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Subject: "Diagnosed GHSV1 almost 2 months ago, constant outbreaks" Archived thread - Read only
 
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anna96
Member since Jul-24-11
8 posts
Jul-24-11, 04:21 AM (CDST)
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"Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
 
   I was diagnosed (with a culture) with G HSV-1 about seven weeks ago, and while I have had a very difficult time with it, emotionally, I was comforted by the statistics that GHSV-1 doesn't recur often. But I have had symptoms, either prodome or blisters, almost constantly. I read on another board that the first OB can have a stuttering effect for 3 to 6 weeks, but yesterday i had two new blisters, and this morning I have two more, and I'm nearing 8 weeks with this. There have been maybe 6 days without symptoms of the last 50.

The doctor who diagnosed me was not very informed (she said i could have caught it from a doorknob), but I've done a lot of reading on my own, both here and on the ashastd boards.

My problem is this: my doctor gave me a prescription for suppressive valtrex to take once a day "on the off chance" that i had symptoms again. They started as soon as i left! So I am abroad for two months, and I can't take the OB dose (2 a day) the whole time, or i will run out. I can't get more over here.

I am going to reunite with my boyfriend on a vacation when i get back to the states in 2 weeks, and no matter what happens now, I desperately want to be symptom free by then. He is negative and this is a new relationship, and while he has been totally understanding about this so far... you know. I've been away for two months. I want to be healthy when i see him.

So, do i treat the OBs with the suppressive dose as long as i can, or should i reserve the suppressive dose for the week before i return? And what else can i be doing to keep these at bay? I've heard green tea and lysine, but lysine will be difficult to get where i am.


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  Subject     Author     Message Date     ID  
  RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks graceadmin Jul-24-11 1
     RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks anna96 Jul-24-11 2
     RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks anna96 Jul-25-11 3
     RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks anna96 Jul-26-11 4
         RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks muffinadmin Jul-26-11 5
             RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks anna96 Jul-30-11 8
                 RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks muffinadmin Jul-31-11 9
                     RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks anna96 Aug-04-11 10
                         RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks muffinadmin Aug-04-11 11
                             RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks anna96 Aug-05-11 12
                                 RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks muffinadmin Aug-05-11 13
     RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks painInfect Jul-28-11 6
         RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks Lenoreadmin Jul-28-11 7
             RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks anna96 Oct-09-11 20
                 RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks graceadmin Oct-11-11 21
     RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks mac75 Aug-16-11 14
         RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks muffinadmin Aug-16-11 15
             RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks mac75 Aug-16-11 16
         RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks Lenoreadmin Aug-17-11 19
  RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks mommy6199 Aug-17-11 17
     RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks graceadmin Aug-17-11 18

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graceadmin
Charter Member
13280 posts
Jul-24-11, 07:37 AM (CDST)
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1. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #0
 
it's difficult to be seen when out of the country but it's in your best interest to do so. you need to get tested for yeast and bacterial infections vaginally to see if either of them are going on ( odds are they are ). It's not likely this is all hsv1 related and until you find out what else is going on and deal with that, you aren't going to get relief

lysine doesn't do much at all for herpes and we never recommend it.

nothing in green tea has been shown to help either.

grace

The first step in stopping the perceived stigma about genital herpes - is to stop believing in it yourself


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anna96
Member since Jul-24-11
8 posts
Jul-24-11, 10:03 AM (CDST)
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2. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #1
 
   Hi Grace,
It will be difficult to be seen, but I will try. But I am not having any of my typical yeast infection symptoms-- not that "kind" of itching, and no discharge at all. Just the tingling and then the blisters.

I know "odds are" this is something else, but I have a pretty crappy immune system (i've had a cold and little sleep for three weeks, so those factors might have given the virus a leg up), and I take anti-inflammatories for arthritis (but not immunosuppressants). So i'm not surprised that my body isn't coping as well as other people's, just really frustrated.


