Is EBV going to kill me ??

[LivingDead101]

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.

[Dani_Doherty]

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.

[Feelinggreat2]

Read from Fatigue to Fantastic. Take Pro boost & D-Ribose. I was sick for 8 months in 2010. I take the Ribose everyday & I have been good for 12 years now.

[kappel]

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.

[eddiie01]

I have been suffering from (HERPES) disease for the last four years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man DR DAVE and he also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to DR DAVE telling him about my (HERPES Virus) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the DR assured me that i have cured, after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email DR Dave on  ***@**** sir i am indeed grateful for the help i will forever recommend you to my friends!!! with your lovely Email Address ***@**** or you can also call him on this number [phone]

and he cure the following virus:

HIV
EBV
CANCER
SARCOIDOSIS
HPV
COPD
LUPUS CASES
DENTAL CARIES
ZIKA VIRUS

[Hatmaker1]

What’s his email?

[Mfoxer]

Hi, EBV ruptured my spleen, in Dec. 2013. My life is terrible.

[rosah27]

I have been reading all your post and you seem very familiarized with the topic. Does EBV causes back pain?? I am going crazy with this symptoms I posted my experience..hope you can help me
Thanks

[SuziRider]

EBV causes lowered ATP cellular energy throughout the body. This causes kidneys, heart , muscles, head, etc. to ache, and it is different for each person. Aching muscles symptom of CFS is called fibromyalgia. I mostly get it in my back for days after I excercise.

[FlyGirl78]

Thank you for reading this thread and taking the time the to leave the link to the book... Medical Medium and what's potentially at the root of medical mysteries. I too have been suffering like all these previous ladies. I too have been told that "it's all in my head" EBV, CFS, and CMV, are just a passing thing and will not cause all of my symptoms and pain. I have all of the same symptoms and excruciating pain just like these ladies.  I am so grateful to have found this book. I just know it is going to change my life. I will keep you updated.

[mkh9]

Shelly,
I know you asked someone else a question but I thought I would add that some types of migraines can cause vertigo as well as a couple of other problems. I have a type of migraine that causes vertigo that pretty much knocks me on the ground. I went to a neurologist that specializes in migraine because I know I have them (my EEG is positive) and she first had me tested for Acoustic neuroma in which I was thank goodness negative, and also negative for the benign positional paroxysmal vertigo and I am negative for that since it doesn't happen with movement of my head. So she put me on a drug for migraine called Trokendi and I haven't had one since the drug was at the proper dose. Plus a very lose dose (10mg) of Amitriptyline. She tried also Cyproheptadine first and that didn't work. So it is worth getting checked to see if you have a odd type of migriane by EEG.
mkh9

[dizzyshelly]

Hi Kris,
I have vertigo and have been suffering with it for 6 years now.  It is awful and I have sought the help of many doctors and none have been able to help me.  All my tests come out normal except for the most recent bloodwork which indicated high levels of EBV antibodies.  I have been reading about EBV and have found some links to nerve damage as a result of EBV that can lead to some of the symptoms that I have.  I am trying to work with a holistic doctor now to strengthen my immune system to stop the virus from thriving and doing damage.  I am not sure if there are doctors out there that have an actual treatment protocol for EBV.  Most conventional doctors I have asked about the high EBV numbers say that everyone has the antibodies and that it has nothing to do with my symptoms.  I don't believe that at all though.  Any suggestions on what type of doctor to see?  I live in the Philadelphia area.  I have appointments at Johns Hopkins in February and June with a headache specialist(the head of the department) and a vestibular neurologist but I don't know if they deal with EBV or just specifically symptom management of the headaches and vertigo.  Any suggestions or information would be most appreciated.
Thanks,
Shelly

[Leddond]

Shelly, if you are still looking for help contact Dr Laura Ruby in Westminster, MD (just 25 miles south of PA state line and north of Baltimore.). She had been a Godsend in helping me recover from EBV.  Check out her website at www.owforlife.com

[EBVBaltimom]

I see Dr. Richter at Integrative Wellness in Ellicott City, MD.  She did lots of blood work and found my issues.  I am taking monolaurin, methylated Vitamin B, whole food multi among other things.  Dr. Richter charges $200 above insurance for concierge fee.  So well worth it! My PCP is a Hopkins doc.  She’s terrible.  Dr. Richter and her partner are from University if MD.  They are much better with this.  You can google her to get her contact info.

[jlk0729]

Wow after reading through all these threads i understand the pain as i've been going through it for 8 years. A friend just sent me this article last night...it is out of a new book just released...FINALLY something in writing that describes all of this insanity.
http://goop.com/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/

A brand new book that describes how EBV can create havoc in your body...wow I'm amazed at how every stage was exactly how I felt!!

[Pwh5]

CAEBV can kill you but it probably won't, it will make you really sick. I had CAEBV when I was 4 now I'm 17 my case of it gave me encephalitis and I was sick for almost 7 months, I survived with some kind of brain injury but I'm good as new even thought I got a brain injury. I know how you feel. I hope your better now. Ignore those comments lol.

