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Back & Buttock pain not subsiding
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Back & Buttock pain not subsiding

I was diagnosed 2 months ago with HSV1 & HSV2 after exposure 7 1/2 months ago. I have been experiencing outbreaks every two weeks and back/buttock pain almost constant with only a few days of relief here and there. After diagnosis, I was put on Valtrex which did supress OBs somewhat, but my back pain increased and pain in arthritic knees escalated to severe. When I discontinued Valtrex, knee pain subsided but back pain is still nagging. I have tried pain patches, tylenol, acupuncture (six weeks) and chinese herbs, along with heat therapy but nothing has really knocked down the pain.

Questions: Would one of the other virus suppressants give me relief? How can I find a doctor in our area who specializes in treating the virus and would it be a neurologist, infectious disease specialist, or ???. (My family doctor is a great guy but I wonder how much experience he has had in this area other than internet research.) Any ideas on managing this pain? Could this be something other than the virus causing back pain (I have not ever had any noticeable back pain before this)?

My quality of life at this time is poor and I welcome any suggestions...Thank you....
10 Comments Post a Comment
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101028_tn?1348750963
I'm going to assume you had blood testing done for herpes? if so, I'll gladly take a look at your test results if you want to post them here - e.g. hsv1 igg 6.9 and hsv2 igg 3.2 or whatever they are. that way we can be sure you had proper testing and see if you need additional confirmatory testing done or not. did you have any obvious lesions cultured to confirm hsv2 genitally?

what dose of valtrex were you on?

indeed this is probably something non-herpes related causing your pain so seeing a neurologist if your regular provider is stumped is a good idea. Herpes related back pain would be with ob's only and not constant like this.

grace
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Avatar_m_tn
Hi Grace, Thanks for your prompt answer!

My results from test taken the end of April are HSV 1 IGG >5.00 and HSV 2 IGG >5.00 (both Herpeselect done at a Quest Laboratory). I have not had any swab testing done, as there has only been one lesion shortly after my unprotected exposure the middle of last November. No others to test...

I started taking 1000 mg of Valtrex also at the end of April as suppressive therapy.

My wife, to whom I have been married for over 29 years with a monogamous relationship (with the exception of last November's incident), went to her doctor in the middle of June. He suggested HIV (to which I tested negative) and HSV testing, even though we had no IC since before last fall. She was negative for HIV, her HSV 1 IGG was 5.00.

Could we have both been positive for HSV2 all these years and not realized it? In retrospect, there have been a few symptoms here and there that could be herpes but nothing severe enough to visit doctor.

If that is the case, what is going on with me and these outbreaks now? Could I have contracted HSV 1 in Nov.? Could I have had it for almost 30 years and only now do outbreaks occur? What else could I have contracted last Nov. (std's) that would cause the lower back/buttock pain and some urinary issues? During my OBs (which happen about every two weeks), I have the urinary issues, some tingling beforehand, and also problems with clogged ears. The back/buttock pain is virtually constant and doesn't seem to follow the OBs.

Thank you SO much for helping to clarify this situation and point me in the right direction!
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Avatar_m_tn
Ooops, I meant to type that my wife's HSV1 IGG was <0.90....
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101028_tn?1348750963
was your wife tested for hsv2?

if you had had hsv2 prior to november, you weren't likely to have contracted hsv1 genitally. Having hsv2 provides significant protection against contracting hsv1 ( but not vice versa unfortunately ).  also hsv1 genitally wouldn't be causing non-stop issues like this either.

time for the neurologist to see what is going on. really no reason to think that herpes is causing your pains at all.
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Avatar_m_tn
Yes, I should have added that my wife's results for HSV2 were IGG >5.00....

Thank you so much, I am going to GP tomorrow to discuss all options and will explore a consult with neurologist.
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101028_tn?1348750963
no way to tell at this point if one of you had hsv2 prior to your marriage and transmitted it to the other at one point or if you contracted it in november and then also transmitted it to your wife. if you both weren't tested for herpes prior to this, no way to know at this point.

best of luck at the doctor's and I hope you soon get some answers and some relief!
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Avatar_m_tn
Hi Grace,

My GP has ordered more tests, including urine and back xray. He also put me on Famvir instead of Valtrex.

Two more questions for you:

1. If indeed my symptoms are HSV2-related, can we be assured through my wife's positive test (>5.00) that we need not worry about transmission - or can there be false positives? If there's a chance she DOES NOT have it, I certainly don't want to take a chance...

2. More urine tests ordered - I have read conflicting advice on not urinating for a certain length of time (some are one hour, some are four hours) before sample is collected. What are your thoughts??

Thank you again for your help!
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101028_tn?1348750963
the things they will be testing you for in your urine , it won't  matter when you last urinated prior to them.

transmission of hsv2 isn't an issue if you both have it.
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Avatar_f_tn
Hello, I was diagnosed with HSV1 last December 2013. It was an unusual breakout as it attacked  my entire chin but not really my lips or inside my mouth. At first because it looked like it, the doctor thought it was impetigo and after the treatment for that did nothing, I was put on Valacyclovir and bacitracin ointment which only helped the problem to about 80% better but the issue never really entirely went away. I am again taking 1000mg 3x per day Valacyclovir for 7 days and the redness and spots on my chin are only somewhat better than they have been. It seems that the generic Valacyclovir is not doing its full job and am wondering if Valtrex name brand should be my next option or if there might be something else going on? I have read that often the generic brand has a much lesser efficacy than the name brand, which is understandable. I am very concerned as I seem to not be able to get rid of this from my skin. The infectious diseases specialist said that my symptoms would be gone within a month but it's been about three and I cannot seem to get better beyond this point. The OB on my chin looks like very mild acne, nothing at all like herpes. There is some redness and swelling and some scar tissue has been left from the initial outbreak. Is there something else I should be doing?
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Avatar_f_tn
sorry, I a new to this community. I posted this question in a new post so please answer there.
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