Range of responses

[cjsmith]

When I tell people I have been diagnosed with Lyme disease and am under treatment for it, I get basically one of two responses:

1) Oh my God. I'm so sorry. I hope they're wrong. Maybe they're wrong?

2) Oh.

It's pretty clear who does and doesn't know what this disease can do. (I stress again here that I am one of the VERY LUCKY ones.) People who have known someone with Lyme are in category 1. My immediate family and most of my coworkers fall into category 2. My teammate E went home and looked stuff up, and the next day she was in category 1, and she and her husband are now in major panic mode that they or their son might ever have had a tick bite. A few of my LJ friends are in category 1, along with a good cross section of square dance friends (especially those who know a mutual friend from NJ, because his case is quite a bit less lucky than my own, except for being diagnosed within the first 15 years).

There is also a very rare third category:

3) I had / I have Lyme! My symptoms were / are _______! Let me tell you how I treated it!

So far I have gotten response 3 from two doctors (one human doc, one veterinary doc). One LJ friend is also fighting this disease. But really, mostly I get category 2, and occasionally a 2 comes back and turns into a 1 after some web research or something.

Is it wrong of me to be just basically amused by all this? I guess it's better than being basically frustrated or annoyed by it. (I deliberately did NOT write "ticked off". No applause, just throw money.)

Comments

[ohhjuliet.livejournal.com]

*hug* I'm uninformed.

[fuzzygruf.livejournal.com]

At least you wrote "amused" instead of "tickled."

[evilegg.livejournal.com]

Or bugged.
Or that it really bites her ass.

CJ: As far as being amused, when someone hands you Lyme Disease, make Lymenade.

[just-cyd.livejournal.com]

In geographical areas where ticks and Lyme are a lot more common, i bet you'd see different results. it was all a Very Big Deal in coastal NJ, but in Ohio, it rarely comes up.

i think there's a lot of general ignorance and/or misinformation about diseases in general. i just tell people i have lupus because not a soul on this planet has heard of Sjogren's. i can't say that i know much about Lyme, other than to know that you're in for one hell of a battle.

maybe getting someone famous to spread the word (http://www.seacoastonline.com/apps/pbcs.dll/article?AID=/20080612/NEWS/80612006) can help? i didn't realize that he was still actively battling this.

[allanh.livejournal.com]

Of course it's not wrong for you to be amused. I find it's always pleasanter, both long-term and short-term to see the humor in things rather than getting ... uh, worked up.

[cjsmith.livejournal.com]

Or even that it sucks.

I bet Lymenade tastes like soapy tinfoil.

[cjsmith.livejournal.com]

Yeah, most people we bump into at work don't have full medical catalogs in their brains (and if they did, they'd be our doctors, telling us we're full of shit).

The only thing I know for sure about my battle is that I cannot win it. My symptoms may improve, or they may not. It's a crapshoot. Okay, the other thing I know is that if my symptoms don't improve, I'm ditching this treatment thing. It's expensive and it's annoying.

Hall clearly has the chronic form. As best I can tell so far, he's right that this disease is underdiagnosed and undertreated. However, it also seems the medical community is right when they say that if you catch it quickly your chances are good. The problem is the folks who don't get the signal of the characteristic rash. They don't know to start treatment, so they're hosed.

[cjsmith.livejournal.com]

*grin* And really, most people don't have extensive medical encyclopedias in their heads. I wonder if this is one of the signs of aging -- we start to recognize more and more medical schtuff as we and our friends start to go through things.

[cjsmith.livejournal.com]

I see humor in the weirdest things. Someone else's tragedy is rarely my comedy, but someone else's odd behavior sure can be. :-)

[allanh.livejournal.com]

Then I must have provided you with plenty of amusement for some time. :)

What about "Oh man, that sucks!"?

[lrc.livejournal.com]

My mom had lyme disease and it rather kicked her ass. She hasn't been complaining of it so much lately. I'm not naive enough to think that the diagnosis is likely wrong.

Another one of those sucky things is POTS, which my sister has, postural orthostatic tachycardia syndrome. She has the version where if she stood up, her BP would go up into imminent stroke territory. Western doctors were at a complete loss, fortunately she found a Chinese doctor who has been able to help tremendously with it. Moral of the story, don't get a bump on the noggin, that's what seems to trigger it.

I did have one person I mentioned it to react by saying she had had it too.

[ambar.livejournal.com]

Cilantro tisane with a sprig of tinfoil, madam?

[hopeforyou.livejournal.com]

I knew to start treatment, I did get a rash, but the PAMF doctors wouldn't treat me so I had to go elsewhere. I had a textbook case, but they told me "there's no Lyme in California" or "it's very rare" -- both of which are documented bullshit (http://www.lymedisease.org/california/california_map.html).

What I know is this: If I treat it, my symptoms are better as long as I take antibiotics. It IS expensive. But if I stop, MY SYMPTOMS RETURN and get WORSE. So, at $88/wk on NO insurance, I take them. Otherwise I won't be able to walk after a while, let alone garden, swim, hike, fly across the world, and go to job interviews. I.won't.function.

