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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.
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
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
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
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
2 Comments
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
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.
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!!
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!!
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.
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.
1 Comments
Ignore all those 't lol I didn't even type that so I don't know why that's there.
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?
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?
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