Possible Mis-diagnosis?

[Confused22]

Hi Nurse Warren,

First I’d like to thank you for your research on this topic. I’ve been very disappointed in the medical treatment I’ve received so far regarding my concerns, and I’ve found everything you’ve written to be very informative and comforting.

My question is in regards to conflicting diagnoses I have received from multiple doctors. Here is the history of my problem:

In early May 2014 I had unprotected sex with someone I had been seeing for a couple of months. I am a rugby player, so very active, and about a week after my encounter I began feeling short of breath at practice, which is not normal for me. This lasted for a couple of days, at which point I called my doctor to schedule an appointment assuming I had a chest cold. I was not able to get in until a week later, at which point I had become very ill, so much so that I had to miss 3 days of work, and slept most of those days. When I finally got to the doctor on 6/6/14 my symptoms were at their worst. I had a fever, muscle aches, swollen lymph nodes in my neck, an extremely sore throat with white splotches (to the point that even drinking water hurt), exhaustion, and the most recent symptom was a lesion on my vagina that looked like a canker sore. My PCP examined my throat and vagina, listened to my breathing and diagnosed me with pneumonia and Herpes on the spot. He never tested me for mono or strep throat, neither of which have I ever had but my symptoms also seemed to align with. He did not swab my lesion, but he ordered a blood test, IgM, and said it was too soon to order an IgG test. Everything came back negative but he said it may have been to early to detect in bloodwork.

After my symptoms disappeared I returned in late July for follow up blood work, with no recurrences of any of my symptoms.
My results came back positive with this response:

“Lab results indicate exposure (igM antibodies) not yet with longer term antibodies IgG antibodies
Lab results, as reported by X-Cell Labs, on 7/30/14:
HSV 1 IgG, Type Specific <0.91
HSV 2 IgG, Type Specific <0.91
HSV IgM 1/II Combination 1.56”

I was overall very unhappy with how my doctor treated me, not even willing to discuss Herpes with me, just giving me his diagnosis and rushing me out the door.

Since then I have been abstinent, have had no more symptoms/outbreaks and have done a lot of research on Herpes as well as other diseases that may be confused with it.

More recently, I contacted my OBGYN to get a second opinion. She ordered follow up bloodwork which I had on 11/17, turns out they did the wrong test but I tested negative for HIV, which my PCP also tested me for, so at 5 months that would be a conclusive result right?) After learning they did the wrong test I was retested on 12/6 exactly 6 months after first visiting my PCP with symptoms. My doctor did not send the results, but did say I was negative for both HSV type I and II.

My question is, at 6 months is that a conclusive result? Or is there a possibility of a false negative still? I’m trying to remain positive and assume that this far along if my bloodwork shows negative that I am in the clear, but it’s difficult to when that leaves me with no explanation of why I became so ill in the first place, let alone had a vaginal ulcer.

In my research I came across articles where people are sometimes misdiagnosed as having Herpes when actually they have EBV or CMV, and I feel like my symptoms align with those diseases. I discussed this with my GYN also, and she brushed it off and just said she’d never heard of that. I’m very frustrated that no one is able to answer my questions or even direct me towards someone or a test that might be able to. I’m hoping you can help me!

Thanks, and sorry for writing a novel, I wanted to be sure to include all the details so you have an accurate background.

[Terri Warren]

I believe that you should trust the negative tests that you have had! Only the IgM had any reactivity as I read it and that is notoriously inaccurate, so ignore that and only pay attention to the IgG which is negative, right? The IgM test never should have been ordered in the first place. Trust the IgG! It is the most accurate of the two tests.

Please let me know if you have other questions

Terri

[Confused22]

Yes, the IgG have been negative every time.

My next question would be, have you had any other cases where those symptoms could have been caused by CMV or EBV or even something else? And, if so, is it possible for me to find out this far after being sick? While your previous response is very reassuring and I have heard that now from 2 other doctors, I feel like my mind will never be at ease about this until I know what DID cause it.

I’ve read other articles about how the diseases can sometimes be confused in diagnoses because of similar symptoms (and in rare cases including the lesion) and actually could have caused my IgM to be positive. This is the part that concerns me, because if my symptoms were so similar to mono, the fact that my doctor did not even test me and jumped right to the conclusion of herpes could have been very serious as I went off to play in a tournament that weekend, and from what I know of mono, you are supposed to avoid contact sports or it could even be deadly.

Thanks for your prompt response to my last question!

[Terri Warren]

I suppose you could have had mono (caused by EBV). CMV with those symptoms seems far less likely. You could have also had influenza. The genital lesion is likely the thing that is throwing you off.

Have you considered asking the person with whom you had sex to be tested for herpes? Also was this person the giver of oral sex to you? If yes, then I think you would also need to think a little more seriously about HSV 1 which is missed 1-2 times out of 10 times the routine screening test is done. You may wish to arrange for a herpes western blot for that. However, if you did not receive oral sex from this person, then HSV 1 genital infection is unlikely unless you may have acquired it some other time and it just showed up after this encounter. Lots of “ifs” I know. Even if you had a positive HSV 1 test on the western blot, it would no necessarily indicate that you had genital HSV 1 infection. So as you can see, it is complicated.

It would not be possible to find out what you had at this point by antibody testing for EBV or CMV.

Except for definitely ruling out herpes, I don’t think you should get too hung up on finding out what caused your symptoms. Many people get sick and get better and never know what caused their illness.

If you are asking me whether you should have been playing sports, I don’t really know.

Terri

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