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A Sailors Saga II
Oct 7, 2002

Sir,

Thank you for answering my first question, and thank you in advance for answering this one. You told me to write back when I had more info. Well here goes. I?ve had a pcr quan/qual both non-detectable.

Again I am on a remote island with a hospital that has not been ?certified or accredited? since 1993, no infectious disease doc here and they have never heard of hiv-2. but after the pcr and a neg antibody at 15 months, finally began to accept that possibly this is not HIV. But there was definitely something wrong. Considered donating blood to red-cross, but didn?t have the heart to do that, didn?t want to hurt anyone else. So I went to red-cross web-site and downloaded a list of every test that they administer to every blood donation and took it to my Navy doc and told him that I wasn?t leaving his office until he administered them, after a long talk and a couple of ?threats? he relented.

Well results came back neg for everything but CMV. Knowing this I began to search web for info and this time not with the tunnel vision that I had before, and guess what!!! A lot of the symptoms were listed there, exactly as every doc, psych, nurse, friend and ?body experts? said. I should?ve listened. But just the doc?s just saying that it?s not HIV and not giving me a diagnosis it was impossible.

I was confused because everywhere I look I am told that immune competent people suffer no effects from this infection. I however still have symptoms: mind you the contact was May 11 2001: a. Sudden blinding headaches/confusion b. Rash under my eyes c. Itchy skin d. Diagnosed with Lichen Planus on hard palate and inflamed salivary glands e. Feeling of food caught in my throat, and thick phlegm in throat with awful breath f. Acid reflux so bad that it wakes me up at night and the following morning my tongue is coated with black ?bile? which wipes off with towel. g. Indigestion, soft stools h. Re-current diarrhea i. Muscle weakness j. Muscle tremors k. Burning sensation under skin on chest l. Fatigue m. Pain in urethra n. Several floaters, looks like spider webs in both eyes o. Dry flaky skin on hand p. Sinus problems q. Popping ears and muffled hearing

I have a few questions:

1. I?m no doctor and believe me I?ve learned my lesson on diagnosing myself, but this shouldn?t be happening, should it?? 2. I?ve read that the ear problems could be ?Auto-Immune Inner Ear Disorder?. Is this a possibility? 3. Also that Lichen Planus is not very well understood, and that some researchers are looking into the immune system or Hepatitis as contributing factors. 4. Am I experiencing these symptoms because my immune system failed to mount a sufficient attack? 5. Is this normal for CMV infected individuals? 6. Is there anything I can do? Perhaps see an Immunologist? 7. Do I just accept the way that I am, buy stock in Pepto Bismol and thank god that it wasn?t HIV? 8. Will I lose my sight? 9. Do I try to force Navy doc into more focused direction?

Again, I hate to bother you but I have no other resources right now. Thank you very, very much.

Response from Dr. Dezube

This Sailor's Saga II is a follow-up of the original saga which I posted quite some time ago.

It's hard for me to put your whole story together. Is there any chance you can come to the States for evaluation?? You are obviously not getting all the answers you need. There are a wide variety of inflammatory conditions which can cause many of your symptoms.

I would not blame all your symptoms on CMV (cytomegalovirus). You mention that you are CMV positive. This does NOT necessarily mean that you are infected with CMV and have active disease at this current It could just mean that you were exposed to CMV at some point on your life. Many many folks are CMV positive; It's only a small minority of them with CMV disease.


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