any hope? EBV *****

[Krissy820]

Hey all, i just wanted to give a little hope! I'm an 18yr old female, that has been struggling with epv, for over a year now, and i can tell you i know where you're all coming from. I have tingling, numbness, heart flutters, neurlogical issues, intestinal issues, (i've lost 50 lbs, since i've been diagnosed), along with white tounge, and pretty much any symptom you can get from ebv, ive had. I went through a long journey being diagnosed though because my immune system is down from the EBV and, it causes me to have sinitus, and ear infections all the time so doctors assumed it was something wrong with my ears, and after seeing my neurolgist, and had EXTENSIVE  testing for every autoimmune system out there, the only diagnoses he could give me was EBV, and vitamin D deficiency, along with a carnatine defieciency. I would definetly see a neurologist though, he has helped me so much with finding medications that work for me and currently im taking, Neurontin, (which has worked WONDERS on the numbness and tingling thing), I'm also taking Compazine, for nausea, and it also helps with keeping my intestinal system in check, I also take Ritalin in the mornings when i feel like I'm 60 yrs old, and cant move. ANd lastly, i take Ativan to help with the anxiety from all the symptoms. Since starting my meds, i have been able to return to school full-time, and be a mom to my two yr old monster again. The only thing i fear is a relapse, and that it won't completely go away. Has anyone had a really good streak with this virus that suddenly went to ****? my reason for concern is because I am now suffering once again from sinitus, and a double ear infection, and im taking a z-pack, but im not feeling better, or like my normal self. Any advice would be great thanks! btw- EBV *****!!! lol

[PlateletGal]

The CDC recommends getting other conditions ruled out if you've had EBV for over 6 months. You may want to consider asking your physician about Chronic Fatigue Immune Dysfunction Syndrome.

Best,

~PlateletGal

[Jenelle44]

Hi Krissy, I just read your post and I am finally glad I found someone I can relate to. I am 28 and was diagnosed almost 2 years ago and have had every symptom under the sun, from ear aches, nausea, headaches etc. I have not visited a Neurologist yet though. My primary doesn't seem to really know or do much. I told my OBGYN and she just nodded it off like oh well. Its hard to find someone who truly listens. Ever since I have contracted this I have greatly suffered mentally and physically. I have some memory loss, which I never had, mass confusion, and severe anxiety at times. Sometimes I feel like what is the point anymore. Going to work in the morning is a huge process sometimes. Getting up in the morning is grueling. On top of it the physical symptoms can be relentless. I have started taking B-12 with a boost of vitamin C and going to get Amino Acids (Lysine) which I have seen work some time back for me. Let me know if you have any other remedies,it woukd be greatly appreciated. Best of Luck "J"

[ginak]

Sounds like you have a great neurologist. Mine seems to know very little about EBV. He seems to be focused on the big stuff that EBV can bring along with it like MS. Its great that you are at least getting some help that you need. I wish I could say the same.