Tuesday, June 06, 2006

Surgery Infection Trepidation - MRSA, Disseminated HSV-1, Mycobacteria

I'm thinking all this through for reasons of my own. Again, I don't necessarily think it'll interest anyone else. You're more than welcome to stay and read if you like...or come back soon, and there'll be something else to muse over instead.

Now I'm pondering that good old standby called infection risk.

Since I take immunosuppression to rein in this ridiculously overactive immune system, I'm immunocompromised. It's much easier to infect me than the average person, and my general ill health helps the germs along nicely.

I'm a chronic carrier of three bad microbes: MRSA, disseminated HSV-1, and some unidentified form of mycobacteria. Get any of those three germs into an opening in my body - even a tiny one, not to mention a surgical incision - and they will paaaarrrr-deeee!!! So I'm already in a constant state of infection and reinfection from all three bugs.

Not to mention, I pick up new germs very easily. My immune system can't fight them off very well - that's what being immunocompromised is all about.

Add to that: I'm allergic to any number of major antibiotics: Penicillin, Keflex, sulfa, Levaquin, and erythromycin. And I develop new allergies all the time.

Immunosuppressed, in poor health, carrying three vicious germs within myself forever, allergic to the very weapons used to kill those germs...Once I'm infected, it's not easy to clear up.

Here's a little more on the private lives of my three prime offenders.

MRSA is a superbug. *Methicillin Resistant Staphylococcus Aureus.* You may have heard or read about it. It's a staph germ, which is always nasty. But this one is even worse - it's resistant to antibiotics. Very hard to kill.

Want more? The one I carry, the one that almost cost me my left foot, is likely a super superbug. I caught it in 2004, when an exceptional strain of MRSA swept through our tri-county area. It went, for example, throughout the county jail systems like wildfire, infecting prisoners and staff and at least one public defender. It seems it was spreading through infected laundry, and person-to-person.

It may be the same strain that showed up in New York City soon after - there's a lot of travel between SoFL and NY. Notably, it infected healthy people through healthy skin. In the past, it hit the sick, usually the hospitalized, and entered through an opening in the skin, a wound or blister or such.

Not anymore.

This is called community acquired MRSA, or CAM. It does things like get passed around high school football teams in Texas. And because of this remarkable and dramatic change in its vitality, it has the medical community on edge.

Here's the difference it makes: I had a lesser bout with cellulitis, probably MRSA, in 2002 in my right arm. That strain, I believe, wasn't the super-strain. It was bad, yes, but I didn't have the continuous reinfection I get today. And that one pretty clearly came from an IV in the hospital - a traditional mode of staph infection. Afterwards, between 2002 and 2004, I got no new MRSA infections. Now it's a constant in my life. And the one I picked up in 2004 came not from a hospital environment, but from casual contact with an infected friend - a person I almost never actually touched.

MRSA causes an infection called *cellulitis,* eating holes in your skin, or making big huge boils, or enormous internal abscesses.

Sometimes all you see from the outside is slightly reddened, swollen skin. Its appearance can be so nearly nothing to the uninitiated that you wonder why that person is in agony. Or why an Infectious Disease doc takes one glance, and sends you to the ER stat.

Other times you get the horror show look. Gross? Yes. Nightmarish. Awful scenes of pus and rotting flesh and sometimes stench too.

It's extraordinarily painful, far more than you'd think to look at it. Far more than any other kind of infection I've ever had. Trust me on this. I have some serious familiarity with pain. Even just the scars MRSA leaves behind hurt forever after.

And does MRSA love to get into a channel, a passageway in the human body, and then travel through you? Like crawling up blood vessels - a form of *blood poisoning* - or lymph vessels or tendon sheaths or bone?

Oh, boy, does it.

When the germ gets in a channel, it multiplies and spreads up that channel. Fast. Not as fast as its siblings, the flesh-eating bacteria, but so fast I once watched an infection crawl up my arm at the rate of around two inches per hour. We could actually see it moving.

Getting MRSA in a tendon sheath is how I almost lost Poor Mr. Foot. The MRSA germ climbed into a little bitty HSV-1 blister on my left middle toe, fooled around in the toe, got inside the tendon sheath, moved on up the foot - and before I knew it, made an abscess the size of an orange...from which springboard it continued, and traveled up to my knee. It spread this way while we were battling it with a combination of IV antibiotics so powerful, so toxic, you must be hospitalized just to take the meds.

Vancomycin, that big gun. Rifampin, a modern TB antibiotic. Minocycline. Levaquin. Levaquin almost killed me with an allergic reaction. And the next day, that idiot goddamned doctor gave it to me again.

MRSA likes to kill. But it LOVES to maim. It's kind of like gangrene that way.

It's a miracle that they saved my foot. My leg. My life. That was 2 years ago. The foot may not last forever. It's terribly scarred inside, badly damaged in the blood vessels, lymph vessels, tendons, nerves, muscle, skin. But the pulses are still good. And from the outside, it looks great. That foot is stuck on me. For now.

