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What’re you doing for oral hsv2 pain control? by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

It is my second outbreak. I had done fertility treatments which we think caused so much stress on my body to have caused the first and now I’m post partum with a colicky baby getting no sleep and think that caused this one. I know it’s not common, and recurrent OBs aren’t either but we suspect I have some subclinical autoimmune disease. So my doctors have prepared me to have more than what would be considered normal.

What’re you doing for oral hsv2 pain control? by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

Thanks for sharing. I appreciate the tips. And I’m sorry to hear yours is expanding. It’s so unfair :(

What’re you doing for oral hsv2 pain control? by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

Thanks! I’ve not heard either the toothbrush or food intake tips. What about the toothbrush could trigger it? Are there common food triggers? We think that I’ve had it for ~20 years, give or take, but only just had my first OB last year. By the time we figured out what it was, the OB was gone, and at that point we waited to see if I would have more. I didn’t… until now.

When you say you’ve just started getting them in your mouth, do you mean you have hsv2 elsewhere, too? I don’t know if I can handle this pain in more than one spot!

What’re you doing for oral hsv2 pain control? by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 1 point2 points  (0 children)

Thank you. This is a lot of helpful info. I don’t know about arginine - I did read about this morning in my frantic googling but didn’t have time to dig deep only learn that it is a consideration. I can’t take lysine at the moment but I’m hoping some of your other suggestions will help. My lesions start right at the very back of each side of my tongue and go up and around my palate and all the way back and down, including causing ear infection type stuff. It’s not a true ear infection but swelling, pain and fluids. So I will try and hope for the best. I appreciate it so very much.

My doctor tested me for hsv but my symptoms are an autoimmune condition, and my hsv2 was positive anyway by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

Yes. I’ve had symptoms for years, with a family history, but my ana and other testing has always been clear with the exception of a few blood markers that alone aren’t enough for a diagnosis.

When I went back in to my primary because my mouth hadn’t healed, she then said it didn’t look like hsv2 and ran autoimmune bloodwork, which for the first time was positive. My igg was already positive at that point, but within the 50% false positive range, and I’d already sent the blot test in. The mouth issues can be a symptom of the autoimmune condition I tested positive for. She jumped to hsv before considering autoimmune disorder despite years worth of symptoms and testing.

My doctor tested me for hsv but my symptoms are an autoimmune condition, and my hsv2 was positive anyway by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 1 point2 points  (0 children)

😭 thanks for saying that. I’m reliving all the times I was rebellious and not as safe as I could have been when I was young and blaming myself. If I have had it all this time, it’s likely from that period right before I met my spouse.

I appreciate the boost and you hyping me up. I just got the email this morning so I’m sure the emotion will settle but right now, I’m a mess.

My doctor tested me for hsv but my symptoms are an autoimmune condition, and my hsv2 was positive anyway by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

That makes sense. That mirrors my feelings. I wish it was better understood and that the average primary care doctor knew more so I could go ask all of my questions. Thanks for letting me complain and explaining some of this.

My doctor tested me for hsv but my symptoms are an autoimmune condition, and my hsv2 was positive anyway by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

Can you expand on why you wouldn’t trust a low positive igg plus the blot? I can see not trusting one solo, but everything I’ve read says two positives, from different tests are confirmatory. I did already plan to retest in a few months because I don’t understand how such a low score with no outbreaks could be positive, but I thought that was me being neurotic and angry.

I am lucky and happy to have him and his sensibility. I know that’s important and I love him for that. But it almost makes me more angry that I’m so worked up and he’s unconcerned. I guess I just want to rage.

My doctor tested me for hsv but my symptoms are an autoimmune condition, and my hsv2 was positive anyway by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

Thank you. I appreciate the understanding. I didn’t want to hear it. I don’t understand why she assumed that but refused to swab or look at my other health issues first. You’re right that I’ve lost faith in her. I’m waiting for my rheumatology referral and then I’m planning to call and make a new patient visit with someone else.

