Herpetic Ear?

[scottyhp]

I believe I may have contracted a herpetic ear infection.  It's mainly on the back of the ear and the ear lobe, and I'm experiencing symptoms that dermatologist now believe are herpetic and PHN.  The issue is the rash is generally very subtle, the most visible symptom of the rash is the one I posted.  This is the 3rd outbreak in one year, but most of the time the symptoms aren't as visible.  I'm concerned it's hsv2 and is generally shedding, but the blisters don't always form all the way.

Multiple doctors (primary, dermatologist, infectious disease specialist, urologist) have informed me it's not herpes at all, but the symptoms match impeccably and they refuse to do swab tests or any further tests.  I was originally told I had an IGG antibody test for herpes which tested negative - I've since looked at the test and it was a PCR DNA test which is inaccurate.  I'm seeing a new doctor in december to get appropriate tests(IGG antibodies) - but this won't prove it's in the ear unless I get a swab test which they've refused to do to this point.  Hence why I'm looking for new doctors.

I know we don't generally look at photos and I don't hold anyone accountable for this infection except my self, however I know the complications of an HSV2 ear infection are quite severe compared to a HSV2 genital infection based on recurrence rate in the ear causing nerve damage, hearing loss, etc.

What do you guys think?  The closest thing to a blister on my ear is provided in the picture.

[scottyhp]

The dermatologist is the one who told me it came back for herpetic fluid but didn't know which.  I had him send me the test

Culture, hsv, rapid method.   Left ear.    Isolated*

The swab was taken in my ear and sent to quest diagnostics.  

Combine that with an igg blood test taken by my pcp for hsv1 positive, negative hsv2.  Do you want me to post both my test results for you to see this?   This is not absurdity and nor has it been fabricated.   I know we don't do photos as part of this forum but hsv is a serious illness when it's in your ear and that's where the swab was taken from.  

I've suffered recurrent outbreaks on my ear and it's incredibly painful.   That's why I'm asking about autoinnoculation.  

[Fleetwood20]

This story is not credible, you cannot have 5 of the most incompetent doctors we have ever heard of. You have an oral HSV1 infection which means you don't have it on your ear.

A swab does not come back positive for herpetic fluid.

Get your story straight, we are tired of the near absurdity and probable fabrication.

[scottyhp]

These are questions I've asked my doctors, infectious disease specialist, dermatologists, pcp.  All of which refused to acknowledge it was even herpes until I begged for a swab test to prove it.  

Now that I've proved it in my ear they won't swab the other markings that have the same symptoms even when I ask.   I've gone through 2 dermatologists and mos diagnoses as well as the wrong medication being prescribed.  

They also won't give me suppressive medication even though an hsv ear infection is much more to worry about than a genital or oral sore.  I'm sorry if I'm not too thrilled with the "official medical community" and hence why I've came here for help or suggestions.   I have gone through 5 doctors and about 30 appointments and the only way to show them they were wrong was to force tests but I can't force them to prescribe me suppressive medication.  

That is why I came here looking for other answers from members that seemed to have a lot more knowledge than your typical doctors.  

Grace, you had mentioned in a previous post  that hsv1 can spread along nerve paths rather than autoinnoculation, would this be a possibility if I've had a long standing cold sore infection?

I didn't mean to exhaust anyone, just be happy your not in my shoes....

[Life360_Dave]

I would also agree, very exhausting.

[Fleetwood20]

i was just about to say the same thing, this yarn now exceeds the bounds of credibility.

[HowardH]

I give up. Why do you keep coming to this forum, populated with nonprofessionals, about questions you could ask your own doctor? All it would take is a phone call for a definitive report of what was and was not found in the swab test from behind your ear. You're wasting all forum users time and your own emotional energy.

That's my last comment on this thread.

[scottyhp]

The swab test showed herpetic fluid, but didn't specify what it was.   Vzv is at 3.4, hsv1 at >5.  

I know almost everyone test positive for shingles because of chicken pox.   I believe I've had cold sores my entire life because it's on the lip, but it is possible to be canker sores I suppose, it was never tested.  

It's behind my ear and in my ear, the swab was taken from the rash inside my ear.   If this is hsv1 wouldn't that be considered gladiatorum based on the location of the rash?   Oral is lips, genitals is you know, and anywhere else is gladiatorum or zoster.  

Is it possible to be recurring zoster?   I thought shingles = zoster, where as zoster is primarily on the face...

[colourfulrainbow]

What did your lesions look like?  

Can you please describe them and your symptoms....I am having similar issues.

[HowardH]

You sent me a private message indicating HSV1 was identified from your ear, confirming this is herpes simplex (not zoster/shingles). You also said you have had oral cold sores in the past. If so, this is an atypical situation; new infections or auto-inoculation are rare in longstanding herpes. But there are exceptions to every rule, and this indeed sounds like a new infection. You mention herpes gladiatorum, but that's not likely based on your earlier symptoms with only one or two lesions. But it might be possible if you were exposed appropriately, e.g. by wrestling, playing rugby, etc.

