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>

[chrisneedshelp]

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

[zmombomb]

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!

[zmombomb]

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!

[Padro46]

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 *

[kgirl04]

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.

[Padro46]

was it EBV and if so what kind of treatment did you get,  Have had the blood test for Lupus, No problem there.  

[chrisneedshelp]

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)

[Padro46]

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,  

[chrisneedshelp]

"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)

[Padro46]

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.

[Padro46]

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.

[chrisneedshelp]

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