[Pwh5]

CAEBV can kill you but it probably won't, it will make you really sick. I had CAEBV when I was 4 now I'm 17 my case of it gave me encephalitis and I was sick for almost 7 months, I survived with some kind of brain injury but I'm good as new even thought I got a brain injury. I know how you feel. I hope your better now.

[Pwh5]

Ignore all those 't lol I didn't even type that so I don't know why that's there.

[Moonrabbitzmom]

Hello, everyone.

I just stumbled upon this huge thread. After reading most of this thread, I'm still uncertain of my future.

I was given the terrible news two days ago, and see my primary care doc on Saturday. I was informed that not only did I test positive for EBV, the whole panel lit up. I have EBV, CMV, HHV6, and all the others at varying levels. (I'm going to request a copy of the results.) I'm scared at this point. I feel very fluish, and my lower abdomen hurts every time I breathe. I'm retaining urine, not completely emptying my bladder during one sitting. Of course, I'm also terribly fatigued and suffer nausea and vomiting once and a while without warning. My liver enzymes are elevated. And, my heart rhythm is showing some abnormality in the ventricles (the lower part of the heart. Since my grandfather died as a result of long-tern, severe heart disease, and my grandmother had congestive heart failure (although, that's not what killed her... she passed from brain cancer). My grandfather on my father's side had an anyurism.
So, after hearing my family history, the doctor shared that he would be praying for me. (Yikes!!!)

In a way, this answers many questions. Three years ago, I had what appeared to be a stroke; however, they were never able to properly diagnose it. I was under a lot of stress at the time; so when I felt the gunshot go off in my head, and then awoke with the left side of my face, looking as if it was melting, I assumed it waa a stroke. I had difficulties staying awake. I slept constantly; and when I tried to get medical attention, I found myself in an overcrowded emergency room... one pupil pin point and the other dialated. I began researching my test results, and found that a neurological symptom of an activation of these viruses can mimic a stroke. Of course, I recovered after three months or so with only an increase in antidepressants.

Finally, my question... I know that this is highly contagious. Are my grandchildren in danger when they come to visit? My grand daughter is 17 mos, and my grandson is just over 4 years. He has yet to be potty trained.

My husband has myastenia gravis, thus he is immunosuppressed, I'm having him tested. It would be a miracle if he wasn't infected. He's been complaining of a headache, and sleepiness, being bedridden for at least three months now. Actually, he's been like this for so long, I can't remember when he was up with me during the day longer than a day or two in a row.

And, lastly, what happens next? When I see my doctor on Saturday is it likely that I'll end-up in the hospital? Will this pass like the last time? Is this going to kill me?

[Jamieannilyn]

I feel the same way.

[Jamieannilyn]

My EBV has been 600+ for over a year now. I have Lyme and several co infectious.

I understand every word you say. This ***** the life out of you. My advice is to be careful taking antiviral meds. I was at a 5 and after three or four days on antiviralsin the hospital, I spiked and stayed there ever since.

I'm still at 600+ and yes, it is exhausting. Be careful not to fuel the virus with too much glucose/sugar. God Bless.

[Jamieannilyn]

Yes, I have this. And, I'm sorry to say but I am an Rn with Lyme and countless years of horribly devastating blood work.  I have been on both sides of the fence and YES it can kill us.

I'm sorry, starting praying. I will pray for you. I'm sorry if this scares you but it is the truth. Seek your soul now.

[Jamieannilyn]

I understand.

[jesse101tx]

Did you ever figure out what's going on with you?  Hopefully it's over and you are back to feeling normal!

[mkh9]

p.s. of course you would have to rule out that your vertigo is not caused by movement or an inner ear problem before taking Trokendi. But if you have then it is an option if they think it may be caused by migraine. Going to a neurologist that specializes in migraine would be best. At least that would get rid of some of your symptoms. It does take some work to get the right dose and so forth.
mkh9

[mkh9]

Hi and so sorry you have all these problems. Have you ever had an electroencephalogram (EEG) to rule out seizures and see your migraine pattern? It might be good to do. It might be good to try some medications to see if they help get rid or improve some of your symptoms. I have a migraine variant which causes: migraine headache, aura, severe vertigo where I fall over, double vision, flying lights and I have been to an ENT and it isn't inner ear. In my 20's I also got severe vomiting and abdominal pain with no other symptoms only at night. They gave me 1.5 mg of Klonopin for that and I have been on that for 20 years. Now my neurologist tried Cyproheptadine and Amitryptilyne at a high dose and they didn't work. So I'm now on Trokendi , which is exdended release Topamax. Trokendi is a bit better on the memory issues but it makes you exhausted the first 3 weeks then you get used to it. It totally took away the vertigo and double vision, but I get about 2 migriaines a month and 1 aura and very few flying lights instead of all the time. So all together I'm on 10mg of Amytriptilyne and 500mg magnesium, and 1.5mg Klonopin at night plus the 75mg of Trokendi.  I don't know if you are on any medication that is causing the paralysis. I was on an antidepressant for supposedly peri-menopausal symptoms (which was dumb) called Lexapro and it made my leg lose all its strength. Also, Fosamax gave me terrible leg pain and I had quit that.

