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

[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.

[dawnd.livejournal.com]

I have chosen not to go see them, because I'm not interested in the answer I'm fairly certain that I'll get. My sense is that they have a very simplistic answer to all of the world's ills (or at least every woman's ills). It just doesn't happen to be the one the REST of the medicos in our country are pushing.

I'm not interested in being strong-armed into Orthorexia. If I wanted that, all I'd have to do is listen to my mother. And of course recovering would be easy, too--just get down on my knees and pray.

[cjsmith.livejournal.com]

*eyeroll* about the praying. That's another side of good old "you haven't been thinking positively enough." People like that need to see some real problems that saying la la la won't make go away, like maybe a federal seizure of property or multiple sclerosis or death threats from a crazy junkie or something.

I gotta hand it to Harmony, though, that Dr. Metzger is Lyme-literate. I don't know where I'd have found another one of those.

O'course, that's presuming I even have Lyme. I tested positive on one band. ONE BAND. Nobody in the universe except IGeneX would call that a positive result. Most other labs need FIVE. I'm not disputing I've been exposed to the bacterium at some point in my life; antibodies don't just randomly grow. But beyond that one fact there's nothing conclusive here.

[dawnd.livejournal.com]

Indeed. Sounds... iffy at best. Did you do confirmatory tests? One band,once, just doesn't sound like enough.

And yes, *eyeroll* on the praying thing. See, I wouldn't have any allergies to dust anymore if I'd just "stand against the Devil," dontchaknow.

[This is my "reaching" icon, since I think there's a lot of reaching going on in this diagnosis, by my mom, etc.!]

[cjsmith.livejournal.com]

Yeah. I don't have any belief right now that I know what the answer is, but I have a really strong gut feeling about what it isn't. My gut says it isn't prayer and it isn't me being allergic to every molecule known to man. Lyme, it may or may not be. I have little data.

[ladycelia.livejournal.com]

Is this the place in Menlo Park? If it is, they seem quite fond of Lyme and allergies as the cause of everything.

[cjsmith.livejournal.com]

Los Altos. They used to be somewhere else under a slightly different name, but I don't remember where.

[ladycelia.livejournal.com]

I'll bet it's the same group. Lyme and allergies...I've heard that before.

BTW, I have a flame thrower (archaic weed burner type), but it's in storage. If you really feel the need, let me know :^)

[cjsmith.livejournal.com]

I bet you're right. For all I know, this particular physician had a major breakthrough when her own allergies and Lyme were diagnosed, and once you've struggled with something for a really long time and had a breakthrough, you look for it in everyone else.

[hopeforyou.livejournal.com]

I would have helped you find another Lyme-literate physician if you needed one. I don't see Dr. Metzger. I see Dr. Stricker in San Francisco. He deals only with the testing, immunology, and infectious disease treatment from a scientifically proven point of view, with some discussion of experimental treatment (that has had limited scientific testing, but some).

I go elsewhere for alternative adjunct treatment when I can... or try to research it and take care of it myself. I am my own lab rat.

I was positive on more than one band on Igenex. I was positive on 4 or 5 (my original test is in storage) bands and I had 2 of the vaccine bands light up.

It IS possible you don't have Lyme, FWIW, but maybe you do... that's the bitch of this disease. One test isn't enough though... if it's serologically progressive, you should see a change in those bands as you're treated. ALSO... did you get your CD57 test and other immune system markers tested? That should be a confirmation test for presence of infection and antibody response. Check this page out: http://www.anapsid.org/lyme/strickerpanel.html

CD57 isn't about the presence of Lyme -- it's more about how you are responding to treatment in the presence of infection. All it can give you is additional data, but that's better than not enough data.

[cjsmith.livejournal.com]

I would have helped you find another Lyme-literate physician if you needed one.

Well, 'cept I didn't know I needed one until I found one and got sent for a test. ;-) I think you're right that there's a chance I don't really have Lyme any more. I'm guessing that the only way I'm going to be sure is to watch and see if I respond in any way to treatment. I already have some somewhat-supporting but not conclusive information: my total lack of a Herx reaction.

