ebv and neurological problems- HELP!

[melmel67]

HELLO.. I have never posted on here but need help from someone out there! I am a 31 yr old female that had been previously diagnosed with ebv and have suffered from dizziness for the past 3 years. This past month in May I was working out and started to noticed tingling and numbing in my left toe. I ignored it and continued to work out as the days went by I noticed that the tingling and numbness was spreading. Each day it was something different it continued to move up and then to my right side. I am worried because it feels like it's going further up and I don't want it to cause problems in my brain, eyes, etc. I started getting dizzier with spinning attacks last week and now I don't know if I am paranoid but my eyes all of a sudden got drier. I feel the tingling in my face and that is what worries me. I have two children and I can't keep up. OH ya the reason I know its EBV is because my glands are super swollen and have been like that since a few days the numbing and tingling started. I have gone to a neurologist and he basically dismissed me and referred me to a rheumatologist and my primary doctor doesn't know what to do because she tested me for mono and it came back negative so she just didn't do anything besides that. I am doing all I can such as resting which is hard with two boys, drinking plenty of water, eating right. Oh ya I am low on vitamin d so I take 2 supplements each day for that. Plus I take b12 shots for vitamin b12. I am on valcyclovir 500 mg each night. I have read that ebv can have neurological effects and it can go up to the brain and cause brain swelling and vision loss that is what I am worried about. Please and information to get rid of this would be helpful and I would appreciate prayers as well. thanks.

[melmel67]

It is a relief to not be searching because that was very EXHAUSTING! I had already run out of places and things to look for. I think the lord put ewford in my path because to me there is no other explanation. I don't know much about lymes either but I will find out soon enough. God bless!

[9DodgeFan]

Glad to hear you got a diagnosis, but hopefully it's somewhat of a relief to not be searching anymore!  I don't really know anything about Lyme disease, but I wish you all the best in dealing with it!

[ewford]

  I notice now Sporque is a little TOO quiet.    Lymes brings to surface past viruses that your immune system cannot control anymore, since it is overwhelmed.  Maybe Sporque needs help too.

[pitterpat69]

Sorry about your diagnosis,  but I am glad you finally found out what is wrong with you.  What do you think now Sporque?

[melmel67]

Hello everyone just wanted to give an update because I just received a diagnosis of lymes. I want to urge everyone to get tested for lymes disease through an Igenex lab. Hope all get well & god bless!

[melmel67]

Hello. The neurologist said that I have an "infection" that is causing all of these neurological symptoms. He never mentioned what infection and he said that I am having symptoms of MS. He prescribed me tamiflu, antibiotics and antifungal to clear my system, but the tamiflu did not work. I need to find a doctor who can treat what is really going on because this is very frustruating.

[9DodgeFan]

So the neurologist is chalking everything up to EBV?  Or what exactly is this "infection" he was talking about?  I'm also wondering what the medicine is for, that he gave you.  Sorry for all the questions, but I'm just a little confused from your latest update!

[melmel67]

Thanks for your response. I have been tested for the EBV and I tested positive and the test was done 2 years ago when the dizziness started. I have never had symptoms like these before and I just saw a neurotologist and he said that an infection would be causing all these symptoms and just continued me on the meds I was on. It's very discouraging because there is no medicine to aid in getting rid of this faster. I was getting alittle better but it seems like it started all over again!

[9DodgeFan]

When you go back to your doctor, you need to get the Epstein-Barr titers test.  I would say there's a good chance you do have it, but it would be a big help to know for sure, and assuming it's EBV just because of swollen nodes is NOT a good assumption, in my opinion.  Also, you may want to check into taking something (or therapy) for anxiety, because it sounds like you're having quite a bit.  I'm not at all trying to downplay what you're going through, but it's amazing what our minds can do to us when we think there's something wrong with us.  Of course we don't want to rule out other sicknesses/diseases, but I think EBV and anxiety could very well be the cause of all your symptoms.  I hope this helps, and please keep us updated on how things are going!

[sporque]

Doesn't sound like Lyme or Mononucleosis to me.  You should follow up with your Doctor before going online for advice and before spending hundreds with Igenex labs or whatever.

[melmel67]

thanks will post on the lyme page next.

[ewford]

Come to the Lyme page and get as much information as you need.  Your symptoms are exactly like mine and I spent 14 months being missdiagnosed.  You need to get info on IGENEX labs and testing for Borrelia Burgdeferri and Mycoplasmas as well as co-infections.  This is not just spread by ticks.  Post your complaint there and get proper testing done ASAP.