October 18, 2014 at 6:07 pm #1530
Thank you for your great service. Looking forward to hearing your feedback.
So I’m in an interesting situation.
7 weeks ago I had my first outbreak. Although it was not the classic blister, I had the following symptoms occur
– red sore on my genitals
– 7-10 bumps appear (later confirmed as Molluscum Contagiosum via biopsy)
– EXTREME fatigue
– cough/sore throat
Since this time, I’ve been seeing doctor after doctor with no clear diagnosis except MC. The first doctor at the urgent care thought it was Herpes and gave me 10 days of Acyclovair. The red sore went away. The next doctor said I had genital warts. The next two just MC. I’ve had tests at 6 and 11 weeks post last encounter. The following were the results at 11 weeks (6 also negative).
– CBC – normal
– Blood Glucose, electrolytes, liver, kidney, thyroid – normal
– Mono and Hep B – negative
– HIV – negative
– Herpes (1&2) – negative (PCR blood test)
– Syphilis – negative
– Chlamydia – negative
– Gonorrhea – negative
– Urine analysis – normal
– Sedimentation rate – normal
Sound great? It does. So why don’t I feel great?
I’ve been experiencing still:
– Itchiness around groin
– Itchiness everywhere
– Itchy eyes
– Light Sneezing
– Run down feeling
– Mouth Cold sore, nose cold sore that starts to blister but never fully comes out
– Red sore above genitals that is painful to touch (went away in a day)
These symptoms have been hanging around the last 7 weeks, coming and going but pretty much daily I feel something. I feel almost certain it’s Herpes, as one of my last encounters I believe the person had it. I may have got it through oral sex (uncovered) and genital touching. Also covered vaginal. This happened outside my normal relationship. I haven’t had one day where I felt completely normal. I’ve managed everything very well by taking L-lysine & ibuprofen.
So here I am. It’s 13 weeks since last encounter, 7 since outbreak. Medically, my tests are all negative (11 weeks) so by my doctors, I have nothing going on according to them. I’m definitely going to get retested at 16 weeks.
Now, here’s the tough part. I’m noticing my partner has been sick lately. I can’t confirm all the symptoms but had a flu, lots of itchiness, fatigue, ear infections and chronic problems. I’m going sick with worry that I may have put them at risk. I’m going to tell them but I’m not sure when. I’m not 100% sure if I have anything but I feel like I do. If I tell them now, at 13 weeks and they get tested, is that the best course of action given I’ve been negative at 11? Or should I wait the full 16 weeks? How do I tell them that I suspect this but not sure?
Any advice would be greatly appreciated!
October 19, 2014 at 12:25 am #1533
Well, let me ask you this. You mention a herpes blood test and said PCR. PCR testing for herpes should only be used as a swab test, not a blood test. PCR looks for virus, not antibody. So I’m pretty confused. This is an essential piece of information that I need to help you. The test you do need is an IgG HSV 1 and 2 antibody test. If you can clarify, that will be helpful
October 19, 2014 at 12:38 am #1535
Sorry for that. Let me clarify, at week 11 I did a full blood work test looking for lots of different things. On my test from week 11 it says
HSV 1/2 PCR
– HSV-1 DNA Negative
– HSV-2 DNA Negative
It was done by LabCorp Laboratories.
I also forgot to add that I did a week 9 test
HSV Type 1-Specific Ab, IgG
HSV Type 2-Specific Ab, IgG
They came out negative (<0.91) for both types.
Week 6 test
They only looked for HSV-2
HSV Type 2-Specific Ab, IgG: negative (<0.91)
October 19, 2014 at 4:54 pm #1536
I’m not sure what that test is from week 11. Did you have a lesion that they swab tested? Again, PCR is only to be used for swabbing not blood tests (or at least is SHOULD be only used for swab tests – sometimes clinicians get that mixed up, unfortunately. The fact that your antibody tests have been negative is strongly suggestive that you are indeed not infected. I am a little confused about another thing – you mentioned that you had a mouth sore and a nose cold sore. Do you have a history of having cold sores on your mouth and in your nose? The antibody test misses about one of 10 HSV 1 infections. However, the good news is that if you have had a history of cold sores in your life (and the antibody test failed to pick up the HSV 1), then it is extremely unlikely that you would acquire HSV 1 genitally. And I mean extremely unlikely. So that basically leaves HSV 2. The antibody test is more sensitive for HSV 2 than HSV 1, and if you had new HSV 2, I would expect that by 9 weeks, you would probably have some developing antibody by now. Another question however: did you take more than the 10 days of antiviral therapy? Taking more could influence your antibody development. Please let me know about that.
The symptoms that you describe are very general and are NOT typical of new infection. You list things like fatigue: that can be present for a million reasons. You also list some upper respiratory symptoms, and these are not associated with herpes infections.
