Chronic Follicular Conjunctivitis and EBV

Mid April I had testing done for Vertigo. I could not complete the testing and nearly vomited. Ruled out inner ear, seeing a Neuro to check cerebellum due to poor eye tracking. A few days after, I did not notice, but my father's nurse pointed out that the outer portion of one eye was solid red. I had not noticed. This was the beginning of what I thought was no big deal. Wrong.

I happened to see my PCP for something non-related a couple weeks later and I asked her about my eye. She said it was just allergies. A week or two later it is now in the entire whites of both eyes AND severe periorbital edema. Not pretty. I made an appt with the ophthalmologist.

Eye doc said it was allergic conjunctivitis. Ok, but I have zero allergy symptoms....and allergy symptoms are no stranger to me! Weird, but ok. Given Loteprednol drops and (forget the name) an antibiotic ointment to use around the eyes (can also be used in the eyes). No other symptoms until I used the drops. Burning pain and pressure in the eyes caused by the drops. The red was not as solid, but still present. Went back for follow up. Was told it was cleared up (really??) and told not to use the drops again due to the reaction. But it did the trick. Wrong.

Back a week later, third visit, third doctor. He is baffled and concerned. Said looks nothing like allergic conjunctivitis, looks like inclusion conjunctivitis (chlamydia?? not possible, yearly tests, not even a kiss nevermind anything else!!). Im told tho I do'nt have the symptoms, visually this is what it appears to be so we are going to try Doxycycline. Absolutely no response. Not that. No kidding! Im now on my 4th visit, a follow up same doctor. My eyes are horrible. He is lost. Chronic follicular conjunctivitis with no known source. Autoimmune he thinks. Torn between sending me to Bascom Palmer in Miami or for a second opinion. Opts for the second opinion.

In the meantime, I see my PCP who orders blood work. I test positive on my ANA screening with a nuclear/nucleolar staining pattern and also test positive on all four EBV panels, very high. One is over 750 that should be like 21. Very current and very active reactivation I was told. When I was first told this I still had no symptoms. Within a couple days I was miserable with body aches, headache, fatigue, neck pain and swollen lymph nodes. I have had 3 or 4 rounds of antibiotics, steroids and natural supplements with no relief.

(Since this is so lengthy, I will just say I have been suffering with not only the eye troubles, but neck pain, headaches, swollen lymph nodes, extreme fatigue, muscle and joint pain, rashes and hives to name a few. Weird sensations on my scalp, tip of nose, a bit of pins and needles on the face. I have also had different issues with eyes now, mucus, dry eye, burning, tearing, photosensitivity and pain. Most alarming tho, besides the eyes, to me is the severe neck pain and strange head pain (they seem to correlate) on the right side of head above ear. Lymphatic system? Not sure. No one seems to address it.)

Now EBV can cause ocular manifestations just like mind. BUT since my numbers were so high two months after onset (eyes) my PCP does not believe that the EBV caused my eye troubles but that I have an underlying autoimmune condition that caused the conjunctivitis which triggered a reactivation of EBV. Makes sense. I thought. I get a "rushed" appt with a Rheumatologist (6 weeks instead of 3 months!). Finally!! I see her. I just want to cry!!

Walks in and says you have 15 minutes, which issue do you want to address, thank your insurance for that. What??? Im in tears, literally. She picks the eyes then says she does not believe to be autoimmune related. More tears. I feel crippled. She explains nothing. Checks for Fibromyalgia (I have already had two doctors diagnose this.), yup you definitely have Fibromyalgia. I know..and everything is flaring, OUCH! Then says, I dont deal with that, its a nerve issue so its a neurology thing. So I ask, my neurologist can handle that? Her answer..no, they dont want to deal with it either. Try your PCP. Says (does) I will order your labs, but its not autoimmune. You need to go to Bascom Palmer (I was told this months ago but then told no, its autoimmune so see the rheumatologist, really?? another unnecessary delay!) but they probably wont see you until you have these labs done anyways and they can take up to 3 weeks to trickle in. I leave and break down in my car. Oh...did I mention after the EBV diagnosis I ended up with pneumonia?? It doesnt end. No answers. More delays. I feel like the "hot potato." Sorry such a long (yet still condensed) story. Any thoughts or similar stories? Can Mayo Clinic help me? Is it autoimmune? Is it all related to EBV? Im now worried about cancers that have continuously been ignored. Not sure if thats logical since my PCP says inflammatory but I read (I know, not always good) that cancers can present this way as well. On the bright side, Im no worse and most days are not as bad as my bad days. Be well.

***A few PICS below. The first and third (how they uploaded) are 12 weeks apart. I look so sickly. But at least the edema is now only present in the morning.