This forum is an un-mediated, patient-to-patient forum for questions and support regarding herpes issues such as: Herpes symptoms and treatments, causes, diagnosis, and herpes in men, tests, telling your spouse or partner.
Thank you very much for the advice that you have provided to me thus far with regards to my circumstance.
In your experience and knowledge, is it unlikely to experience HSV2 symptoms such as lower back/buttock/sacral pain without apparent gland enlargement or lesions? That is, if you have these symptoms (sacral pain) do you normally have the gland enlargement and lesions as well? If the lesions appear later, how much later is typical?
Would having been on the Valtrex have prevented symptoms such as the lesions but allowed free-reign to other non-lesion type symptoms, or did the Valtrex suppress the virus and therefore any associated symptoms?
I've looked through the threads and the websites that other users have been directed to and whilst they raise the subject of these symptoms, the connectivity between the different symptoms isn't clear.
I know that HSV2 symptoms are different things to different people, how I would assume that the strength of infection that would result in sacral pain etc would also typically result in gland enlargement and symptoms.
There is no set determination for all of this - no set timeline - but it is not at all typical to experience other pains/symptoms of herpes without an actual outbreak.
If the valtrex prevented the outbreak, it would have prevented the other stuff, too.
Also, from reading your old posts, you had a very low positive on the hsv2 IgG. You need to confirm that with retesting. It sounds like you are starting to assume you have hsv2 but in reality, you probably don't. I wouldn't spend a lot of time researching and wondering about something you likely don't have.
Its very helpful to us if you can keep all your posts in one thread. Grace explains more about that in the posting tips, which I would hope you've read by now. In the future, keep all of your responses to this thread. No need to start a new one.
Thank you for the kind advice, both with respect to my personal circumstances and my netiquette. Point understood on the new thread piece (not sure why I thought that a new thread was 'polite' - there's clearly no logic in spreading the story over several threads).
Yes, I am (was?) working on the assumption that I have hsv2. I figured it was easier mentally to consider the first test to be a true + and work backwards from that with retesting. In the absence of logic or reason, a little bit of knowledge can be a dangerous thing ... thank you for the 'head check'. Time to stop worrying and move forward until I can get retested.
It's coming up to almost a week now of penile pain, testicular discomfort (sense of 'heat', primarily on right side), scrotal "crawling", headaches and sacral/buttock pain (primarily left sided). The penile pain is sort of a general type of pain and it doesn't hurt at all when I urinate. There are still no apparent lesions though (I'm pleased to say).
I understand from your response that there is no set determination or timeline for the development of symptoms and that symptoms but not lesions is not typical. Even though there is no set timeline, is there a point by which time lesions at least would NORMALLY have appeared if they are going to?
For my retest next week, should I just get another HerpeSelect HSV2 IGg, or should I get a WB HSV2 test instead? If the HSV2 IGg comes in again in the low positive range, then there is a chance it could be another false positive (50% x 50% = 25%). Is there any point waiting another week?
this doesn't sound like a herpes ob. You need to see your provider today or tomorrow for further evaluation. Follow up with herpes testing at the appropriate time for peace of mind but I wouldnt' focus on herpes as the cause of your current symptoms.
I have some questions regarding HSV2 statistics and transmission risk and the usual effect of Valtrex. I've read the notes, the threads and any wesbites that I have found references to. I think I am clear but would like your expert opinions and perhaps it could clarify the matter for other forum members who have the same questions ...
HSV2 (GENITAL) STATS AND TRANSMISSION RISK
- HSV2 (genital) sheds 15 to 20% of the time, or about 7 to 10 weeks of a year
- Usually 4 to 6 recurrences per annum with a duration of about 10 days each, or all up 40 to 60 days a year or 6 to 9 weeks of a year.
- HSV2 (genital) Risk of Transmission is about 5% to 6% per annum (no protection, sex 2 to 3 times per week)
From the first two points this says to me that HSV2 sufferers normally shed shortly before, during or shortly after a recurrence, which is reported to be the case - no rocket science there. What it also says to me that if you abstain during this pre/during/post period, there is very little chance that you are shedding at other times and that therefore there is actually negligible risk of transmission. Is this logic correct?
