Epstein Barr Virus (EBV) Community
Is EBV going to kill me ??
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Is EBV going to kill me ??

14 months of being extremely ill, Dr finally tested me for everything including HIV, it came back positive only for EBV, l have low white cell count, high B12, slightly high pottasium level. I'm not getting better I'm still as sick and the fatuige is horrible ! I'm only exsisting, this is not living! I was so active before this took me out. Please help me understand, is there anything I can do to help myself. Please Help. Am I going to physically Die from this ? Because I am so sick, I feel like it. My life as I knew it has already died.  Its hard to believe there's nothing I can do, as my Drs tell me, except live with it. No I can't just live with this ! It's a nightmare ! If there is help out there please tell me. Someone please talk to me about this. I'm am so isolated, and afraid, I have  no family, no friends since I became ill. I've lost everything, living on SSI now, get meals on wheels, that's it, and aid at sheltering arms picks up my medications for my other Heath issues I've had for years, that I've never had any long term problems with at all. I now ride the medicade bus to get to appointments, thats rough ! It just wares me out. Bassicly I just sit here in this house, alone and sick, not knowing what to do or think  ? Please Help.
40 Comments Post a Comment
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Hi and I am so sorry you are so ill. Getting diagnosed is the big factor here. It may not be due to EBV though EBV can cause some problems too. Have you had your complete blood count done?High B12 is unusual but there are a few things that can cause this. One is polycythemia vera which is when you body makes too much blood cells. They then have to remove blood on a regular basis. Also, cirrhosis of the liver due to Hepatitis, alcholism (alcoholism), and any liver problem could make your B12 high. Leukemia can also do this certain types but then your White blood cells usually are high not low. Have you been checked for Hepatitis B and C? Have you had any exposure to Heptatiis that you know of?
take care,
mkh9
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Hey, mkh9. I'm sorry to intrude but I just need to ask:

Is being infected with both ebv and cmv very serious? I was diagnosed with both and so far have not gone through anything severe (thank goodness). Although I do experience minor fatigue and my body twitches from time to time. Should I follow up on test for other diseases that could be related to the viruses (ex. fibro etc)? Please shed some light about this viruses and methods to keep them at bay.

To LivingDead101:

I'm so sorry to hear you are going through so much right now. Don't loose hope and follow what mkh9 said and see a doctor about other related issues.
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No almost all adults (around 80%) have EBV and CMV. Usually, you get symptoms when you first acquire EBV (like mono) and CMV you usually get as a child. You don't usually get symtoms (symptoms) after the acute stage of EBV so after two months or so most people don't have problems with EBV and usually not at all with CMV. There are a few that can get compications but you would have serious symptoms but this is rare. Since you don't have symptoms then I wouldn't worry about it at this point.
mkh9
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My eyes get randomly red and I twitch from time to time. Should that be a cause of concern?
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It sounds like dry eye. Try getting some artificial tears (not visene tears) at the drug store. I get twitching too but it is usually tired eyes or stress.
mkh9
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I'll look up on the red eye. What I meant was muscle twitches. I hope it isn't anything serious. Thanks mkh9!
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I think the eye twitching is stress or tiredness, nothing serious. Do you have it all the time and for how long?
mkh9
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They have tested me for everything except MS so far, I don't drink, and all blood work keeps coming back ok except high B12 and high Potassium levels, and the EBV,, going to Nuerologist next to be tested for MS n whatever else I can think of to tell him ! I don't think my PCP, or Immunologist is going to do anymore blood work ups on me. I don't know what to think except I feel really bad and have for so long, I can't do anything that doesn't take extreme effort and 5 hour energy drinks or I can't even get outta bed somedays or if I do about all I can get done is sweep the floor, and maybe a few other things without the 5 hour energy. I dont drink one everyday, maybe once a week just to clean house. I have trouble concentrating allot, I get dizzy off n on, my eyes and face always feel swollen, I have allot of allergies, so I have to becareful of everything I eat or come in contact with, I feel like I'm short of breath or it's hard to get a deep breath like ?? Kinda like congestion but not. I'm on an antibiotic for a staff infection right now, been STD tested, including Hep a b and c liver function is fine, it's just crazy that this won't let up and I can't seem to find out anything except I have EBV. I don't know what to do ? All I know is I really feel bad all the time, and have weird sleeping spells, it's not a restful sleep, I just can not stay awake at times, it's more like passing out only I go lay down first. You would think if they saw anything else abnormal in my blood work they would be more concerned, or maybe not, I'm on Medicade I just know I have had all kinds of blood work done and nothing had ever been out of whack until this EBV, pottasium levels high, and B12 to high ??? Please list everything you think I should ask this Neurologist about or to test me for. Thank You So Much !! To mkh9 and tonoend !!! Thank You !! Truly PR
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Also I sweat allot, it's not hot flashes, I just sweat like crazy, then might get chilled now and then, they put me on nasonex for allergies, I can't take allergy shots. I'm on 50 mg of Atenonol once a day for high BP, and  meds for Hypotyroidism, Cholesterol, On Lasix because I tend to hold water, asthma spray, Xanax for nerves, singular, atarax at night 50 mg it's a antihitimine, with a slight muscal relaxer in it, I have muscal aches in my back from buldging discs, and the antihitimine helps with the alergies (allergies) to dustmites, and anything else floating around in the air. I had Glandular Fever when I was 2 years old, it's caused by EBV, that's what my Dr said. It trashed my immune system and almost killed me, I took allergy shots, until I was 12 and had to stop, and gamagobulin shots for my immune system until I was 13, was pretty much ok until July of 2011.. ? Was working out 5 days a week at the gym, was in great shape ! Felt great, looked great, had every to burn, and some left over, rode my motorcycle everyday, went out, was doing ok, just had an occasional down time thing that I thought was just me over doing it, I would just be very tired for a few days then back up n going again ??? This is to weird for words.. I just don't even know who I am now, and sure don't recognize the face I see in the mirror now
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I do relate to some of your symptoms because I have chronic back pain and I run out of energy all the time. I also am hypersenstive to a lot of things. I am getting patch tested to see which things because I recently had a major allergy to topical steroid and my legs swelled up like elephant legs and then peeled, itched like crazy. I am allergic to dust too but it is the mold and not the mites in my case.   Would you give me specifics on exactly what your WBC count was and the break down of the cells etc. and the EBV, did they do IgM and IgG or test you for Early antigen or something like that? If so give me all you have. How long ago were you ill from EBV or did they think you may have acquired mono? Did they do a mono spot test and was it negative or positive? Certainly the muscle relaxants can cause major fatigue. I sleep walked during the first three weeks of flexeril. I was on the lowest dose too. B12 should be eiminated in the urine. It doesn't usually build up that is why I mentioned specific things it could be. Why are you seeing a neurologist? Hypothyroidism also makes you very tired. My husband is layed out on the couch when his thyroid is off. I have a high TSH recently and I've been more tired. I 'm getting retested as it has never been low before. Be sure to mention the high B12 to the doc. Also, have you ever had and EKG? Also, have you had your iron, and ferritin tested. I was wondering if you  have an arrthymia that would make you tired and feel funny (I know because i have a benign one and if I drink coffee or tea or have certain supplements I feel short of breath. They found mine by accident. Flexeril may have been the cause or it made it worse. I had  a normal EKG and it showed up on a 24 hour monitor. Also, your symptoms sound like anemia.
mkh9
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They look blood shot if I sleep late. Otherwise, it looks normal but still mildly red. Random parts of my body twitches, not my eye. It started before the fever (i think was mono) struck me earlier this year. Is it possible that these viruses affects the nerve system significantly? There are times this twitches are  tremor-like. But they come and go.
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I did see that there is an association of neuropathy with EBV. Also, do you have muscle fatigue or paralysis? They can check you for Guilian Barr disease which is caused by EBV in a few people.
mkh9
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As I mentioned above, there is an association of neuropathy with EBV and also with Gulillian Barr disease.  Do you muscles feel weak or any paralysis? If not I wouldn't worry about it. I wonder if you potassium is low though. Low potassium can cause muscle twitching. Driink some gatoraid and eat some bananas and lots of water and see if that helps. From your symptoms I don't think you have Guillian Barr. 95% of people with EBV don't get complications. Rarely, you can get chronic fatigue and lymphoma. Your symptoms don't show those things so far except some chronic fatiuge maybe. Actually, EBV is in the Herpes family as is CMV. A recent study showed that chronic fatigue syndrom (syndrome) may be cause by a Herpes virus type 6 (I believe) and not EBV. But it doesn't matter as they would treat you the same clinically.
mkh9
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Yes, all my muscals are fatuiged, no paralysis though. Just really very sick all the time, and so weak, my potassium is slightly high not low, and B12 levels are high, my white blood cell count was on the low side. I've never experienced anything this devastating. I'm afraid I'll die before they can figure out what all is going on with me. I just don't know ? Thank You mkh9
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Yes that is right I forgot your potassium was high not low. But the other stuff I mentioned in the last post are possible. Hope you can figure this out.
mkh9
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Have you been tested for lyme? Or possible mold exposure?
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I'm so very sorry you have to go through all this.  I have Chronic Active Epstein-Bar, and it is severely interrupting my life.  It may be rare, but some ofus seem to be unlucky that way.  I also feel like I simply exist - in pain; people, family, friends don't understand because most people get Epstein-Barr and get over it and have no further trouble.

