Wednesday, May 23, 2007

I Don't Have Leprosy

But I wish I did.

At least, I wish I could trade it in for the leprosy cousin that I do have.


Because leprosy is virtually 100% treatable now.

Leprosy is a species of mycobacteria. So is tuberculosis, TB.

When the first information on my skin lumps came back as *granulomatous,* probably infectious, probably mycobacteria, that meant it might actually BE leprosy. Or TB.

Some of the newer strains of TB are very resistant to antibiotics. I really, really, really didn't want to have a TB superbug.

And many of the mycobacteria aren't so good to get, either.

But leprosy? Hey. No prob.

It takes about a year of antibiotics to cure it, and they use at least two antibiotics together. People no longer lose bits of body parts. That was way back in the day.

When there's no treatment at all, nerves die from the disease. The loss of sensation meant people simply couldn't tell they had a cut or a broken fingertip or what have you. A secondary infection would set in, eat the flesh away, and voila. No more fingertip.

That doesn't happen any more. Or it doesn't need to. In some very isolated populations in backwards places, for example, leprosy is still looked upon as a judgement from God. Going to the doctor might get you stoned to death by your neighbors. So losing body bits could still happen there. But that would only be - like back in the past - because they aren't being treated with simple antibiotics.

Leprosy is actually extremely difficult to catch. It's so non-contagious that the medicos now think you must have a genetic susceptibility to get it at all. And, that only around 10% of the population even has the leprosy-susceptible gene.

kdad knows a fellow MD overseas who treats leprosy patients.

When she examines them, she doesn't even bother to wear gloves.

And believe you me, this is not because the lady is stupid or ignorant or careless. She doesn't wear gloves because she knows she doesn't need to.

Just like my Infectious Disease doctor. She doesn't wear gloves either.

She just washes her hands all the time. And never ever catches anything from her patients.

So while I'm really glad I don't have a TB superbug, I'd far prefer leprosy to the Mycobacterium chelonae abscessus I do have. Go ahead, google it all up. You'll see why in a minute.

What I have is an *atypical* mycobacteria. M. chelonae abscessus is extremely hard to catch, just like leprosy, but for different reasons. No one needs to be afraid of my myco unless they're also immunocompromised. Badly immunocompromised, like transplant patients taking anti-rejection drugs. Most people's immune systems fight it off easily.

This, like hundreds of other mycos, is all around us all the time. All y'all reading this may well have it on your skin this very moment, along with staph germs and all that other good stuff you'd rather not know was on your skin.

It's kind of like the sausage thing. You may love to eat it, but not want to know how it's made.

When people like me get this particular species of mycobacteria, it can be pretty hard to kill. The reason? Mother Nature graced it with an unusual characteristic: It's naturally resistant to antibiotics.


It was made that way by nature. My CA MRSA and the TB superbug, among others, were created by mankind: they became resistant to antibiotics because those antibiotics were misused.

I'll be on antibiotics the rest of my life now. At present I'm taking two powerful ones at the same time, cipro and minocycline.

The thing is, they still may not kill this mycobacteria. Often, the antibiotics will work on existing abscesses or infected lymph nodes, like they're working on my older infected nodes. But then, for some reason, the germ is perfectly willing and able to move downstream and infect another node. Even in the presence of these powerful medicines. Strange but true. And...often enough, it likes to head for one's lungs.

Possibly as in: k gets weird lung infection and has to go to the Icky Place, which said Icky Place keeps her for 3 days, orders a bronchoscopy to see what's really going on in there - and then, maybe because she's a CA MRSA carrier, and a charity patient and bronchoscopies are expensive, and they're out of beds - well, they kick her loose. They tell her to be sure to get that bronchoscopy done right away. At some other hospital, please, not here at Holy Cross.

The blood tests show it's NOT aspergillus, which is what it looked like. That would have been Not Good.

OTOH...if the myco is in my lungs now? That's most definitely Not Good as well.

I'm thinking about all this not just because of the recent developments about my arm, but because Bane posted a link to an article about leprosy that, unfortunately, was higher on fear factor than on certain of its facts.

Hear this: I was glad to see the link and article. Very. I really like to see information about these diseases out there. I very much want us all to be smarter and safer. Wash your hands. Don't misuse antibiotics. ESPECIALLY don't take them for a virus (like a cold or flu), or for allergies. When you get a bacterial infection, go to your doctor, DO use the antibiotics as prescribed, and finish your bottle like good boys and girls. Keep your diabetes under control too.

This particular article described leprosy as *highly contagious.* This is extremely far from the truth. Quite the opposite: it's so difficult to catch, it's likely that only 10% of people can catch it at all. Those 10%'ers must be exposed to it for a very long time, say in extremely crowded living quarters for years and years, to catch it at all.

Of course I don't like the idea of illegal aliens bringing leprosy here. But just like the bubonic plague, it already WAS here. Leprosy is endemic in California, Texas, Louisiana, and Florida. The last leper colony in America, Carville, is in Louisiana. It moved from Carville to Baton Rouge a few years ago and it's still there today.

Lepers don't actually need to be isolated any more, of course. It's just that some of them would rather hang with their own kind during the recovery period. They stop being contagious at all after a month or so of antibiotics, and are cured after about a year of them. In the meantime, they often like to stay away from the general, not-leper public.

Cause who wants to be treated like a leper?

Except for me.


Desert Cat said...

Zoiks! So I misspoke...

k said...

Weird, huh?

Did you read that article from Bane? It's amazing how much leprosy is still out there. When Dad's fellow doc in S. America talked to him, she said she has a clinic 2 afternoons a week in this particular village, and she spends almost the entire time treating nothing but leprosy!

