Possible internal outbreak

[helpmeplease]

Hi Terri,

First, I want to thank you this service as I have been following the forum for several months and know how much time goes into helping us all with our questions and concerns. We really appreciate the work you do.

The description of my situation is quite lengthy, and I apologize, but I want to be as thorough as possible. I, like many others, have researched the internet up and down trying to gain knowledge about herpes, and since it is such a tricky virus, I’m not sure where else to turn. I’ve been experiencing strange symptoms for over a year.

On July 20, 2014 I had a sexual encounter with a person who was a friend of an acquaintance that I did not know well. I engaged in unprotected intercourse and oral sex– both giving and receiving. Six days later I had what appeared to be a canker sore form on the inside of my bottom lip. It was just one sore but thought it was odd as I usually don’t get canker sores unless I have damaged the tissue, bit my lip, etc. None of that occurred before I noticed this sore. A few days later I begin to get a feeling of being unwell/nausea. The sore eventually began to heal like a canker sore would, but it was tender and painful to touch. Then, ten days after my sexual encounter, I woke up with symptoms of a yeast infection–clumpy white discharge and swollen labia. That same day I went to the doctor who visually diagnosed me with a yeast infection and prescribed diflucan. The doctor also took a swab of the yeast to be sent for testing. There were no visible sores on my labia or external parts. Due to my recent sexual activity, I asked to be tested for all STD’s. This was only my second “yeast infection” in my life, and that’s when I started research every possible symptom related to STD’s online. One day after taking diflucan, the swelling did go down, and the yeast seemed to clear up a little, but then the day after that I began my menstrual cycle. This is when I knew something was not right. The inside of my vagina was also swollen as I could feel the walls of my vagina touching the tampon– that’s never happened to me before and it lasted until my next period. I continued to have itching throughout the week and examined my lady parts with a mirror on a daily basis– nothing. During that time, I was also emailed by the doctor with the results from my tests. Negative for all STD’s (and yeast), but that’s when I realized that herpes is not included in these panels. I have been consistent with getting STD checks since I became sexually active and I’m not sure that they ever tested for herpes in the past. I have never had cold sores on my lips that I can remember. I contacted the person who I was involved with and asked him about his STD status. He said he was tested 3 months prior and was negative for all STD’s. When I mentioned I was concerned about herpes he never texted me back. Haven’t heard from him since.

Throughout the past year I have seen several doctors. At this point, I think it’s best to provide you with a timeline to document the series of events.

8/7/14- The itching persisted near the entrance of my vagina and I saw an OBGYN. I was also experiencing discharge, but this time it was runny. Like running out of me and my panties would be very damp. OBGYN tested for BV- negative, and told me my discharge was normal. Had a visual exam with a speculum, and asked if she saw any signs of blisters or sores internally. Nothing. She insisted that if were herpes that I would be experiencing pain.

Later that month I began to experience muscle twitching in my legs (thighs, calves, etc). To the point where I could watch the muscles twitch for several seconds. I was also experiencing flu like symptoms. I would wake up feeling like I had a fever some days but it would only last an hour or so. Experienced night sweats as well and had raging headaches on and off.

9/3/15- The outside of my vagina became very itchy, on the mons pubis area. There were no signs of anything in that area that indicated some kind of irritation- no recent shaving or anything. That’s why I knew something was going on inside. I was able to calm the itch with AD ointment.

9/5/14- I woke up to a weird tingling sensation inside my vagina, almost like my cervix was twitching. I felt extremely sick with a fever and made an appointment with the doctor later that day. By the time I got in to see him, my fever feeling had ceased. I explained my symptoms and he examined the exterior of my vagina. He didn’t see anything but prescribed me antibiotics for Folliculitis in case that was the culprit. I ask him if an infection inside could cause the itching, he told me no. I asked if I could be tested for herpes and he said I didn’t have herpes and denied my request.

The twitching in my extremities continued but wasn’t as pronounced as it was initially. I even noticed that after a night of drinking my eye would twitch as well, and when I was out in the sun all day. That’s never happened to me before and I am beach bum/partied hard in college. Often before I fell asleep my entire body would jolt. I’m not talking the normal twitches one feels on occasion before falling asleep; it was intense and pretty consistent.

