all a part of EBV ... stupid doctors. As I mentioned in my post ... try changing his diet to all natural, no kidding. It has helped me.
My son was daignosed with EBV last year. Prior to that he went to an infectious disease doctor who ran all types of tests to no avail. At one time they thought he had Lymphoma , all his lymph nodes were swollen and his spleen was enlarged. After surgery taking out a lymph node they determined is was badly infected but thankfully it was not lymphoma. He suffers from severe headaches and fatigue, does soemone have and answer we need help.
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?
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.
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.
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
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.
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.
Yes--I have had them checked several times--all within range--even have seen a Endo that made the commernt why am I there
Have you had your thyroid tsh levels checked? If so ,do you know your level numbers?
"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 ?
That sounds like a good question for Dr. N. Is it possible for EBV to cause nerve damage ?
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
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.
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.
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?
How long have you had CFS and are you still working--if not do you get disablity for it--and other than vitimins any other treatments??
Also, just some hints- the only true way to fight this battle along with the symptoms is to overload on vitamins as much as you can. I started a vegetable and fruit juice diet which I believe helps. I bought a juicer and cut up vegetables and fruits and drink it. It seems to help out. Try carrots and apples. There are many things you can do. Buy Amino acids (Lysine), they help greatly.
The virus stays with you. It does not go away. You are most likely suffering from Chronic fatigue syndrome. This is if you have experienced symptoms past 6 months.I am almost going to gurantee that this is the cause. I have had all the symptoms that you have mentioned and I have that.
Only thing EBV Levels show for me Is I have had it at some point---That does not help me now--fight all the things that it has left me with.
You people are getting a hundred different tests for the same issue...ITS EPSTEIN BAR. Your insurance claims must be through the roof. TEST your EBV levels I bet you thats the catalyst.
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