And at the same time - leprosy is SUCH a scary word! - it's one of the most easy medical issues she has to treat.

It boggles the mind.

Doom said...


Now, I may be wrong here, but...

Last I heard, leperosy is "sort of curable" with medicine AND education. The afflicted is sent to a school and taught how to live with it, then conditionally released into the population. If they fail to maintain their health, begin to worsen, or a number of other things, they may be yanked back for a re-evaluation. And they maybe be put in the colony (I think we only have one).

Maybe it's all better these days and things are hunky dory, or more likely, no one cares, but if it's changed, it would be interesting to know.

I am sorry you have an affliction as such. I hope you are able to have some contacts. I'm a hermit too, but when I am able, I can easily socialize. I understand bitterness and things some, but... Anyway, I don't know what else to say. Ah, a prayer.

k said...

Hi, doom! Welcome.

Well, leprosy treatment really has changed that much. They've DNA sequenced the different forms now, and know exactly which antibiotic combinations work best for the, I think it's 2, forms of leprosy. My dad's an MD and scientist - a microbiologist - and he really, really, really knows his stuff. His friend, that doctor in Brazil treating lepers in a clinic twice a week, is curing them easily.

You're right about the education aspect, especially for a disease that, historically, caused so much damage. It's extrmemely important for the patients to understand they must continue their antibiotics properly until they're completely cured. As long as they follow the program, though - they ARE cured.

And I'm not sure what the other countries do with their Hansen's (leprosy) patients, but the facility I knew of in Louisiana, Carville, is totally optional. The instructions people get are just the ones from their doctors, the same as when we have, say, a strep throat, and they say, --Stay home from work for a few days, drink plenty of liquids, get bed rest, take these antibiotics on an empty stomach twice a day...or whatever.

When I realized what had happended, when I talked to kdad and surfed up this subject? All I kept thinking was, --What a wonderful world! We've cured leprosy.

I do get out and about somewhat, and right now I'm actually On Vacation traveling. It's been a very long time since I did anything like this. I can socialize some with precautions, except it's very tiring for me.

And it's not this mycobacteria that's the concern for others, but a different bacteria I have called CA MRSA. And I'm extremely careful with all that. So others are safe around me.

I'm not very safe around others though! So I do a LOT of hand washing.

I hope that post didn't come across as bitter. I was mostly making a point about perceptions, I guess. I have an odd sense of humor and it struck me as funny when I realized I'd rather have leprosy than the one I ended up getting.

As for all the health issues I have? Everything together? My overwhelming emotional response to all that is that I'm very lucky to be alive and to be able to do as much as I can. I feel blessed by that.

The vast majority of my days, I have a wonderful time. I feel freed from a lot of the constraints I used to have. I can just be me, as I am. And I play in my garden and get dirty, and grow pretty flowers, and play with the bugs, and eat fresh mangoes off my mango branch.

There are much worse ways to live, huh?

Doom said...

Gee and goodie. *laughs* Actually, I am over (most of) my bitterness. And I do enjoy, I might even be breaking out of my "pen" soon. I don't, however, know exactly what is wrong with me and have never had the means or what it takes to find out. The VA treats symptoms, diagnosis can be a bit weak and is a 5 time loser for me. I became extremely assertive and I am getting somewhere through them if not always with them.

But, life is a joy. Even in the worst of the last, say five years, I have simply understood what you are writing.

I have to add that it is incredible to see the flower that is you find a way to bloom in such a time and place. It adds to my well of hope. Have a great vacation!

Doom said...

Oh, and thanks for the medical update. I track these things occasionally, but it's difficult to track them all! :)

Livey said...

doom. That was very sweet. Thank you.

I'm always so sad to hear about another badly sick person, and when they can't get a diagnosis, it's a million times worse. I went through a lot of that too, especially earlier on. Medical science has advanced along with me and that really helped. When they couldn't culture my myco? They DNA sequenced it. You could have knocked me over with a feather.

This is brand new, see? Totally. Not FDA approved. Some guy at the Quest lab just decided to give it a try. And it worked.

That diagnosis alone took over 3 years.

One of the most hurtful aspects of that? How they get SO inclined to tell you it's *psychological,* blame the patient, when it's the DOCS who can't figure it out. I never held it against anyone who said, --Well, I'm sorry, I can see there's something wrong but I can't diagnose it.

But to blame the patient? Or be dismissive? Or act like, Hey, yeah, you're sick and I don't know why, sorry, just suck it up and deal?


Your approach, getting more assertive - and, I'm guessing, doing a fair amount of your own research - is good.

And the medical update? Of course, the only reason I knew any of that leprosy info was because I've had really good reason to investigate it lately! ;-) Even kdad was FLOORED when he found out his associate in Brazil was treating leprosy patients all afternoon twice a week. Not even that esteemed MD microbiologist tracks them all.

k said...

Whups! that was me, k, not Livey.

Doom said...

I know it was you. I can see you in your pen:)

Yes, lots of research, when I can. And, assertive has been my key. Aggressive gets one neutralized and pacified (to their standards, not your needs) and passive gets one sidelined, as you may well know.

It is odd though, as prisoners of our situations we may be much freer than many in our own ways. At least those of us lucky enough to have our needs attended reasonably, with some resources for even beyond mere needs. It's difficult not to feel fortunate, as you seem to as well, in your own way.

Bloom on, rosing daughter of Eve.

k said...


Good. Very good.

As you've mentioned before, here and at Bane's, it gets easier with time. Me, I suspect I have a lot of years on you.

We adapt. Things that used to be new and shocking and depressing are, at least, no longer new and shocking. Which can help with the depressingness, too.

As can that ability to see the silver linings.