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anna96
Member since Jul-24-11
8 posts
Jul-25-11, 05:28 AM (CDST)
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3. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #1
 
   I'm going to the clinic in two hours, and I plan to ask for these things:
- testing for yeast
- testing for BV
- a refill on my valtrex so i can take 2 500mg tablets every day
- prescription for Famvir, which might work better for me

Does this sound right? I hope they will listen to me. I'm so scared that i won't be able to get this under control.


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anna96
Member since Jul-24-11
8 posts
Jul-26-11, 08:36 AM (CDST)
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4. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #1
 
   The doctor at the clinic gave me a prescription for Macmiror for what he thought looked like a bacterial infection, so i;ll be taking that for 8 days. But he is testing me for other things too-- yeast, chlamydia, and bv. I won;t find out until next week but i'm taking the macmiror.

He gave me extra valtrex so i can stay on the OB dose, but he didn;t want to give me an rx for famvir. I hope this works.

He also said he thought my bumps/blisters don't look like herpes. I had it cultured, so I'm as sure as i can be. It seems we all have different kinds of blisters, because the first doctor told me i didn't have anything to worry about, just a skin irritation. A week later, a nurse practitioner cultured them and they came back positive.

2 months in... praying for relief......


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muffinadmin
Member since Sep-10-04
6141 posts
Jul-26-11, 08:09 PM (CDST)
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5. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #4
 
75% of visual diagnoses are wrong.

Even if this is a bacterial infection it wouldn't mean you don't have herpes...

I'm very excited that you were not only able to get tested at the clinic so easily but that you also got valtrex and you're outside the US! I hope yo are able to get some relief soon.


muffin ~ GHSV1 since 1986

Anyone who has sex is at risk for herpes.

muffin through the years...


Paragraphs are a wonderful thing.


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anna96
Member since Jul-24-11
8 posts
Jul-30-11, 03:47 PM (CDST)
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8. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #5
 
   5 days into the antibiotics and i got a new bump today-- with no prodrome. It is so hard to keep hope alive in week 9.

I might try to get famvir started, because the timing of this is urgent for me. I really need to have healthy bits in 10 days!

Do other HSV1 positive people have trouble identifying OBs? Sometimes i'm not totally sure what bumps are okay and what bumps aren't, since most of mine have not looked "typical" or been in clusters. They were visually dismissed by 2 docs and only cultured by a third. But vulvas have bumps that are normal, and sometimes i can't tell the difference. Every little thing freaks me out-- so filled with dread about my own body.


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muffinadmin
Member since Sep-10-04
6141 posts
Jul-31-11, 06:32 PM (CDST)
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9. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #8
 
I don't think of ob's as bumps. They tend to look more like fluid filled blisters. Or if it has burst already, more like a crater.

Typically if it looks like a whitehead pimple, it is a pimple or a blocked follicle.

If the bump looks like regular skin with a bump under it, then I would think it is some other type of clogged pore.

muffin ~ GHSV1 since 1986

Anyone who has sex is at risk for herpes.

muffin through the years...


Paragraphs are a wonderful thing.


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anna96
Member since Jul-24-11
8 posts
Aug-04-11, 04:32 PM (CDST)
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10. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #9
 
   This is all so bizarre and so demoralizing. The new doctor looked at me said that even though I have herpes, the two sores i am thinking of as OB are not herpes sores. I know most visual diagnoses are wrong, but she said this knowing that a)i was cultured for it and b) i had two pink sores on my labia majora and c)i feel totally itchy but am negative for BV. She said one was clearly an ingrown hair (and she was right-- i popped it when i came home, sprayed the area with bactine, and applied neosporin and this morning it was healing). But the second one is more like a boil and painful, kinda hard under the surface.

None of the weird bumps I have had in the last 6 weeks or so look like the original outbreak-- but i have never had all these bumps before! What the heck is going on?

The doctor made a good point that I am knew to this virus, and of course i'm going to think every thing is an OB, but that chances are better that I'm paranoid than that the valtrex isn't working. What do you all think? Am I just losing my mind?