I also have to wonder whether your previous cold sore history is accurate. For example, that you're not speaking about canker sores inside the mouth, but typical recurrent herpes on or near the lips.

Many of the symptoms you described above (chills, night sweats, vertigo, etc) probably were entirely unrelated to herpes.

Anyway, it must be reassuring to finally have a definitive diagnosis. From here on, I would advise following your dermatologist's and/or ID specialist's advice about management. If there are frequent oubreaks, you probably could suppress them with valacyclovir, acyclovir, etc. Good luck.

[scottyhp]

Still working with my doctors, seeing different specialist for this.  I believe it's called gladiatorum because for me the rash is mostly on my ear, back of my head, and scalp.  2 dermatologists agree based on the symptoms that it's herpetic and not likely shingles, but it's nearly impossible to get a culture without lesions and most of my symptoms are asymptomatic and atypical.

For me the symptoms all spread asymptomatically during viral shedding, after the primary outbreak that was misdiagnosed.  The pain has been excruciating to the point where I can barely work.  I don't think I've ever been so depressed in my life from this.

Have you figured out your diagnosis?

[helpmee2011]

Hello Scotty,

I believe I have been dealing with the same kind of symptoms any luck with the diagnosis.

[HowardH]

Almost everybody has a positive VZV blood test, because almost everyone has had chickenpox, or has been immunized against VZV. Either of these gives a positive test for life, so this has no bearing on the problem involving your ear.

This sounds more like HSV1 than shingles.

The level of HSV1 antibody is unrelated to the activity or severity of the infection. The only way to document whether HSV1 is responsible for the symptoms is to test a fresh outbreak for the virus.

However, all this business is much too complex to resolve by an online forum like this, or through any other online resource. In person medical care and perhaps testing is the only way you're going to sort this out. So I won't have any further comments or advice. Good luck with it.

[scottyhp]

IGG results were HSV 1 >5, and VZV at 3.4 on the igg blood test, negative for HSV 2.  

Because the rash has recurred 3-4 times within the last 9 months, and that is after using Valtrex each time to suppress the rash, do you think it's more likely to be HSV 1 rather than VZV?

Is there a test to tell how high my HSV 1 antibodies are, such as as case in disseminated hsv?  I have barely been able to move the past few weeks and the pain is excruciating.  

[scottyhp]

Was your shingles diagnosis verified at age 20?   Via a swab test.  Or was it hsv1 2 living dormantly?

[scottyhp]

Quick question for you.  I've read that HSV infections on the neck or ear are most likely to happen in immune compromised individuals.  I've had a clean bill of health meaning that my CBR, all blood test of my immune symptoms check out normally as a healthy individual. HIV negative.  

Is it possible this is a recurring infection that has gotten worse because of my immune system being low from stress, diet, and immune system deficiencies?  

[scottyhp]

That was a big part of the issue is that the first 2 outbreaks were subtle enough to look just like pimples or an allergic reaction as the infectious disease specialist diagnosed, but painful enough to be herpetic. The last outbreak is where you see the rash and inner ear which was when I was under the most amount of stress.  I wasn't able to see a doctor at that time due to other reasons in my life.  I'm seeing a dermatologist soon to look at it further.

When I asked the infected disease specialist to look at it he said it didn't look like herpes since it looked like the first two onset of rashes (pimples).  He ran a number of test to check my immune system, hep a, b, c, syphilis, etc.  All negative, I kept telling them I believed it was herpetic but because my first doctor told me the first test was an IGG, I went on that speculation to all other doctors so they all assumed it wasn't herpetic.  It wasn't until after I ordered the test to look at it personally did I determine it was a blood PCR test.  I do believe the possibility that since the infection is in my ear, it's possible to spread into the canal causing further complications.  (ie the vertigo symptoms I was experiencing) However the doctors haven't done an IGG yet because of the previous speculation I thought it was already done.  Going back to get another test soon.  

[HowardH]

This is all very interesting and very complex -- too much for a community forum. You obviously have learned more about these issues, and about HSV infections in general, than many physicians.  I'll just make a few final points:

The blood PCR for HSV is intended for suspected cases of immediate life-threatening HSV infections, the sort that occur (rarely) with advanced cancers or chemotherapy, or in newborns with possible herpes acquired during delivery. Few if any herpes experts would have done it in a case like yours. I agree this negative result does not rule out HSV as the cause of your various skin lesions.

At the same time, it is a mystery to me why nobody has done a PCR test from the ulcers behind your ear, or an HSV IgG antibody test. Is your new doctor an infectious diseases specialist? If so, he or she is likely to do these tests, I would think.

Finally, despite all this, I am skeptical that herpes explains most of your symptoms, even if it may be responsible for some of them. The apparently open ulcers behind your ear and in the ear (out of focus) are the only posted lesions that look suspicious to me. The other red spots here and there look like pimples.

[scottyhp]

Posted some more photos in case you want to cheat your rules again.  ;)

[scottyhp]

The outbreaks typically last a 2-3 weeks, Valtrex makes them go away within a 10 day period and then they recur a few weeks later.  This is the 3rd time since March this year these lesions have recurred.  So within a 7 month period, 3 times.  Ironically, I've had no lesions "down there," even though that's where I believe it spread from.  Asymptomatic shedding is the cause of my misfortune.  