Many of the threads in the MedHelp forum make references to 25% to 30% of men and women carrying the virus. I also found this on the MedHelp site (www.medhelp.org/HealthTopics/Herpes.html). It says that that "25% of the population aged 25-45 years old in the United States has been exposed to infection with HSV-2". I would have thought that if 25 to 30% carry the virus, then if you have had 4 partners then statistically 100% of the population in that age category would have been EXPOSED to the virus.
The topic then goes on to say that "an estimated 86 million people worldwide are thought to have genital herpes". 86 million? Is that all? Something doesn't seem right here. Are you able to clarify this data?
TYPICAL EFFECT OF VALTREX TO AN OUTBREAK
On the subject of treatment, what is the typical impact of Valtrex during an OB? I note from the WestoverHeights website (www.westoverheights.com) that it attempts to shorten the length and severity of a specific outbreak. What does the term "severity" have regard to? Do you get less of the symptoms? (eg, a couple of lesions instead of many?) Does the number of symptoms remain the same but less severe? (do you get small lesions rather than big ones?).
On the subject of my personal situation, I was going to save any further comment or questions until I have seen a provider.
I haven't yet because i'm travelling at the moment. This country is not one where you can find a quality English speaking medical provider with ease. I’m on a flight for home in a couple of days and its just going to have to wait until I get there.
I know that you and Aj thought that my symptoms don't sound like a herpes OB. Trust me - I would be very happy to believe you and irrespective of my symptoms nothing would please me more than to find out that my test result was a false positive. My symptoms continue to “tick the boxes” however …
An examination after returning to my hotel this evening has revealed about 15 to 20 small red lumps/bumps on the helmet of my penis, with several having a depressed central area that looks like could have been there was fluid beneath but not there now. They don’t look like the blisters that you see on the net.
Until my return and my visit to my medical provider, I have to deal with the pain. I can’t tell exactly where its coming from – my penis, testicles, both or the entire area. What I do know though is that the pain is extraordinary. The strongest non-prescription painkillers I have been able to buy contain 500mg of Paracetamol & 65mg of Caffeine (Codeine). They don’t even take the edge off and I’m at the maximum recommended dosage.
Are there any more suitable chemicals out there? Is ibuprofen more effective than paracetamol?
I have no further comments at all until you've went and been seen and properly diagnosed. I know that's not easy at this time for you but otherwise we are all just guessing. If you are needing this much pain medication then you need to go and be seen at a local ER or something.
Well, i've been seen. The doctor here looked at the spots and said "doesn't look typical but it could be Herpes". I asked for a second opinion. His colleague said the same thing.
I asked for a WB test to confirm the earlier Elisa. After waiting for some time, he came out of his office and said "Western Blot Herpes Tests are not done in this country". I've now had blood taken for another set of the HerpeSelect IGg tests.
He gave me 10 Valtrex tablets and said not to worry as "so many people have herpes". He gave me something called Tramadol Hydrochloride for the pain.
I've still got the red spots, perhaps now around 40 or so over the helmet of my penis and on my inner foreskin (the doctor says the edge of the foreskin inflamed and used the word "edema". I've still got general and penile specific pain. The sacral pain seems to be a little better and the headaches aren't as severe. I've been taking 2g of Valtrex per day.
I get the test results back at the end of the week (I have to ring for them as I will be back in China). I'm still not sure if I have HSV2 or not. Time (and the test results) will tell. I hope that the Tramadol works with the pain.
I would be very interested in any comments you may have on my observations relating to transmission risk and numbers infected and the effect of Valtrex on outbreak symptoms.
Does NOT sound like herpes to me at all!! You got something else going on with you there in China or where ever you are from but it isn't herpes. You need to get to a Dermatologist ASAP and have him or her look at this helmet of yours. I would be VERy surprised if this thing comes out to be positive....
I went to see a dermatologist. The spots were mostly gone (I managed to in to see him on Wednesday, about 1 week after the spots appeared) but enough there so that he said that "it isn't likely to be herpes – there are no ulcers and you haven’t seen any blisters. It could be fungal".
I got my blood tests back. HSV1 Igg >3.5 (no numerical value given by the lab (the doc said "very positive, so no values")). The HSV2 Igg was 1.4, versus 1.67 of the last result. I guess that this could be another false positive (25% chance of this (50% x 50%?)).
What I don't understand are the symptoms I experienced and the spots. The dermatologist sounded positive but the two doctors were vague. I seem to have gone through every published symptom, except for the blisters/ulcers. I was taking Valtrex and the symptoms and pain were extraordinary. I’ve stopped taking the Valtrex (et al) now the symptoms have passed.
