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Epstein Barr Virus (EBV) Community
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Avatar universal

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>
61 Responses
Avatar universal
I would say a good infectious disease DR would be a good start I have been dealing with it for three years it is killing my family and I still have no real info
484098 tn?1259531132
Personally, I would think an endocrinologist.  My mom went through so many different problems and pains, and finally someone sent her to an endocrinologist who did some major blood tests on her that no other doctor seems to be trained to do, and found out that many drugs prescribed are useless if taken at the same time as other drugs or certain foods; also found out she is of mediterranian descent, which has it's own problems.  I can't remember what disease he said she had, but no other doctor was able to find that out, simply because they aren't trained to check so deep into someone's blood and genetic history.  I know I'm not explaining this correctly, but all I know is I wish we could all see an endocrinologist at least once in our lifetimes!   Many of my mother's problems were due to this one mediterranian disease and also to certain types of foods that wouldn't allow her medications to work.    Please ask if you can get a referral to a endocrinologist for some deep genetics checks and see where the endo doc sends you from there.  

Let us know what happens!
484098 tn?1259531132
Another thought!!!  The Raw food diet.  Try that!  It may work.  Also, I have learned over the years that if you eat ONLY RIPE bananas, and purified water for about a week, 90% of your health issues can be gone.  Try it!  What can it hurt?  And think how cheap of a fix that would be!
Avatar universal
Thanks,  Has your Infectious Dr.  helped or just told you the samethings you already have found out?  It has only been six months for me,  I dont know how I would handle three years.   Today my issues are the numbing around the head and face area.  I am seeing a Heart Dr, tuesday to check my carotic art.  he want to make sure I dont have apich or something.  My primary Dr.  has told me my head is a sinus issue and not related to the EBV.   (Bologna)   If all comes back well tuesday with carotic will ask that Dr. to refer me to a Infectious Dr.   Hopefully he/she can help   Thanks *
Avatar universal
just thought I would throw my 2 cents in...I see a Neurologist who specialized in Immune issues, such as Lupus, MS, etc. He is the one who finally diagnosed me correctly after 2 years of hell. I owe him my life.
Avatar universal
was it EBV and if so what kind of treatment did you get,  Have had the blood test for Lupus, No problem there.  
Avatar universal
stilol have no clue I think it is cfs but no real dx yet for me I do have EBV and chronic candida all my symptoms are the same *** HIV but I have tested negative for 2 years (took about 13 or 14 HIV tests so HIV is unlikely)
Avatar universal
Took your advise and ask my doctor to refer me to a Ifectious Diease Dr,  After submitting ALL the test I have had run (heart, Chest Xray, Blood work,)  He called my Dr. back and said there was nothing he could do for me,(SO no appointment)  If it was EBV as indicated back in March than no other choice but to ride it out,  BOY WHAT A DOWNER,  
Avatar universal
"If it was EBV as indicated back in March than no other choice but to ride it out," not true there are antivirals like (ACYCLOVIRE) that sometimes help with EBV also they can treat the symptoms and diet changes are supposed to help too then there are some homopathic remidies that allot of people swear by. FIND A DR WILLING TO GO OUT OF THERE WAY TO HELP YOU (they are rare but some people find them)
Avatar universal
Thanks for your help, Live in a small town and the doctors are for the most part in tune with one another, would have to travel far to probable get the same results.  Hope to get better soon,  Go back and see my primary MD in 30 days hope for better news than maybe my EBV Panel will come down from 600 to whatever normal is.
Avatar universal
Also what are the homopathic remidies you are aware of, All my MD;s say rest is the only cure.  Thats not hard see as thats all I do.
Avatar universal
I have heard some of the anti candida remidies are helpfull as is the anti candida diet (cave man diet meat and vegies onlt type)  and there are several EBV remidies (no personal experiance sorry) I take ACYCLOVIRE but it does not do much for me SORRY I am not a lot of help because no one really seems to know much about EBV for example I have had a very experianced ID DR tell me I have chronic EBV but then a university hospitol immunology dept tell me no it is a past infection only I tend to believe the ID DR because if it was a past infection only then why would my EBV titers be going up not down
Avatar universal
Find yourself a good naturopathic physician. If there is anything else going on, a ND will find it. Their medical training is quite different from regular MD's and they approach you from a holistic point of view. They disect the blood work reports and give you so much information from them. Your insurance may not cover a ND consultation, but the cost would be worth the information you get in return. Fill out the ND's medical history forms in advance of your visit and bring all your labwork reports to the visit.

Best wishes. I hope you feel better soon.
Avatar universal
Hi padro46, sorry this reply is so late, didn't know you posted to me..yes, it is EBV--reactivated..apparently it has been reactivating for 3 years. which is why I have it so bad. was told I had Fibro. Doc put me on anti virals to try, 2 different times. Didn't healp at all, actually made me feel sicker. he also gave me adderall for fatigue. I see pain management doc for pain meds, and just recently my neuro/immuno doc also put me on neurontin.
Avatar universal
I really dont know what to do, I posted not long ago I finally got a referral to a infectious disease doctor,  He looked at all my test results and would not even see me, advised there was nothing he could do for me just ride it out.(EBV)  Talk about a kick while you are down.  My main issue now appear to be chest pain, Stomach pain/nausea  will be seeing a gastro. dr next week for that  hope no colin/stomach issue there.  
Avatar universal

I hope the link I sent you was helpful. The sooner you get treated... the better.

Best,

PlateletGal
Avatar universal
I think I missed it would you send it again,  Thanks *
Avatar universal

Its on its way ! ; ^ )
Avatar universal
Tomm: Have a appt. with a Gastro Dr.  Hope he knows something about EBV,  Will this ever go away, Most issues now are with belly and dizziness.
Avatar universal
Would you mind sharing your EBV numbers?  I am wondering about mine and I would asume others are also.  
Here are my latest: "scale used is 0-99)
  Early Antigen Ab,IgG  300 (climbing from 142 1.5 yrs ago)
  Ab VCa IgG 3462 (up from 2761 1.5 yrs ago)(had gone down once)
   Nuclear Ab IgG         2326 (up from 1114 1.5 yrs ago)(had gone down twice)

Some labs use 0-.9 as a scale.

Anyone have elevated Neutrophilis count on their blood test when their EBV numbers are high?  Mine are up for the first time since this whole thing started.

Having reported all these terrible numbers, let me encourage others by saying that I can "create" a good day by pacing myself and focusing on remaining quiet and calm. I have also found that the more time I spend on the computer, on the phone,  or watching TV makes my fatigue worse.  Cool, calm and breathing deep.
551780 tn?1215037466
do you still have yur tonsils?i was diagnosed w/ebv when i was 13 ,when i was 14 i got them taken out and havent been quite as sick since then ,have you ever herd of dr.bob beck?
Avatar universal
Just wanted to clarify...An Immunologist and an Infectious Disease doc are not the same thing. I see an Immunologist, I believe that is the correct doctor to see for this illness.
Avatar universal

There is no right physician or specialist for this illness. Many of us with "chronic EBV" actually have Chronic Fatigue Immune Dysfunction Syndrome. My physician, who is interested in CFS, is an Endocrinologist. However... not all physicians are willing to diagnose and especially treat this illness.

For those of you still looking for a physician can help you..... check out "Co-Cure's Good Doctor List".
Avatar universal
Did you ever get anywhere on your EBV?  I have hit a brick wall,  If EBV is the issue I have.
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