Herpes Viremia Almost Ended my Life

Dear Dr. Tom:

I am a retired critical care nurse and I want to tell you my story that involved a herpes viremia which almost ended my life. I have been ill since the initial attack in 1983 and have been unable to find any doctors that will manage my symptoms. I am desperate and I hope you will patiently read this. It is long. In 1983 I contracted (first time exposure) Herpes Simplex through an eczematous finger lesion while suctioning a critically ill intubated patient. I do not know what all he had as he had bacterial, fungal, etc. infections. I was critically ill with a massive viremia and sores all over especially where I had eczema. I had it in my eyes and sinuses, nose, you name it was there (except never genital). I believe it was Type-1 but I am not sure. I had a white count of about 1500 to 2000 on admission. I was treated as a bacterial infection for 5 days, was semicomatose for a week. When my dermatologist returned, he made the herpes dx by skin slide and I was treated with IV Acyclovir (which, thanks to God, had just been approved for IV use). I was found to have T cell lymphopenia up to 4 years later. I continually had outbreaks in my eye and on my hands and face. So AT UCSF I was treated with oral acyclovir but had to come off because I had neurological side effects similar to M.S. Every one threw up their hands and I have continued to have a sequel of symptoms and illness that are immune related and were not present before this. No one know what to do for me and my life is miserable. Currently I have spent 16 years with chronic and painful lymph node swelling (size of small apples) in my neck with extreme fatigue, terrible memory problems, especially short term, chronic pain over my left face and some droop of the lid and mouth since February. The later seems to be related to a raw area in my left neck/throat which I believe is herpes (I had this dx on first outbreak) but no one knows how to find out if it is. I have had it for 5 months and it followed shortly after being put on a respiratory steroid inhaler. I wonder if it could be causing the throat thing. I do know that nasal steroid inhalers cause it in my nose. Sores sometimes break out on my face over the numb areas. I wonder if the herpes is damaging the trigeminal nerve? Concurrent with the viremia I developed an off the scale IgE level with all sorts of arthritic/ lupus symptoms. I also developed chronic cardiac arrhythmias some times with rates up to 280. I am currently on high doses of Prednisone for that, and interestingly, the eye and mouth droop are gone, and a lot of the pain. I also was positive for CV virus and EB virus but I was not tested till years later. One doctor told me I am at risk for lymphomas but no one will check my chronic hard nodes. Most doctors have never seen a case like mine. I have been seen so many times and NO ONE will listen to me that something viral is going on. Please do you have any thoughts. I was HIV negative, thank God. But I feel a million years old. I have to sleep after doing the easiest things. I never had cardiac symptoms before the herpes. Who knows what else I had as no cultures were done. What should I ask these doctors to look for? I am currently trying L-Lysine. Nothing helps the joints and rheumatologists have given up on me. They say I have an extremely overactive immune system (last IgE 6000). Did the viremia damage my immune system and it is fixable? I live near San Francisco. UCSF has been of no help. Thank you for any help you can give me.
Sincerely, R. Ch.

Dr. Tom’s Response:

Dear R. Ch.:

Rather than try to muddle your already extremely confused medical history with the opinions of a non-observer, I will offer you the following suggestion with the hope that you may be able to take it: Since you are on the west coast my suggestion is that you try to make arrangements to be seen as an outpatient at the University of Washington Medical Center in Seattle. I am not acquainted with anyone there, but they had a Dr. King Holmes who was Professor in the Department of Medicine and active in the treatment of sexually transmitted diseases of which herpes is one. I heard Dr. Holmes speak when he gave seminars in my part of the county years ago and have respect for what he has done. Perhaps if you solicit the help of one of the doctors you have already seen locally for a referral, that would assist you. Most major medical centers such as U. of W. have physician referral offices staffed by administrative personnel who are quite courteous and kind. I have no idea if Dr. Holmes, by now, might be retired or practicing under a restricted (selectively) patient load. A phone call directly to their social hygiene clinic in your own behalf might suffice also. The U. of W. center is one of the foremost facilities for this type of activity. They are engaging currently in a study of the antiviral Valtrex supplied by the Glaxo-Wellcome Co., its manufacturer. I realize you might be a long distance from Seattle. UCLA also has a center with a high reputation that you might consider as well. I wish you the best of luck.


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