No, I didn't get CD57 or other immune system markers. It sounds like that would be done after I'm in treatment for a bit...

[dawnd.livejournal.com]

FWIW, klrmn actually has symptoms that she's trying to isolate. They're mostly emotional stuff. Her headaches were greatly improved when she went off corn, and her intestinal symptoms were further improved when she eliminated milk, especially cow's milk. Most of the rest of the dietary changes she has tried have had mixed results at best. She feels she has gotten some good out of the drops for various other things, including airbornes, serotonin, and LH. I will say that I think that she is more emotionally stable since looking into all this, though maybe not as much as I would have liked to have seen given how much trouble and expense it is for her.

YMMV, of course, but you might at least want to commiserate.

[cjsmith.livejournal.com]

actually has symptoms that she's trying to isolate

That's rough. I feel for her. Reading this paragraph I suddenly realized that the thing orthorexia or even you're-allergic-to-everything COULD be good for is hypochondria. If there AREN'T symptoms, telling somebody to eat more veggies keeps the person nicely occupied and mostly out of harm's way. But when something's really going on in there... *sigh*

[dawnd.livejournal.com]

Indeed. If there really isn't a problem, but the person has a need to be occupied about it, then following strict rules might be just the ticket. For those of us with a life to live, however? Not so much.

[cjsmith.livejournal.com]

Amen to THAT!

[inflectionpoint.livejournal.com]

I'm sorry that is what you were told.

I'm curious about trying to decipher their test results with you, if you are willing. I'm willing to try and decipher what they are testing and WHY, and try to figure out how they arrive at the conclusions they do. I'm somewhat concerned about their methods.

[cjsmith.livejournal.com]

Yes, thank you! That would be wonderful. That is a spectacularly great offer and I appreciate it a lot.

I don't know if I have enough good hard science to be useful to you; I don't have any kind of writeup with numbers on it, and I may not have any kind of description of the process or the compounds used (beyond "I got lots of transdermal shots in my shoulders"). I'll look at the handouts I was given... when I'm a bit less angry. :-) And I deeply thank you.

Do you mean you don't have a copy of the results?

[moriamerri.livejournal.com]

Not sure I followed what you just said, but um, if you are saying that you don't have the test results on paper, that is easy to fix. Call and ask for a copy. Not only do they need to give you one, they ought to be nice about it..... (although not all are. I had to sign a bunch of stuff to get my chest xrays.)

Re: Do you mean you don't have a copy of the results?

[cjsmith.livejournal.com]

They gave me a handwritten sheet with names of substances and check-marks next to them. What I don't have is anything quantitative: levels of dilution, baseline against which reactions are compared, anything like that. That may be in my record. If it is, I'll almost certainly be able to get it. But until I do, I really can't take inflectionpoint up on her offer, not with the goofy handwavey info I have.

[hopeforyou.livejournal.com]

The doctor should have given you a detailed copy of your results with an explanation of what they mean and what reference intervals are. I have a copy of every single result from Igenex tests and other tests that my doctor ordered. They explain the bands, the tests, and how one matches the CDC requirements and one matches the research requirements. They explain the difference between IgG and IgM. They're quite detailed, and I'm surprised your doctor did not give you your own copy.

I'd ask for copies of everything they've done/prescribed/suggested and take them out and get a second opinion somewhere else on this stuff. With what you said about the allergy testing and their attitude... I'm afraid they might be taking advantage of you. It wouldn't hurt to see what someone else says.

[cjsmith.livejournal.com]

The doctor should have given you a detailed copy of your results with an explanation of what they mean and what reference intervals are.

I don't know what the gold standard is for an allergy testing report, but I'm pretty sure that what I have isn't it. I do have the Igenex results with the explanations of the bands, IgG, IgM, etcetera. Those they gave me.

I may go get a second opinion or even a second test on allergy stuff. But honestly, right now I'm not even taking the allergy results seriously enough to do *that*. :-) I'm blowing it off. :-)