Herpes concerns

[Pinky_1234]

Burning sore throat started around 08/01/2019 and I thought maybe reflux although atypical for me but started protonix and no relief. Mouth began to burn and tingle and throat continued. Went to ENT and they said maybe thrush, Nystatin mouthwash started, worse 3-days later, 2nd ENT says maybe thrush just based on burning but nothing visually, switches me to a week of diflucan, symptoms persist. Within 2 weeks, I begin to have sores that pop up all over the inside of my mouth, roof of mouth, under tongue, gums and google it and it pulls up herpetic gingivostomatitis. Go back to PCP and dentist and they both say not herpes but not sure what it is. Then vaginal burning and anal burning start, like fire and some itching but never any sores. OB/GYN does internal exam and sees nothing suspicious. Triple test of yeast, trich and sething se cultured and all negative. I have diarrhea throughout this as well and no appetite, whether nerves or part of illness, unsure. Lost 10-lbs and symptoms persist. I finally go back to PCP after things persist and he says maybe burning mouth syndrome but sores aren’t associated with burning mouth syndrome. I beg for blood test. This blood test was 5-weeks into burning/symptoms. Igm and igg come back negative. My boyfriend’s is done at same time and igm comes back at 1.43 and doc says it has to be false since he is asymptomatic and always has been, send him to re-test, 2nd igm is 1.8 and he still tells him false positive and recommends no further action for either of us. I eventually see another provider who does a viral swab of a healing sore which was negative and bacterial culture of mouth which was negative. At 7.5-weeks, while on acyclovir, PCR swab is done and is negative and Igg repeated and is negative. Just did a 12-week Igg/blood draw and it was negative. Symptoms continue....slow seroconversion? One of the people that never shows on Igg blood test? One of the 30% of HSV-1 that Igg test misses? Do I do the Western Blot test?

[auntiejessi]

So how long have you been on acyclovir? That can delay seroconversion.

The IgM test is totally unreliable and shouldn't have been done on your bf. It should only be one on newborns. Even if it is reliable, I agree with the doctor that it's low enough that it is likely a false positive.

He should get an IgG type specific blood test, or a WB, as the IgG misses 30% of hsv1.

You can take a WB test - that's a different test, but the acyclovir shouldn't affect that.

Have you been on acyclovir this whole time with no results? I'd say that makes it unlikely to be herpes if it's still happening. Are you still using the mouthwash? I wonder if you're allergic to that, though that doesn't explain the genital symptoms.

The PCR swab they did - was that an oral or vaginal swab? If you had blisters/sores at that time, and the PCR was negative, that also lends itself to not being herpes.

There's something called Behcet's Disease - https://www.nhs.uk/conditions/behcets-disease/symptoms/

https://www.hopkinsvasculitis.org/types-vasculitis/behcets-disease/

Behcet's can have oral and genital sores. It can get quite serious, so it's worth ruling out as a cause.  Let us know what happens.

[Pinky_1234]

I was on acyclovir during weeks 6 & 7 of illness. He had Igg drawn along with the Igm and they were both negative. Behcet’s is at the top of the list but herpes isn’t officially ruled out yet. I am going crazy over here. I plan to do the Western Blot I think but just wanted to be able to breathe a little. I thought the 12-week draw would be more conclusive.

[Pinky_1234]

He had igm and igg drawn twice within a week of each other and igm was positive both times and igg negative both times

[auntiejessi]

If you were only on acyclovir for a couple of weeks, it shouldn't affect your test, but it could be too early for you to test positive.

I'm so sorry you're in this waiting period. Even with Behcet's, there's no easy test to diagnose you.

I'm sorry - I misspoke about your bf's tests - I had originally typed that he needed IgG testing, then went back and realized he had them, then didn't fully correct my statement. To rule out hsv1, he should get a WB, since the IgG misses 30% of hsv1 infections. Ordinarily, it doesn't matter so much, but since you are suffering so much, it would go a long way in determining if you need to focus on herpes or Behcet's, or something else.

Is there a possibility of him having a new infection of either hsv1 or 2? If there is, his IgG may not yet show positive.

I wish I had easier answers for you.

[Pinky_1234]

We had been together 15-months and he said he hasn’t been with anyone else and I believe him. I haven’t been with anyone else. I reached out to his last partner whom is a friend of mine and she said she got tested and hasn’t had any symptoms or tested positive for anything.  I ended up having the Western Blot ordered and will have it drawn this week. I am so scared but need answers. If we have been together this long and my symptoms popped up 12-months in? He is completely asymptomatic. I don’t know what to think or do.  

[auntiejessi]

If you've been together for 15 months, and you believe he hasn't been with anyone else (and you'd know far more than we would), then his test for hsv2 would be accurate. Even if he had hsv1, it's possible that you just got infected. Herpes isn't infectious all the time, and if this is herpes for you, everything about it screams new infection, not an older infection with new symptoms.

If you had been infected when you first started seeing him, you'd have antibodies by now, and your test would be positive, and those antibodies would help keep your symptoms in check.

Also, if your symptoms started at the beginning of August, you'd most likely have antibodies by now that should be helping to control your symptoms.

I think you should get the WB because you need to rule herpes out or in. It's important. Whatever the results, we're here. I know you're scared - I would be, too, but you'll get through this. :)

[AnnieBrooke]

How is your diet and what about your vitamin and mineral levels? Did any of it change in August, such as, you started eating something new regularly, or more of something that might irritate your system? It sounds like something that might respond to the anti-inflammatory aspects of a diet that includes a lot of healthy stuff and removes unhealthy stuff. I always take extra vitamin C and E and choline when I get gum boils, for example, but I also have to stop eating certain foods.

[Pinky_1234]

They have checked all my labs and only thing abnormal was my Vitamin D which I am on week 4 of the prescription strength and still keep having these recurrences

[AnnieBrooke]

It's interesting that I was reading your post about mouth sores this week -- I got a gum boil and then another (unusual for me, I usually get them one at a time) and they weren't getting any better. Don't know if it was the power of suggestion or what, but there they were. I took vitamin C and lysine (sold as L-Lysine, if that makes a difference) and all was well in a day and a half, they're all almost gone. When I get a gum boil, it's almost always diet (either something I eat that gives them to me, or something that I need, that I have neglected to eat. My response to the lysine suggests it was in this case).

Anyway, your discussion with the other poster sounds more intent on a different and more serious diagnosis, but if you haven't tried lysine, you might, just because it couldn't hurt.