Epstein Barr Virus (EBV) Community
Best Type of Specialist
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This patient support community is for discussions relating to Epstein Barr Virus (EBV), chronic EBV, and infectious mononucleosis (mono).

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Best Type of Specialist

Have had chronic EBV for two years. Numbers are consistenlty in 9,000 range!

Have heard Infectious Disease Doctors just confirm you have it and offer to put you on experiemental meds.

But, if anyone has positive experiences with ID's, I would sure appreciate hearing about it.

Anyone have experience with Immunologist? CFDS and Faitigue centers/specialists? (I do have CFS now).

Anyother?   I would so appreicate feedback on this. My Internal Medicine doctor wants me to see a ID, but yahoo forum on EBV shows most people got no help other than "yep, you have EBV...wanna try an antiviral? " Then they had worse sympstons than before.

Thanks so much.
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Avatar_m_tn
Don't know if this is any good news,  I have only been dealing with this for going on 7 months now,  Like everyone else have had many test spent many $$$ and still have no answers.  I was refered to a infectious disease dr and after reviewing my test he would not even see me,  advised to ride it out.  All I can say is you feel there is something wrong,  went to a gastro yesterday have set me up for a upper gi/ct scan and colonscopy after this I dont know what else to do,  having neasue and ab pains
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Avatar_f_tn

Please check your inbox. I'm sending you a link that can help you find a  physician in your area who knows about CFS and often treats CFS patients. As for myself, my Endocrinologist is treating me and prescribed medications to get to the root of the illness (that are not research) and I am making progress with this treatment. I'll send you some information on that as well.

Best,

PlateletGal


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1486652_tn?1291429118
Hey platelet girl My EBV is out of control. I would be more than grateful if you could suggest a good doctor one who would specialize in EBV in the new jersey, PA, or even New York area. I've been to my local Infectious disease specialist, and all she did was do another EBV test. I took the inctiative by checking off additional tests I thought might be important, They or should I say, "I" found many abnormalities.  She didn’t even go over my blood work. just said: “everything looks ok”. I had to request a copy of it on the way out and find out otherwise.  Anyway, I feel like just a number to these doctors.  I need a Dr that can straighten this out, the pain is horrible. I appreciate any help you could give. - Nick.
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Avatar_n_tn
No positive experience with my ID Dr.  Since I wasn't contagious, he sent me back to work.  It's been a yr later and my EBV levels are still high.  I too am looking for an EBV specialist.  One of you mentioned an Immunologist and the other an Endocrinologist.   Any ideas on finding a specialaist?
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Avatar_m_tn
I would love to hear about your EBV, have had EBV for 18 months, the first 71/2 months I could not chew or open my eyes.  I was in bed, finally out of bed but have to push to keep going for 2 hours.  Have been to IFDC, Enc, and Medical drs.  All say rest and it will get better.  My body feels like I have been run over by a semi and they have give me aderal (Adderall)(sp) for energy.
Being 63 and beating stage 4 colon cancer, then severe neuropathy from chemo drugs, I am mentally and physically exhausted.
Thanks
LB
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Avatar_m_tn
Hi there,

I saw your post indicating that you had a link or info on finding a good doctor for EBV treatment...would you be so kind as to share that information with me?  I've been struggling with it for a few years now and am desperate to find someone to work with.

Please respond with any info/insight you are willing to share.

Thank you and good health!!

JG
Seattle WA
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