Other than that have you had a MRI to rule out MS?  I doubt you have that though. You don't sound like your symptoms show that.

I also have a whole lot of skin allergies to topicals. So have you had allergy testing? I have had some but I just avoid a lot of things. Most of mine have been due to overexposure to antibiotics.

You may want to try a new diet if you are willing for the IBS. If you can deal with going vegan and non fat there is a diet that I recommend. It is on a video called Forks over Knives or on the site drmcdougall.com  It takes some getting used to but has helped many people. It is also anti-cancer, reverses atheroschlerosis, and Crohns disease, and quite a few other problems. It is great to also reverse or prevent diabetes , lower inflammation and so forth.

These are just things to think about. As for the EBV have you had your complete blood count done lately?

take care,
mkh9

[LivingDeadtoo]

I'm not sure about how the original people in this thread are doing but I could relate. I have treated ebv and I am very sick. I now have PICC line for acyclovir Meds but I can relate to so many of previous mentioned symptoms: especially muscle fatigue, paralysis, migraines, dizzy. Vertigo, sudden & extensive food allergies, ibs, swollen eyes, lesions-itchy scalp chest, back, inflamed diaphragm/chest (have had the palpitations) lots of pain. I'm sure I'm missing a few things. I read everything b/c I feel like I'm dying-it's awful. I love my life and my job. I have 5 children and I teach drama in an ES. But it's getting harder. Been fighting hard 2 years w paralysis. 40 now-I can't eat much lost weight - at 116 and keep loosing. I had a horrible case of shingles at 32 & mono in college. Iga 67 after 1 month of treatment found out my ebv levels went down only 10 points today. My husband thinks my skin looks better and I look younger, I felt from a level 1 to a 2 in better for like 2 days now back to a 1. It is a nightmare. There has to be an answer to this. I agree, it is not living. I can't help but think I am dying, 1/2 expect it any time now. But I keep going & hope, I'm on Spring break but still working-w/accommodations-though it's almost impossible.  Not sure how anyone can go on like this. It is helpful to see not alone. I'm grateful to see the faces of the children both at home & work.

[kappel]

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.

[mkh9]

Its really unusual for an adult your age to get a first case of mono caused by EBV. 95% of us have antibodies to it by early adulthood.  I wonder if they are missing something. Usually, you have atypical lymphocytes on the complete blood count. Your White blood cell count with mono is usually high not low. So it suggests you had something else. symptoms are fever, sore throat and swollen lymph nodes and fatigue. The platelet can be down with mono but also with Strep throat and viruses.

What did your EBV panel results look like? The mono spot test can be falsely positive with a lot of diseases.

Did you have mild or high liver enzymes? I wonder if you had infectious hepatitis? If you had mildly elevated liver enzymes it would suggest mono or another virus if high more like Hepatitis A except with Hepatitis A the fever is usually low grade not as high as yours. Did you get tested for that?

Any diarrhea? Also, there is toxoplasmosis, which has similar symptoms and can last a few weeks or a couple of months. Some people don't get symptoms some get worse symptoms that yours. People who have a cat are at most risk. But you can get it from ingesting it and so forth. If you have it you usually don't get treatment it goes away on its own.

In any case if you did happen to get Mono it does take a couple of months to go away. EBV doesn't really reactivate in this way. It is really Human Herpes Virus 6. That can reactivate. But a lot of people think it is EBV.  EBV is in the Herpes family anyway.

In any case I hope you feel better soon. It will pass and you will get back to yourself.

mkh9

[bearby59]

I was admitted to the hospital the first part of Dec. 2014 after running a high temperature for 8 days and being extremely exhausted. I went to Urgent Care first where they did a lot of labwork. This showed some drastic info. WBC very low...2.2...Platelet cnts at 52. Low Potassium. Liver enzymes abnormal plus numerous others. They advised me to go to the emergency room the next day when my fever went up to 104.8. At this point I was admitted. Still not knowing what I had, they did an Spinal Tap, checking for meningitis. Also thought I may have Leukemia. Not until the day I was discharged did they do the EBV panel. All 4 of the panels came back positive....8.8. I was off work for over a month, as I work nightshift on a Pediatric Unit in a hospital so definitely need to be on top of my game. Have since been back to work but have had absolutely no energy and have continued to miss work due to numerous viruses....head colds, stomach bugs, fevers, etc. I was someone who was able to run 5k's and was very active...I cannot even walk from my car in the parking structure at work to my unit without being totally exhausted. This virus is causing so much depression because I am not someone who deals well with staying down and in bed. I have missed so many activities and events. My Infectious Disease Dr. has told me numerous times to expect not to feel myself for at least 6 mos. to a year. Has anyone else had to deal with this and does this sound familiar to you? I guess I just need to make sure I am not alone here and that this is to be expected and I will improve someday eventually. Thanks for any help you can give me.

[mkh9]

Hi ps 11,
No it is not known to be a symptom of mono.
mkh9