HSV-1 or HSV-2?

[ehbeedub]

Sexual history -- 13 partners, all unprotected vaginal sex over 5 years. Rarely had oral performed on me, I performed oral on less than half of them. I had one cold sore in January 2010, after I became sexually active, & possible I had them in childhood.

06/2012: Unprotected sex with a new boyfriend, who had been tested for all STDs, including herpes. I had never been tested for herpes at this point.

7/5: Case of strep throat (diagnosed via swab). Was put on antibiotics.

7/9: Visited Planned Parenthood for routine STD screening. I'd been having some mild itching, not persistent. Nurse said it looked fine, and didn't see any indication of bacteria/yeast. Attributed it to the heat/sweat.

Mid-Late July: Itching continued, still not persistent. Accompanied by tingling along the interior edge of the labia majora & random stabs of pain in the labia minor & vestibule. Vagina is very irritated after sex in a bathtub. Saw a gynecologist 1-2 days later & she said nothing that suggested herpes, just irritation. Treated for yeast, culture later came back neg.

Early Aug: Symptoms continued & I demanded an HSV blood test. Called for results & was told "all clear". Symptoms faded over the next few days.

2/3/13: I develop a cold sore & realize I was not tested for herpes.

2/5: Call gyno who confirmed I'd had a regular STD panel. Tingling along labia major starts again, along with random itches and pain stabs.

2/15: Go into gyno for colposcopy (unrelated to these) and am also tested via blood for HSV-2 (not HSV-1, since I had the cold sore). SEARING back pain -- burning, & feeling of sunburn on lower back.

2/22: Result for HerpeSelect comes back negative for HSV- 2 (0.2).

2/24: Full-body rash. Itches, raised bumps that look blistery.

2/25: Walk-in clinic prescribed Prednisone & Azithromycin for diagnosed allergic reaction.

[tbcon'td]

[Terri Warren, RN, Adult Nurse Practitioner]

There will be a paper coming out this year indicating that temperature is not important in dealing with PCR samples.  You can send all the vials back together.  Herpes is not a known cause of nerve conduction defects, as you describe them in your arm and leg, at least not that I know of.

This will be my final post on this thread.

Terri

[ehbeedub]

Hi Terri,

Just a few more questions/updates -- if I should pay for another post at this point, please let me know, as I know I have been posting and following up for quite some time.

I have received the materials for at-home swabbing and I just wanted to clarify a couple of points.

1. How important is refrigeration during the swabbing process and when sending back to your clinic? You implied that this was not very important when I spoke to you, but the instructions state that the vials should be frozen and sent back with ice packs.

2. I should send all four weeks worth of vials, labeled with dates, back at once, correct?

And one unrelated question: I've been pursuing other causes with a neurologist, who has found documented nerve conduction defects in both my left leg and left arm, which is where the majority of the nerve pain has been manifesting. Has herpes been shown to cause this type of defect/pain in the arm? I know that it's possible in the leg, but I thought that the nerves of the arm are controlled by a higher portion of the spinal cord.

[Terri Warren, RN, Adult Nurse Practitioner]

No, you don't.  You can do it in any way that works for you.

Terri

[ehbeedub]

Hi Terri,

You called with my WB results this evening -- negative for types one and two -- but I know that I won't be able to accept that result, given that I know i at least have HSV-1, based on a history of oral cold sores. You suggested that perhaps they are not cold sores, but they really couldn't be more textbook -- sores that appear in the same spot, start as painful red bumps that rupture with a clear fluid, crust over, and fully heal in about two weeks.

I will be pursuing at home daily PCR swabbing, as my genital symptoms continue and I still have no real answers. I have a question, though -- if I were to start and then take a break, as I will be out of the country from May 3 - May 12, and then resume, would that affect the results? Do I need to swab every day for 28 days straight?

[Terri Warren, RN, Adult Nurse Practitioner]

Sounds good.

Terri

[ehbeedub]

Thanks, Terri. I just set up an appointment to speak with you next week.

[Terri Warren, RN, Adult Nurse Practitioner]

You can call our clinic to set up a phone consultation to talk about both the western blot and daily home swabbing, 503-226-6678.

Terri

[ehbeedub]

I feel convinced that I have it mostly because no one has been able to provide any other explanation. I'm still working with a neurologist, but the tests have all come back relatively normal, with a few abnormalities that don't necessarily explain my symptoms.

What is the process for doing at-home swabbing?

[Terri Warren, RN, Adult Nurse Practitioner]

I think that Drs. Hook and Handsfield are referring to the ELISA, not the western blot.  The statistics show that about 3% of people who have HSV 2 will not test positive on the ELISA traditionally used.  So honestly, I'm not certain about the numbers.  But clearly, the western blot picks up more infection, but not every single one.  We have 8 or 9 patients who have swab tested positive for HSV 2 who by antibody, western blot, test negative.  

You could do some daily home swabbing, but I think one month would be plenty.  And I"m really not clear that it would help you.  You seem to believe that you have herpes, and sometimes, regardless of test results, people still believe that they are infected.  