It's hard to even find a good doctor who will work with you.  I know all too well.  I've been hospitalized twice with Epstein-Barr, and that was years after my initial bout with mono as a teen.

Unfortunately for us, it's something that hasn't gotten much attention or research up to this point, mainly because of what has been traditionally accepted about Epstein-Barr.  It is just now, like *very* recently been getting more attention from the CDC, who is going to do more research.

Also, scientists in Japan are probably the leaders in exploring Chronic active Epstein-Barr and have even had success helping people with bone marrow transplants.  That kind of treatment is out of my price range.  For now I try to find others like me and surround myself with as many understanding people as I can.

There's nothing easy about it.  And actually it's more like 95% of adults 40+ carry EBV.  Unfortunately it's the healthy people who pass it on usually.  Many times children get it from their parents or caregivers and become carriers from then on.

You're not alone.  It may not be much comfort, but there are people who have it and know what it's like to be constantly fatigued and in pain, and most of us have also been treated like it's nothing serious or that it's in our heads.  Just don't give up.  Keep speaking out.  Maybe some day future people won't have to go through what we are.
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Chronic Active Epstein Barr Virus is a horrid thing to live with....You are not alone..Today is a bad day for me and I just happened to stumble across your note, LivingDead.....The virus will sit itself on your cranial nerves and if it sits long enough (like it has for both of us) it will start causing all kinds of havoc...Please do a google search for Dysautonomia as this is one of the results of EBV..I am thinking of doing Gamma Globulin to boost my immune system...

Anyway Just wanted to share with you....lets get to feeling better, somehow..I know I am desperate...

tina
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Wow!  I ran across this thread and I can't believe how much I have in common with all of you.

I was diagnosed with EBV in 2009.  My titers were 2,850!!  They have never returned to normal (0-99) but I don't know what the levels are currently because I am being treated for all kinds of other issues from UCTD, IBD, Fibro, DDD, the list goes on and on and I am miserable.

Recently I went to Johns Hopkins in MD (I live in IL) and was seen by a scleroderma specialist.  I was diagnosed with sclero in 2010 and I wanted an expert to confirm.  The scleroderma doctor diagnosed me with UCTD but was more concerned with my flushing syndrome and has referred me to a specialist in the autonomic nervous system.  

LivingDead you mentioned Dysautonomia and that is EXACTLY what they are going to be looking for.  I would love for you to share more info on this.

At Johns Hopkins they found cryofibrinogen in my blood plasma.  This is a rare finding and is linked to cold intolerance which I have (cold urticaria, Raynaud's phenomenon).  I also have heat intolerance with severe flushing, vertigo and sweating, especially with exercise.  It has gotten so bad I have nearly passed out.

PLEASE, if you have any information regarding the Dysautonomia and how it is TREATED, please share with me.  I have researched this and there really isn't anything that talks about how to treat the symptoms.

