Aa
home swabbing question for Betsy
Hi. I have been getting worked up for HSV for some time now. My issues started about 5 years ago after receiving oral sex from someone who was in the healing stage of a cold sore (hsv1). I started having concerning vaginal symptoms and issues starting after that. I started getting a vaginal fissure on the right side. Then, approximately 1 year after the incident (4 years ago) a new pattern emerged—a recurrent cut or fissure that recurs on the right hand side near my rectum – always within the same area. The frequency of the recurrence has varied, with it being every few weeks for a while and recently, I went 10 months without an issue had recently had a recurrence. I have been IgG blood tested many times, and it’s always negative. However, I realize that the HSV1 blood tests aren’t perfect; in addition, I take steroids chronically for a medical condition which makes me concerned about my ability to make antibodies on antibody tests (I’ve read this can be a problem and have heard of others w/ my condition that were told by their doctors that their blood tests might not be accurate). I have had cultures done which have been negative.
In any event, I am a long-distance patient of the Westover Heights Clinic. They are terrific. I’ve done a couple of “home swab” tests with them before so I’m familiar with the process. I called recently and asked them to send me one more vial with 7 swabs. What I want to know is: can I just use these swabs for when I’m having a recurrence, rather than on a weekly basis? I don’t think weekly will give me answers. The thing is, it could take me a couple of years to collect 7 specimens of recurrences, especially if my recurrences get less and less. Will this be a problem in terms of storage and/or accuracy of results (keeping them for so long at home)? Can I just keep the vial in my fridge w/ the “used” swabs and then continue to add them as time goes on with more recurrences? I’ve tried the one at a time thing w/ them and it gets expensive. Also, I know how my brain works…if I send in a package of 7 “outbreaks” and the whole thing comes back negative, I will feel much more confident that it’s not HSV. Right now, I still am stuck on it b/c the symptoms seems like hsv and nothing else…plus the timing and the fact I can't really trust my bloodwork.
Thanks!
In any event, I am a long-distance patient of the Westover Heights Clinic. They are terrific. I’ve done a couple of “home swab” tests with them before so I’m familiar with the process. I called recently and asked them to send me one more vial with 7 swabs. What I want to know is: can I just use these swabs for when I’m having a recurrence, rather than on a weekly basis? I don’t think weekly will give me answers. The thing is, it could take me a couple of years to collect 7 specimens of recurrences, especially if my recurrences get less and less. Will this be a problem in terms of storage and/or accuracy of results (keeping them for so long at home)? Can I just keep the vial in my fridge w/ the “used” swabs and then continue to add them as time goes on with more recurrences? I’ve tried the one at a time thing w/ them and it gets expensive. Also, I know how my brain works…if I send in a package of 7 “outbreaks” and the whole thing comes back negative, I will feel much more confident that it’s not HSV. Right now, I still am stuck on it b/c the symptoms seems like hsv and nothing else…plus the timing and the fact I can't really trust my bloodwork.
Thanks!
Best Answer
Hi Betsy,
I had a brief follow up question. I recently had this recurrent perianal cut/fissure show up so I went RIGHT AWAY to the gyno and had him do a PCR culture on it. I confirmed it was definitely a PCR. He cultured the perianal fissure/cut very rigorously and for some time (which hurt) and also collected a sample from my vagina. So the 2. They both came back negative which was encouraging-- especially since I did it so fast and he did such a good job with culturing it.
I realized, however, that I showered that morning and am hoping this would not interfere with the PCR test accuracy. I used water ONLY in the area-- I did not use soap. I have used Terri's clinic to PCR swab in the past, and I read that you shouldnt shower so you get the freshest collection. I am not sure if this is more relevant for those who are looking to see their viral shedding, or even for those with a physical lesion. Essentially what I want to know is, will the washing the area with water only beforehand give me a false negative or am I overthinking this?
Thank you!
I had a brief follow up question. I recently had this recurrent perianal cut/fissure show up so I went RIGHT AWAY to the gyno and had him do a PCR culture on it. I confirmed it was definitely a PCR. He cultured the perianal fissure/cut very rigorously and for some time (which hurt) and also collected a sample from my vagina. So the 2. They both came back negative which was encouraging-- especially since I did it so fast and he did such a good job with culturing it.
I realized, however, that I showered that morning and am hoping this would not interfere with the PCR test accuracy. I used water ONLY in the area-- I did not use soap. I have used Terri's clinic to PCR swab in the past, and I read that you shouldnt shower so you get the freshest collection. I am not sure if this is more relevant for those who are looking to see their viral shedding, or even for those with a physical lesion. Essentially what I want to know is, will the washing the area with water only beforehand give me a false negative or am I overthinking this?
