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Does anyone with EBV suffer from eye problems?

I was recently diagnosed with EBV (just got the results back today). I started having problems with my eyes shortly after becoming pregnant with my son (5 years ago). I was originally diagnosed as having shingles of the eye and the Herpes of the eye. Eventually I lost all sign in my left eye. I had severe corneal scarring and had to have a transplant about 2 years after my son was born. The test results of my cornea indicated a NEGATIVE result for Herpes of the eye so they sent me to an autoimmune specialist to test me for other diseases, all of which also came back negative. I don't remember all of them, but there were several including lyme disease and a few STDs. I stopped going since they didn't find anything. About  a year and a half ago I became pregnant with my daughter and started having some minor vision problems but shook it off as something related to pregnancy and it quickly cleared up. My daughter just turned a year old and about 2 months ago I noticed my vision getting blurred in my right eye (not my transplant eye). I went to see my doctor and sure enough I am going blind again - just now in the other eye. I have severe cornea scarring that is irreverable so I am going to need another transplant. Wanting to get to the root of the problem, my doctor sent me to another specialist for further testing. The ONLY result that came back positive was EBV. I've done a lot of research on the internet and I can't find anyone with EBV that has had this type of problem with their eyes. The only case I could find was of a homosexual man with HIV - nothing like me. My only other symptoms are constant fever, feeling like I am sick (I take a lot of tylonol), sleepy, night sweats, recent cases of what I thought was exema (sp?) of dry, itchy patches on my hands and face, and I have a lot of lower back pain and headaches just about every day. I've been dealing with this on and off for over 5 years. I can handle most of it, but my eyes concern me. I'm worried I will go blind some day permanently. I just need to know if anyone else has had any of these problems with their eyes and were diagnosed with EBV. Anything would help at this point. I feel so alone in this...
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K2R
Curious to see if you got better.  
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Avatar universal

Vision Problems in CFS and Fibromyalgia (by Dr. Jacob Teitelbaum --- CFS expert and has CFS himself)

http://www.endfatigue.com/health_articles_c/CFS_FM-vision_problems.html

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Avatar universal
Thank you all for your replies. I've only been dealing with an eye doctor so I plan on getting a refferal to an infectious disease specialist this week. I really hope they are proactive and run more tests - especially for the Lyme disease. I grew up in regions with ticks so that is something that has been bothering me for some time, even though the first test came back negative.

Krissy - Did they find anything else wrong with you or was it just the EBV? I keep thinking there has to be more to it than just that. I've already had one cornea transplant and will have to have another one soon. EBV just doesn't seem like enough of an explanation for me to continue going blind. If it were just blurry vision, I could probably accept that diagnosis. But severe scarring of my cornea to the point where I have to have a transplant seems a little much.
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1 Comments
Hello, my wife is now undergoing treatment. It started as a migrain. Then loss of vision in left eye. Body aches. Tired and sleep I alot. Veryigo. So she's seen Maine best specialist and got referes referes Mass General Hospital Boston.  As of now both her eyes  are distorted like waves.  They ruled outalot. But Epstein Barr , uvinitis,  autoimmune,  and menigitis  are diagnosis that come  up. I'm looking for answer how I happen to avoid for me and our daughter. Also a way to cureor reduce symptons. Tho is a hat battle for anyone
Avatar universal
I suffer from blurry eyes and sometimes my vision looks as if I am looking through waves or either water. I have a ton of other neurological symptoms and sometimes I wonder if EBV is really the bottom line of all of this. I had my eyes checked once I got the floaters in my left eye, but the opthamologist stated that everything was fine. My neuro seems to just be waiting until something worse happens. I am tired of it all.
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Avatar universal
yes i have suffered from severe iritis, and inflammation on both my eyes.
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810264 tn?1239170897
high i to was diagnosed with EBV ive been battling this monster for almost three years it started with what seemed like a fever that never really got better for the longest time i felt like i was always running a low grade fever but that seems to have subsided somewhat also I did have some vision loss and blurring in my right eye that hasnt ever gotten better i also have the typical muscle fatigue and aches that come along with this disease as well as annoying body twitching if you read my profile ive been researching yeast overgrowth and candida poisoning which doctors arent trained to diagnose or even look for!? if youve ever had to take broad spectrum anti- biotics are exposed to enviromental pollutants, or have a poor diet of sugar, yeast heavy, and non organic animal bi-products which is the case with most americans your a good candidate for candida it could also explain the rashing youve had to endure.  Have you become more allergic to things than you used to be? our intestinal tract has a delicate balance of bacteria and good yeast any disruption to this balance can through our immune system which is mostly in the intestinal tract and subsequently our entire body into chaos high EBV levels are a tell tail sign of this... your not alone in your fight take heart we'll beat this take care
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Avatar universal

Hi ! I am so happy that you are here. I have had blurry vision at times with my chronic EBV (CFS) infection.

My suggestion... if you've only had one test for lyme disease, please consider getting another test. This is just too important. I can tell you that I have read of a case where a man had undiagnosed lyme disease and lost his vision as a result.

Testing for lyme disease is most often unreliable. The preferred test (and insurance may not cover the expenses) is:

Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/).

http://www.immed.org/illness/clinical_testing.html


I highly recommend that everyone who has a "CFS" or "chronic EBV" diagnosis rule out lyme disease before accepting that diagnosis.

I hope that you will keep us posted.... I can relate to your symptoms, although I don't have lyme disease.
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