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.

[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