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muffinadmin
Member since Sep-10-04
6141 posts
Aug-04-11, 06:51 PM (CDST)
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11. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #10
 
Did you get your culture results yet?

Did the doctor give you anything for the boil?

Not losing your mind but we have noticed a lot of people tend to blame a lot of things on herpes when it is something else.

muffin ~ GHSV1 since 1986

Anyone who has sex is at risk for herpes.

muffin through the years...


Paragraphs are a wonderful thing.


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anna96
Member since Jul-24-11
8 posts
Aug-05-11, 02:03 AM (CDST)
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12. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #11
 
   I haven't had anything cultured since the initial outbreak (which came back pos for hsv-1). She only gave me topical antibiotics, but i don't know what those will do-- even if it is a boil. I never got these before, so it seems like it must be herpetic. But i don't know how to decide-- my boyfriend is negative (probably-- he only had a blood test) and don't want to misidentify a bump as harmless/ not harmless.


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muffinadmin
Member since Sep-10-04
6141 posts
Aug-05-11, 02:37 AM (CDST)
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13. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #12
 
The "kinda hard" bump description does not sound like herpes. Herpes bumps are fluid filled. Use the topical antibiotic she gave you.

If you are uncertain about what it is, then avoid sexual contact until it heals.

muffin ~ GHSV1 since 1986

Anyone who has sex is at risk for herpes.

muffin through the years...


Paragraphs are a wonderful thing.


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painInfect
Member since Jul-28-11
3 posts
Jul-28-11, 01:54 PM (CDST)
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6. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #1
 
   I was told by a doctor that Lysine is an amino acid that the virus does not like. You say the opposite. What should I believe?


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Lenoreadmin
Member since Oct-22-04
4255 posts
Jul-28-11, 03:45 PM (CDST)
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7. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #6
 
   Believe Grace. Ask the doctor if he/she is familiar with evidence based practice.


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anna96
Member since Jul-24-11
8 posts
Oct-09-11, 10:08 PM (CDST)
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20. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #7
 
   Grace and everyone, thank you-- and Grace, as frustrated and crazy feeling as i was when i originally posted these messages, your INSISTENCE that i keep checking on this, and skepticism that it was all the hsv, was on the money. What i was experiencing was a cycle of ingrown hairs, pimples and blocked follicles. The itchiness and discomfort i experienced nonstop was--

are you ready?

Laundry detergent.

I was in a foreign country where i didn't speak the language, and i believe the the laundry detergent was irritating my more delicate parts. As soon as i came back, the itchiness stopped, and a doctor finally succeeded in convincing me to not interpret bumps and spots as HSV that bore no resemblance to the only bumps that were ever cultured. If it doesn't look like a duck, walk like a duck, or quack like a duck, why would i insist it is a duck?

i'm taking one valtrex a day for a year for suppression, to protect my partner, even though i know chances are good he gave it to me (we know even the best blood tests miss 1 in 10). I still get upset when i think about it, but now I don't think it about it as much-- once or twice a day (as opposed to almost constantly), and i hope that will continue to improve as well. I still hate it, but it did get better-- and it was never as bad, even half as bad, as it felt emotionally.


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graceadmin
Charter Member
13280 posts
Oct-11-11, 08:50 AM (CDST)
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21. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #20
 
Well I'm glad you listened I'm also glad you got answers and hopefully relief now! From the been there, done that files, anytime your genital area is constantly reminding you that it's there sucks!!!

grace

The first step in stopping the perceived stigma about genital herpes - is to stop believing in it yourself


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mac75
Member since Aug-16-11
2 posts
Aug-16-11, 02:45 PM (CDST)
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14. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #1
 
   Hi Grace - first want to say thank you. I've seen a number of your posts and am grateful for the advice you've given. I believe my situation is similar to anna96's. I was diagnosed with GHSV1 5 months ago in March and have not been symptom-free or pain-free since. I have been on Acyclovir or Valacyclovir continuously, currently on Acyclovir 400mg 2x/day. I also take 2000 mg of Lysine/day, 2000 mg of Ester C/day and 2 tsp of monolaurin/day.