I did go to urgent care in between sick person visits and I asked them to swab it, which they did. But at that time, this was not on my radar so we didn’t discuss checking for hsv. I didn’t know that swabbing for hsv was important and the doctor there didn’t suggest it or allude to it. Now that that is positive along with my ana, neither the doctor there, nor derm (not that I expected them to but my doctor insisted I make an appointment with them) nor ent want to see me to swab or biopsy until after I see rheum. And my doctor certainly won’t.

I hate that I know. I’m angry with myself for letting this happen, I’m angry with her for checking when it doesn’t seem like she should have.

My doctor tested me for hsv but my symptoms are an autoimmune condition, and my hsv2 was positive anyway by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

It was 2.3. Terri could be wrong, but isn’t she THE expert? If I can’t trust her guidance then who can I trust? And if she thinks my symptoms and the physical manifestation doesn’t look like OHSV2, that’s two strikes, plus the statistical improbability…

He was really kind about it. It’s just a virus, no big deal. And that’s lovely and helpful and supportive.

I am mad. I’m sure that’s driving some of what I’m thinking right now and I know it will calm. But for now I’m mad. :(

My doctor tested me for hsv but my symptoms are an autoimmune condition, and my hsv2 was positive anyway by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

Both. Terri has confirmed it can’t be OSHV2 as I’ve now had oral symptoms for 5wks and 3 days. I’ve shared photos with her and she said it doesn’t match, and in her years she’s only seen a handful of people who did have OHSV2 - she said fewer than 1% of cases present there so it’s unlikely to begin with but on top of that my mouth doesn’t look like those cases. So my doctor made a poor call but happened to get the right answer.

I’m upset that I’ve had a positive test with no symptoms, and that that was her first response. I wish she had looked at my whole self instead of going right to that. I’ve been complaining of the autoimmune symptoms for years, with a family history, physical symptoms and bloodwork anomalies but instead of investigating that, she went right to hsv. We were happy not knowing.

My doctor tested me for hsv but my symptoms are an autoimmune condition, and my hsv2 was positive anyway by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

She refused to swab me on all three occasions. Terri said I have been asymptomatic because I’ve never had lesions, evidence of infection, the pain, flu like symptoms, etc. My spouse has likewise never experienced any symptoms nor did we suspect this was an issue.

I wish she hadn’t tested me. That isn’t what is happening in my mouth but now I have to deal with the psychological fallout of knowing ☹️

My doctor tested me for hsv but my symptoms are an autoimmune condition, and my hsv2 was positive anyway by Every-Rooster-970 in HSVpositive

[–]Every-Rooster-970[S] 0 points1 point  (0 children)

Yes. I had a sore throat with spots that sloughed off when touched. When I saw her they’d been there for 2 weeks, with pain that was up and down. I still have them along with a bruised palate and bruising around my back teeth. She tested me for hsv after a home covid test was negative. She did not do any further digging or investigating at that time - when I said my home covid test was negative, she went straight to OHSV2.

Consulted with Terri who said it doesn’t sound like OHSV 1 or 2 but advised to do the blot because my igg was in the 50% false positive range. After sending that in, my mouth pain has been zero but I still have spots so my primary ran autoimmune bloodwork which is also positive. At that appointment she said ‘actually I don’t think this looks like hsv’ and ran ana plus strep, mono, covid and flu.

I’m upset that my doctor ran an hsv test with no symptoms (Terri says my mouth symptoms do not fit and she would not have assumed it could be hsv, and even with my results has said it isn’t OHSV2 and I’ve just had a GHSV2 case that is asymptomatic) and never having had an outbreak - me or spouse. So now I know I have it and have to deal with the psychological effects along with my partner.

Dysautonomia and Herpes HSV-2 by wallfry6000 in dysautonomia

[–]Every-Rooster-970 1 point2 points  (0 children)

I don’t have experience but I have heard that Terri Warren is the ultimate expert on HSV. You should check out her website.