1) Could the symptoms (penile and scrotal pain, testicular discomfort, and red lumps/bumps/splotches) be caused by something like a fungal infection or dermatitis like the dermatologist suggested?
2) Could the symptoms be “in my head” and the HSV2 Igg result be a cross-activity from the HSV1 test result? (the doctor who took the blood said that this is common)
3) If I was in fact having my first HSV2 OB, if my HSV1 Igg is so high and noting the 2g of Valtrex I was taking daily at the time, would an initial HSV2 infection normally be less severe than what I experienced and in general?
4) Could this in fact be an initial HSV1 genital infection (received multiple unprotected oral from someone who appeared to have coldsores) and my Ophthalmologist’s observation of “herpetic corneal scarring” be wrong? (I’ve never had coldsores and have never been tested for HSV1 before)
It would also be great to hear anyone’s comments on my questions above on stats, transmission risk, prevalence and effect of treatment.
Definitely confirmatory hsv2 igg blood testing at some point is needed.
You'd have to get a consult with another eye doctor to confirm the herpetic corneal scarring - that's not something we can do. Since most adults have hsv1 you very well could have that and also have hsv1 orally but not recall any obvious cold sores.
Should your genital symptoms reoccur - see a medical provider within 24-48 hours for a lesion culture and typing. I wouldn't take valtrex again until you've gotten a culture to help you confirm this to help clear this all up.
Can other things cause pain besides herpes in the genital area? definitely many bacterial, fungal and viral illnesses can infect the genital area. I am not familar enough with the common infections in the area you are in to comment on what else this could be that was going on more specifically. Even the dermatologist you saw felt it wasn't herpes related.
I guess that i'll have to wait until my travels mean i'm in a place that does WB testing and wait to see if the symptoms recur.
The doctor seemed quite firm that cross-reactivity between HSV1 and HSV2 occurs. Is this true? (i've read that up to 50% of low HSV2 results are false positive for HSV1 positive patients)
Previous HSV1 infection is known to reduce the severity of initial HSV2 infections and recurrences. If my results aren't a false positive, would this previous infection and the 2g of Valtrex I ws taking normally have significantly reduced an initial HSV2 infection?
Yes cross reactivity still occurs even though the herpeselect folks tweaked the test a few years back to try to reduce it. It's recommended that all results of less than 3.5 without a positive lesion culture are confirmed.
It's been some time since my last post. Since that time I have experienced two more episodes (working to about a 2.5 week schedule at the moment (I know, I know, this isn't typical)).
My latest episode manifested yesterday afternoon, again on the helmet of my penis. This morning I managed to get into see a dermatologist who advised that "it wouldn't be a classical presentation but it could be Herpes". He mentioned that there were also some very small bump/blisters on the inside of my foreskin. He took swabs. The results will be back in two weeks.
I understand that the transmission risk +1 year and beyond is about 5 to 6% for discordant couples.
My questions are:
1. For recent infections, is any data available on the transmission risk? I know it would be higher, but any thoughts as to how much?
2. Provided you abstain during the pre/during/post OB period, is the transmission risk less than the stated 5 to 6%? (note my post dated Aug 13, 2008 04:17AM)
3. Are the MedHelp HSV2 numbers correct? (www.medhelp.org/HealthTopics/Herpes.html). They mention "25% exposed to the virus", whereas most threads indicate "25% of adults the virus". It also mentioned that that "86 million people worldwide are thought to have Herpes". This seems extraordinarily low (86 million = about 0.15% of the global population)
Sorry Grace, a couple more questions to add to the 3 above:
4. I recall from another thread that Valtrex reduces the risk of transmission by 80 to 90% instead of the often quoted 50%. Is this difference because of the absence of any studies to support the 80/90, or are these results supported but it is felt better to be more conservative when quoting effectiveness?
5. I understand that Valtrex is supposed to reduce the severity of attacks, but what does "severity" mean? How long the attack goes for? The number of lesions? How painful it is?