I think sometime people forget that when they have a sexual encounter with some one new and different, they get exposed to all sorts of new germs. These germs can cause all sorts of symptoms but when the person is a person outside of the usual sexual experience, all of these symptoms take on a new meaning, and one moves to the conclusion that they must be an STI. In your case, I seriously doubt that you have contracted herpes. However, if you are still worried at 16 weeks, I think having a herpes western blot done would be preferable to the ELISA because it feels like you don’t have complete confidence in the ELISA accuracy, and that is understandable. Our clinic can order that test for you OR you can order a test kit from the University of WAshington and have our regular health care provider draw it and send it back. If this is negative I believe that you can put the herpes worries behind you.
October 19, 2014 at 5:53 pm #1537
Wow Terri, great response. Thank you for your analysis. Very helpful.
I have not had a classic blister lesion yet (so no swap test). I have had multiple red sores. One on my penis and one in groin right above my genitals. Both have occurred during this 7 week span. The penis one came right on outbreak day. When I showed them to two different doctors they both thought it looked like Herpes. One gave me a 10 day supply of Acyclovair around week 6. No more since then to answer your question so only a ten day supply at week 6. My penis red sore went away within 2-3 days of acyclovair and never became a blister.
The other red sore came one day after I was experiencing intense tingling, run down feeling. It appeared above my genitals and it was very painful to touch. It never manifested into a blister and went away in 1 day.
If this isn’t Herpes, I wonder what these red sores are? I really want to believe the analysis that it is something upper respiratory but what about these red sores that come after these prodrome-esque symptoms? Having ongoing itchiness, tingling around my body and itchiness especially in my eyes is very strange.
I don’t understand why they did a PCR blood test. The health care provider said they would check for HSV-1 & 2, took blood and a couple days later I get the results and it says PCR negative for HSV-1 and 2.
To answer your question, I have never had a cold sore in my life. I have a history of canker sores, I used to have those all the time but never a cold sore. And I’ve had one lip cold sore and nose cold sore that’s trying to come out in a span of 7 weeks. Does GHSV-2 ever cause face cold sores?
Something to consider when thinking about my case, everything hit me like a tidal wave. One day I was feeling 100%. The next day I started to get extremely tired and develop flu like symptoms. I looked at my groin region and found:
I think this has been complicating my case. I think whatever is inside of me right now, triggered these up. The doctors zero in on this and not what is going inside my body. Is it just Molluscum? It is multiple things going on, I don’t know. I had about 6-7 bumps form around the vein line. I have confirmed via biopsy that this is Molluscum. But Molluscum doesn’t explain these other symptoms like the itching, tingling, cough, sweatiness, fatigue that has been happening.
If it isn’t Herpes, the question remains, what is going on with my health? My symptoms are almost daily. I’ll feel semi-normal then I have an episode where I start to feel tingling, start to develop cough, get really sweaty, itchiness, nose gets painful (and looks like it starts to blister). What is that? I have been managing these pretty well by taking ibuprofen and L-lysine but the fact that it’s daily has been tough.
Also, I’m noticing similar symptoms with my parter during the same time frame which is more information in this overall picture. She developed cold sore, flu, itchiness in eyes and several of the same symptoms.
With this information, what do you think? Thanks again for your excellent expertise!
October 19, 2014 at 10:23 pm #1539
I don’t know why they did a PCR as a blood test either – I am guessing that they don’t understand the application of PCR testing for herpes. Has anyone swab tested any of the sores? If not, that should be done. If you have never had a cold sore, then you are vulnerable to HSV 1 genitally. But as I read your note, it sounds like your wife gets cold sores, is that right? If she is the giver of oral sex to you then it would be possible that any genital HSV 1 infection could be from her.
I’m not sure what you mean when you say that you are getting a nose or lip sore that is coming but doesn’t blister, particularly if you have never had a cold sore on your lip.
At any rate, I think the likelihood of your symptoms being from herpes is small, but since no one has done any swab testing, hard to say for sure. I think you will need to wait until 16 weeks and do a western blot to get more certainty.
I am also assuming that you have had sex with your regular partner since this encounter and that’s why you are worried that she would get herpes from you?
Lysine, by the way, does nothing to treat herpes nor does ibuprofen, so if those are helping, it makes it less likely that it is herpes.
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October 20, 2014 at 3:38 am #1542
Thank you for the follow up. To answer your questions:
– No one swapped the sores. The only one a doctor was the initial one on the Penis and neither swapped it. Saw commented that it looks like Herpes. A biopsy was done on my Molluscum but that was it.
– Yes, my parter had cold sores. She hasn’t given oral to me so no. My other encounter I had uncovered oral so almost positive it came from that experience.