And this is definitely a crapshoot... There's a chance the antibiotics I'm using for many months will cease working, and I'll have to try using something else. Which may lead to an allergic reaction in me and not work. Which will be expensive, even if it does work, and initially, the side effects profile may knock me on my ass.

There's not much I can do but keep going, and doing what works. Right now, the antibiotics I take give me not just better quality of life -- they give me *any* quality whatsoever.

[ken_r]

Amusement is generally the better choice.

But unless #2 is said in a dismissive or derisive tone, they all sound like reasonable responses for varying levels of clue about this particular disease.

I knew someone around MIT who'd been diagnosed with it, years ago. Apparently it had some pretty drastic effects on the short-term memory, in that case. Kind of scary.

Re: What about "Oh man, that sucks!"?

[hopeforyou.livejournal.com]

I didn't know your mom had lyme disease. How long did it kick her ass, and what did she do?

I have it. I've been struggling with it for 2 years now, and much of the time I'm doing so-so to okay on antibiotics... but occasionally I have weird medical issues come up (due to the Lyme still in me, or effects of long-term antibiotic use).

[hopeforyou.livejournal.com]

After 2 years of this crap, I associate the taste of Lyme with bitter pill powder.

Ew.

[hopeforyou.livejournal.com]

I'm pretty public about having Lyme, so it's okay if you out me.

I have had the same experience, and feel at times like I'm a junior educator with a minor in infectious diseases since this happened.

I really don't want my worst enemy (not that I have one, but this is the thing...) to go through what I have, and I want others to understand how difficult dealing with Lyme is and how much they can do to prevent it.

I want to tell everyone to:

AVOID sitting on logs and leaning against trees outdoors. It's been scientifically proven that ticks prefer to sit in these areas to latch on.

Remove logs, bark, brush, and tall grass from around your home. These are perfect places for ticks to hang out and stalk you.

Wear boots with pants tucked into socks underneath them when you hike.

Wear long light-covered permethrin-laiden pants and shirts when they go hiking, and take them off near the front door of the house and walk naked through the rest.

Have lovers check your entire body for new moles, which might be ticks.

Check your pets frequently for ticks. Animals can get Lyme Disease too, and it causes a lot of arthritic pain for them as well.

Learn how to remove ticks properly so they DON'T shoot their disease-laiden wad into you. While some medical reports say it takes 72 hrs of a tick constantly being on you to transmit Lyme, others say 24, and others say transmission can occur almost immediately. Crushing the tick or burning it while it's in your skin will definitely raise your chances of transmission, regardless, so don't do it. (FWIW, mine was on me for no more than 5 hours when I removed it improperly, not knowing what it was because it bit the back of my neck and I removed it with a bar of soap in the shower.)

So, that's my spiel.

I also say that getting Lyme for some people is NOT just like getting the flu and taking a few pills and it goes away. It doesn't work that way for everyone, and early tests after being bit can show a false negative -- in fact, the tests are notoriously inaccurate and it takes time for antibodies to be present to the bacteria.

Re: What about "Oh man, that sucks!"?

[lrc.livejournal.com]

Oh man, that sucks!

I don't remember how long it went on, or has gone on. Over the years it has gotten progressively harder to keep track of her various medical crisis.

[kimatha.livejournal.com]

Awful as it is (and as soon as you posted your diagnosis I googled it so I have an inkling of what it can do), at least you know what's wrong with your feet now. Persistent disabling pain with no explanation seems worse than knowing what it is that's causing it.

Category 4

[kateyule.livejournal.com]

Yes -- I'm sufficiently ignorant about the utter nastiness of Lyme that my first reaction was "Woo-hoo! A diagnosis! Now maybe they can start treating the right thing!"

[meep.livejournal.com]

i have had 3 of my 5-member family (so far) come down with Lyme.

i =hope= that we've caught it early enough in us, and as far as i know that you caught it late, man, that sucks. (yes, i see above, i'm not original).

and i figure it's only a matter of time before mr. d and i get lyme. but we should catch it early for us.... i hope. i hope we don't have asymptomatic lyme that we find out about 5 years from now.

but it's true that having a definite diagnosis helps.

still, old lyme sucks majorly.

[meep.livejournal.com]

i know it takes less than 24 hours, from direct experience.

But also, one of my kids have had three ticks found on him.....and he's the =one= who hasn't had Lyme yet.

[shadopanther.livejournal.com]

I'm in category 1 with the added thoughts of: I hope, given a diagnosis, the treatment helps your symptoms.

[shadopanther.livejournal.com]

Perhaps wearing gaiters (http://www.rei.com/product/697872) may also work to keep pant legs inaccessible while also keeping stickers out of one's socks?

[plymouth.livejournal.com]

My ex-fiance had lyme. Twice. My impression was that it sucked a lot at the time but that he had no lasting symptoms after it was treated. For years he thought that having had lyme meant he couldn't donate blood, but I checked on that for him and found out that he was fine to donate after having been off the drugs for some length of time. Of course the first time he donated he got sick for a week and then I felt guilty for talking him into it :(