Unfortunately, so is the germ. It's virtually impossible to get rid of this particular virulent strain of MRSA. It lingers forever, living in and around your nose, and in folds of skin all over your body. I'm almost always infected with MRSA skin lesions, because every time I get even a tiny cut, the germ enters almost instantly. I kick it in the gut with Silvadene antibiotic ointment and eventually it heals, leaving another painful scar.

Next germ up: The disseminated HSV-1. Basically, that's just *cold sores* run amok. Instead of getting fever blisters around your mouth, you get them throughout your body. *Disseminated.*

It's a virus, not a bacteria - herpes simplex virus 1 (oral). Almost everyone has antibodies to herpes virus, some 85%-95% of the population. Sometimes we hear that the cold sore virus can, rarely, be a serious problem. Yo.

It's a possible threat to pregnant people, like its cousin, shingles. It can get in your organs. Like herpes viruses do, it moves back and forth in your nerve channels. It lives dormant in your spine. When it's *provoked* by a cold or sunshine or a fever or stress, it wakes up from it dormant sleep, traveling along your nerve channel, and popping out in a blister by your mouth.

Or, in my case, anywhere else on my body. Face, feet, blood blisters inside my mouth. It likes a skin injury, too, just like MRSA. It makes a sort of blistery bump there that sometimes doesn't heal even years later. This despite the high dose of antivirals I take each day - 3200 mg of acyclovir (Zovirax.)

When it gets in those nerve channels in your ears, you can go deaf. In the same fashion you can be blinded, lose your sense of smell, lose your sense of taste. So far, I've got it in my ear nerves and have a significant hearing loss in my right ear. That's called Ramsay Hunt Syndrome.

Last but not least is the mycobacteria. That's a family of several different nasty germs. Which one is *mine?* They're not sure.

Mycobacteria is notoriously difficult to culture. It just doesn't like to grow in those little petri dishes in the lab, and if they can't grow it and look at the result under the microscope, they can't positively identify it. Of the different kinds, the usual suspects for what I have are things like tuberculosis - including skin tuberculosis, of all things! - and leprosy.

I have the myco in lumps around my right elbow. There are around 20 or so, about the size of a peppercorn. They still haven't specifically identified it, despite two cultures. They gave up for now, since the treatment would probably be about the same, no matter what the culture would show. So I'm on some 6 months to one year of antibiotics to try to kill it. Minocycline, 100 mg 2x/day, started in December I think. It does seem to be making the bumps smaller, and for a few months I didn't get many new ones.

Until a couple weeks ago.

Then, I got 2 new bumps...and for the first time, they weren't in my arm or elbow, but in my right hand.

Both bumps are within 2 inches of the place they're going to operate.

13 comments:

Susan said...

What is your reaction to the antibiotics you are allergic to? I will begin treatment soon, and I am a little worried about this. Susan

k said...

Susan, just the fact that you're aware of the potential for an allergic reaction tells me that you're highly likely to be OK. Even if you are allergic, you'll be watching and waiting, and if you notice any changes, I bet you'll call your medical folks right away. It's good to see people being careful.

The people who run into trouble are almost always the ones who DON'T take it seriously.

Tell you what - I'll answer your question in a post, so I can blather on as long as I want. In the meantime, if you don't mind me asking: What kind of infection do you have? What kind of treatment is planned? Will it be IV or pills? Will it be at home or in the hospital? Mostly I'm just curious. But also, IV vs. pills can make a difference, as can the setting you're in.

I'm guessing that you're doing some research here. Good. The more you learn the safer you will be. If anyone discourages this with comments like, *You're not a doctor!* or *A little knowledge is a dangerous thing!* please IGNORE them. This is YOUR health, not theirs. If you aren't a doctor I bet you already knew that, huh? And a little learning is better than none - especially about things like this.

Desert Cat said...

Praying I am/will.

What time is your surgery scheduled for Friday?

Anonymous said...

Hi your not alone I am another HSV 1 disseminated walking virus, hands, chest, lower back bowel and genital area, neck, mouth, lips, and sadly I have now had confirmation it is in my CNS after a bout of menengitus in Feb 07. Another 'rare' issue is that it comes out and just rumbles away for years, never really suppressing properly, so I feel 'rough' with many comples symptoms. I take 1000mg valtrex twice a day, and guess what my immune system is apparently fine!
Take care your not along on this one!

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Thank for all

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Anonymous said...

My heart goes out to you. Hope you are doing OK. You are not alone and now you have me thinking. My mother died of MRSA. I have been diagnosed with HSV1,CMV, EBV and am also immunosuppressed because of Corticosteroids for degenerative disc disease. I had chicken pox at 49 took three months for the itching to finally subside. I noticed after mothers death I started to become ill. I was in close contact and we were warned to be careful. I thought I had a great immune system. Great Blog. You really have me thinking. Best wishes to you and your struggles.

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