This may be a bit long-winded but I swear it'll leave you scratching your head,
In September of 2010, I found myself at the beginning of a journey of declining health. What began as a bowel impaction has swollen into an animal of a chronic illness.
I face constant mid-abdominal pain, recurrent "geographic tongue"-like spots on my tongue, episcleritis, inability to take a deep breath, joint inflammation, extreme fatigue, muscle pain, weakness, chronic hypertrophic pharyngitis, >50 new food sensitivities, among other lovely things.
All testing/scopes/biopsies have found little wide-spread inflammation in different locations each time. Some specific blood work shows elevated monocytes and a few slight nuances that suggest chronic inflammation. No celiac, no RA, no "definitive" lupus, no IBD so far. In that time, I also found out I have EBV in my system.
My GI is thinking Crohn's, as it fits like a glove, but no hard evidence to back it up. I went on prednisone for months, the pharyngitis went away with that, but I discontinued after no drastic improvement. I started methotrexate after that and just recently stopped after it not being the glass slipper, so to speak.
The real question here:
It was November 2011 when I noticed a shallow little ulcer on the sulcus between my little lip and my big lip down south. I was elated, as I thought it meant Behcet's would be the end of the road for me, as my rheumatologist was suspecting.
Ob/Gyn could not get me in until 2 days later, totally healed. She said it was atypical of Behcet's, but did not look like herpes. (I've since learned to take pictures of varying symptoms!) She swabbed and swabbed only to sigh and say it was healed, no good. I was subjected to blood work.
The last time I was sexually active of any sort was February of 2010, when I was in a relationship where we exchanged oral, he claims he had no prior sexual contact in his life.
The first one showed no HSV-1 IgG or IgM, no HSV-2 IgG, but IgM was "equivocal" and they told me I had herpes, I protested that I hadn't been sexually active for well over a year, but they pressed.
HSV-2 IgG 0.06 Reference <0.90 [Negative]
HSV-2 IgM 0.89 Reference 1.09 (My opthalmo was worried about varicella causing atrophy in my iris)
I interrogated my past relations, which were limited to oral, and they all plead virgin or tested, but I've since learned you can't trust anyone for anything in this crazy world!
They said I needed a retest to confirm, in a little over a month, January 10, 2012. Still that pesky IgM! I learned in that time the initial ulcer was the result of friction wearing away the first layer of skin, as I have since scientific-method'd this out.
HSV-2 IgG 0.19 Reference <0.90 [Negative]
HSV-2 IgM 1.40 Reference <0.80 [Positive]
HSV-2 IgM AB IFA (3) Not detected Reference Not detected [Negative]
Still positive, the nurses continued to harp on me being HSV-2 positive. I did online reading and called the doctor herself to voice my concerns. She said that it was likely a cross-reaction with EBV, a false-positive, an "impossible result" they had "never seen before," and not to worry about it.
The emotional damage I sustained from trying to come to terms with having HSV-2 before my life has even "started," on top of the chronic illness felt like too much. It fed my greatest fear: HIV infection.
Some time passed, I developed a weird bladder infection that had no burning or anything "typical," just a horrific smell. They found bacteria in the urine, but no white cells. Since I am immunosuppressed and have been for awhile now, they gave me a month of antibiotics.
These antibiotics caused two yeast infections, which of course, I assumed were some kind of latent STD making itself known while I was freaking out about HIV and others. Were my lymph nodes swollen? Was my slightly elevated temperature actually slightly elevated? Is that an itch? Is that discharge normal? Of course, if you think about ants crawling on you, you will feel ants crawling on you!
The anxiety grew to a critical point and I broke down to get retested on February 27th. Unfortunately, they have yet to send me my paper results. Ten days later, and everything came back negative, except... can you guess? *Dun dun dun dahhhh*
Again, IgG was negative for HSV-1 and 2. But the fun addition is that the HSV-2 IgM IFA came back as "Detected" instead of the comforting "Not detected" of the past 2.
I didn't see the values, but I think IgG dropped this time. I didn't see the numeric value for IgM this time, as I was distracted by the sound of my jaw hitting the floor when she told me it came back positive this time (and she kept saying "Hepatitis" instead of "Herpes" until eventually correcting herself...) She said detected IgM meant I had an active lesion.
I demanded she swab me inside and out, figure this out, is it even possible?! No intimate contact in 2 years, no IgG, no symptoms?!
She claimed everything looked great, no little cuts that can happen with genital herpes, or other "atypical" manifestations. Maybe it was EBV cross-reacting or any of the autoantibodies I'm undoubtedly cranking out, she casually said as she waved me out and recommended I see an immunologist.
I still have a week for the swab results to be read to me by my favorite nurses, and I'll coolly remind them to send me those numeric values ;)
So! What could have possibly changed to make the IgM climb and eventually go from "not detected" to "detected" without any risk factor? Considering I feel extremely sick all of the time, don't go to school, and look like a shambling corpse, it's pretty obvious I'm not active!
18 year-old female
Past history of autoimmune illness with immunosuppression
No herpes symptoms
Low risk, but past activity with 2 non-virgins (Both claiming "clean")
Last sexual contact February 2010
HSV-1& HSV-2 IgG neg.
3 HSV-2 IgM pos. 2 IFA neg. 1 (most recent) IFA pos.
Asymtomatic cervix swab pending
I'm fretting this swab is going to come back positive and I'll be one of the unlucky G-negative genital herpes cases. I've read all over the internet "not to worry" about IgM, but it's my body. (I know, I know, I should have *thought* before making my past mistakes that led me here.)
But don't you usually have outbreaks with herpes if you've been extremely stressed, immunosuppressed, chronically ill, depressed, and in poor nutrition...?
I have no idea what to think, what to take into consideration, what to believe...
A little guidance?
Thanks so much for making it this far; I have unending gratitude for anyone taking a crack at this!
Well, I'm far from an expert, but from the oodles of stuff I've read, it really doesn't seem like you have HSV-2. The fact that you're immunosuppressed yet have no outbreaks seems to defy herpes and its tendencies. You have only been positive on IgM tests, which are known for false positives. My suggestion is for you to get the Western Blot test. It is the most accurate herpes test available and should be able to clear up this confusion for you and give you the peace of mind you deserve in already troubling times.
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