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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.
17 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?1291425518
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.
1 Comments
I have had more luck with functional medicine doctors with my ebv. I still have to manage my stress but the list of healing foods, juices and supplements I’m taking have provided relief. A functional medicine doctor can help you make your body and unhappy place for the virus to live, let alone thrive, and you can live with more good days. Supplements that have helped me most are monolaurin, l-lysine, NAC, K2/Vit D,  lysosomal vitamin C, 16oz celery juice in morning on empty stomach ( can add lemon and apple juice if taste is bad for you).
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?
3 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.
Same here. I’ve been to endocrinologist, allergy, rheumatologist, and no one is being proactive. My PCP is over her head and she doesn’t know what to do next. I’m seeing and integrative medicine dr and have started taking supplements, but still running a low fever and all sorts of other problems. EBV is super high. Need a doc that can help. Someone suggested infectious disease dr, another endocrinologist, a different Rheumatologist. Need dr in Dallas Ft. Worth area.
Try a wellness or functional medicine doctor. I have a dietician who is also a functional medicine doctor. I just lay her per appointment so it’s not expensive like a wellness doctor would be. A functional medicine doctor knows move about EBV and can help you more than mainstream medical doctors who disinterested learn this stuff in med school. In a previous post I listed supplements that have worked for me. Good luck!!
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.  
4 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?
I am four days in to this juicing regimen that was recommended by my functional medical doctor. I have gotten relief from supplements but not total relief. This post gives me the hope I need!!!
Avatar universal
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.
1 Comments
Hi Nadavies56.  Thanks for sharing.  What is the benefit of leaving the skin on?  Also you take liquid turmeric and also add turmeric to your juice?  Just want to be sure.  Have to do something.  Feel awful.  Thank you.

Jen
Avatar universal
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





1 Comments
If anyone knows of a good doctor in the Panama City, FL area that treats (or tries to treat) CAEBV, please let me know.  Also, what kind of doctor is the best and is more likely to believe in this disease-although it is already a proven disease...
Avatar universal
I see an OD.  She prescribes monolaurin for those who don’t want to use prescription anti virals.
Avatar universal
I'm reading your questions above about Supplements and Juicing, and all are excellent advice.  I have been dealing with the Chronic Epstein Barr Virus for over 30 years, so the comment about curing it is questionable to me.  You can put it to rest by getting your immune system in optimum condition, but the virus is always there lurking in the back ground, waiting for the opportunity to come back out.  I feel for all of you, as I too thought I had beat it completely until a couple of years ago.  Clean eating and supplements are the best tools you will have, and as my Dr. of Integrative Medicine told me, "Kathy you realize this is a marathon, not a sprint don't you?"  Meaning it takes time when you are in a full blown active flare up to get it under control again.  

I thought you and the others might be interested in my story. When I was in my early 30's I became ill with a sinus infection, that just wouldn't go away.  A trip to the Medac center revealed I had Mono.  I was told to go home and do nothing but rest.  I'm certainly glad I did not follow that advice as I would be dead today.  Within two days I was in the hospital diagnosed with Guillian Barre' Syndrome, unable to walk and rapidly declining in my ability to breath.  To make a long story - short, I was in Duke Hospital for 8 weeks paralyzed, before my condition started to level off and improve.  They then moved me to my local hospital in my hometown for rehab where I resided for another 6 weeks.  Recovering from that illness took me a couple of years, as my nervous system was really wrecked.  That was over 30 years ago.  

Since then I have had periods of time, a year here and a year there, with debilitating fatigue and pain and finally was diagnosed about 5 years after the GBS with a reactivation of the  EB Virus.  I only got that diagnosis from my GP after I told  him I refused to take Anti-depressants until he ran all the test he could on me to find out what was wrong.  His comment was, "There is only one test we have not done, but you are not in the age group for that illness."  It turned out he was referencing Mono / EBV.  He came back with an apology and a diagnosis of Reactivation of EBV.  I'm certain I had the virus all along and just did not know it.   I also had developed Hypothyroidism during the years just prior to this diagnosis, which I'm sure was skewing what they were looking for.

I would encourage everyone who is suffering with this virus, to be persistent with your Doctor, and change Drs. immediately if they dismiss your condition!!  I was then referred to an infectious disease specialist, who plainly told me he could not help me.  I finally ended up in a bookstore and found a book by Dr. Jesse Stoff titled Chronic Fatigue Syndrome / AKA Epstein Barre Virus.  (I think you can still get this book on Amazon) He is a holistic Dr. that studied in England and had a protocol to treat it with supplements and food, and I devoured that book.  I did exactly what he said, with my eating habits, food choices natural supplements and all.  Within 4 months I was back on my feet again and stayed that way for many years.  I did have residual nerve damage from the Guillian Barre' and had to take great care in my routine of rest when needed along with the supplements and diet.  

However, I also let my guard down, after several years of feeling good, and was under great stress in 2010 - 2015.  Our family went through huge loses during that period of time and I let up on watching my diet, taking all of my supplements, and was working 40 hrs a week, as well as trying to manage the care of my Mother-In-Law, who had developed dementia.  I started noticing severe joint pain and recurring illnesses, bronchitis etc.  Finally in 2016 I mentioned to my GP that this reminded me of a time in my past when I had a reactivation of the EB Virus, and could not get well.  They did an EBV panel and sure enough it was back in full force.  Unfortunately, my GP did not know how to treat it, so I immediately changed Drs.  I am now under a practice that has an Integrative and Wellness approach and believes they can bring my numbers back down again.  (Look for a Dr. of Integrative Medicine, they seem to have a more open mind to helping you.)  I am being tested regularly, and I'm fighting to get my health back once again.  

Yes, Guillian Barre' is definitely caused by EBV, and so are several Cancers.  At 66 yrs old now, I am working hard to keep them all from knocking on my door.  I've learned from my long history with this virus, you MUST keep your diet, rest, healthy eating, and supplementation at the forefront of your mind.  Let your guard down and you will pay dearly.  It's easy to think when you are feeling well, "Oh I've beat this thing, I can relax"  But don't be fooled, always be alert, and don't feel guilty for pampering yourself either.  YOU need it to survive.  You can treat it, but being good to yourself is part of that treatment.  Search for that Doctor that is an ally who understands the disease, and I wish you all the best in your battle.

Thanks for letting me share,
K. Sanders
1 Comments
Thank you very much for this informative answer.  We appreciate your sharing with our community and hope you continue to do so.  
Avatar universal
This is outside the box; but after multiple doctors and nothing getting me better, I consulted a medical medium. After lab results confirming I had a reactivated case of EBV I followed the diet & a few of the supplements (have trouble with supplements.) , recommended by the medical medium. It completely cured the fatigue!
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