What are your thoughts? Shingles/Herpes or need more testing?

[Annwood]

My journey began in 2021 after my COVID vaccine. I developed a breakout on my right butt cheek. It was painful.I was unable to get a appointment with my PCP.I decided to go to my dermatologist. He exam the break & proceed to diagnose me with Shingles.I was given antiviral meds.I didn’t start the medication right away.I went to my GYN I wanted to be sure.She also said it was Shingles.That she has seen enough herpes breakout to tell the difference.She proceed to do a papsmear of my cervix area.Called me a few days later & said everything came back negative.January of this year I had my 2nd outbreak.This time I was able to get a appointment with my PCP. Who also diagnosed me with Shingles.He said I could not get the vaccine until it cleared up.Fast forward.I go back in June for my Hepatitis A/B.He suggested I get the Shingles vaccine.I get my first Shingles shot.Only for days later for my PCP to call me to tell me wants me to hold off on getting the vaccine.He wants to test the outbreak area if I have another one.I said to him that it was too late,I already got my 1st shingles shot. And why didn’t he swab the area when I had my 2nd outbreak in Jan 2022.He said he doesn’t think I have Herpes.He just wants to be sure.So I agreed to take a blood test.On June 6th my test comes back positive for both HSV index values of 1.10 for both.Not once did he tell me my index numbers.He then tells me I do think you have it but there is something going on.I confided in my best-friend who actually has the HSV.She suggested I go to her doctor to get a 2nd opinion.That’s when I found out what index numbers mean for herpes test results.I took my 2nd test 15 days after my 1st.My 2nd IGG test came back 1.09.If it wasn’t for my Best Friend doctor explaining to me what my index numbers are.That I fall into the false positive numbers of 1.1 to 3.5.I would not have known. She explained to me that we have proteins in our bloodstream that weigh like the herpes virus.The test can pick them up.etc

[Annwood]

She also explain that there could be something else going on that is causing these numbers. She agreed with my doctor that testing the outbreak would be best. She explained to me that we have proteins in our bloodstream that weigh like the herpes virus. Sometimes the test can pick them up which can contribute to a false positive.
I called my doctor with this information along with the information from your handbook. Honestly his whole demeanor changed. He said I educated him on something that he did not have any clue about. That he did not know the guideline for testing index has changed. That he will do better when diagnosing his patients in the future. He strongly suggest we do further testing to determine if I have the virus or if something could be going on. He definitely feeling it’s coming from a shingle outlet.
I’m going to end this by saying doctors really need to be update on changes within the testing system. Be more educated when it comes to properly diagnosing a patient. I know that this gives me hope that I’m not positive. After reading your handbook, it has truly helped me a lot. I’m going to do the Western Bolt. Something I also suggested to my doctor. And of course he had no clue.
Honestly I have no clue as to if and when I was exposed. I never cheated. I have been celibate for 5 years 2015-2020 and just started back having sexual relationship with my current Boyfriend of 2 years now. My Boyfriend says he never cheated (so he says).
The only symptoms I’ve experienced was shingles outbreak. I know my body very well. I would have known if anything was off.
Wouldn’t my IGG levels be much higher from 2021?
I would like to know your input on my story.

[Terri Warren]

I would think yes, your index values would be higher but I think there is some confusion here with the results that you report. It would be EXTREMELY unusual that you would test with the exact same value for HSV 1 and 2 and that it would be EXACTLY the cut off for positive. Are you sure about these numbers? Alsok I would advise that you get it swab tested right away if it returns, using PCR, not culture. Only 4% of people who get shingles once, get another recurrence.

Terri

• This reply was modified 9 months ago by Terri Warren.

[Annwood]

Thank You for replying. I just doubled checked my results. Yes both of my IGG index numbers are the same for both test (HSV 1&2) and results.
With both results being the same this could be why the 2nd doctor who tested feels something else could be going on. I was definitely diagnosed with shingles by all the doctors I mention in my first comment. I really have to get to the bottom of what’s going on. What do you feel my next step should be? Could it be a early exposure?

[Terri Warren]

Is there a “<" than or >” sign included with these values, ahead of the number?
The only thing to do now is to have any recurrences swab tested and wait until 12 weeks out from the first symptom and do a herpes western blot.

Terri

[Annwood]

My 1st results read
HSV 1 taken 6/6/2022
Negative <0.90
Equivocal 0.90-1.09
Positive >=1.10

HSV 2
Negative <0.90
Equivocal 0.90-1.09
Positive >=1.10

2nd test taken 6/23
HSV 1
Negative <0.90
Equivocal 0.90-1.09
Positive >1.09

HSV 2
Negative <0.90
Equivocal 0.90-1.09
Positive >1.09

Are these numbers in the false positive index range of 1.1-3.0? What are my index numbers actually reading?

[Terri Warren]

Those are simply the references ranges – if a number falls into one of these categories, your result is negative, equivocal or positive. What you aren’t listing are the numbers associated with your own personal results. There is more to this report that you aren’t seeing.

Terri

[Annwood]

Hi Terri,
I think I found what you’re referring to.

My 1st taken 6/6
HSV 1, 29.7
HSV 2, 23.00
Positive 1.10

My 2nd test taken 6/23
HSV 1, 28.6
HSV 2, 22.40
Positive 1.09

I’m not sure what these numbers mean. Do I still fall in the false positive range?

[Terri Warren]

No, I don’t think you are in the low positive range. You are quite clearly infected with both HSV 1 and HSV 2 and I would strongly suspect that what you have going on on the buttocks is an outbreak of HSV 2. Sorry to tell you this.

Terri

• This reply was modified 9 months ago by Terri Warren.

[Annwood]

Good Morning Terri,
I thank you for taking the time out to properly explain everything to me. I now have a idea as to where I stand with this virus. As I’m typing this, I’m crying out to God. He’s telling me everything will be ok. I think this is God’s way of getting me to draw closer to Him. His way of getting me to start loving ME more.
I’m just hurt that it took something like this to wake ME up!! My entire life has changed. Not for the worst but for the better. I know I’m going to have both good & bad days. I know God’s got me.!!
For these past few weeks I have been reading and researching. I came across a Herpes Advocacy group. I joined. It broke my heart to read so many peoples stories. While following this group I learned that there are a few companies who are working on a cure/vaccine for HSV 1&2. I’m sure you’re aware of Harvey Friedman and others. This was good news to read. My prayers is that something will be developed soon.
There are so many people walking around undiagnosed and diagnosed. I feel more should be done to educate/prevent/cure HSV 1&2.
I’m going to end this by saying. Thank you so much for all you are doing to educate myself and others. It’s really appreciate.

There is hope for us!! There is hope!

[Terri Warren]

You are most welcome, and I think your attitude is just right about this. The Herpes Advocacy group has worked very hard to bring education and funding source attention to herpes. I am on their board of advisors.

I’m glad we were able to sort out the testing and the symptoms even though the results may not have been what you hoped for. I think at least knowing what is going on has huge value so you can deal with it accurately.

Terri

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