Viral "Co's"

[LymeEnigma]

So, I've been having this problem for a while ... sores in my nose, ear canals, and mouth. Right now I have sores all over the roof of my mouth and in my left nostril....

I finally broke down and peered into my nostril to see what the heck was going on in there, and I was able to find the sores. There were two, but the outermost one has since healed ... anyway, they look like cold sores one would get in the corners of one's mouth due to some kind of herpes infection: split in the center, giving off somewhat of a "Pac-man" appearance.

Up until now I simply assumed that these sores were all autoimmune, given they seem to come when my body is the most stressed out. I have to wonder now: could some kind of herpes virus be responsible for this, instead? What else going on could be viral? What else could be causing such seemingly tell-tale sores?

[enochroot]

Herpes has many variants! Could be one of them for sure...Does it get worse with
stress and lack of rest? If so - herpes is a candidate...Also - Yeast - some forms cause
the "corners of the mouth" thing - or so one of the I.D. Docs told me.

[cobweb2]

Oddly I had a flare of Hidradenitis suppurativa when I was in the midst of initial inadequate lyme treatment. It's considered an "orphan disease"-but involves sores that develop in the groin and armpit.

thankfully, that particular flare seemed to be the last hurrah because I have not had another since then.

[cobweb2]

HS-
The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage of pus, often leaving open wounds that will not heal. Drainage provides some relief from severe, often debilitating, pressure pain. Flare-ups may be triggered by stress, perspiration, hormonal changes (such as monthly cycles in women), humid heat, and clothing friction. Persistent lesions may lead to scarring and the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression varies from person to person, with some experiencing remission anywhere from months to years at a time, others may worsen and require surgery in order to live comfortably. Occurrences of bacterial infections and cellulitis (deep tissue inflammation) may occur at these sites. HS pain can be difficult to manage.[1]

HS often goes undiagnosed for years because patients are too ashamed to speak with anyone.[1] When they do see a doctor, the disease is frequently misdiagnosed or prescribed treatments are ineffective, temporary and sometimes even harmful. There is no known cure nor any consistently effective treatment. Carbon dioxide laser surgery is currently considered the last resort for those who have advanced to its highest stage, where the affected areas are excised, and the skin is grafted. Surgery doesn't always alleviate the condition, however, and can be very expensive.

It is possible that there is genetic predisposition to the disease.[2] HS is not contagious, and is not affected nor caused by good or bad hygiene. HS is often called an 'orphan illness', due to little research being conducted on the disease at this time. Because HS is considered a rare disease, its incidence rate is not well known, but has been estimated as being between 1:24 (4.1%) and 1:600 (0.2%).[3]

[LymeEnigma]

I'm glad all I have to worry about it tiny, little sores ... I'm glad you haven't had any further symptoms, Cobby.

For copyright purposes, can we get a copy of the link you quoted from?

[itsybitsyone]

You always sound like you have Sjogren's, LE. You ever been tested when they did that ANA, et al?

[LymeEnigma]

I had a low-positive, speckled ANA (1:160) about two years ago and low C3 and C4 compliments, but all other autoimmune tests came back negative. A second ANA taken about a year later came back negative. The infectious diseases doctor insisted that the Lyme was a red herring and I was in the early stages of lupus, but the rheumatologist seemed to think that it was all "just the fibro." They both could have been right, but I don't think the answer is so black and white. Sjogren's is always a possibility, as well; I guess I should be doing some more reading.

I wonder how many people with Lyme don't experience autoimmune responses of any kind? I think we might be in the minority....

[itsybitsyone]

I don't test positive either...but there is no doubt I have Sjo...even if it is caused by the lyme antibodies...same result, same disease, no matter what the cause, I am symptomatic.

Why didn't the ENT see your sores??

[LymeEnigma]

They're not there constantly; it seems like they come when I'm not taking care of myself the way I should be. I really was having horrific thoughts of herpes somehow infecting the inside of my nose (I'm not that much of a freak)! I know these past couple of weeks I haven't been allowing myself the rest and sleep I need, and I have been paying the price on more than one front.

I really need to do some more reading on the possibility of low-level persistent Lyme infections ... I wonder how common it is for one to feel on the edge of remission, but continue on with so many autoimmune issues for years? I wonder how many viral symptoms borrelia regularly simulate...?

[itsybitsyone]

Well, I was never treated for YEARS...decades. And I had some very good years in between. So, sure. You can feel fine for a while. It comes back tho...at least it did for me...but I didn't have treatment.

This is why I think it is so important about how long the bugs can live!! This is exactly why.

[LymeEnigma]

*nods*

We need to find some way to put some bugs in certain researchers' ears....

[itsybitsyone]

Here's a decent run down:

www.fibromyalgia-symptoms.org/fibromyalgia_sjogrens.html

Also, you can go to sjsworld.org and talk about your nose and mouth and realize you aren't alone AT ALL.

They are heavily moderated to keep the conversation respectful and on topic. Has its good and its bad sides. BUT its very respectful and the people are nice.

There's a guy, Mike B., very knowledgable who knows about a LOT of differential dx'es.

Also, SLE (lupus) causes mouth and nose sores, too.

www.aarda.org/women.php

[cobweb2]

admin said:

I'm glad all I have to worry about it tiny, little sores ... I'm glad you haven't had any further symptoms, Cobby.

For copyright purposes, can we get a copy of the link you quoted from?

Sorry for the delayed reaction- I got it from- drum roll.......
Hidradenitis suppurativa
From Wikipedia, the free encyclopedia

Is that okay?

[LymeEnigma]

en.wikipedia.org/wiki/Hidradenitis_suppurativa

Yep, we're good, Cobby.

Thanks for that info, Nancy. I'm slowly sifting through both of the links.