11/5/14- I woke up to that same feeling inside my vagina, where my cervix was tingling and/or felt irritated. I went to work, but was very tired and could feel a fever coming on. I went home to rest. As I was about the fall asleep my entire body jumped. This was one of the worst cases I had experienced. Something was not right. Back to the doctor I went.

11/20/14- My pap was due at that time and I explained the muscle twitching. Doctor said everything inside looked okay and the muscle twitching was probably my nerves.

11/30/14- Got a call that I was positive for HPV and a biopsy was scheduled.

12/15/14- Biopsy performed although there was a miscommunication with the doctors/nurses. Apparently I didn’t need a biopsy because this was the first record of an abnormal pap, but because I was there I insisted the doctor look inside me. I was emotionally distraught at what was going on with my body and not getting any answers that she preformed the biopsy anyway. She said she noticed two irregular spots on my cervix and took samples of the tissue.

12/20/14- The canker sore that I had in July reappeared. In the exact same spot. This was suspicious. I decided to poke at it with a q-tip. It went away but came back an hour later. I knew this was not a canker sore. Canker sores don’t do that. I was convinced that this was a blister.

12/23/14- Got the call that the cells were benign.

That was the last time I went to the doctor for all of my symptoms. My GP thinks I’m crazy, the OBGYN’s couldn’t find anything other than the HPV. I still experience the muscle twitching/nerve sensations all over my body (mostly in my legs, but it’s sometimes in my back, hands, etc. It’s everywhere really), and it’s DAILY. The body jolts before bed don’t happen as often anymore, and are very mild. Every once in a while I feel that tingling on my cervix.

I went back to my GP this past June for a regular visit. He still thinks I’m crazy, but I asked if I could have another STD panel test as I usually get them every year and I was due. I was adamant that he include herpes this time around and he finally honored my request, although I have not been sexual active at all since July 2014. The test was IGG for 1 & 2.

I received a letter in the mail that stated I was negative for all STD’s. The canker sore hasn’t come back again.

So, here are my questions:
1. I know that there are rare cases of herpes. Does mind sound like one of those cases?
2. Do you think all of my symptoms could be an atypical case of HPV since I tested positive for that?
3. The letter stated that I was negative for all STD’s. Do you think that the doctor only considers HSV2 a STD since most of the population already has type 1? Is it possible that I tested negative for HSV2 and positive for HSV1 but because it’s not necessarily considered a STD, he did not state it was positive due my lack of genital symptoms (according to him)?
4. I’ve read that genital to genital HSV1 transmission is not common. Is it possible that the tingling I’m feeling are blisters on my cervix and that could possibly explain the spots found during my biopsy?
5. I still have not had any type of lesions outside of my vagina. Is it likely to have blisters internally only?
6. How common is muscle twitching associated with herpes and are there any documented cases where people experience this symptom daily?
7. Do you think this is herpes? I have no idea what else it could be.

Thank you again for this service, and I look forward to your response.

[Terri Warren]

My apologies for the late response – we are in a place I was told had wifi but it does not. I’m temporarily in a different place.

1. I know that there are rare cases of herpes. Does mind sound like one of those cases?

It does not. I think the yeast infection was likely just a yeast infection due to the clumpy white discharge. Herpes does not cause muscle twitching and that seems to be a dominant symptom in all of this.
2. Do you think all of my symptoms could be an atypical case of HPV since I tested positive for that?
No, HPV on the cervix is not associated with perceptible symptoms.
3. The letter stated that I was negative for all STD’s. Do you think that the doctor only considers HSV2 a STD since most of the population already has type 1? Is it possible that I tested negative for HSV2 and positive for HSV1 but because it’s not necessarily considered a STD, he did not state it was positive due my lack of genital symptoms (according to him)?
That is certainly possible, yes, and I would encourage you to call and ask that question. But even if your HSV 1 antibody test is positive, it will not tell you where your infection is, only that you have it, right, somewhere?
4. I’ve read that genital to genital HSV1 transmission is not common. Is it possible that the tingling I’m feeling are blisters on my cervix and that could possibly explain the spots found during my biopsy?
I do not think you would feel herpes symptoms on your cervix in this way, no.
5. I still have not had any type of lesions outside of my vagina. Is it likely to have blisters internally only?
It is not at all likely. While it can happen, I rarely see it
6. How common is muscle twitching associated with herpes and are there any documented cases where people experience this symptom daily?
Not at all
7. Do you think this is herpes? I have no idea what else it could be.
I do not think this is herpes, no. With 98% certainty, you don’t have HSV 2. If you have HSV 1, and a western blot could probably tell you that, we could not know where it is. You’ve had canker sores before in your mouth, so that might be what you have going on. If it comes back, I would strongly suggest that you have it swab tested using PCR to find out if that might be HSV 1. But your genital symptoms do not suggest herpes to me at this point, no.

