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suppressive therapy question~


Margaux

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I was just diagnosed with herpes in the beginning of November. My body is still not making antibodies as I tested negative by blood test today. This was my second test. I know some people don't show antibodies until three or more months after exposure, so it is normal to still show a negative reading. I have been on Valtrex since the day I was diagnosed and had planned to continue taking it continuously to avoid outbreaks.My question is this: Is my taking of antivirals on a daily basis a bad thing ? Should I allow my body to make the antibodies and then consider going back on the meds?

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Are you in a relationship with a person who does not have this? If so, taking daily meds can reduce the risk of transmission by 50%.

However, if you are not seeing someone, and your outbreaks are not that severe then you might want to stop taking them and let your body get used to dealing with the virus with out the crutch of taking meds.

Good luck!

JB

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Hi JB, I am married. My husband has HSV genitally and orally. He was diagnosed 25 years ago and does not know if he has type I, II or both. I have managed to escape it for 14 years. Me getting this virus was an eventuality. I still do not know if I have type I or II. In a way, it does not matter as we will not change our sex life because of this. I would like to know the type I have and need to see this diagnosis in writing even though it is quite clear what I have. I didn't know if going off the meds would make things very bad for me as I have been on them for 6 or 7 weeks and have felt soooo sick (flu-ish) the whole time with the exception of about three days. I also didn't know if the meds were impeding my body from making the antibodies. Thanks for your response.

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it is possible for suppressive therapy started immediately to delay IGG test seroconversion (not sure how much they can significantly affect the entire immune response though, which is more complex than just the IGG titres). but that may well be a contributing factor to your still negative test results. or if it's HSV1, it may not be showing up, or ever show up, bc the test is not as sensitive to some HSV1 strains as to HSV2.

but i don't see a downside to trying a break from the antivirals -- you may end up having mild, infrequent or no recurrences so you may not even require them and are just taking them needlessly at this point since there is noone for you to protect from transmission. especially since the symptoms you describe may be side effects of the medication.

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Thanks very much, death2h. I finished the RX I had and am gonna try having my immune system flying solo and see what happens. I have read that the blood test can miss 1/10 cases of hsv1. Thanks again.

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  • 2 weeks later...

well, if you say you found out 4 months later and it was not by AB test then it was culture or PCR. which presumably was typed so you know you have that type. but if you were not tested for ABs then you don't know whether you have the other type too...

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  • 2 months later...
i havent been tested for antibodies. i contracted herpes in august... and found out in december. why would i need to be tested for antibodies?

Because you can't diagnose herpes by symptoms alone. You could have HPV, which sets you up for cervical cancer. If you have antibodies, then the virus has been in your body. A PCR or culture will tell you if you have virus in your system, but these are only positive if you are shedding virus or have active virus (not latent). Thus, without a definitive test, everything is just speculation.

