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.

[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.

[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.

[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.

[moriamerri.livejournal.com]

I know someone with Sjogren's (but I would not have known how to spell it). Don't know if this is of any value.

[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]

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

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.

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).

[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.

[cjsmith.livejournal.com]

Oh yes, definitely all reasonable responses. It intrigues me that the response correlates well with the person's own knowledge, so what they say to me -- seemingly content-free -- leads me to make guesses at what's in their brains.

As for the short-term memory, yeah, that's quite scary. When I tell people I'm lucky, and I want to explain why, I say "I still have my brain and I still have my heart." Neurological damage and heart bundle block damage are neither one of them anything to sneeze at. :-(

[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.

[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.

[cjsmith.livejournal.com]

Yeah, I *seriously* hope you folks have caught it early enough and had it treated aggressively enough that you won't wind up with a chronic form. Fingers crossed, man. :-(

[shadopanther.livejournal.com]

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

[cjsmith.livejournal.com]

Thank you. Fingers crossed so hard it hurts, over here! If this is related to the foot pain, it's a real win that it was found.

[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 :(

[cjsmith.livejournal.com]

It's awesome that he didn't morph into the chronic form. Heck, he can even donate bone marrow if he wants to ;-). Lyme really can be not so bad if it is hit early and hard, which kind of makes me want to go do fundraisers for tests for EVERYBODY.

[hitchhiker.livejournal.com]

I would have been in category 1 except you seemed very calm about it!

[cjsmith.livejournal.com]

Yeah, I've been amazingly lucky. For seventeen years I honestly haven't had symptoms, unless my foot pain is related.

[aquarian-azalea.livejournal.com]

I think people in certain parts of the country are more familiar with it. My grandmother had it back when doctors hadn't really figured out yet what it was (she owned a nursery in a deer-heavy part of New England and worked outside all day). She was in the hospital for many months and nearly died because the doctors, unfamiliar with the condition, misdiagnosed her and treated her for something entirely different. She ended up with permanent neurological damage, fatigue, dizzy spells, etc., but she finally returned to her normal level of functioning and lived to be 94. Everyone who knew her was hearing about Lyme Disease for the first time, and when we found out the area we lived in was just about the worst in the country, we panicked and Lyme Disease seemed like some horrible, deadly plague that everyone was terrified of. For a while we all tucked our pants into our shoes when we walked in grassy areas to keep the ticks off our legs. About 5 years later, several of my parents' friends caught it and had to wear IV pumps on their wrists to deliver consistent doses of medicine throughout the day, and they felt sick from the medicine all the time.

Recently when my doctor thought I had it (I don't) I panicked, remembering my grandmother and my parents' friends, but I did some reading and realized that with treatment it doesn't have to be as horrible as what my grandmother went through, and the severity seems to vary a lot from one person to another (as with any disease). Still, I know it's not fun for anyone and I'm sorry you have to deal with this.

[cjsmith.livejournal.com]

It's very true that people in certain parts of the country have more awareness. The medical community in California is just now realizing that Lyme is in this area, and there's a wide range of response to that -- cluelessness from hopeforyou's doctors, strong advocacy from other doctors.

[jupiter29.livejournal.com]

I am largely in the uninformed category. Although I suppose there is also the aspect that I have been around here long enough to have a good idea of what all your physical issues are, so having a new name slapped on them doesn't instill that much more fear than was already there. :)

Still, I wish you all the best.

[cjsmith.livejournal.com]

...having a new name slapped on them doesn't instill that much more fear than was already there.

That's basically how I'm feeling, and that probably indicates that I too am still largely in the clueless category. I have no assurance that the next seventeen years won't be far worse. I could wind up with severe mental damage, crippling levels of dizziness, a pacemaker, and arthritis-like pain in every joint in my body. But I'm naively assuming that since I haven't had those things yet, I'm going to sail along and not get them. Stupid, really... but emotionally a very human response.

[layer.livejournal.com]

i know almost nothing about it except that another friend was diagnosed with it after moving away and losing touch.

i will say though, i have wondered about the symptomotology having been bitten by a tick myself while working in my yard just over a year ago.

[cjsmith.livejournal.com]

Chronic fatigue can be one of the results of Lyme. I think insurance didn't pay a cent for my blood test, which means what I paid was the total: only a few hundred dollars all told. If you felt like it, you could check. Don't trust the ELISA screen, though. Even the CDC says ELISA alone sucks. If you're going to go for it, get the Western blot, preferably for both IgG and IgM antibodies.

[eeyore-grrl.livejournal.com]

I moved here from Dutchess County, New York, which isn't far from Lyme, Connecticut. Half the people I know have had Lyme's to one degree or another... It's just much more rare out here.ll

[cjsmith.livejournal.com]

Yikes. :-(

[vito-excalibur.livejournal.com]

Ohhh, shit.

Mr. E's stepmother is slooooowly recovering from it. She's off the IV antibiotics now, even! Sometimes people do get better! :/

[cjsmith.livejournal.com]

I'm hoping I don't have to go to the IV antibiotics, but I will if that's what it takes. (Right now I'm on 1gram/day of Biaxin, with all the TMI side effects that that entails.)

Dang it, hit Post rather than return. I'm sorry to hear Mr E's stepmother has / had it! That's awful, and probably twice as awful when you're not thirty but more like sixty. My best wishes to her.