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Epstein Barr Virus (EBV) Community
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dry eyes and eye floaters

Plateletgal,

Approximately 3 weeks ago, I began having floaters in my right eye. I went to the opthamologist 2 weeks ago and he told me that my eyes looked fine and there was no sign of optic neuritis. Since I have been dx with EBV, my eyes are dry and the left one, which is the eye that contains the floaters does have some mild pain. Is this a part of the viral process? Since I am having other neurological symptoms, should I get a second opinion about this? I am getting getting concerned about it.

Thanks
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Avatar universal

Hi ! I believe it is and the only reason why is because I have dry eyes and I'm frequently thirsty. There has been research done on this because many CFS patients have symptoms of Sjogren's Syndrome, but do not test positive for the autoimmune illness.

My mother has Sjogren's and I remember reading that researchers believed the cause of SS was VIRAL (sound familiar ?) :

Here are some links:

Chronic fatigue syndrome and a disorder resembling Sjögren's syndrome: preliminary report :

http://www.ncbi.nlm.nih.gov/pubmed/8148449?dopt=Abstract

‘SERONEGATTVE’ SJÖGREN'S SYNDROME MANIFESTED AS A SUBSET OF CHRONIC FATIGUE SYNDROME

http://rheumatology.oxfordjournals.org/cgi/content/abstract/35/5/471


Avatar universal
Thanks Plateletgal,

This was some very interesting information. I go and see my nuero tomorrow. Hopefully, I can get some better answers or a better direction as far as what can be done in regards to this virus.
Avatar universal

Good luck with your appointment and I hope that you will keep us posted !
Avatar universal
Hello Plateletgal,

Went to the neurologist yesterday and found out that my Vitamin D level was a 7. Normal limits are 32-100. He told me that he thought that the vitamin d deficiency could be causing some of the buzzing, tingling, numbness, fatigue, etc. He put me on 50000 IUs of Vitamin D for the next 2 months. I am to have another blood draw in March. I had already started taking Vitamin D over the counter about 3 weeks ago, but I did not understand why he waited for me to come to the appt to tell me about the low Vitamin D levels with my levels being that low. I did not understand this. He brushed off the idea of the possibility of this being MS and told me that he was not concerned about it being MS. He told me that he thought it was still a result of the Epstein Barr and the Vitamin D deficiency. My EMG/Nerve Conduction study came back ok, but that still discouraged me a little because that means that the sensory stuff that is going on must be coming from the brain if the not the peripheral nerves. I know many people may not want to take the Vitamin D, but at this point, I don't think I am left with many options. He still thinks that there is something going on with my right eye and is sending me for a CT scan of the eye. Even though I had a TSH, T-3, T-4 drawn 2 weeks ago from my PCP, he is drawing his own. I told him that my mother had thyroid issues and he mentioned Graves disease. I am still confused and left with little answers. I don't understand why my thyroid results would keep coming back normal if there was something wrong. I am going to the infectious disease doctor tomorrow and will show him my results as well. Please let me know of any thoughts or ideas that you may have on this.
Avatar universal

I'm not surprised to hear about your low vitamin D level. Dr. Nancy G. Klimas, a noted immunologist and world leader in ME/CFS/FM and Gulf War Syndrome says this about vitamin D, "low vitamin D is a frequent finding even in my sunshine state – Florida - and vitamin D is important to immune health. But I don't now if it was there to begin with or is a consequence of the illness." (source link below). I have mixed feelings on vitamin D. I disagree with many physicians that a low vitamin D level causes illness. I believe a low vitamin D level is the result of illness in many people. There has been some new research that is very controversial on this by Trevor Marshall. Ph.D.

So what are all of your symptoms ? If I remember right.. you had tingling & numbness. Any pains... if yes, what sort of pains ? Fatigue ? Muscle aches ? Unrefreshing sleep ?

The only recommendation I can give you is to consider seeing a physician who knows about CFS (and EBV). Co-Cure.org has a "Good Doctor's List" and members who have subscribed to Co-Cure have posted their physicians on their website. You may want to consider checking out that link and seeing one of those physicians. Also, here is a link below to the Whittemore Peterson Institute. I have high hopes for this place. I know one of the things they are investigating is what they call "atypical MS".  The people who founded this institute have a daughter who was diagnosed with CFS.

http://www.wpinstitute.org/

http://www.immunesupport.com/library/showarticle.cfm?id=8646&T=CFIDS_FM&B1=EM013008C


I hope this helps ! Thanks for the nice note !
Avatar universal
Plateletgal,

My symptoms included numbness and tingling, muscle twitching, dry eyes, ringing in the ears,insomnia, etc. As far as the doctor in my area that is on that list, I can't get in to see him until the first part of the year, so there is nothing I can do but continue to see the neuro and the infectious disease doctor. My neuro told me that he did not think this was MS, so I am trying to stop thinking about it. No one has brought up CFS. I get the results of my sleep study tomorrow, so maybe this will provide some answers that I need. I have had a number of tests and at least now, I am starting to get some abnormal findings, so this is somewhat hopeful.
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