– I had a cold sore on my lip. It rose up on the top of my lip and looked like a cold sore. It didn’t stay around very long, just a few days. As regards to the sore on my nose, it has been wanting to come out over the last few weeks. It gets very red, very painful and small white blisters start to form but never fully blister wide open.
– Yes, I had sex with my regular partner after the encounter and I am worried about possible infection. What exactly is the mystery. It’s clear we are both sick with something. I have reason to believe the person I had the encounter with had it. And it seems like red sores and some of the other symptoms fall in that suspicion.
– As for Ibuprofen and L-lysine, I read online about how it eases symptoms of herpes. So far it’s been the only thing that can give me a few hours break from the symptoms.
Sorry for the long rants, I had a lot of information and just wanted to make sure you had the full picture when creating your analysis and recommendation.
One of the main things I’ve picked up is that it looks like they botched up my week 11 test. So it’s very reasonable to believe that 9 weeks, just coming off of acycolvair could have skewed my week 9 results. I guess the only thing I have to gain at this point is a) definitive information on my status and b) antivirals to hopefully help with these symptoms.
I will test again. I will ask for the western blot, I didn’t know about it and I suspect neither do my health care providers. I’ll make sure I request more questions for any follow up questions as needed. Thank you again for your advice.
October 23, 2014 at 5:18 pm #1571
Just paid for follow up questions.
My medical team is trying to dissuade me from taking Herpes test again. I continue to struggle with these daily symptoms. Here is their response:
“As an organization, we tend to steer away from blood testing for Herpes as it often causes more confusion and there are false positives. Additionally, a true positive on a blood test may be from a previous infection or history, and that would
be confusing for the patient that has a rash currently – does that make sense?”
What do you think of this? How can you not test for it, do you just let people go on and wait for a blister? I definitely want to take the Western Blot. Quest Labs offers this, no?
When thinking about my case, I wanted to say when I describe the symptoms, they hit me in waves. I’ll start to feel run down all of a sudden, followed by tingling in my feet and genital area, followed by a dry cough, itchy eyes, warm temperature, itching, and light sneezing. Like I was mentioning, I use Ibuprofen to provide short term relief of the symptoms. I also started to try Monolaurin which also seems to be providing relief.
What else could this be if it is not Herpes? The ongoing symptoms are negatively effecting my daily life. I’m trying to find treatment, it’s been 14 weeks since exposure, approaching 8 weeks since outbreak.
Thank you for your care and advice.
October 23, 2014 at 6:08 pm #1572
I do not agree with your providers, though I seriously doubt that you have genital herpes. If you have antibody, you have herpes. Period. Herpes symptoms do not come in waves, it is nothing at all like that. Nothing at all like what you describe! I don’t know what might be going on with you, but I don’t think that’s the point right now. Right now you just want to rule out herpes, right?
You cannot get the western blot through Quest, routinely. We can order through Quest on your behalf or you can contact the University of Washington to get a test kit. I described all this to you previously. But given your provider’s response, I don’t know how you would get your blood drawn to send the test kit back to UW.
You can set up an appointment with our office for a phone consultation to get the test ordered. One precaution: If you are not going to believe the antibody test, don’t take it. It’s worthless. You have so convinced yourself that you have herpes that I think it is going to be tough for you to let go of that notion. I would wait to have your blood drawn until 16 weeks have passed since the encounter, not what you are describing as an “outbreak”.
October 23, 2014 at 6:36 pm #1574
Thanks Terri. I am taking your advice regarding doing the test at 16 weeks. I thought I had Herpes, especially because of the red sores that my doctors said was herpes but I really in the end of the day, don’t truly know and just confused. I think they just gave me bad advice.
I am just a person who is not feeling well, trying to figure out what is going on with my health. To your point, I do want to rule out Herpes but the main thing I need to figure out is what I do have so I can treat it. So if it isn’t Herpes, trying to narrow down the possibilities of other ailments to get treatment, and ultimately, to get better.
I appreciate your offer about ordering the kit. I made an appointment with my provider for next week and will try to insist on getting the Western Blot which will contact you guys or UW.
Just so you know, I am very open. I will believe a 16 week test if you tell me that it is conclusive. Given what you said about PCR not being standard as a blood test, I will take your insight on that.
Just in case you are wondering, here is more info on it:
October 23, 2014 at 6:45 pm #1575
Thank you. However, I am not wondering about the PCR test – we have used it exclusively as a swab test for the past 20 years. There is so much misinformation at the website that you cite, I can’t begin to describe it all. My statement was that it should not be used as a BLOOD test, which you told me they did. It also suggests IGM testing for early infection with it totally wrong. The chances of finding herpes in the blood is extremely small ever, unless, say, a baby is overwhelmed with virus as a newborn.
