IgeneX says:

[cjsmith]

Lyme disease.

Comments

[mactavish.livejournal.com]

Wait. This means you can haz it?

[cjsmith.livejournal.com]

According to the CDC, no; I am not positive on enough of the bands. However, the CDC standards kick out some stunning percentage (40%? 60%?) of the people who had a characteristic bullseye rash and fever!

According to IGeneX, yes, I can haz.

[kimatha.livejournal.com]

Well, roll me up and call me curly.

[cjsmith.livejournal.com]

Yeah, me too.

I'd been presuming that if I had it, I'd caught it in Georgia in the Army in '91. (Last I remembered, from vague info 15-20 years ago, it was nearly unknown west of the Rockies.) But I just learned tonight that Lyme-infected ticks have been found in most counties of California. So maybe I caught it during my major backpacking phase.

I just now went back through my LJ for the time before the pain got bad, late fall of '03, and I didn't even have the "flulike symptoms". I didn't in '91 either, and back then, I was paying attention, because I had ticks all over me. I'm definitely an atypical case.

[tenacious-snail.livejournal.com]

wow. Bizarre. Congratulations. Something.

and here, have some bonus cute (http://www.flickr.com/photos/puffinart/100394707/)

[cjsmith.livejournal.com]

wow. Bizarre. Congratulations. Something.

Yeah, that's about what I'm thinking. Something. Definitely something, but I'm not sure what. :-)

YAY for bonus cute!

[lisa-marli.livejournal.com]

Interesting. Probably from 2002 or 3 though, since you didn't feel bad until then.
Nice if they can fix you though.
At least then you can stand on your feet and do all the vet work!

[cjsmith.livejournal.com]

No way to know, really. I didn't have tick bites in '02-'03, and I did in '91 (in an area rampant with Lyme)... but really, there's no way to tell for sure.

I sure hope they can get me into, basically, remission. That'd be a win. The treatment is a royal pain though. (wry smile)

[wordweaverlynn.livejournal.com]

Let's hope this is a constructive diagnosis with some nice *cures* attached. But in any case, it's better than battling fog.

[cjsmith.livejournal.com]

As best I can tell no one is ever cured of Lyme. (I still have a lot of research to do.) But they can become asymptomatic, and frankly, at that point I no longer care about the biomedical reality behind it. :-)

[evilegg.livejournal.com]

I had lyme slushie disease all last summer. It gave me chills, and turned my tongue green, and gave me the sugar shits. :(

[cjsmith.livejournal.com]

HAHAHAHA *snort* *sniffle* hee! At least lyme slushie disease tastes good, even if it gives you brain freeze and all that other stuff.

[jupiter29.livejournal.com]

Well, I would never wish an actual disease on anyone, I don't think my karma could stand it. :) But I would love for you to get an actual diagnosis that can lead to a real treatment, so I will keep my fingers crossed for you.

[cjsmith.livejournal.com]

Amen. Thanks. :-)

[ladycelia.livejournal.com]

A diagnosis is a good thing.

[cjsmith.livejournal.com]

It sure as heck is. O'course, there's no certainty this is related to my feet. It's just... a higher chance than anything else we've found recently.

[wooddragon.livejournal.com]

Interesting. I understand the relief of finally knowing something, maybe mixed with a little concern.

[cjsmith.livejournal.com]

Absolutely. There's not even any certainty that this is related to my foot pain; it's just more probable than anything else we've found since the neuromas came out. Heck, if it's NOT related to foot pain, I'm not sure I care that I have Lyme. I've had it for nigh twenty years and I'll probably not get bad 'til the rest of me starts to fail. And if it IS related to foot pain, man, bring on the powerful drugs with nasty side effects. Bring 'em on.

[ashiegrrrl.livejournal.com]

While I can't consider this good, I do know what a relief a diagnosis can be so you can start treatment to see if it will help with relief.

*hugs*

[cjsmith.livejournal.com]

Amen! That's exactly it.

[tryslora]

Have you gotten the blood taken for the testing? My thoughts are all excited congratulations on an answer and a direction and all omg!condolences and thanking gods it's not worth and ... and ... *HUGS* Because those are for both the good and the bad.

[cjsmith.livejournal.com]

Yep, those lab results were from the blood draw about a week ago. They're really a very mild positive; many doctors might still think the results were inconclusive at this point. And who knows if this has anything to do with my foot pain? But it's -- my completely untrained brain is saying maybe I have a 10% chance, now, of becoming asymptomatic after treatment for Lyme, and 10% is WAY HIGHER than anything I've seen for years. Just like you said, it's a good and a bad thing. (wry smile)

[tiger-spot.livejournal.com]

Wow. Good luck with treatments and things -- this should give you some new stuff to try, yeah?

[cjsmith.livejournal.com]

It sure does. Massive doses of nasty antibiotics, with extra stuff to counter the side effects, plus some dietary changes and possibly even sleep meds during the treatment, which might last, oh, six months. It would be so worth it if I could get my feet back.

[hopeforyou.livejournal.com]

Damn. I'm so sorry.

If you need to talk... Please do. I've got a whackload of research and resources under my belt, plus some emotional skills for handling this to some degree.

*big hugs*

[cjsmith.livejournal.com]

Thank you. I'd love to hear more about the research and resources you have found. I feel a little like a poser saying this has much of an emotional effect, because frankly, for a late-stage/chronic Lyme case I'm incredibly healthy, but still it's not exactly comfortable news.

