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Epstein Barr Virus (EBV) Community
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Avatar universal

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.
15 Responses
Avatar universal
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
Avatar universal

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


1 Comments
Hi I am 56 and have had EBV for a year and a half now. I eat healthy and drink lots of water and I don't eat hardly any sugar or gluten. I've been to natural doctors and medical doctors and acupuncture. I might be a tad better but if I over do in the least I crash again. I live in New Mexico and was wondering if any where I could get to someone who specializes in EBV in New Mexico or anywhere. I'll go wherever to get rid of this. Thank you. Any info wil help
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.
Avatar universal
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?
Avatar universal
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(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
Avatar universal
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
Avatar universal
I have Epstein Bar and CMV and feel absolutely horrible.  Do you know of a doc in the Dallas/FT Worth area that may help?
1 Comments
Did you ever get info on someone to help with you EBV? I have it as well and I'm located in Dallas. I'm looking too.
Avatar universal
Hi,
I was wondering if you could provide me information about doctors who specialize in helping patients with EBV I am trying to find one who can help me.  I greatly appreciate any information you can give me.
Thank you.
Avatar universal
Hi, my mother-n-law has been diagnosed with EBV and we are looking for a doctor in NY that could possibly help. If anyone has information it would greatly be appreciated.
Thanks
Avatar universal
Hi,  would you please send me the link to find a doc in my area SE PA who specializes in EBV and chronic fatigue.  I would appreciate it, Hope you are feeling better.  Thanks,Kerin123
Avatar universal
I  also have been having chronic EBV flares for years.  The fatigue and body aches are so difficult to deal with..  It gets hard to function some days are impossible to even get out of bed.  I live in the PA are and was sent to an ID Dr and they reviewed my case and said that I didn't need to be seen at this time.  They screen their pts before making appts.  I work in the medical field and feel like I haven't gotten anywhere with my questions.  I have seen a RA Dr but he didn't seem to be to concerned.  I always feel feverish but have no fever per say.  I just hate the way I feel and want to find answers.  Thanks for any help you can give me.
Avatar universal
Hi
Hope you're doing better.  I suffered for 6 years with mono which include spleen pain, head aches, sore throat, CFS, even my kidneys and heart problems and more.  On Jan 1, 2016 I decided to do something new and it worked!  It took a couple of weeks for my kidney function  moved from 50% to 85% and my mono symptoms were gone.
I completely change my diet...I was eating and juicing raw fruits and vegetables.  THE KEY INGREDIENTS FOR THESE JUICES ARE ORGANIC LEMONS, TURMERIC and GINGER!  CHECK WITH YOUR DOCTOR FIRST TO SEE IF YOU ARE ALLERGIC TO THESE FRUIT AND ROOTS.
I got one of those bullet juicers and used a combination of ORGANIC:
    1) KALE, SPINACH, BANANA, GRAPES, KIWI AND OBVIOUSLY LEMON, TURMERIC AND GINGER.
     2) WATER MELLON, GRAPES, KIWI, LEMON, TURMERIC and GINGER.
I buy this organic foods at Whole foods and blend them and drink them three time a day...after a week my sore throat for SIX years was gone and also my SPLEEN PAIN.  ALL THE OTHER SYMPTOMS WERE GONE AS WELL.
LEMON is the Number One Alkaline food and TURMERIC and GINGER have many healing properties..,research them.  YOU HAVE TO CUT OUT THE PROCESSED GARBAGE (SO CALLED FOOD) AT THE SUPERMARKET...AND IF YOU WANT TO CONSUME ANIMAL PRODUCTS I WOULD ONLY DO WILD FISH...THE CHICKEN AND BEEF ARE NOT GOING AID YOUR BODY RECOVERY...IT WAS HINDER IT.
I HAVE BEEN THROUGH HELL WITH THIS VIRUS MONO (EPSTEIN BARR)...THERE WAS A TIME I FELT I COULD NOT GO ON.  I HAD TO SEARCH FOR ANSWERS MY SELF BECAUSE THE DOCTORS DID NOT HAVE ANY.  THEN AFTER RESEARCH I LEARN THE BODY TRIES TO HEAL ITSELF FROM VIRUSES, BACTERIA and OTHER ILLNESS...YOU HAVE TO FIND NATURAL FOODS (FRUITS, VEGETABLES, ROOTS) THAT WILL AID THE BODY IN THIS TASK.
LET ME KNOW WHEN YOU START AND PROGRESS.  YOU HAVE NOTHING TO LOSE AND A WHOLE LOT TO GAIN.  
3 Comments
Hi, besides juicing, do you take any supplements?
This is the first positive thing I've read so far!  Thanks for sharing.  I just found out my antibodies for ebv are high at the moment and I knew I haven't felt right since last spring though I though it was my hashimotos/hypothyroidism.  I had asked my new endo about it because the Medical Medium is always saying how he feels autoimmune conditions are caused by ebv.  And to echo Marfilla's question, do you take any supplements?  I take methyl b12, vit c, vit d3, mk7.  Thanks again.
have you tried the medical medium recommendations to cure EBV?
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