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Best Type of Specialist
pvn
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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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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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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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
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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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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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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
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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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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?
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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.
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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
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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
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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.
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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.  
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Hi, besides juicing, do you take any supplements?
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On the same self treatment regimen you describe getting very good results in just one week with liquid turmeric B12 and VitC, going all out now with bullet and juicing lemons ginger turmeric and orange all with skin left on. Adding liquid concentrate of green tea.
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Hi all I have the same question, and its how I found this thread. I have chronic Epstein Barr flare-ups.....including now. It seems to be a highly controversial bug, with one school of traditional doctors, dont wanna deal with it or hear about it. At least 2 I know, say "excercise and quit smoking"..well 1- im not really overweight, 205lbs at 6'1"....and 2- how much excercise can i do right now with the swollen glands in my neck?

I'd welcome suggestions in the Long Island NYC area, I'd prefer not to have the sort of charlatan type doctor who's primary goal is selling me vitamins...

I have one old timer who's good, and treats the symptoms such as swollen glands/antibiotics and eventually this EBV stuff calms down for a while. But he's very hard to get appoitnments with..

Im curious about someone above wrote endocronologist, would that be a good person to talk about EBV?

All i know is there's a cynical attitude by many doctors who dont wanna hear about it, its almost like asking them if they like trump or hillary. I mean its an official illness EBV, is listed in the CDC I dont see what the big "secret" is...I can't find any documentation that WEIGHT or SMOKING causes EBV.  
Appreciate any suggestions of non-charlatan non-vitamin selling doctors, who at least won't dismiss my blood results and send me home with swollen glands. I have great insurance, just dont know where to find someone.

Tnx





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