Thank you!
so many things can be going on in our genital area. the skin there is very sensitive. have they tried having you use topical estrogen at all to help strengthen your skin?
hi betsy,
thanks again for your reply. well, i certainly hope you didn't jinx yourself either! i get like that too.
yeah, i figured that the biopsy wouldn't be looking for herpes. that makes those results much less reassuring. but yeah, after multiple negative cultures, terri feels it must not be herpes going on, but i'm still having a hard time. have you ever seen someone repeatedly test negative on culture or pcr after culture or pcr but still have herpes? i've had a couple of pcrs done at the doctors and a couple of viral cultures and then also did a handful of home swabs. i really have tested a lot. i just have no other explanation.
i spoke with WHC and they said I would have to use all 7 swabs on the one outbreak-- i can't use them on separate outbreaks and that i'd need a new vial. i was under the impression originally that i could, but maybe i misunderstood. i'll do one more home swab and if it's negative i will definitely see if i can find a derm who specializes in vulvar issues.
thanks again for your reply. well, i certainly hope you didn't jinx yourself either! i get like that too.
yeah, i figured that the biopsy wouldn't be looking for herpes. that makes those results much less reassuring. but yeah, after multiple negative cultures, terri feels it must not be herpes going on, but i'm still having a hard time. have you ever seen someone repeatedly test negative on culture or pcr after culture or pcr but still have herpes? i've had a couple of pcrs done at the doctors and a couple of viral cultures and then also did a handful of home swabs. i really have tested a lot. i just have no other explanation.
i spoke with WHC and they said I would have to use all 7 swabs on the one outbreak-- i can't use them on separate outbreaks and that i'd need a new vial. i was under the impression originally that i could, but maybe i misunderstood. i'll do one more home swab and if it's negative i will definitely see if i can find a derm who specializes in vulvar issues.
Hi Betsy,
I have actually seen gyn's (or a midwife practioner for culture) for this issue and also a dermatologist. I didn't get very far with either. The gyn's just report out the negative results and don't really have an opinion on what else might be going on, and the dermatologist reviewed two separate biopsies i had of the "cut" -- the first which said its dermatitis and the second which essentially said irritation but in fancier words. In the notes, the second biopsy said it could be LSC (Lichen Simplex Chronicus) but that doesn't make any sense because the "cut" comes out of nowhere-- I don't get itchy or itch the area to cause the cut. In fact, there is no practice I am engaging in that is bringing them out. It just happens, which is why I always thought HSV. I don't think that biopsies "look" for HSV, but I could be wrong. I never really got an answer for that. I never understood how the 2 biopsies of the same problem came up with different things.
Anyway, I may contact a vaginitis center in philly to see if they can recommend any other derm's I could work with. They might know.
I'll also check with WHC on the vials.
I have actually seen gyn's (or a midwife practioner for culture) for this issue and also a dermatologist. I didn't get very far with either. The gyn's just report out the negative results and don't really have an opinion on what else might be going on, and the dermatologist reviewed two separate biopsies i had of the "cut" -- the first which said its dermatitis and the second which essentially said irritation but in fancier words. In the notes, the second biopsy said it could be LSC (Lichen Simplex Chronicus) but that doesn't make any sense because the "cut" comes out of nowhere-- I don't get itchy or itch the area to cause the cut. In fact, there is no practice I am engaging in that is bringing them out. It just happens, which is why I always thought HSV. I don't think that biopsies "look" for HSV, but I could be wrong. I never really got an answer for that. I never understood how the 2 biopsies of the same problem came up with different things.
Anyway, I may contact a vaginitis center in philly to see if they can recommend any other derm's I could work with. They might know.
I'll also check with WHC on the vials.
you need to call the clinic and ask them specifically. I know you can store them for I think 2 months but call them so you know for sure and aren't wasting your money and time.
have you been working with a dermatologist and/or gyn for your symptoms. sometimes they can work together or you can find a dermatologist with an interest in vulvar disease to help you get to the bottom of this.
grace
have you been working with a dermatologist and/or gyn for your symptoms. sometimes they can work together or you can find a dermatologist with an interest in vulvar disease to help you get to the bottom of this.
grace
Have an Answer?
You are reading content posted in the Herpes Community
Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
the biopsies don't really look for herpes. they sometimes will see cells associated with herpes but that's not all that accurate either. negative herpes swabs , negative igg blood testing and biopsies saying irritation probably really do mean that you don't have herpes going on. I assume you and Terri discussed this all at length by this point.
best of luck - took me over a year to find out what was going on with me when I went through chronic genital issues. even when we did figure it out, we could only try to stay on top of it all with treatment. on the bright side though I've been years now without symptoms ( shouldn't have said that - probably just jinxed myself ).