Advice please

[Confusedblossom]

Hi Terri

First apologies for all the posts and making it difficult for you to administer my account.

So all my swabs came back from ur clinic negative.

I have decided to focus on any genital symptoms instead of oral for the mosy part as it’s the genital ones that bother me most and everyone has oral hsv1 anyway. I know I am hsv2 negative and trying to focus on hsv1 in genital area so I can feel “safe” to have sex

So,
1) bumps appearing on bum were negative. I do feel most time pain or itchiness in the area before they come. How likely are these bumps h even w a negative pcr swab. I know I vigorously seabbed them but they are dry raised red bumps w no fluid. How likely can pcr swabs detect genetic material on dry skin?

2) issue I seem to be having on left side of vagina internally w fluid filled bumps were negative and drs saying are likely not harmful cysts w bacteria.
So it’s great I know this is not h now. I do have burning inside vagina before they come.

3) so today lower back hurt/ache (never had that before) had some itchiness and bumps appeared again. It’s really hardr to believe these are not h. I guess a biopsy would be the best option. Maybe I will swab internally when bumps come to see if bumps are just kind of a red herring.

4) I get no external lesions at all. I may have them internally

5). I think I am in acceptance mode. I do have this orally and genitally and some of these symptoms are h related an some not. I really can’t decipher what is what unless I decide to go broke. It’s really hard when the rule of having h is not to have sex wih prodome or ob and I can’t promise my partner that which gives me anxiety. I can’t go without sex forever.

6) Is there a strategy I should follow that you recommend to help alleviate some anxiety?
Should I stay the course and use the last 3 swabs I have to swab weird stuff that happens to me like bumps and pains?

I know my partner is a big boy and assumes risk (haven’t had sex in a year bc of all this….this is a new partner) ..I just want to know I am doing everything that’s available to me and very thing I can to protect him.

7) What do u recommend? What’s the strategy for me go forward?

8) What do u recommend to people who have hsv1 via swab and have issues orally and genitally but can’t get a positive swab in either place?

• This topic was modified 8 years, 8 months ago by Confusedblossom.

[Terri Warren]

1. If these test PCR negative, then I think it is highly unlikely they are herpetic.
2. good!
3. You can swab internally if you like – you may pick up something
4.OK
5. I’m not at all clear why you are accepting that you have it both places but if that’s what you want to do to move on, then that’s fine. I don’t think discussing it with me anymore will change that belief as I don’t know where you have it either
6. Yes, I think you should use the last three swabs
7. You have done everything you can already. You’re right – he has a right to choose his own future
8. Just disclose this info to partners and let the chips fall where they may – you don’t know where you are infected Period Keep an eye out for lesions and swab something when you feel it. There is really nothing else you can do!

Terri

[Confusedblossom]

OK….based on your advice:

1) I should swab internally when I feel these symptoms as anything externally has swabbed negative unless something new looking comes up externally

2) I should not accept I have hsv1 genitally unless I have a positive swab, is that correct?

I have to figure out some way to move forward as it’s been over a year. I have gone to vulvar clinics, dermatologists, neurologists, gynecologists, general practitioners….last one will be in a few months at a speciality chronic pain clinic that specializes in this specific area. Being in Canada, at times there is a long wait for referrals.

3) In your opinion, when I feel these pains which I call prodome i.e. hip joint pain that radiates or lower back pain or vulvar or anal burning….I will swab internally in vaginal and anal area. Do I swab while there is pain? Do I swab an hour/a day after it subsides as to try to catch an internal lesion? When would be the best time.

I only have 3 swabs left.

Thank you kindly

[Terri Warren]

1. Correct
2. Correct.
3. You can swab when you have these pains yes. If they are negative, you can feel reassured that this is likely not being cause by herpes. You should swab at the peak of symptoms.

You do need to move forward and that means just moving forward and leaving this behind and living fully. There are no guarantees here yet I think that is your goal to be absolutely certain. You can’t be! So since you can’t, you can either live fully with the small risk that you might have genital HSV 1 or you can be stuck here for a long time. The call is truly yours.

Terri

[Confusedblossom]

Yes moving on is necessary.