Thanks,

Kris
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Since Memorial Day- I was literally flattened (after camping) Flu like symptoms with the whole works- except diarrhea or fever- otherwise- since that time has been pure hell....
the chills and especially- the fatigue has been devastating- its so incrediby depressing- it has to be some kind of virus that is just wreaking havoc with me
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Sounds like you may have picked up a food or water borne illness. Did you get bitten by any mosquitos? Can you keep fluids down? I hope you have seen a doctor since?
mkh9
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hey now that is 2013, are you feeling any better?
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Avatar_m_tn
I have and am being treated for Lyme Disease.  Lyme destroys the immune system so viruses that you have caught since a child, like EBV, are no longer kept dormant.  Lyme is treatable with antibiotics.  Also most have never seen the tick that bit them as they can be as small as the period at the end of this sentence.  Testing for Lyme is a problem as 60% come back false negative. So if you have a negative Lyme test, that doesn't mean you don't have it because Lyme hides in tissue and bone, hardly ever free-floating in the blood,  The best way to get help is by a Lyme Literate MD as mainstream Drs. are not schooled in tick borne diseases.  Contact ILADS for a referral.  The CDC recently admitted Lyme is an epidemic at 300,000 new cases every year.  Also Lyme is found in all 50 states.  Good luck to you, and I hope you get help.  It's not true tht you have to live this way.
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I have and am being treated for Lyme Disease.  Lyme destroys the immune system so viruses that you have caught since a child, like EBV, are no longer kept dormant.  Lyme is treatable with antibiotics.  Also most have never seen the tick that bit them as they can be as small as the period at the end of this sentence.  Testing for Lyme is a problem as 60% come back false negative. So if you have a negative Lyme test, that doesn't mean you don't have it because Lyme hides in tissue and bone, hardly ever free-floating in the blood,  The best way to get help is by a Lyme Literate MD as mainstream Drs. are not schooled in tick borne diseases.  Contact ILADS for a referral.  The CDC recently admitted Lyme is an epidemic at 300,000 new cases every year.  Also Lyme is found in all 50 states.  Good luck to you, and I hope you get help.  It's not true tht you have to live this way.
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In addition, to all get the PCR test by IgeneX that your LLMD will test you for. It is much more sensitive than the other tests for Lyme.
Good luck to all here.
mkh9
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Hello All,

  I want to address an issue that has been bugging me for a while,  We have been given the info that ebv is very common.  I just was diagnosed at age 49

  If the stats are true that 50% of mono cases are ebv caused and I have only heard of maybe 5 cases of mono in my lifetime how prevalent could ebv be?

  I tend to believe that CFS is really MS/lite  and is a continual progression of ebv .
  My next question is why is the medical and science community turning a blind eye on this disease?

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All cases of mono are caused by Epstein Barr virus. But Chronic fatigue can be caused by EBV and also Herpes viruses . I have to check which type it is I think 6. Epstein Barr viruses are in the Herpes family of viruses. I think there still is not 100% known about these viruses but also fibromyalgia can cause chronic fatigue and other things. I don't know if they are turning a blind eye or not but it seems they do that to me with my chronic back pain as well. It seems as  though any chronic problem is swept under the rug. Most cases of mono are when people are children and they are very mild like a cold. So you don't have classic sympotms like you get when you are a teenager or older adult.
hope this helps answer some of your questions.
mkh9
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Thanks mkh9  but i wrote this comment to raise awareness that the medical community itself may not be giving out all of the info on this virus.  To come out and say that up
to 90% of the population has it sounds very exaggerated.  If this is the case where are the drug makers for some type of relief meds?   Far fewer of the populace has HIV and there is a buffet of meds out there for that disease.  EBV can (from what I have read) cause death by way of cancer, lymhoma, MS, blood diseases, etc.
Cant they come up with something similar to Valtrex for EBV?
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One more question.  

  Can you really get ebv from sharing a drinking glass?