Good luck with getting the western blot. I hope it puts your mind at rest or confirms that you have herpes as you suspect. At least you will know one way or the other, which is what is important so you can live clearly one way or the other. You need to be aware that sometimes the western blot comes back indeterminate. This mostly happens when people have a low positive on the ELISA test which is not the case with you, so I suspect that you will get a clear answer and I believe it will be negative.
And finally, you are getting so many conflicting answers about testing, the meaning of testing, etc. I think you should chose a source and believe it, be it me, your doctor or some online testing service. I can see why you are confused by all the differing opinions.
October 24, 2014 at 3:28 pm #1576
I woke this morning with a painful red sore. It’s only happen twice so far. The sore is barely noticeable, looks like a small light red patch, but it’s painful to touch.
My question is about swabbing. Does it have to be a full on open blister to swap it? When should one swab test?
October 24, 2014 at 3:54 pm #1577
No, you do not need a blister to do a swab (that’s with a b, not a p) test. We often swab from ulcres.The thing is, you only want a PCR swab, not a culture. And I suggest that you get it swabbed ASAP today. But before you go in, be sure the PCR is the test that they will use.
By the way, after you sent me that link, I called that organization and raised hell with the for offering this test. They acknowledged that it had been a controversial decision to offer PCR from blood and that they would once again review it. I hope they do.
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October 26, 2014 at 12:52 am #1581
Thanks Terri. Just an update.
I couldn’t get an appointment and now my red sore is gone. It was red, sore and painful to touch near an old scar I had in the region. It flared up and receded in a day. Never manifested into a blister like the rest. Back to the blood draw drawing board.
Wow, I’m surprised you actually called them. Way to give them hell! You should call my medical group while you are at it and persuade them to let me take the Western Blot 🙂 The more I learn about Herpes, the more complicated I feel an affliction this is. Just seems like it’s not always straight forward to diagnosis and doctors don’t regularly test it when they test for STDs.
I stopped taking the Monolaurin and L-Lysine. Been feeling run down again. I hope I get some sort of treatment soon, antivirals or something else. My body is taking a toll and tired of waiting to get a diagnosis of “something.”
Thanks again for the great care. I’ll let you know how the Western Blot talk goes.
November 5, 2014 at 3:42 am #1672
Just added some questions.
I have an update. I came to my doctor last week, advocating for the Western Blot. He was very hesitant. We agreed to do another round of blood tests with their place and LABCORP. This was week 14. I got the tests back on the HSV-1&2. Still negative. However, I learned I had very high rates of EBV Virus (also in the herpes family as you know). Also in my WBC,I had high Neutrophils (7.4) & Calcium, Serum (10.3).
So now I know this, I can’t find information that links EBV to my symptoms:
– Red sores on genitals that are painful to touch
– Body itching
– Sharp Nerve Pain
– Itchy eyes
Also, I asked for the specific IGG Herpes values and they say they can’t give them to me. That they just under 0.91. Regarding the Western Blot, he has been holding the line about his company’s displeasure with Herpes Blood Test. Said they prefer to test the lesion with a direct fluorescent antibody test. They also mention that it’s been tricky handling this third party test with their billing department which he says makes him uncomfortable as my tests have been negative and his company may not allow it as they strongly oppose herpes blood tests. He also was telling me it was going to be very expensive because of shipping my blood overnight in a cold, secure container.
The first two doctors who visually diagnosed it as Herpes have made it hard for me to let it go, especially when I have had those recurring red sores in my boxer short region.
I’m not sure if you deal a lot with EBV, but do my symptoms feel like EBV to you?
What percentage accuracy in your mind is an IGG Herpes Blood test at 14 weeks, 90% or more? What percentage would the Western Blot be in comparison?
Thanks again for your great service and care.
November 5, 2014 at 3:57 am #1673
Most of the US population at 45 has EBV. I think it is meaningless. I think the IgG at 14 weeks is probably 90% accurate or better. Same as western blot.
Has anyone yet swabbed the lesions that you describe having frequently? If not, they should be swab tested.
If you can become a patient of our clinic, we can order you a western blot to be drawn at a lab near you. You may not get it paid for by your insurance. Up to you, clearly, how much you want to know your status by western blot.
November 5, 2014 at 6:22 am #1674
By meaningless, you mean it doesn’t have any correlation to my symptoms?
Haven’t been swabbed tested because i haven’t been able to get an appointment in time during inflammation. Your clinic is under my insurance according to your site so hopefully I’m good there. What’s the normal turn around time for results?
November 5, 2014 at 3:17 pm #1675
We do not accept insurance for phone consultations but your insurance will likely cover your western blot. It takes about 2-3 weeks to get the results.
Most of the US population has EBV antibody at varying levels. I don’t believe it is related to your symptoms.
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- This reply was modified 6 years, 11 months ago by Terri Warren.
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