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

[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.

[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]

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?