July 18, 2022 at 5:43 pm #78151
Hi Terri and thank you for doing this.
I was diagnosed with genital HSV1 in June 2018 via swab. Was given Valtrex for the outbreak (left side and had a lot of nerve pain and skin sensitivity down that leg too). About a month or two later I was getting a lot of discomfort orally on the right side inside my lower lip. Doctor gave me Valtrex to take daily and helped the symptoms immediately (so pretty sure I have HSV1 orally from the same encounter).
A few months later I started dating someone else and had another outbreak in September 2018. Very similar symptoms but on the right side and only one sore on the midline. I of course thought an HSV1 recurrence or new HSV2 infection. I also ended up with an E. Coli UTI not long after. Swab was negative for both HSV1 and 2.
Two years passed with occasional prodromal type symptoms but no outbreaks to my knowledge. Then around September 2020, I had a really bad period of symptoms followed by an outbreak–right side but underneath in the perineum. Swab was negative for both 1 and 2 again.
Since then, I don’t think I’ve had more than a day or two outbreak free. Every day I have uncomfortable symptoms and am usually in an outbreak or starting a new one. This has been almost two years. During this time I’ve used antivirals almost consistently and understand this can effect testing. All PCR swabs and IGG tests are negative for BOTH even though I know I have HSV1 with the initial outbreak positive PCR. My doctor has tested for many other things via a swab I brought home and took back to their office. Treated for some bacterial things but nothing has improved by symptoms.
Could this be something other than HSV1 or 2? And if so, any ideas as to what? How long would I need to be off antivirals in order to not effect: 1. PCR testing 2. IGG 3. Western Blot?
If HSV, will my body every figure this out? Two years is a long time to constantly deal with this and I frankly don’t know what else to do at this point.
July 29, 2022 at 3:53 am #78198
HSV 1 rarely recurs in the genital area and I think your symptoms are likely due to something else, particularly since the swab swab test was negative. The PCR swab should pick up HSV if it is there. There is not point in doing any more antibody testing, no, since you were positive by swab test.
I don’t know what is going on here, but it seems to me that HSV 1 is a very unlikely cause of these persistent symptoms.
July 29, 2022 at 6:10 pm #78217
I understand that this would be rare for hsv1, but I feel strongly it’s either hsv1 or hsv2 that keeps recurring. The fact my blood work is clear for both even with a positive swab of hsv1 before leads me to believe the antivirals are effecting my test results.
Can you answer my previous question about how long I need to be off antivirals to be sure of an accurate: 1. PCR swab 2. IGG 3. Western Blot?
Also, if it is herpes and acyclovir type treatments are not working, would an IV treatment like Cidofovir possibly work? Or would it just clear the current outbreak only for another to soon start?
I’m really open to all options and just beyond frustrated at this point.
July 31, 2022 at 4:11 am #78241
The IgG test for HSV 1 misses 30% of infections. So that could be happening.
Or if you’ve taken daily antivirals since first diagnosed with HSV 1, that could impact your results.
If you are off antivirals for a week, the PCR should be accurate. I would recommend 12 weeks off for the IgG and western blot.
Honestly, I cannot imagine someone giving you IV Cidofovir for a genital HSV 1 infection. But I guess you could consult with an ID doc about this.
In my opinion, it would be best to do the PCR testing first to see what is going on here.
July 31, 2022 at 9:08 am #78244
Do you feel cidofovir would be worth it? Or likely just result in another outbreak after treatment?
What is your opinion on topicals on the area along with oral antivirals for prevention?
Finally, how accurate is the IGG for hsv2 even if I’ve mostly been on antivirals the past 4 years? Worried this may be hsv2, not 1, recurring even though no test has ever confirmed it.
I know this is my last question opportunity, so wanted to get everything asked. Thank you again for your time.
August 6, 2022 at 7:37 am #78280
I think the first thing that I would do if I were your clinician would be to do several swab tests on the suspected outbreaks and prove that they are all HSV 1. Then if they are, I would order acyclovir resistance testing to see if the strain of virus is resistant.
Topicals are not useful in treating recurrent disease
If you have taken antivirals for four years, everyday, it’s hard to know the impact of the meds on the virus.
I think you are way ahead of what any competent provider would do first when asking about cidofovir.
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