A Bump that keeps coming back :-(

[Libragirl43]

Hi,

I'm new to the forum. I found out over the summer July 2014

I have Genital HSV1. The first outbreak was awful & I was pretty sick. My doctor was less then helpful or sympathetic & basically prescribed me Valtrex the generic version & some refills if I had anymore outbreaks.

I went to an Infectious Disease specialist who basically didn't seem to think it was that big of a deal & said I'd probably not have anymore outbreaks.

Well I think I'm having my 3rd outbreak since July :-(

They have been very mild starting with prodomes, light tingling in my leg & for some reason pain behind my shoulder blade.

It's a single bump that comes up. Always a different location then the original. I almost think it's a pimple but it hurts for a few days. It never turns into an Ulcer. Just stats a bump? Is this normal?

Then when it clears up I'll get another bump in a different spot. Seems they come in a series of 2.

I take the medicine as soon as I feel it coming on but still get the single bump. I also have supressive therapy but am nervous to just stay on the 500mg once a day because of things I've read about resistance over time to anti virals & kidney problems with prolonged use. I asked my doctor if the medication was safe long term. Again she was very matter of fact. She said "It's safe" and when I asked about becoming resistant over time she said "They don't think so."

The Infectious Disease doctor said "It's possible to become resistant." She also said "Stop taking it & let's see what your body does."

Well I stop taking it after I take the initial 3 days of pill when I feel my 1 bump coming. Again this is the 3rd time I'm having an outbreak since July.

Also my partner is HSV- & I'd like to keep it that way. I'm looking for feedback about others expierance with suppresive therapy. Not sure what to do...will this ever get better????

I've heard the body needs to settle into having HSV & I'm taking Lysine & Garlic supplements daily. Along with a probiotic, fish oil, & other supplements I've read are supposed to help. There's so much info & I feel very confused & frustrated :-(

Any suggestions & experience with this would be greatly appreciated!!!

[fitgirl]

@Libragirl43 sometimes we give the doctors a bad rep because they are so straight forward and blunt. It helps to remember that they deal with this day after day and may not appreciate the emotional toll it takes on the infected. You also have to remember the infectious disease doctors are diagnosing some very severe and potentially fatal patients each day so they don't tend to have a high level of sympathy for the patient with a recurring "skin rash or pimple" they are treating the symptoms of an extremely minor virus (in the big picture). I have been lucky enough to have an amazing doctor who has shown compassion and also given me the facts. After over 15yrs with herpes I decided to take 500mg a day of valtrex to protect my h- partner. The meds have been around a really long time and while there are potential risks in taking them, the vast majority of long term research shows valtrex to be one of the safest anti viral drugs on the market. I hate taking meds if I don't have to but valtrex has been a life changer! Nearly no ob's (I use to get them every 2 to 3 months) AND I am minimizing the risk for the man I love :) the natural approach works well for a lot of people (I have done it ALL). Theoretically the longer you have the virus the better it gets but you have to see how your body reacts. Try everything :). Aside from the ob's the best argument for taking suppressive therapy is to protect your partner so consider that seriously.

[Libragirl43]

Thank you so much for your reply :-) I was wondering if I could ask a couple if questions. How long have you been on suppressive therapy & do you think you will stay on it indefinately? I appreciate your help. This is all so new to me & a bit overwhelming...

[fitgirl]

@Libragirl I know how overwhelming this can be, you have come to the right place:)

 

I have been on the suppressive therapy for just over a year and it's been fantastic for me. Not having the regular outbreaks has been life changing (sounds kind of dramatic) but before the ob's would disrupt my sexuality and general daily life enough that the inconvenience and discomfort would consume more of my days, not being able to have sex and not feeling quite like myself. Herpes only crossed my mind when I had an ob or when it was time to disclose! Now that I have disclosed to my amazing man and we are in a sexual relationship, the meds protect him but they also let me get my groove on all the time!!! I feel sexy and I feel "free".

 

I have thought about how long I will take the meds..... if he doesn't get H I will likely stay on them indefinitely. if he does get H from me I would likely use the valtrex when I felt an outbreak only (in the long term). I am really loving life without the regular ob's though! so I will continue the suppressive therapy for a long time before considering going off them.

[Libragirl43]

Thank you for responding & sharing your expierance. I think suppressive therapy might be my best route. At least until my body gets this pesky virus under control!

[WCSDancer2010]

@Libragirl43

 

Hello and Welcome!

 

So here's a few things to think about... first, @fitgirl is right that the Dr's really have things that, to THEM, are far more important to worry about. And even the "experts" don't totally agree about some things .... the biggest thing "they" are not getting isn't the physical aspect of the virus, but the emotional toll it takes, thanks to the stigma surrounding it (which is thanks to our Puritanical Forefathers and a lack of decent public education).