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    • sgt98
      Hey @WilsoInAus ok thank you, I will do my best to move on and stop trawling forums haha. 
    • WilsoInAus
      Hey @sgt98 but there is no feasible infection or outbreak to suppress and antivirals do not suppress an initial outbreak in any event 
    • sgt98
      Thanks @WilsoInAus I understand apologies for this but the only other thing I am worried about is that I did take a course of Famvir on day 1 as I felt like I was having an outbreak of cold sores and am worried that has suppressed the initial outbreak genitally 
    • WilsoInAus
      Hi @sgt98 it is not feasible to obtain a HSV-2 infection from receiving oral sex - only HSV-1 is feasible but you've already got that and immunity from any further infection with HSV-1. You do not need any further tests for HSV. You're feeling regret, try to forgive yourself and calm down, let the rational take over. You know the answer here and it won't be long until you believe it too.
    • WilsoInAus
      Hi @NerdP423 and welcome to the website. You raise a lot of points and I think the best way to address your concerns is add some comments at each key point. I've copied your note again below and added these comments in square brackets. I appreciate any insight (even speculation) as to what has been going on with me. I'm a 37y/o M. I last was intimate with a new partner on 2/11/2022, and a few days later started having a huge amount of discomfort in my face. [The first thing that happens though is that herpes causes lesions or at least some skin based disruption. Other symptoms are then related to the actions of the immune system responding to the virus. Without lesions, it is highly questionable that the ailment is related to herpes, yet testing is useful if you have concerns as you have done so.] About a month after that [herpes causes issues within days, if the first 'symptoms' are a month later - its extremely unlikely they are related to herpes], significant discomfort downstairs, however every test I have ever taken for HSV 1 and 2 has been negative. Here are the details: Face: Previously, some significant tingling and itching on the right side of my mouth, lips and chin (still there, but milder) [herpes does not cause general tingling and itching, it can cause a reasonably concentrated feeling of itch/throb from which a herpes lesion appears within hours]. Occasional hot flashes near my right eye, cheek and ear [herpes does not do this, it may be a immune response to something, or stress]. Sometimes it will feel like the skin is crawling on the right side of my face [herpes does not cause a general crawling sensation]. Never seen anything that looked like a traditional cold sore [that's extremely telling, even people with associated atypical symptoms will have experienced herpes lesions]. Occasionally, the left side of my face will have a momentary feeling of skin crawling, but it's so mild that I am not really worried about it. Downstairs: Thankfully, most of these are now milder than they were before. Occasional momentary pinch of pain at the base of my genitals. [herpes does not cause a general pinch feeling.] Aching pain in my boxer area (groin, leg folds) [nor this] Occasional feeling of cold in my boxer area, butt, or lower back. ( also in my shins and occasionally even my arms) [nor this] On 4/30/2022, I had been in discomfort for almost two months. I scratched an itch, noticed it hurt, and then checked - I did have an open ulcer down there. Took myself to the ER to get swabbed, came back negative. [If this was a PCR then this will be very conclusive.] Practitioner said it may come back negative because it was already open. However the lab report noted that it definitely didn't look like what you'd expect a typical first herpes outbreak to look like [how would the lab know??]. All blood tests negative so far. I had two western blots, the second one was nine months after exposure. [Two negative Westernblots!!! Many that's real convincing]. All other swabs also negative. I went to urgent care, because I know the timeliness of when the Swab is taken matters. One time, a swab was not done, because practitioner said it was folliculitis and wouldn't swab it (It was at my belt line). [Belt line is highly unlikely to relate to herpes.]   A blood test revealed I had low-ish B12 (technically in range, but at the very low end, especially for a man of my size). I had a series of B12 injections, and I am taking a B12 supplement. I am not taking any lysine or arginine at the moment. I was taking the Arganine to see if I could induce an outbreak. [This is irrelevant, there is no known linkage between herpes outbreaks and arginine/lysine intake - its a myth - and B12 infers nothing.] I think what I am asking is - has anyone here ever repeatedly tested negative over and over again over long period of time, before getting a definitive answer, be a positive test, or something else? [The answer to this is: Extremely few people with a HSV-1 infection and even more rarely HSV-2 test repeatedly negative on Westernblot and actually carry the virus. Of the cases that I know of that had delayed detection by a swab and negative blood tests in the meantime (and that's only 3-4 cases), they had some form of lesions within days of infection but did not obtain a swab for various reasons and then obtained a positive swab of a subsequent lesion with the record being 11 months later. A couple of the cases did have some 'background' symptoms they thought might be related to herpes but that isn't ascertained and some did not have any unusual symptoms at all apart from the lesions. Hence as you did not have lesions around your mouth or lips within days of the last sexual encounter as is exceptionally common for a primary oral HSV-1 infection, that pretty much rules out herpes orally as it is. The fact that you had no genital symptoms for a month also rules out genital herpes. I am not aware of anyone at all who has genuinely gone on to test positive by swab or blood in your specific circumstances. There are hundreds if not more than a thousand experiences on this website alone that are similar to yours that are truly negative for herpes I'm one of them!]  
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