[scottyhp]

HSV blood testing was the PCR DNA test.  It was drawn by blood, it wasn't a typical PCR culture on a lesion, it was a PCR blood test.  (http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=34257&labCode=DLO)  That's the test that was ordered.  

The outbreaks began happening all this year, on my eyelid, ear, and neck.  I've had one marking on my eye but stopped it from bursting with home remedies so it wouldn't spread to the cornea.(I'd rather not have a blister form around the eye because of the irreversible damage it can cause)  I'm confirming my vision status wednesday but I believe it has deteriorated significantly and will have records for that this week.  Between February and May it deteriorated 5 points, 20/25 - 20/30 vision.  

I was able to convince one doctor that I have herpes and was prescribed valtrex even though the blood test was negative.  Valtrex seems to make the symptoms go away but they return a few weeks later - recurrent outbreaks like this are more associated with HSV2 compared to HSV1.  Resumed the valtrex and the symptoms again went away, and came back a few weeks after.  I'm since out of valtrex and even though I've asked for an IGG test, the doctors wouldn't order them.  Hence why I'm seeing a new doctor that is taking my case more seriously.  Herpetic ear and eye infections with HSV2 have severe consequences associated with them.  I wished it was only a genital infection cause that's a lot simpler to live with.

I believe a PCR culture is very accurate, but a PCR blood test I don't believe to be as accurate.  Am I wrong in this?

Some of the symptoms I've experienced over the last year while lesions are active and not active include:

Severe pain in the ear, eye.
Minor lesions as shown in the ear.  Similar markings have appeared in other locations.
Vertigo
Loss of appetite
Fever
Chills
Night sweats
Severe depression
Mental / behavioral changes

All of these symptoms can be associated with a herpetic infection mixed with PHN.  

The issue with a PCR culture is the lesions come and go, by the time I get an appointment with a doctor, the lesions are gone and the doctors are convinced it's not herpes because of this, even though the recurrence and pain associated with this seems to be pretty herpetic.

I've asked for an IGG test on multiple occasions but they won't even order one.  I need the IGG test so I'm seeing  a new doctor who believes it to be herpetic as well.  I suspect very high levels of anti bodies once these are received.

[HowardH]

Shingles is most common in older people, but not rare in younger ones. I had it myself at age 20. That said, I agree that sores that come and go are not likely to be shingles -- that behavior is more like HSV.  And you are exactly right about auto-inoculation occuring early in HIV infection, before antibodies have developed.

What has HSV blood testing shown? How frequent are the outbreaks? How long does each last? Has anti-HSV treatment been tried either to treat outbreaks or suppress them?

What you "believe" about PCR testing is largely wrong. It rarely gives false negative results in fresh lesions.  Has PCR testing ever been done on sores that were present less than 2-3 days? If so, it's strong evidence against HSV.

[scottyhp]

PHN is often associated with shingles, but has been associated with HSV 1/2 as well in many documented cases.  

Getting retested for HSV antibodies soon.  I believe PCR DNA test is inaccurate and wouldn't capture the virus.  My doctor told me it was an IGG test but it wasn't by looking at the test, going back for an IGG test soon but now I'm out've insurance so thats not good.

[scottyhp]

I don't believe it's shingles as I'm under 30 years old.  At the same time, my entire immune system checks out as a healthy individual, HIV anti-bodies are negative.  Only deficiency was vitamin D which has since been corrected.

The issue is the sores come and go, you need to see a specialist to swab it, and by the time you see the specialist the sores are gone.  I thought it was varicella zoster virus as well, however this is the third recurrence in one year.  Zoster by my understanding doesn't recur as often, hence my thinking for HSV2 rather than HSV1 as hsv2 doesn't like the face so it wouldn't be too noticeable but would recur more frequently than an HSV 1 infection.  This would also explain why it's been misdiagnosed for a long period of time.  

PHN is associated with shingles, however - looking at many posts shingles is often mis diagnosed as an HSV1 /2 infection.  The likely hood of my having shingles is very low considering my age, and my healthy immune system.  It's more likely to be HSV.  

I believe it spread while the anti bodies were still forming, after my doctor had told me I tested negative but it was a PCR DNA test.  I haven't had any blisters down there, just dry skin which is associated with viral shedding.  

The new dermatologist made the observation out of the office, have an appointment to see her in a couple months to get retested.  

[HowardH]

I cheated on my own rule and looked at your photo. And on further reflection, although this location is atypical for HSV, it could be shingles (herpes zoster), which is the only form of herpes associated with post herpetic neuralgia. However, as the name itself implies, PHN is a problem after shingles has healed. The photo is consistent with shingles, or with HSV if you have any sort of serious immune deficiency?

How long have you had the open sores in this location? Did the dermtologist prescribe an anti-herpes drug like valacyclovir? Are you HIV positive? If not certain, when were you last tested?