 

As for the antivirals, if you are concerned about taking them full time, since you have such clear prodromes and you have HSV1 (which is harder to pass on genitally - it seems that there are not a lot of documented cases of people passing it on from that region when not having an OB) you *may* want to try episodic therapy ... taking the anti-virals at the first hint of the prodromes for a week or so. I would guess that the reason you got the OB right after coming off the anti-virals is that you suddenly stopped them and the body had no time to adjust to try to combat the virus ... if you go on Supressive again and wish to come off, I suggest that you step it down over the course of a few weeks or a month ... so the body doesn't have to deal with you going "cold turkey"!

 

There are two schools of thought about going on supressive therapy early in your experience... some believe that the body doesn't get to build up the antibodies as well (and I tend to think that makes sense) and some who believe it doesn't make a difference. As with many things it's a matter of getting all the information that you can and then going from there.

 

BTW, has your partner been blood tested for HSV1? Many people (over 80%) carry the H1 virus orally (aka Cold sores... though 80% of people never have or remember having an OB) ... so the odds are he may already have the virus orally - in which case he would have the antibodies to it which would give him *some* protection too. Were you together when you were diagnosed?

 

 

[Libragirl43]

My partner had not been tested yet but he assumes he doesn't have it. We've been together for years. We had a short period of time we were having problems & were not together. I was seeing someone for a short time whom had canker sores in the past. I honestly didn't know much about HSV & assumed since he didn't have any it wasn't anything to worry about. I never had sex with him but got it through Oral sex. I was shocked to say the least. I had it typed & it came back Type A. My blood test came back negative I'm assuming since it was a new exposure.

Telling my partner was the worst part. But surprisingly were still together. It's definately been stressful & has added stress to our relationship. I have ALOT of guilt. I'm just hoping in time this will get better.

[WCSDancer2010]

Why should you feel guilty? It's not like you went out and got it intentionally ...hell...the thing is, we don't have proper information out there for people to learn about STD's .... and schools are doing a really shitty job of "educating" kids too. The system is broken as far as helping people to make properly informed decisions about sex any more ...

 

Just do what you can to prevent giving it to anyone and make sure you always disclose to a new partner ... let THEM choose their comfort with the risk factors and then ALLOW them to be responsible for their choice .... as long as you do everything you can to protect them, you have NOTHING to feel guilty for :)

[Libragirl43]

I just wish I had educated myself better about it. It amazes me how little people know. A friend of mine who is in her 30ies got it 12 years ago after having a fling. After I found out I had it I contracted HSV I confided in her. She acted like it was no big deal & said she didn't have it anymore...? I responded that it doesn't go away that the virus stays in your body. She replied, no it's gone....

Then over summer she was complaining she had cold sores in her mouth. It's like she didn't equate that her genital outbreak 12 years prior & also now having coldsores on her mouth were all HSV....

She doesn't inform partners being very flippant about it. I don't get it?? I read EVERYTHING I could get my hands on. How does someone get it & not want to know more??

 

I also work with a woman who had a small outbreak on her face under her lip. She didn't know what it was & was asking me what she should use on it. I assumed it was eczema or something at first because it didn't appear as HSV. Then a week later when I saw her I noticed she had a coldsore on her lip....didn't she realize it was HSV???

It's like we live in a bubble where there's no awareness of what HSV is??

 

My other question is how accurate are blood tests? They swabbed my actual sore & informed me it was type A but my blood test came back as

IgG 1 0.5 Negative

IgG 2. <0.2 Negative

IgM. H 1.72

This was done in Sept

My swab test done in July said simply:

Herpes Simplex Virus Type 1 Detected by Nucleic Acid Amplification

Above that reads Test Herpes Simplex PCR B

Result Positive

Flag reference Range A Not Detected

 

All my doctor said when she read that was "Oh it's Type 1, I've been seeing a lot of cases lately"

I was honestly relieved for a minute having read HSV 1 genitally doesn't come back as often. Well I'm on my 3rd outbreak in 7 months :-/

 

My other question is about the blood test. I honestly have had in the past I'm almost positive the same 1 or 2 bumps usually around my monthly but just thought it was a pimple & caused from my period. Is it possible I had this already??? My outbreak in July felt like classic first outbreak with terrible headache, sick, lots of nerve pain & classic looking little patch of blisters.

But these last two outbreaks that are milder then the one in July is somewhat similar to the bumps I've had in the past? I'm wondering how accurate are the blood tests & have I had it longer then July????

 

[WCSDancer2010]

Sorry - I was traveling and thought I had answered this:

 

You had your first OB in July and the blood test was in Sept ... so about 2ish months after exposure. That was too early for the IgG tests....and IgM tests are not considered reliable. So those blood tests only told you that you had not carried it for any length of time... and your first OB in July sounds like a classic 1st case... and only 2 OB's since then is classic HSV1 ... people with HSV2 usually have a lot more OB's in the first year than that :(

 

At this point your swab is the most accurate thing you had done and swab tests are quite accurate when they come up positive. If you want to be 100% sure it's HSV1 then I'd redo the blood test now.

 

Everything you say points to you having gotten the virus in July .... and that it's HSV1 ... a blood test now will just confirm that you only have HSV1 ...