The herpes handbook at www.westoverheights.com goes into rates of transmission. Also the valtrex and reduction in transmission of hsv2 in the NEJM jan 1, 2004 also can be read for free online if you register with them. There's also the herpes healthpage here on medhelp jess and I wrote - everything you wanted to know about herpes but were afraid to ask :)
I'd seen and been through that Herpes handbook. It describes shedding rates (15% to 20% for HSV2 genital) and infection rates (4% to 10%) but limits its "recent infection" comment to "asymptomatic shedding occurs more frequently during the first year of having herpes than it does subsequently". I was hoping to quantify this frequency and the transmission rate for newly acquired infections if any studies had been done.
I have several questions regarding the Herpes healthpage on MedHelp (a couple of which I refer to above), but I will wait for the results of my culture to returrn.
My culture results came back. Negative for hsv1 and hsv2. I'm happy with the result of course, but understand that there are many false negatives with culture tests.
That said, the culture was done within 24 hours of the spots appearing and several had broken (red dots) and others looked unbroken when the dermatologist did the swab. He said that he saw what he thought were blister like bumps and swabbed 'the life' out of those bumps. In these circumstances, is there a better than even chance that the culture result is accurate?
I am thinking of asking my dermatologist if Quest Labs Herpes Inhibition Assay Test #17170 as mentioned in other threads is available. WB's aren't available in this country.
Other than sitting it out and waiting for another episode and another culture test, are there any other tests I could ask for?
Unfortunately I'm not familar enough with the options for testing in your country to recommend any other blood tests. Are you going to keep following up with the dermatologist to try to figure out what is going on? Probably at this point it's time to think something other than herpes. Did the derm doc have any other possibilities?
ps THANK YOU for adding your questions to the same thread all this time - makes it easier for me to glance thru everything :)
Absolutely am going to keep following up with him. He seems to be the most learned of the physicians I have seen, with a really common sense approach - something I need.
He gave me some anti-fungal+dermatitis cream as well as Valtrex when he did the culture test. He didn't make any other suggestions after he had seen what he thought looked like many really small little blisters. I'm going to go back again this week and see him.
I used the Valtrex but not the cream because i wanted to see if Valtrex would help. The spots went away in a couple of days, but to be honest, I have no idea why. It could just be that they (whatever they are) had run their course, or I guess that the Valtrex worked?
The spots/bumps were at the same site as last time, but were on a different side of the helmet to the previous occasion. The spots on the inside of the foreskin occur at the corresponding position to where the skin rests over the spots on the helmet, as if they are getting affected by the breakout on the helmet. This is all very confusing. Have you heard of this before?
I've also had pretty constant lower spine pain for the past few weeks after having it sporadically at the start of all this (see my first post in this thread). One of the dermatologists said that this is me "tensing" up in that region. Sounds feasible, because i've been wound up like a top with this uncertainty hanging over my head.
That is one of the hardest parts with this situation - that is, not knowing for sure. I guess i could deal with it if it was hsv2, but this whole "it could be herpes, but we're not really sure" is a real mental drainer.
I went and saw my Derm doc again. He said that when I presented and had the culture done, he said that he felt that it was herpes at the time and he was a “little surprised” by the culture results.
He said that even though the culture was negative, he says that he believes it could still be herpes because:
- the lesions went away a few days after taking the valtrex (if it was fungal, he said that it wouldn't have gone away);
- the presentation looked herpetic (although not typical)
- the previous blood test results (hsv2 Igg 1.6 & 1.4, but hsv1 “off the range”);
He was surprised to hear that low positive hsv2 IGgs have been known to be false positive for hsv1+ patients.
The labs here haven't heard of herpes inhibition assay #17170 and as I’ve mentioned previously, there’s no WB available here.
We’ve done (another) IGg test. He said if this one comes back low he will refer me to another dermatologist. He said if it comes back high, then further testing isn’t necessary and that I should accept that I have it.
This was not how I expected my meeting with him to go …
I got phone call from Dermatologist telling me that the type specific IGgs are back and that the results were:
- positive for hsv1 (no suprises there)
- negative for hsv2 (a pleasant surprise there).
I had to ask him several times to make sure i heard it correctly, which I did. He said that there was no numerical value, but rather that anything below 0.9 is just stated as “negative”. He said he sent it to the government lab as it is the lab that all the labs in this country apparently "have to reference to". His words - "you don't have hsv2 after all".
I’ve assumed things before and been wrong. Should I have another test in a few months, or am I confidently able to rely on this third test result? Is there much chance of a false negative after this much time? Its been months since I had sex.
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