[just-cyd.livejournal.com]

oh wow. rally? what a bizarre connection, but if it gets you your feet back ...

here's hoping that you can get the docs to go with this one and actually get results! *crosses everything*

[cjsmith.livejournal.com]

Isn't it weird? If this does turn out to help my feet I'm going to be on a massive crusade: GO GET A LYME TEST! A good one, not that ELISA thing. I've already mentioned to my father that a friend of his with mysterious musculoskeletal pain might think of getting tested.

[iridium.livejournal.com]

I'm glad you've got a diagnosis, and I hope the treatment makes a difference with the symptoms you've been dealing with for so long. *hug*

[cjsmith.livejournal.com]

Thanks. Me too, me too.

[hnybny.livejournal.com]

I always thought lyme was a definite positive or negative test. Good to know for future reference. I have a friend with lyme who had progressed to Bell's Palsy before they figured it out. Hopefully, they'll keep looking elsewhere as well, since they aren't 100% sure.

[cjsmith.livejournal.com]

Yeah, we wish it were definite. All it can detect is free antibodies, so
a) if you haven't made them yet, or
b) if they're all busy attaching to the invaders,
you'll falsely test negative. And
c) if you were merely inoculated (there's a vaccine now, I hear!), or
d) you got IgG antibodies placentally from your mom,
you'll falsely test positive. I'm sure there's more complexity to that; this is just my first bit of research. :-) People are working on making better tests, but no luck yet.

Your friend might be lucky it was only Bell's Palsy. When it eats up the heart conduction fibers or various bits of brain, you've got something life-threatening on your hands. Scary stuff. If I've truly had this for 17-18 years I am very lucky.

Yeah, they'll keep looking elsewhere, although we might take a break for a few months to treat this. :)

[windsea.livejournal.com]

Good lord. But, yes, having a name and cause for it all -- such a leap forward. Oh, as wretched as the treatments are, I so hope they work well.

I had a bullseye rash after a bite in tick country last year, and my doctor put me immediately on heavy-duty antibiotics. I tested clean afterwards. Thank heavens. I was so afraid. I can't imagine what it would be like to go through the disease and all its manifestations.

[cjsmith.livejournal.com]

Oh good. The bullseye rash is probably one of the luckiest manifestations you can get, really; it means you get treatment early enough that it can work. I'm so glad you hit it hard and hit it early!

[tendyl.livejournal.com]

*hug* I'd say congrats, but that doesn't seem quite right. Yay for having a diagnosis and good luck with the treatments.

[cjsmith.livejournal.com]

Hee! Yeah, it's a little weird -- as a friend of mine once said, Hallmark doesn't make a card for this occasion. ;-) Thanks, and fingers crossed!

[lkeele.livejournal.com]

Wow. Weird.

Do you have other symptoms, besides the feet? I'd heard knee pain could be associated with lyme, but not feet. What's the treatment? Is this info going to your New York docs?

Luck on finding a way to stop the pain!!!!!

[cjsmith.livejournal.com]

No other symptoms at all that I can tell. O'course, if we treat for Lyme and suddenly I'm smarter, or less annoyed with life, or suddenly I have more energy, or better digestion, then we know what else it attacked.

This info is going to my New York doc as soon as I get to the fax machine. :-)

Thanks!!

[quasigeostrophy.livejournal.com]

Oy. At least you and the doc(s) can pursue something with this knowledge. *crossing fingers for the best results from whatever treatment you get*

[cjsmith.livejournal.com]

Thanks! At least we can do SOMEthing.

[ruth-lawrence.livejournal.com]

Oh eek!

...but at least you know.

I hope they come up with treatment that works.

[cjsmith.livejournal.com]

And it still could be completely unrelated to the feet. We'll just have to hope for the best, and one of these times, the best might even be what happens! :-)

[shoutingboy.livejournal.com]

Well, um, gosh! Hope this is useful information. Just hving an idea what's going on has got to be a help.

[cjsmith.livejournal.com]

I'm trying not to get my hopes up, because realistically, this is just one more in a long string of somewhat-believable-but-possibly-wrong-or-possibly-unrelated diagnoses. But if it helps, I'd be SO HAPPY.

[lesliepear.livejournal.com]

I'm glad they found something. Was it the NY doctor who'd suggested the test?

Hopefully the treatment won't be too bad.

[cjsmith.livejournal.com]

It was my new CA gynecologist, oddly enough, who suggested the test. (She has seen people with unexplained pain in or near joints, who have tested positive for Lyme despite no classical symptoms, and whose pain has responded to treatment of the Lyme. Weeeeird.) I did FAX the results off to the NY doc.

Fingers crossed for the treatment. I'll find out more the day after tomorrow.

[jtidwell.livejournal.com]

Wow! You finally have a cause! (Potentially, I assume.) Congratulations on that aspect of it!

But Lyme sucks. My thoughts are with you and your doctors, as you work through this and figure out some courses of action.

[cjsmith.livejournal.com]

Yes, potentially. Tomorrow I'll ask Dr. M for her rough guess of the probability here. (She may not answer. Doctors keep doing that, annoyingly enough.)

Thanks!

[cme]

I'm very late to this party, but yay, boo, etc. :) I've totally fought with the Disease Without A Name, so you have my sympathy on the ambiguous excitement.

[cjsmith.livejournal.com]

yay, boo, etc.

Ha! That sums it up perfectly, doesn't it?

My sympathies on the Disease Without a Name. That kind of thing truly sucks. I hope you're getting the help and the answers you need.