How I do it emotionally is a whole other story. Easiest of course for those who are asymptomatic but with varying degrees of pain or burning or itchiness and no other diagnosis really makes it quite difficult emotionally as well as quite difficult to tell if sthng is a prodome or not and since timing is everything with hsv1, really I in a no win situation.

Any hope for better drugs or therapeutic vaccine on horizon?

Thank you kindly for your help

• This reply was modified 8 years, 8 months ago by Confusedblossom.

[Terri Warren]

We are in clinical trials for three different treatment vaccines right now. I am hopeful that one of them will move on to FDA approval and combined with antiviral medicines, it could really help those with herpes.

Terri

[Confusedblossom]

Hi Terri

1) I have sent in 4 more pcr swabs to your Clinic that were received today 1 oral swab and 3 to swab bumps and vagina

2) my bumps are super small with no fluid. Maybe double a pin head size like tiny mosquito bites. Usually I have one or two likely 2 inches apart. Pain in te general area precedes them kind of like a nerve pain or muscular pain for a few hours or days. I feel they are h but no viral culture swab will pick it up and I feel they are too small for genetic material to be detected by an aggressive rubbing on them. I also feel that a biopsy would likely yield negative results bc of size. I want to believe the negative result but the prodome bothers me and these bumps that appear are raised and pinkish and small. What do you think?

3) I would like some new swabs as I have been focusing on bumps and instead I would like to focus on swabbing internally when bumps appear. If the bumps are herpetic anyone touching them in a sexual situation I don’t think they would be too contagious anyway I just want to make sure internally I am not shedding. Sound good?

4) I have decided to become sexually active and have had sex with a partner of unknown status. I would like to try acyclovir but not sure of suppressive dosage or what to do when ob appears. Can you please advise. Also does acyclovir tax the liver or the kidney? I have heard conflicting things.

I am moving on with my life and disclosing hsv1 in both places as I feel with these prodomes and burning and bumps it gives me a clear conscious with my partner. I need to know still however what is hsv1 and what isn’t in terms of symptoms. I doubt I shed much asymptomatically as it is hsv1 and it tends to shed less and I have so many sensations down there I can’t imagine wih none I am still shedding lol.

5)

[Confusedblossom]

For clarification, Ok some are size of pin head and some are the biggest like a normal mosquito bite. Mostly it’s Inbetween those sizes.

I am just stumped. I know this is h I can’t prove it and it’s driving me crazy sometimes. I am fine between ob but ten when one comes I look at the bump on my back or near belly button and sometimes I don’t bother swabbing it’s too small!!! I guess it’s good.

Anyway just venting.

[Terri Warren]

Good you are moving on. Suppressive therapy is fine, no problem. And you can more swabs if you wish for whatever you believe may be HSV.
I must say I”m surprised you are having sex with people of unknown status. I would much prefer that you get your partners tested! You could end up with HSV 2 as well as HSV 1, you know, right?

Terri

[Confusedblossom]

1) What is the dosage for acyclovir for suppressive therapy
2). What is the dosage for an outbreak
3). I would appreciate maybe 8 swabs this time please so when bumps come I can swab the bumps plus my vagina an anus separately to see if I am shedding. Thank you. Should I call reception and let them know?
4) we had sex once w protection but yes he is doing a blood test. I have known him for 20 years and he just
got out of a monogamous 15 year marriage. i guess he could be asymptomatic but yes i know i could get hsv2 and i am petrified based on how my body reacted to hsv1. We will have results in 2 weeks before we have sex again.
5) I believe this disseminated and I know you don’t think it’s possible but what would your recommendations be if that was the case? Any suppression meds change? Or anything else? I get burning pain in arm then a bump appears same spot all the time. Burning pain tummy then bump on belly button. Itchiness lower back to mid back and bumps appear there. Behind my ears the same. I think my nerves are just an amazing conduit. Lucky me!!!!
6) what size do bumps have to be to swab pcr positive. If they are too small could there be too little genetic material? Would a biopsy of them be better and with a biopsy and pcr swab does it matter within 48 hours swabbing still?

