Atypical Manifestation?

[Betty]

Over two years I was tested four times for HSV. The final time you ordered the WesternBlot for me. All results were negative through May 2013. Since 2011 I have had chronic itching, tingling, biting, etc. I had what appeared to be an initial outbreak four months after having an unusual three day bout with the worse sore throat of my life. I had not even had a sore throat in more than 20 years. So what appeared to be an initial outbreak was in March of 2011. I initially took Valtrex in 2011 for the initial outbreak and after 8 months I went on suppressive therapy of 500 mg. and then suppressive of 1 gram of Valtrex. I was exposed to HSV 1 a week or two before the severe sore throat episode. When I developed a genital rash with white blisters on a red base on my vagina, I went to see my doctor two days later but the blisters were gone. There was hyper redness and a white streak. She said it could not be herpes until a blood test came back that indicated I was fighting a new infection. The typing tests were negative. A year later I saw the same thing but at that time I was on suppressive therapy based on a test that showed I was fighting a recent infection. I didn’t have it swabbed because we assumed that I had herpes. But, the typing tests for HSV 1 and 2 were still negative. Since the Valtrex wasn’t working, after a few months I stopped it. When I took the WesternBlot, I had been off suppressive therapy for nearly a year. An infectious disease doc said there were other reasons for the test to show a high number for infection. I am sorry, but I can’t remember the test name. I believe several years ago, I read that you said the test should not be used for herpes testing. But I was initially diagnosed as having herpes from it. After a year and a half the OBGYN said I did not have herpes after all. A few months later, I got negative WesterBlot results from an order you placed for me. Nothing the doctors did stopped the tingling, itching, and biting. I was put on prednisone , got really fat, but little relief. I get frequent red bumps and a rash on my face. My lip was constantly split for a year. Then it cleared up. Then two weeks ago it split down the middle with a sore but no blister. The dermatologist said it was an allergic reaction. Over the time I have had for the first time ever a couple of painful canker sores in my mouth and after a dental treatment, small white bumps on my tongue. They were painful but went away in three days. I had a white pimple in my nose that the infectious disease MD refused to test. It popped a day after I saw her. It was not a typical pimple. It was like a sac with a little liquid in it. Also, the day I saw the infectious disease specialist , I had the remnants of a long vaginal cut. Thirty six hours prior it had been a bleeding cut but by the time she saw me it had healed and was a silver streak (I have black skin). So here is the rub… Out of frustration, a few days ago I dug up my left over Valtrex, I have two full bottles. I took a gram. Two hours later I felt normal for the first time since 2011. Half a day later the symptoms stared to returned so I took another gram and felt normal. The inflamed pimply skin on my lower face cleared up. It was the worse offender for itching but even the base of my eye lashes itch. I took another gram after 12 hours. I experimented yesterday with the initial 500 mg suppressive dosage yesterday morning. I had light itching that came and went but I felt almost normal. After half a day, the itching returned fiercely and I got a few bumps. I took a gram. The itching subsided and stopped. The bumps went away. Since I can keep self medicating I am at lost as what to do. I was at one time prescribed a gram a day so I am going to split the pills to take half 12 hours apart. The first Friday in October, I will see a doctor who will reorder a blood test for me. I am wondering if you know of atypical herpes were one does not show seroconversion? The infectious disease specialist did say she had patients who did not seroconvert for decades but that it was rare and as far as she was concerned, there was no proof I had herpes. She did not, though, did not discount that something unusual was happening to me. Can skin be swabbed even if there are no sores or blisters? In 2012, she told me that would need a swab for confirmation but she had yet to see anything to swab. She did not think the white pimple like thing in my nose was going to yield results. She discharged me as a patient. She was kind but she did not have proof that I was suitable for her case load. I grew up in a family of people afraid of germs. I for sure never had HSV 1 or 2. My mom worked at our school and made us stay away from kids when they had cold sores. My ex-boyfriend was a complete nut job and he intentionally tried to pass on to me what he said was genital type 1 herpes. He turned out to be mentally ill and he was a psychopath. I can’t turn back the clock and I finally recovered from the trauma. I blame myself for believing in him. My goal is to find out if I do or do not have herpes from him. I just want to feel better. I did get ill while with him.

[Betty]

I have an update. The chronic facial rash and split lip could have been caused by a preservative in a facial product. I just read that it causes rashes. I started seeing a new doctor who believes I have a herpetic type infection that may not be HSV 1 or 2 and may date back to childhood (Epstein Barr for example). The sore on my lip that my dermatologist said was an allergic reaction started as a split lip. The next day it was sort of like a canker sore. The next day it was completely gone without a mark. The next day my lip split again. Then next day my dermatologist said it was caused by an allergy. The next day it was gone. I am going to wait to get tested again through typing antibody and then post again. Until recent I had not taken Valtrex for a couple of years. Even though the Valtrex helped, I just learned it has recently been prescribed by docs for canker sores that are non-herpetic. So complicated. You may not have a comment at this point. I understand.

[Betty]

Could you not answer my posts and remove them? I will write back if necessary after my doctor orders and gets back her tests results. Thank you.

[Terri Warren]

Hi Betty,
I’m so sorry to be delayed in answering your question. I am in Turkey where I’m speaking at a medical meeting and the internet is not so great and our time is opposite but I will answer now and please accept my apologies.

Have you had any sexual contacts since we last did the western blot that could account for a new herpes infection?
I’m thinking that the test that you had that told you that you were fighting a new infection was an IgM test, is that correct? That test has so many false positives, I would say from what we say, at least half of the positives on that test never confirm with an IgG test which is the test that one would want to use diagnosing herpes.

I think you know that canker sores are not herpes, right? But lots of doctors don’t seem to know that, which is a shame.
The confusing thing here for you seems to be that when you take the Valtrex, you feel more normal than when you don’t so that’s leading you to think that you are getting better because Valtrex helps herpes. Does that sound right? But unless you have new infection, I really don’t believe that you have herpes.

Yes, there is a way to swab when you have no specific sore. If you have an area that feels like it could be an outbreak, you can swab and see if there is virus there, yes. The clinic can send you the swabs and you can return them to us after you have gathered them and we will send them to the lab and report the results to you. If this is something you want to do, we can arrange that for you.

Do let me know any additional test results that you have. And again, my apologies for the latest of my reply. I’m very sorry.

Terri

[Terri Warren]

Oh, and by the way, you can still post another question since you were unable to reach me due to my travel issues.

Terri

[Betty]

I had no sexual contact 2.5 years before I took the Western a Blot. I had not contact after the test. That even includes no kissing. I am discovering that Valtrex helps 90% of the time within an hour of taking it. Yes it helped me feel normal. But yesterday it did not help. I learned from reading that Valtrex helps with cankers sores but no one is clear as for the reason. The docs prescribing it know that cankers are not caused by HSV. I will pay again and write if I get an update. Yes it was igM and after a more than a year my doc realized she should not have used those results for diagnosing me? My new doc says she thinks I have a virus caught during childhood such as Epstein Barr. If necessary I will ask you to retest me for WB but for now, I will go through testing for HSV and other types of herpetic infections. Thank you so very much. I was not in a hurry for a response by the way. A few days would not have changed a thing. So no need to apologize. Thank you.

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