Terri

[ehbeedub]

Hi Terri,

I've been working to try to set up a Western Blot test, but have had a couple of snafus with going to the wrong labs. I think I've finally gotten that sorted out, but I'm wondering about your experience with people testing negative via IgG. I've read a few times where Drs. Hook and/or Handsfield have commented that 5% of people will never test positive via blood. Is that a statistic that you have seen before/believe?

Honestly, I know that I'm obsessing at this point, but now that I've followed up with a neurologist, had extensive bloodwork and MRIs done with no answers, and am having continued genital symptoms, I'm having a hard time believing that this could be anything other than herpes.

What is the process for at-home serial PCR swabbing to detect shedding? Is that something that you can set up?

[Terri Warren, RN, Adult Nurse Practitioner]

If you have a negative western blot, I think you should put your herpes worries aside.  If you are really worries about the bumps, as I said, you should go to an urgent care clinic and have them evaluated.  They have those in most every town.

I will speak with you next week.

Terri

[ehbeedub]

Hi Terri,

I was able to set up a phone appointment with you next week so that I can go ahead and get the test ordered.

Unfortunately, I won't be able to have anyone look at the bumps this week, as I will be going out of town tomorrow. I'm trying my best to reassure myself that they're just pimples or irritated hair follicles, and that I'll have a final answer in the form of the Western Blot in the coming weeks.

What is the likelihood that herpetic bumps would spring up this long after the onset of symptoms (early February)? Do bumps often appear on the buttocks first, as I've never seen bumps or lesions of any kind anywhere else?

Is the negative test the main thing upon which you are basing your opinion that I shouldn't worry? Do you see symptoms this protracted in cases at your clinic? The appearance of the bumps certainly has me worried, but another part of me is saying that they wouldn't be likely to come on this long after all of my other symptoms.

[ehbeedub]

Hi Terri,

I just spoke with someone at UW stating that a physician has to order the test. How do I go about having your clinic order it for me?

Thanks again.

[Terri Warren, RN, Adult Nurse Practitioner]

If you are concerned about these bumps, go see a provider for evaluation.  I think the more information you can have saying this isn't herpes, the better it will be for you.  To get the western blot, you can order the test kit directly from the University of Washington or our clinic can order it for you.

Terri

[ehbeedub]

Hi Terri,

Tonight I noticed four small red bumps on my buttocks. They're not very painful, but are a bit tingly. They look like pimples, but they've appeared very suddenly and I'm definitely panicked over it.

I think at this point, I need to take a Western Blot. Any information you can give me about how to go about ordering the test would be most appreciated.

[ehbeedub]

Hi Terri,

Thanks for your response. This has absolutely become an obsession for me, fueled by my own reading of other posts on this forum about people with repeat false negative testing, etc.

I'll definitely think about whether this is something that would be alleviated by a Western Blot, taking into consideration that I believed an IgG test would also soothe my fears. Obviously, the thing that would most alleviate my fears is another plausible medical explanation, which I'll continue to seek.

If I decide to take a Western Blot, I would have to order it through your clinic, correct?

[Terri Warren, RN, Adult Nurse Practitioner]

I think that if a western blot would help you relax about HSV 2, you should get it.  This is clearly on your mind, you've keep an amazing collection of diary entries, and you can't seem to let it go.

Honestly, with these symptoms alone and a negative test, I wouldn't worry much about herpes.  But what's important is not what I or your new gyno are concerned about it, it's what YOU are concerned about, right?  You need some reassurance.

Now if you get a western blot, and it is negative for HSV 2 (I wouldn't worry about HSV 1 in this situation), can you put this behind you?  There is no point in doing the test if it isn't going to reassure you.  I think you need to decide in your head that if the test is negative, you will take herpes off your list.  

Terri

[ehbeedub]

And just to clarify, throughout both of these episodes, I never saw any lesions, blisters, cuts, etc. I was/am quite anxious and have performed a LOT of mirror checks (2x a day minimum).

I also saw a new gynecologist this past Friday (3/15) and explained the entire history. She gave me an exam and prescribed antibiotics for bacterial vaginosis. I don't feel that she took my concern about herpes seriously (not surprising, considering I'm such an emotional basket case that I started crying during the pre-exam consultation about my history).

[ehbeedub]

[cont'd -- sorry so long!!]

3/1 & 3/2: Labia minora is painful (deep throbbing) after sex. Subsides after a couple of hours. Some anal irritation, doesn't look red, but is also randomly itchy. Back pain continued until around this time.

Mid-March: Back pain has subsided, but now replaced with pain in the thighs. Starts as moderate pain, not "shooting" but pangs in thighs, front and back and around the knees.

Now: The tingling in the labia major, stabs of pain in the vulva, and leg pain are all continuing.

In spite of my negative test, I can't help but worry that this is a case of HSV-2 (or possibly GHSV-1, though that seems less likely, given my history) that did not show up on the IgG blood test. I simply can't think of anything else that explains these symptoms cropping up at times when i was obviously immuno-compromised (after strep throat, when I developed a cold sore).

I have an appointment to see a neurologist about the back pain and leg pain this week. If he can't offer any answers, am I crazy to want to confirm with a Western Blot?