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From what I have read no. It is from intimate contact with saliva. And, direct saliva exchange. The virus probably dies off quickly on the glass or object. Still I find even though they say to not have any special precautions with other adults in the house for example if someone has a new case of mono. I still wonder about if there was a child in the house . But I know a lot of children already have it too. I would feel odd if it were my child even though I know better.
mkh9
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Yes I know what you mean. I am trying to clarify some of the things to make sure what goes out there are correct to the best of my ability too.  Regarding your statement about HIV and having a drug treatment vs. EBV. This is sort of a philosophical question. One is how much money can they make from an HIV drug vs. an EBV drug. Then there is that EBV may just be more elusive and difficult to treat or find a cure for like the common cold there is no cure. It mutates quickly. EBV hides out in cells. They have tried Acyclovir since it is in the Herpes family but it doesn't work.  I don't know how much research has been done on this despite the high numbers of people that have been infected and the chance that you can get cancer from it although it is rare. Right now the pharma companies are not spending much money even on antibiotics despite the many bacteria that are multidrug resistant either because the cost is so high due to the FDA forcing them to have such long clinical trials (which are needed). So, that is part of my answer for now.
mkh9
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speaking of antibiotics.  Has anyone else noticed that augmentin makes the EBV sufferer feel much better?

  And with EBV do you notice skin striations like almost webbed or burned?

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No I haven't heard of that maybe if you have a secondary infection with EBV you would feel better as antibiotics don't work on viruses. There probably is some explanation like it is killing off something like Mycoplasma and thus you feel better. But I don't know this for sure. It is an educated guess. As for the striations I also don't know that. Maybe someone will answer that here.
mkh9
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I read this thread because I have a friend with EBV. It's been 2 years since her last episode and she is having symptoms again. Problem is we want to allow her and her 2 kids to move in with us. My question is: Is she more contagious while she is having an attack or is it the same all the time? If she handles a bottle of juice from the fridge, then I pick up the bottle, can I pick up the virus? Intimate contact means kissing on the lips? No possibility of that. She is like a daughter.
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Hi, well the recommendations are that once you have EBV you shed any time but don't have recurrances. If she is feeling bad it may be just chronic fatigue or another virus. It is most likely not an attack of the original virus.  So you are just as likely to get EBV from her as anyone else. about 90% or more have had EBV by adulthood so it is almost impossible to not transmit it at some point. Often, when children get it you often think it a cold virus and when a teenager or twenty year old gets it it presents like the typical mono symptoms, sore throat, swollen lymph nodes , fever. Kissing on the lips is the way to transfer it. Intimate meaning it is a big kiss not a peck. But, to be extra safe a kiss on the cheek is what we always did in our house. If you want more information google Centers for Disease control and prevention or CDC  and mononucleosis or EBV and you will get the same information.  There are other problems with EBV that a few people like 3-5% get Burketts Lymphoma and other types of lymphoma and really the other viruses can do this too but people just aren't aware of it. There is some data that suggests that influenza can give you Parkinson's disease many years later. Anyway, I think you can't avoid it in life. You can actually get yourself tested for EBV IgG serology. And you may find out you have been exposed. The kids can be checked too. But if they don't get it from her and haven't been exposed they will be. I can get the link for you if you  like. It would be good for you to read it so you can feel that you got it from the horses mouth so to speak. That is if you trust the CDC. I trust them with epidemiology related information. Some people don't like their information on Lyme's disease but that is another story. Of course you can read anything you like.
mkh9
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Avatar_m_tn
I have had Chronic Epstein Barr Virus infection for going on 7 years now.  Got a diagnosis in 2009 (after years of suffering) along with low vitamin D, chronic anemia and an auto immune disorder.

I am convinced the only way to combat it is by changing your diet.  If you read up on this, EBV is a herpes strain, herpes (all strains) feed on the amino acid Arginine - (anyone ever tell you to take Lysine if you get cold sores? Well Lysine balances out the Arginine.)  Anyway, I'd eliminate ALL sugar and try to go plant strong.  

This means eat veggies like they are going out of style.  Limit everything else (meat, oil, sugar, dairy).  If you question any of this, look up Dr. McDougal on Youtube - search his name and 2013 for some of his latest stuff.  There's about 9 or 10 videos he's done on the benefits of a plant/grain strong diet  (here's the first video: https://www.youtube.com/watch?v=WYfq-V_5Cv4) another show to watch is "Forks Over Knives" which I think can be live streamed via Netflix under documentaries

You won't make EBV go away, but you may be able to put it into remission.  Make the focus on healing your immune system.  And be careful what you choose to say and focus on in your mind, because your emotions can play a big role in how your immune system reacts (ever have a huge fight and wake up the next day with a cold?  its all intertwined.)

