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3229560 tn?1347037510

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.
78 Responses
1415174 tn?1453243103
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, 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
Avatar universal
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.
1415174 tn?1453243103
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 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
Avatar universal
My eyes get randomly red and I twitch from time to time. Should that be a cause of concern?
1415174 tn?1453243103
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
Avatar universal
I'll look up on the red eye. What I meant was muscle twitches. I hope it isn't anything serious. Thanks mkh9!
1 Comments
I have cebv it has been hell for 18 Mo reactivated by my dad dieng stressful job I now have 5 auto immune deseases diagnosed in one yr. Get the medical medium by Anthony Williams there are two support groups on f.b w ppl living with this there are 11k members one group and 4.7k on the other. The book explains a lot and why ppl get sooo sick from it. Also tells u how to heal. Hope this helps
1415174 tn?1453243103
I think the eye twitching is stress or tiredness, nothing serious. Do you have it all the time and for how long?
mkh9
3229560 tn?1347037510
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
3229560 tn?1347037510
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 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
1 Comments
Are you still feeling sock or any better?
1415174 tn?1453243103
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
Avatar universal
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.
1415174 tn?1453243103
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
1415174 tn?1453243103
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 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
3229560 tn?1347037510
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
1415174 tn?1453243103
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
Avatar universal
Have you been tested for lyme? Or possible mold exposure?
Avatar universal
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.
Avatar universal
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
Avatar universal
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
1 Comments
Help with EBV..
I'm finally getting over Reactivated EBV and initially my tests for it were off the charts. The range was 1.0 to 19 and I was 600. My dr was no help and I've quit going to the dr's after they were testing me for Lymphoma and other things because of my swollen lymph nodes. I found a book called "Medical Medium" on Amazon which really helped me to understand which foods are anti-viral and which foods you should stay away from (that feed a virus). It also helps with knowing which anti-virals to take. The other thing I did was order medication called MMS from Australia. I read up on it on the internet. It kills pathogens and viruses. It is famous for killing Malaria. It's not an easy healing journey, and I'm not finished, but I can tell it's working.
Avatar universal
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
1415174 tn?1453243103
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
Avatar universal
hey now that is 2013, are you feeling any better?
Avatar universal
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.
Avatar universal
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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