Thank u kindly

[Terri Warren]

1. 400 mg twice a day
2. 400 mg three times a day
3. Yes, you can call the front desk and ask them for the swabs. They will ask me for approval and I will give it.
4. OK, good that he got tested.
5. I don’t have a suggestion here because I have, in 33 years of practice, never have known someone who had disseminated infection. I seriously do not believe that person is you.
6. herpes bumps are normally not so small. A biopsy would be less good, not better.

Terri

[Confusedblossom]

Well I got off famvir for 5 days waiting for an alcylivir (sp?) prescription. In the meantime got sick w cold had my period. Pain in trunk and back and more bumps. This time quite a few. Pain lasted 4 days and bumps appeared like little mosquito bites 3 an inch apart. Then 3 near by belly button barely breaking thru the skin.

No vials (waiting for them to be shipped from ur clinic again). These bumps are h even though swabbing negative. I can’t see how they r not. I am very frustrated. Next time I will swab internally when bumps appear to see if I am shedding. I did have bone ache pain in vaginal area.

I can’t figure out why I am having so many ob. It’s really depressing.

Uploading photo. It’s blurry. The scars are where I had other ones.

[Terri Warren]

You’re right, these are very blurry and I really can’t tell too much but they don’t look herpetic to me – too spread out, though I could of course be wrong.

If you are going to do this swabbing, you really need to stay off antivirals. The antivirals will definitely interfere with the results of the swabs. Can you do that?

The most obvious reason for the negative results is that they aren’t herpes but if you were taking Famvir during this time when you took the swabs, it could be an error.

Terri

[Confusedblossom]

Wasnt taking famvir w first batch.

Second batch I was as I wanted to be sexually active. It’s a really tricky balance. I have been waiting to hae sex for over a year.

The bumps don’t look any different than when I was off them.

I guess it could make a difference.

I don’t know what to do

[Terri Warren]

well, if they all look the same and you weren’t on Valtrex for the first batch of swabs then it sounds like they were not influenced by taking Valtrex. But if you really want to know, you need to be off meds before swabbing for at least 5 days – then you can resume.

Terri

[Confusedblossom]

I will get off for next round

Can you please explain why taking antivirals will affect swab results?

I a lesion/sore/bump appears that means antivirals aren’t totally suppressing and wouldn’t there be virus present?

[Confusedblossom]

Pain on left side all week now this appears. I don’t know if it’s a coincidence.

I ran out of your pcr swabs. Can you send me like a bunch at a time like 10 or so. I need to get all this stuff swabbed. I seem to have bumps and rashes at different places and some recur but I get them all over. Maybe h maybe eczema. I am going crazy.

I left a message with reception to send me lots of swabs. She will call me tomorrow.

I really feel like a total freak. Hsv1 is supposed to be mild and non recurring. On acyclivir now to see of things would cool down. Seems like things getting worse. Famvir seems to work better but on what I don’t know. I still don’t know what my ob is but I have lots of bumps and rashes going on.

[Terri Warren]

If this is herpes, the antiviral therapy may limit the amount of virus present enough that the PCR could be negative but a lesion still forms. For the first time, I am a little concerned about the photos that you sent. There appears to be an actual blister there.

In terms of the swabs, I will be in the office tomorrow about 9. Please ask Sandra who will be answering the phone in the morning to send you 10 herpes swab PCR kits, per my permission. She will check with me and I’ll approve it. Are you off therapy now?

Terri

[Confusedblossom]

Today was my last day for acyclivir. I had been using it one week and a half and did nothing. If anything my symptoms were worse.

No blister. I think it’s just the pic maybe lighting. Still tiny red bumps with some red irritated areas. I put steroid cream on it and seemed to have gotten better. Red irritated area gone and tiny bumps still there.

I will pay for FedEx to ship it to me quicker just so I have on hand. It gives me some anxiety waiting.

Thank you for approving 10. I need to decipher where and if I am shedding when these bumps appear. If the bumps swab negative and a swab of my genitals are negative at same time I can hve some peace.

[Terri Warren]

Did you get what you needed from the office?

Terri

[Confusedblossom]

Yes thank you

[Terri Warren]

Good. If you have more questions, how about you start a new post? I’m once again losing track of what’s been paid, not, etc. Thanks.

Terri

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