Terri

[helpmeplease]

Hi Terri,

Thank you so much for your response. I have a few follow up questions.

I want to believe what I had going on was a yeast infection, but the tests were negative for both yeast and BV. Then, with all of the other flu like, headaches, and feverish symptoms, it was very apparent to me that I was fighting some kind of infection, but that doctors can’t tell me what. You still think it was yeast even though I tested negative for it?

Muscle twitching is my persistent symptom, for over a year now. It first began in my genital area when all of this started and was very pronounced. Now, it has moved to my entire body but has eased up as time goes on. I might be able to consider if more of a nerve sensation or crawling, but it is daily, and worse at night when I am in a relaxed state. Just last night, my upper body would jolt/jerk for no reason. There are no documented cases of these types of symptoms for herpes?

I have thought exactly what you stated if I did test positive for HSV1. I would not know if it was oral or genital, but with weird symptoms both inside my mouth and genital area both occurring at the same time (atypical of course), I don’t know if I should assume I have it in both locations. What do you think? At this point I haven’t had blisters outside of my mouth or on my genitals, and if it’s GHSV1, I likely won’t have another outbreak. I will never know.

I have had horrible lower back pain since this happened. It isn’t consistent, but it has come and gone over the past year. I chalked it up to the virus trying to emerge but never quite getting there. Not possible?

Do you think I should move on with my life and try to forget this ever happened? I’ve seen my regular doctor quite a few times, and he thinks I’m crazy because I haven’t presented with any blisters. I’ve also seen several OBGYN’s regarding this issue. I don’t want to go back again, but something weird has been going on with my body and nobody can tell me what.

Thanks again for this service. I don’t want to think that this is herpes, I just don’t know what else to think this is.

[Terri Warren]

Have you asked your doctor if your HSV 2 test was negative, specifically? If not, then you should. And if you question those results, we can certainly get a western blot for greater assurance and clarification.
I am concerned about all this muscle twitching that you describe. Not in terms of herpes AT ALL but just in general. Have you discussed this in detail with your GP?

I don’t think you have herpes, no.

Terri

[helpmeplease]

Hi Terri,

Thank you again for your reply.

I have not asked my doctor if the HSV2 results were negative. I agree with you, that I probably should, and I want to, but I know he thinks I have obsessed over this. During my last visit he implied that my concerns about the itching were most likely psychological. When I asked about the muscle twitching he asked me if I had increased my caffeine intake. I have not, but he said he did not think that was anything serious.

My fear is that I just do not want to go back because I believe something is wrong, and he clearly does not. Plus, he finally agreed to test me for herpes and the test results indicated that I did not have any STD’s. He’s really going to think I’m crazy if I ask again after the test results.

I am relieved that you do not think this is herpes, but I’m worried about ignoring the muscle twitching, which is still present. My doctor seems to think it’s no big deal, but since I experience it daily, it’s a constant reminder to me that I am not normal.

Can a biopsy of the cervix identify herpes? I read somewhere that it could, and other sources say it can not. My biopsy revealed the cells were benign after a positive HPV test, but I am still wondering what those spots could have been since I still have the occasional tingling on my cervix.

Thank you for your help and expertise. This is my last post, and hopefully your response will help me to move on. This really is a great service for everyone, and I appreciate the time you put into it.

[Terri Warren]

A biopsy of the cervix would not identify herpes, no. Herpes virus is only present intermittently and if you happened to have a biopsy when it was not active, it would be falsely negative.

I think the best way to find out if your test was negative is to go and ask for a copy of all of your lab results without being specific. If he is critical of you, I would say that you want the tests to refer back to when you get worried and it helps to be able to see them in your hand.

Terri

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