Allergy testing

[cjsmith]

I went in today to be tested for allergies to 1) serotonin and 2) lots of common foods.

I'm apparently allergic to every substance they tested. This includes about 80% of what's legal for me to eat, on this diet that's already so restrictive I can barely have a social life.

The woman who did the testing tried to tell me to eliminate these foods for six weeks, or at least make the portions of them smaller. I told her I was already down nine pounds and I wasn't going to eliminate a damn thing.

She said maybe I could substitute. I pointed to where the substitutions sheet suggested other things I was either allergic to or couldn't have on the current diet. She suggested things I hadn't been tested for. I said looking at the sample set, it's reasonable to infer that I'm allergic to many of those too, and since we don't know which ones, it's kind of pointless.

I told her I felt fine other than the joint pain. She said chronic food allergy can cause inflammation that could explain the joint pain. I said my pain had never responded to anti-inflams of any kind, including some pretty strong ones, so it was reasonable to conclude my pain is not inflammatory in nature.

So I'm ignoring it.

There's nothing else to do really.

I want my $625 back.

I am seriously considering never going to another doctor again. All they've done for me is take my money, make my life miserable with "noninvasive" approaches, and fail to get results. I HAVE HAD IT.

Comments

[chinders.livejournal.com]

Ugh. That sounds really awful. *offers hugs*

[cjsmith.livejournal.com]

Hugs are great. Got a flamethrower I could borrow, too? ;-)

[msmichelle.livejournal.com]

I'm so sorry, CJ.
FWIW, my husband has moved on from his doctors for rehab of his knee. Sometimes, they just don't have solutions.

[cjsmith.livejournal.com]

Yeah. I wish they'd be honest about that before slurping down $30K+.

[dawnd.livejournal.com]

Who are you seeing? Harmony Health? Have you compared notes with klrmn yet? About 18 mos ago she was diagnosed as allergic to everything under the sun, too. Some of it she's worked with by gradually phasing things in or out, most of it she's ignored. Also, have you considered consulting (or have you already consulted) with a Health At Every Size doc? HAES has a strong "mental health counts too" component, and I think someone strong in it would be less likely to make stupid suggestions to you.

I'm sorry the health professionals are failing you. I wish you strength, peace, and miracles.

[cjsmith.livejournal.com]

diagnosed as allergic to everything under the sun, too

Maybe they do that to everybody. I tell ya what, I'm not doing one thing about it. I do not suffer from chronic fatigue nor do I suffer from any of the eight million other things this would cause. I don't think the person who did the testing is outright lying to me, but I bet it's close.

[hitchhiker.livejournal.com]

man, that sucks :( i'm with you, though - it seems dead unlikely that you're *actually* allergic to everything and its dog. *hug*

[cjsmith.livejournal.com]

Doesn't it? Wouldn't you think I'd have LESS energy and vivaciousness and vigor rather than, oh, always been way above average on those for my age? Wouldn't you think I'd have SOME other weird health problem, not just mysterious symmetric pain in four small joints that show no damage?

I won't pretend I had no reaction to serotonin. That made a big ol' red splotch all over my shoulder. But the rest of it can go hang.

[datagoddess.livejournal.com]

How the hell can you be allergic to serotonin, when your body uses it for digestion?! Your digestive system uses more of it than your brain does!

If I had a flamethrower I could loan you...

[cjsmith.livejournal.com]

Oh, people are. They usually wind up with depression, but hey, there've been times I thought I wasn't far off. (Although if talk therapy helped, then what does that mean about the brain chemistry?)

That's the one I totally had a reaction to, by the way. Splotch nearly the size of my palm, all red. I'll give 'em that one. But the rest of it sounds about as plausible as voodoo to me right now.

[ohhjuliet.livejournal.com]

Ugh. I have no idea what to say, but I'm so very sorry you're having to deal with this. *hug* You're in my thoughts and prayers, always.

[cjsmith.livejournal.com]

Thank you. I do not know why I was dealt this particular set of cards, but I'll admit that right now I want some words with whoever shuffled the deck.

[hot-turkey.livejournal.com]

Holy suckaceousness, that's awful. *hugs* The whizbang technology of modern medicine generally looks far more impressive from a distance, progressively less so as it's brought to bear on one's own problems, I've found. Hype is everywhere.

[cjsmith.livejournal.com]

More impressive from a distance is an excellent way to put it. There's a reason wondrous cures make news. They're rare. Just like most news, they aren't the kind of thing that usually happens to Joe Schmoe next door.

[cme]

You have my utmost sympathy. Doctors are fuckers and diets are hell.

And personally, I'd be moved to question the results of the tests. Allergic to *everything* they tested for? And been not particularly symptomatic for years?

[cjsmith.livejournal.com]

Yeah, isn't that just a little iffy? When I stop to think about it, it's nearly as iffy as "had untreated Lyme for 17 years with no major organs damaged".

[kent4str.livejournal.com]

Totally sucks. Maybe you're allergic to the testing equipment itself.

I thought my life and diet sucked, but reading yours makes mine seem petty. At least it does to my partner...

Hang in there, and don't give up. It's expensive, but so are funerals.

[cjsmith.livejournal.com]

I'm pretty sure those needles were sterile! :-) But I don't know what else is going on here, and all my intuition is screaming THIS RESULT IS NOT RIGHT.

Funerals are CHEAP if I don't have to be the one to pay! But just the same, I'd rather not be the guest of honor at one for a good long while. I'm not done with my little trip here on earth yet.

[layer.livejournal.com]

:(

last time i was tested for food i didn't show up as allergic to anything except white potatoes which i am not allergic to.