I'm still fighting myself and some days I get really mad because I used to work out all the time and on bad days I can't even clean my house - have gained 50 lbs.  It's misery - but you're not alone.  Check out Facebook - there's a page for suffers of this.

I wish you peace and wellness,
Reese
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Not sure if I understand your question or if what I say will help, but EBV is a herpes strain that only causes mono if it gets in your glands.  It's transmitted via saliva, which is why nearly 97% of the population has it.  More people may not show a mono infection if the EBV never progresses to their glands?  (Honestly not sure why some get sick and some don't).

Compare it to the herpes strain Zoster, which causes chicken pox in everyone, goes dormant and comes back in a select few as shingles.  Same idea.

I do think more needs to be done in research on this.  one part of it that makes me miserable is that a person suffering from it doesn't always "look" sick - they just feel like they are a rag doll from fatigue.  I got so much grief from coworkers, family and even my boss because they all thought it was a big act.  Even though I brought in reports from the doctor showing what it was about.

It's bad enough being sick - but worse when no one believes you.
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Hi Reese1998,
Just wanted to say I agree that keeping your immune system up is very helpful with any virus and I'm on the Dr. McDougall diet too. I hope more people reap the benefits of this healthy way of living. Sorry you are suffering from EBV.
mkh9
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WOW, It is crazy to see that others are going through the same thing as myself.

I was diagnosed with EBV (mono) at age 13. (from sharing a water bottle with a friend at soccer practice) My friend was diagnosed with mono & recovered quickly. But I, on the other hand, was not so lucky. I was terribly sick for over 6 months!

After finally starting to regain some energy, I was diagnosed with SHINGLES. I remember my Doctor telling my mom that something like 1% of teenagers get shingles....Shingles are no joke either, the pain was just unbearable. It took about 4 months to recover.

Not even a month later, I was diagnosed with a rare skin disease called PLEVA, ( a T-cell disorder) which took 3 YEARS to clear, (unfortunately, It will always be with me as an occasional flair) I can say that this was absolutely the loneliest,  most embarrassing, painful time of my entire life!


It wasn't until I was about 23 that I started to get extremely fatigued. I developed migraines, skin lesions, an all over ache & the overall "unwell" feeling. I would wake up feeling as if I was hit by a buss, for no apparent reason! I was always sick. It was exhausting & depressing to say the least!

After SEVERAL doctors visits, which mostly consisted of me leaving in tears, feeling like I was insane, I started to give up. I couldn't handle it......  

But, then I started breaking out in hives almost daily.. After consulting with several Dermatologists, I have finally found one who is giving me some answers. Multiple skin Biopsies have come back inconclusive, as Neoplasms of uncertain behavior. This means that they are not malignant now, but can become malignant in the future.

Through blood & scratch tests, we found that I have developed environmental allergies, along with allergies to foods that I have been eating my entire life!  Peanuts, Wheat, Milk, Eggs, Shellfish & Sesame.

An extensive blood work panel reveled that I have Chronic Reactive Epstein Barr. Basically, EBV laid dormant for years & is now coming out & causing all kinds of havoc. My Derm put me on Valtrex & it is helping somewhat with my hives/lesions associated with EBV.

Today, I saw my doctor because I have developed swollen lymph nodes. One on the back of my head & 3 others at my left collarbone. I am scheduled for an urgent ultrasound tomorrow.  I am praying that this is not related to Hodgkin's lymphoma, as EBV is highly associated with Hodgkin's

There is NO doubt in my mind that all of my medical issues have stemmed from the Epstein Barr Virus. I don't know what is going to happen, but I do know, that NOONE knows your body like YOU do. Only YOU know when something is not right, or "off". DONT give up & keep fighting for answers & NEVER let this horrible disease take control over your life! It may seem impossible now, but the answers are out there.
I know first hand how hard it is, but stay positive.
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I strongly recommend you ask for EBV DNA PCR test.  If you test positive it means you have chronic active ebv (caebv) very serious, lethal disease.  There are only maybe handful of dr.'s (NIH & Baylor College of Medicine) that are familiar with the disease.  I was diagnosed at Stanford and was sent to NIH.  Your symptoms are very similar to mine.  I'm always having to get cat scans and biopsies done.  Please update your illness when you get a chance and hope that your biopsies came back normal.
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