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Saw local immuno. today...interesting testing


eljomom

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I had myself a wreck going to the appt. today. Not knowing what to expect, and getting what I expected. A blank stare, after reading through my dd's notes, and "What can I do to help you?" I really, at that point, wanted to just find an "EASY" button, push it, and be on my way. So I tried to start the dialogue, and asked what he knew about pandas, after giving my first few symptoms (thinking, this guy probably thinks I nuts...which I am....telling him about tics, ocd, handwriting issues....). He said he knows about it, but is not an expert. He trained and NIH and had never heard of Sue Swedo (but wanted her name so he could call her!). Also wanted to read what I printed, and gave me his e-mail and told me to remind him on Monday "Did you read it yet?"

 

Anyhow, he said what he has to offer, is looking at her immune system in a way that he says should have been done a long time ago, after she'd had pneumonia 2 of the 4 times she's had it in her young life. I told him that my dd seems to get sick much less now that her pandas symptoms are worse....anyhow, he said the Immune panel, IgG levels, etc. is great for a once-over. Good to have done. But that he is going to look at her immune system in a way that will hopefully tell WHY it is acting the way it is. Over-acting, under-acting. He mentioned that he's seen some patients of a doctor up in Connecticut. I showed him the list someone e-mailed from Dr. B's testing, and he said he'd seen it. I asked about many of the tests that were recommended here, and he is doing some of them. He said he wants to do this, and then see where to go next. When I asked about viral panel, etc., he said he was not going to chase infections. If this is an immune system error, we want to see WHY it's having the errors.

 

I also asked about allergy testing...he said that is a small potato and that we would do that if we turn nothing else up bigger. I asked about IgG food testing. He said they did a study with people with peanut allergy, to see if they had IgE or IgG, or something like that. He said that it showed that "allergic" kids had IgE, and non-allergic people ALL had IgG to peanuts. Basically, if you eat a bunch of hamburger, it will show that you have IgG to beef. That might explain why when people get IgG testing done, they are often high in the things they eat the most, and it's explained that we "crave what we shouldn't eat," when really we have more IgG to it BECAUSE we eat it. OR, it might mean that IgG causes just a different type of allergic (or sensitivity) response...that latter part is my own thoughts.

 

So what tests did he run, with 6 vials of blood, to needle sticks, extra water, and down to the last drop of blood (literally)? I have no flippin' idea! I do know that he's looking at B & T lymphocytes, NK cells, etc...and C3 and C4.

 

Not sure what he'll have to offer us, but if nothing else, I hope my dd's situation can give all of us more information about this. He says if there is anything questionable, he is going to refer us to some guys in Fairfax to go further in labs.

 

Will keep you posted.

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I also asked about allergy testing...he said that is a small potato and that we would do that if we turn nothing else up bigger. I asked about IgG food testing. He said they did a study with people with peanut allergy, to see if they had IgE or IgG, or something like that. He said that it showed that "allergic" kids had IgE, and non-allergic people ALL had IgG to peanuts. Basically, if you eat a bunch of hamburger, it will show that you have IgG to beef. That might explain why when people get IgG testing done, they are often high in the things they eat the most, and it's explained that we "crave what we shouldn't eat," when really we have more IgG to it BECAUSE we eat it. OR, it might mean that IgG causes just a different type of allergic (or sensitivity) response...that latter part is my own thoughts.

 

EljoMom - so glad you had this appointment and I am hoping this will give yu a few more answers and a path to follow.

 

I am curious about the IgG allergy - did he give you a name of the study that he was talking about? if you could get that I would be very grateful. We've done IgG in the past and I was considering starting it up again.but I would love to read more.

 

Thanks so much for sharing!

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Our immunologist said pretty much the same thing re: IgG and IgE food testing.

Very interesting. We have to do food allergy testing soon here with Ian (allergic to dairy) and I am going to be asking her a lot of questions about some of this stuff too. Let us know what you find out!

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I'm not sure if this doctor will be able to help us, really. But who knows, right? He definitely doesn't know a ton about it. I told him about the Cunningham test, showed him the results, and he said he would have no idea how to interpret the results. He also said the same thing that the other neuro. we saw said about antineuronals...that if you tested 20 women walking down the street...healthy women...there would be a number of them who had antineuronal antibodies. This gets back to the whole BBB thing maybe?

 

kimballot...when you say "starting up IgG" do you mean IgG therapy? I don't think that's what he's talking about. It was testing IgG levels to certain foods vs. IgE levels. But if you were talking about IgG levels, I will ask him about the study at next visit.

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Hi - just an aside on the IgG allergy testing.. you'll find that conventional immuno drs hold no store whatsoever with IgG (in my experience) whereas naturo and integratives hold way more with some really putting store in it..

 

when listening to both sides and also had a couple of middle of the road drs agree - what seems to be shown by IgG is indeed normal folks reaction to foods but that some people do actually show higher lab results to certain foods than other folks and this could be that, yes, they stuff pizza like there's no tomorrow or that their gut is leakier than other peoples.

 

So, what high IgGs, and many of them, may be showing is a particularly poor gut barrier and yes while this is a 'normalish' response, if you're trying to lower overall imflammation, getting those currently offending items out of the diet or lowering the amount ingested could help with sytemic inflammation until you get the gut back in shape and doing it's job....

 

difficult bit is.. I read an article by somebody at Bastyr University where they sent some blood to various labs, did it blind and double sent to look at the results. If memory serves they did three labs. Only one got close with results on both occasions. basically the other two labs sent differign results on the same blood.

 

We still went ahead and did IgG for both our PAND(A?) kids. We got some super highs and some other middle ones. We knocked ou tthe super highs and lowered the amounts eaten of the lower ones but only while we worked ovdertime on their guts and then added it all back in when GIs looked better.

 

 

Sorry.. one more aside :-0 I've also read that if you have history of in the family or know for definite you got a celiac gene, then you should probably avoid gluten if you got a crap GI and after a stomache flu etc...cos same applies.. stuff gets thru giant gluten proteins trgeer the inate genetic susceptibilty.. dunno if it's true but it made sense when I read it...

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