[cjsmith.livejournal.com]

The one thing I'm thinking might "fit" here (in the sense that me being allergic to everything but full of energy doesn't "fit") is that my immune system is God. I very rarely catch colds or flu. If I do, my body fights LIKE CRAZY - massive reactions and what must be huge mobilization of resources. This kind of pattern fits with a bump at every needle-prick. But I'm not at all sure it's a bad thing! :-)

[ken_r]

Wow, that's bad. (And really, really sucks if they're actually right, as well as stupid.)

Was the woman doing the testing actually a doctor or nurse? Sounds like kind of a dumb suggestion from a supposedly trained professional.

[cjsmith.livejournal.com]

I don't know her title. I know she's not a doctor. I'm supposed to go over my results with my doctor at the next appointment -- if I bother to make one, given how annoyed I'm feeling. :-)

[hnybny.livejournal.com]

You know I can sympathize with never having a good explanation or diagnosis for anything. As for the allergy testing, some of the results could be false positives.

http://www.medscape.com/viewarticle/493880

[cjsmith.livejournal.com]

It wants a login, boo hoo! Do you know a randomly shared username and password for it, or should I pretend I'm a medical professional and register?

[jupiter29.livejournal.com]

Awww. I completely understand everything you're feeling and I wish I had some great advice or even encouragement. Sadly, I don't. But I did want you to know that reading this post and hearing all the pain and frustration come through made me so sad for you (er, wait, that just sounds mean! Hold on, I'll make it come around!). And while I am basically a nice guy and wish most everyone well, I don't normally have that sort of emotional reaction to stuff I read on LJ, unless it is someone I care about very much.

So although it doesn't apply directly to this post, I wanted you to know that you are a very special person, enough so that it comes through to someone who barely knows you. I recognize that doesn't solve all your problems, but it does suggest to me that the energy you put into making your life better (however you, ultimately, define the word "better") is definitely worth it, no matter how rough it may seem at times.

Hang in there, CJ. My thoughts are with you. (*hugs*)

[cjsmith.livejournal.com]

Wow, thank you. This --

it does suggest to me that the energy you put into making your life better [...] is definitely worth it, no matter how rough it may seem at times.

-- comes at just the right time. It's a good reminder.

(*hugsback*) and thanks.

[mactavish.livejournal.com]

It looks like they tested you with the test that finds everything, rather than the test they used on me, which didn't show me positive on the one thing I'm absolutely certain I'm allergic to. :(

Damn, that sucks. I wonder if it was a problem with the test, indeed, or if you're really that allergic.

[cjsmith.livejournal.com]

I can't IMAGINE I'm really that allergic. Aside from my feet I'm really rather healthy! Allergies to that much stuff -- stuff I'm eating ALL THE TIME -- should give me, oh, chronic fatigue or adrenal exhaustion or something. I'm just not seeing how it fits.

I'm almost tempted to go get evaluated at an independent place, except whoa $$$$.

[lkeele.livejournal.com]

*sigh*

How very helpful.

Mind if I growl in the general direction of the nonhelpful medical professional?

Reminds me of a movie I was watching, a Japanese anime, Grave of the Fireflies. A boy is taking care of his little sister, they have no food, nothing, and she's very ill. He manages to get her to a doctor, and the doc says "She's suffering from malnutrition." Duh, like the kid didn't know that. He asks for something to help her, some medicine, anything, and the doc says, "Get her some nutrition. Next!"

Very helpful, and kind, and all sorts of sympathy going on there. Rather like your doc.

*hugs* to you, Ceej. After some of our recent experiences with Tim, Rondo's realized that one of the reasons health is so important is because if you're healthy, you DON'T HAVE TO DEAL WITH THE FUCKING MEDICAL ESTABLISHMENT, which is it's own ring of hell, all in itself. Not that there aren't good docs, I've met some incredible ones, but the whole thing is a pain in the ass anyway.

More hugs. Damn.

[cjsmith.livejournal.com]

Yeah, this tester really had no clue of my history, so she can be forgiven for being a bit stupid about some things -- but I was in NO MOOD to deal with that kind of crap, not when I'd just gotten what I at first thought was devastating news.

Rondo's realized that one of the reasons health is so important is because if you're healthy, you DON'T HAVE TO DEAL WITH THE FUCKING MEDICAL ESTABLISHMENT

YES! That!!

[ckd]

That's just plain sucktastic, CJ. I'm sorry.

Hugs for you; kicks in the rear for them.

[cjsmith.livejournal.com]

Thanks. Honestly, I'm starting to realize that either this is just plain wrong or it's completely irrelevant. (Well, except the serotonin, which had a very noticeable reaction; I may pursue that.)

[lesliepear.livejournal.com]

That sounds awfully suspicious to me. I had allergy testing (and my husband) at our allergist. We do have allergies, but not food related it.

When I had mine done, they used one control item (histamine) - which I did react to, I was supposed to. And 20 other things were tested including cat hair (which I was NOT allergic to - the allergist circled it to show DH) and mold (which I was allergic to). I wonder if too much at once doesn't work AND that your system was messed up with the lyme routine (antibiotics, yeast stuff, diet etc).

By the way, I still wouldn't entirely rule out the physical testing with the doctor in NY.

[cjsmith.livejournal.com]

Hmm, no control item for me. I wonder what that means in terms of the test.

No, I don't wonder. Let's just say my own body's histamine reactions were going particularly strongly right then. I'd been on antihistamines for over a month and I'd had to just quit them; I'm on a gazillion drugs, some of which I might be reacting to; anything. The control item would give a baseline.