Visually my lesions do not look like any pictures I've seen on the internet. They are very large and have spread into one another to cover almost my entire vaginal area. They have been this large and looked this way since just a few days after I first felt symptoms. However, they don't shed anymore, they're just large scabs that won't heal. I'm wondering if you have ever heard of a home remedy made from crushed tablets of Tylenol PM? I have been using this almost the entire time because it has been the ONLY remedy that makes the pain bearable. I have seen 2 ob's and a dermatologist and they've had me try countless other pain relievers, but nothing has worked. Am I interferring with the healing process and that's why I am 5 months in with no sign of relief? And if I am, what else can I do to bear the pain? Without the tylenol paste, the pain becomes so excrutiating that extreme thoughts of hopelessness enter my mind Any advice is appreciated.

Thank you-


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muffinadmin
Member since Sep-10-04
6141 posts
Aug-16-11, 05:47 PM (CDST)
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15. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #14
 
Hi Mac,

Have they cultured or pcr tested the sores?

muffin ~ GHSV1 since 1986

Anyone who has sex is at risk for herpes.

muffin through the years...


Paragraphs are a wonderful thing.


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mac75
Member since Aug-16-11
2 posts
Aug-16-11, 09:38 PM (CDST)
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16. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #15
 
   I have been swab tested and cultured on several occassions, as well as had 2 biopsies and nothing other than HSV1 has resulted. What is the pcr test? I forgot to say I also saw an infectious disease specialist and he was baffled too. Even during times that I don't believe I am experiencing an active ob, the pain is still excrutiating and there is quite a bit of swelling.


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Lenoreadmin
Member since Oct-22-04
4255 posts
Aug-17-11, 10:49 PM (CDST)
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19. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #14
 
   How were you diagnosed? It's not normal for herpes to last continuously for 5 months.

I haven't heard of using tylenol pm as a paste. I wonder if it's the benadryl that is making you feel better? I'm also wondering if this is maybe irritating your skin and causing more of a problem. What other types of pain medication did you try?

If you weren't diagnosed with a culture, it's possible that you have oral HSV1 since something like 60% of us are going to test positive for that even if we have never had a cold sore.


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mommy6199
Member since Jul-4-11
7 posts
Aug-17-11, 02:08 AM (CDST)
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17. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #0
 
   for the pain, i recommend getting a prescription of lidocaine. i had to use a mix of two different prescriptions of it due to the areas where my ob occured. I had it around my vaginal opening, and slightly inwards (ouch!!!) and also around the anus, where i'm still dealing with the lasting affects of that. they now feel like fissures, but each day (and each bowel movement) there is progress.... but the only way to make it bearable at all to even just put underwear was the prescription lidocaine. I would definitely call a dr and ask them if that is a possibility.

also, i would take a warm sitz bath, and that would help with the swelling of it all. it also was very painful for me to urinate, so i took up urinating in the sitz bath... it was way better than trying ot psych yourself up to go to the bathroom... i was able to fully empty my bladder when i urinated into water! it took away the acidity of the urine, and was pain free!

I also feel like i have tingling constantly in my groin and surrounding areas, and dont know if that is saying that i'm going to have an outbreak or if its just me being super sensitive to my body now? I have 2 gorgeous children (age 2 and the other is 6 months) so i cant afford to be down and out with another ob. any suggestions to keep an outbreak free life? i picked up the book by Terri Warren... it really is a good book. it helped me cope and get over this dumb virus in a few days. I also picked up a book that tells us what foods cure what, and there is a part in there about Herpes. so has anybody ever tried any food modifications?


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graceadmin
Charter Member
13280 posts
Aug-17-11, 01:09 PM (CDST)
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18. "RE: Diagnosed GHSV1 almost 2 months ago, constant outbreaks"
In response to message #17
 
I'd be seen by a dermatologist every time you have new symptoms. odds are this is more than herpes going on from the description of your symptoms.

grace

The first step in stopping the perceived stigma about genital herpes - is to stop believing in it yourself


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