Questioning test results

[turning]

Terri, we’ve spoken in the past but here’s recap and update:

1st-time sexual encounter was 9 mos. ago (no encounters since) with another male and apart from a couple kisses on lips, received 5 sec. of vigorous but unprotected oral/genital contact, brief genital/genital contact and hugging (no penetration). Not sure of other person’s status and did not notice any sores on his lips or penis. Don’t recall ever having had cold sores in my life. I immediately experienced massive regret, guilt and anxiety following this encounter (which has continued to this day).

Next day my genitals were throbbing with pain (burning in urethra), urinary urgency, so went to the ER and doc shot me up with Rocephin, gave me ZPak and told me to follow up with testing for all STD’s.
Day 4: I experienced muscle aches, fatigue and low-grade fever, urinary urgency (urinating 10-12 times a day), massive anxiety.
Day 5: Urologist examined genitals (no lesions) and checked prostate and told me to come back for an HSV antibody test in a month. He told me he could do nothing to alleviate burning genitals and that I probably had herpes. Months later, another urologist diagnosed me with mild balanitis (glans irritated, discolored, small red bumps) which probably explains the burning. Never treated for this.
Days 6-9: Massive anxiety, feeling unwell, urgency, burning continued.
Day 10: I experienced muscle aches, fatigue and low-grade fever again and burning genitals.
Day 11: Noticed 2-3 small raised red bumps middle of penile shaft —bumps not itchy or painful but genitals still burning.
Day 12: Bumps turned into single blister that burst after showering (clear fluid and a little blood), but healed almost immediately and left a small red cut-like mark that healed next day. Since that time, I have not noticed any fluid-filled blisters like this one.
Next couple of months, I continued to feel ill, lost 15 lbs., intermittent genital burning. Every so often, would notice small flat pink/reddish dots on shaft (examined by both a dermatologist and doc at local health department who did not find suspicious and did not swab). Other symptoms: extreme fatigue, tingling and slighting burning groin, burning buttocks, rectum, back of legs, feet, small pimples on lower back, buttocks, insect-bite bumps on chest, shoulder, stomach. Past 7 months, neuro issues have worsened (constant burning groin, thighs, legs, calves, feet, pain in heels, twitching muscles in feet, toes).
4 mos. post encounter, IGG for HSV1=0.08 and HSV2=0.06 and WB = negative for both. PCR swabbed flat, red bumps on penis twice (4 and 7 mos. post exposure) = negative. Bumps were similar to those in attached photos (these scattered flat bumps appeared this past Saturday and receded 2 days later).

1. Are my symptoms and bumps in photos consistent with HSV?

2. If so, maybe I am just one of unlucky few whose antibodies/viral load don’t register on tests?

3. Should I retake IGG and WB?

[Terri Warren]

This doesn’t look like herpes to me either, but there is some kind of skin disorder going on there. What did the dermatologist think was going on? Do you have any history of eczema or psoriasis?

With those low ELISA values and a negative western blot and negative swab tests of bumps, you can definitely take herpes off of your list of worries. I don’t believe at all that you have herpes, period. I see no reason at all to retake any herpes testing. Those of you who read what I write know I am conservative about testing, but in this case, your experience was extremely limited and was very unlikely to put you at any risk of an STD.

Terri

[turning]

Terri, thanks. I was examined by a dermatologist/PA at the tail end of my most recent symptoms (but I showed him the photos as well) but he didn’t seem overly concerned and suggested penile dermatitis/eczema as possible diagnosis and prescribed a steroidal cream. I don’t have a history of eczema on any part of my body.

Sorry to beat a dead horse, but this encounter has caused me a great deal of stress mainly due to the fact that the initial presentation of bumps/water blister was never examined by a medical professional or swabbed, so you can imagine the anxiety this uncertainty has caused me. At the same time, it seems hard for me to believe that such a limited physical encounter would have caused so much physical pain and discomfort. I also have been reading about others online who have tested negative for HSV1 (IGG and WB) countless times and continue to have weird recurring symptoms (one finally swabbed positive for HSV1 a year following exposure). Finally, the fact that HSV1 is extremely variable and has not been extensively studied makes me question everything about my symptoms and test results.

1. In your experience treating patients, have you ever PCR swabbed/cultured a genital water blister that tested negative for HSV1? I ask because water blisters seem to always be associated with herpes, from what I have read online. What else would cause water blisters (reaction to massive dose of antibiotics? balanitis? fungus?).

2. Hypothetically, if the person with whom I had the encounter with was infected with oral herpes a month prior to our encounter (no visible signs of cold sores), do you believe that this would make it much easier to transmit HSV1 to me genitally even though the oral to genital contact lasted 5 to 10 seconds (but a vigorous 5 to 10 seconds)?

3. According to the UofW, my Western Blot blood sample had to be retested (happens to 20% of samples). Although my results for both HSV1 + 2 were negative, does this raise a red flag in your view, especially for HSV1? I read somewhere that HSV1 antibodies sometimes interfere with HSV2 antibodies?

4. I realize that HSV1 has not been that well studied, but in your experience treating patients, have you seen a connection/pattern between HSV1 and fibromyalgia/neuropathy/chronic fatigue? I have had continual neurological symptoms following the encounter (burning and aching feet, legs, thighs, buttocks, groin + extreme fatigue + panic attacks + muscle twitches in feet + numb toes). Neurologist has done extensive testing (MRI, EMG) but is coming up empty and just wants to give me painkillers. I’ve never had these issues in my life.

