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HSV1 symptoms wont quit

In feb 2009 I had a toothache (bottom left molar) that was misdiagnosed by new dentist as TMJ. It generated a lot of pain. In March finally saw neurologist, had MRI, then was referred to Immunologist. Blood tests showed high titers of HSV-1  and coxsaccie (antibodies to HSV -2 but no genital breakout). Diagnosis was Ramsey-Hunt. In July went back to old dentist after continued pain. Abcess in tooth was discoved and removed and tooth crowned. At same time began course of Famvir 250mg daily as titers of HSV1 and coxsaccie still very high. This seemed to help for a few months. Pain was definitely better although left side of face served by facial nerve feels "tight". Concern is that I began in November  to have flareups of small herpetic vesicles around mouth, on tip of nose. For one month( Feb)  I have had sore throat due to cancker type sores in throat.(not strep- checked) I did not really have these symptoms prior  the abcess extraction in July. It seemed as the pain alleviated the sores began. The sores can exacerbate with sun or cold exposure or premenstrually or when I am getting sick with another virus. My immunologist also has me taking : Cats Claw, Cordeceps, Vit B2 and Lysine orally. I am really wondering when or if this will ever end. I was a marathon runner and very active. Dr has recommended less excercise and I def need more sleep. I am 42. Any ideas to help stop the vesicles, sore throat, tiredness and tightness in left side of face? Thanks very much. (ps. immunologist tested for hypogammaglobulinemia and for some type of pretest for lupus- both negative)
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239123 tn?1267647614
MEDICAL PROFESSIONAL
This is a difficult situation for a distant online source to give advice about.  You have seen many health care providers, and it is rare that someone without direct involvement in care can override the sort of advice you already have had.  I will limit my comments to some general observations that may help you ask questions of your providers or perhaps seek yet another consultation, e.g. from an infectious diseases specialist.

Ramsay-Hunt syndrome is a very specific set of symptoms caused by varicella zoster virus (VZV), not HSV-1.  It is a form of shingles and not related to HSV-1.  It is possible that HSV-1 could cause a similar complex of symptoms as RHS, but not likely.  Most of the symptoms you describe do not suggest HSV-1 or any other herpes infection as the cause.  In general, HSV causes symptoms only in recurrent outbreaks; it rarely if ever causes continuing symptoms for months on end.  Recurrent vesicles around the mouth or nose certainly could be herpes outbreaks, but I would need more detail to judge that problem:  frequency? exact locations for sequential outbreaks? natural course, i.e. time from onset to healing?  In any case, the lack of apparent response or prevention of both these symptoms and others by Famvir argues against herpes as the cause.

As for the diagnosis of herpes as the cause, the strength of a blood test for HSV says nothing about how active the infection is.  Once someone is infected, the blood test stays pretty much unchanged for the next several years, regardless of symptoms, treatment, or anything else.  Therefore, that your "titer" didn't decline with treatment is to be expected.  (I put titer in quotes because the standard type specific HSV antibody tests don't report titers, but ELISA ratios -- but your providers might have used the term titer nevertheless.)

MedHelp moderators are asked to avoid criticizing patients' health care providers.  But I have to wonder about an immunologist who prescribes herbal preparations like cats claw or Cordyceps; lysine for herpes is quackery or close to it; and although vitamins are often tried for neuropathic problems, they rarely work and in any case there is no reason to believe any vitamin (probably B12, not B2) would have effect on herpes.

A final comment about your HSV-2 blood test:  If indeed it is positive, you have genital herpes, whether or not you have symptoms.  This undoubtedly has nothing to do with any of your many symptoms, and it might be nothing at all, depending on the numerical result of the HSV-2 antibody test.  (You can search this forum for lots of discussions HSV-2 blood test results and their interpretation.)

In summary, based on the blood test results, it seems you indeed are infected with HSV-1.  Also based on the blood test, it is possible you have HSV-2.  However, the same about HSV-1 can be said of half the US population, and 20% have HSV-2; so simply having a positive antibody test does not necessarily mean there is any relationship to your symptoms.  Beyond these observations, I cannot solve the many unanswered questions.  But I hope these comments give you ideas for discussions with your doctors.  I do think consultation with an entirely new consultant, such as an infectious diseases specialist, might be a good way to start sorting things out.

This question is off topic for this forum, which normally is limted to STD problems.  You might not know that MedHelp now has a herpes forum.  But don't spend any more money to re-ask your questions there; I will ask the moderator, Terri Warren, to look at this reply and to make any additional suggestions she feels appropriate.  

Best wishes-- HHH, MD
Helpful - 1
239123 tn?1267647614
MEDICAL PROFESSIONAL
Ms. Warren has reviewed this thread.  She agrees with my assessment and advice and has nothing to add.

HHH, MD
Helpful - 0

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