5. I understand that balanitis and herpes are two different conditions, but I have also read that the herpes virus (in addition to fungal and bacterial infections) can cause balanitis as well. In your experience, have you seen a connection between a diagnosis of balanitis and HSV?

6. It seems unethical that the company that manufactures the IGG test for HSV1 would continue to advertise an over 90% accuracy rate when you have recently discovered that it misses 1 out of 4 cases of HSV1. This makes me question the accuracy of the Western Blot. How can we trust this test?

Have you looked into the $9 finger prick HSV test by the new medical start-up company THERANOS (available at certain CVS locations in Arizona and California)?

Thanks in advance.

[Terri Warren]

Of course I have swab tested water blisters that don’t test positive for HSV 1 – some test positive for HSV 2, some test positive for strep, some for staph.

HSV is more easily transmitted within the first few months of acquisition, yes

Having the sample adsorbed does not increase my worry, no.

I have not personally seen a connection between fibromyalgia and HSV 1 infection, no.

Balanitis just describes the condition of the head of the penis being irritated and inflammed – many things can cause that including herpes.

The western blot has been well established over years and years and years of study to be the best gold standard that we have as it looks for multiple proteins vs. the single protein looked for in the screening IgG.

I have been reading about Theranos, yes, and it is my understanding the the FDA approved only the HSV 1 test, is your understanding different than that?

Terri

[turning]

Happy New Year —realized I had one more follow-up.
1. Hypothetically, if my partner was infected with oral herpes just prior to the encounter, would this change your view on my situation if my antibodies hypothetically did not register on IGG or WB tests? My point being that one would assume that the virus would be easier to transmit even though brief but vigorous 5-10 sec. of oral to genital contact?
2. Do you see balanitis more frequently in male patients diagnosed with genital herpes?
3. Do my symptoms not potentially suggest a “mild” primary GHSV1 (suspicious vesicles/blister not painful and healed quickly)? I read a post by Dr Handsfield that a herpes lesion/blister cannot heal in less than 7 days (of course, my blister burst prematurely and never reappeared).
4. I have read that the adenovirus also can cause genital lesions (NIH studies online). Have you seen this?
5. I have read a few things about adenoviral urethritis and was wondering if this could explain genital burning for 6 weeks +/-, some discharge, urinary frequency and fleeting but severe urethral pain two distinct times following the encounter. I realize this is speculation at this juncture but it’s mind boggling that my relative brief encounter would have caused me so much physical pain/discomfort.
6. This morning, I noticed a small, 1/4″ razor-like diagonal cut on the middle of my upper lip. It didn’t hurt or ooze but I did pull outer edges of the upper lip apart and it started to bleed a little (no chapping observed). It’s almost healed but my paranoia it getting the best of me since I am assuming this is an atypical cold sore (brief kissing involved). I don’t recall any major tingling or burning in advance of the cut manifesting [I have been fighting off a cold/flu —scratchy throat —assuming my immune system is not 100%]. I experienced similar “paper cuts” 2x on my lips in the past year since the encounter. Do these raise any suspicions and would you recommend swabbing these?

[Terri Warren]

1. Hypothetically, if my partner was infected with oral herpes just prior to the encounter, would this change your view on my situation if my antibodies hypothetically did not register on IGG or WB tests? My point being that one would assume that the virus would be easier to transmit even though brief but vigorous 5-10 sec. of oral to genital contact?

If you test negative on an IgG for HSV 2 12 weeks out from the exposure or 16 weeks out by western blot, then I would believe that.

2. Do you see balanitis more frequently in male patients diagnosed with genital herpes?

I see balanitis very very rarely in people diagnosed with herpes.

3. Do my symptoms not potentially suggest a “mild” primary GHSV1 (suspicious vesicles/blister not painful and healed quickly)? I read a post by Dr Handsfield that a herpes lesion/blister cannot heal in less than 7 days (of course, my blister burst prematurely and never reappeared).

I have seen recurrences heal more quickly than 7 days, but rarely primary infection.

4. I have read that the adenovirus also can cause genital lesions (NIH studies online). Have you seen this?

I have not.

5. I have read a few things about adenoviral urethritis and was wondering if this could explain genital burning for 6 weeks +/-, some discharge, urinary frequency and fleeting but severe urethral pain two distinct times following the encounter. I realize this is speculation at this juncture but it’s mind boggling that my relative brief encounter would have caused me so much physical pain/discomfort.

I don’t know anything about adenovirus urethritis, unfortunately.

6. This morning, I noticed a small, 1/4″ razor-like diagonal cut on the middle of my upper lip. It didn’t hurt or ooze but I did pull outer edges of the upper lip apart and it started to bleed a little (no chapping observed). It’s almost healed but my paranoia it getting the best of me since I am assuming this is an atypical cold sore (brief kissing involved). I don’t recall any major tingling or burning in advance of the cut manifesting [I have been fighting off a cold/flu —scratchy throat —assuming my immune system is not 100%]. I experienced similar “paper cuts” 2x on my lips in the past year since the encounter. Do these raise any suspicions and would you recommend swabbing these?

Usually oral herpes looks nothing like paper cuts. Genital herpes can but usually oral herpes is much more like blisters.

Terri

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