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 Pittsburgh Compound 
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Joined: Thu Mar 12, 2009 1:23 am
Posts: 26
Post Pittsburgh Compound
Here's a question for you seasoned Lewy advocates. My husband, aged 48 has been seeing a neurologist in our local university hospital. There were some concerns at first that his symptoms were only psychiatric (though severe) but he showed a considerable decline on neuropsyche tests this year compared to last. They are leaning now toward there being two issues with him: dementia co-existing with psych. The neurologist would like to do a PET scan but my insurance will not cover it so we've been at a stand-still. This year, he mentioned some new information regarding PET scans involving a Pittsburgh Compound. Anyone ever heard of this?


Wed Jan 12, 2011 8:15 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Pittsburgh Compound
Pittsburgh Compound B = PIB. This is a type of dye that is used with a PET scan to detect amyloid, which is one of the proteins involved in Alzheimer's. It's been around for several years.

There's quite a bit posted here about PIB-PET and DLB. Check out the Research section if you are interested.


Wed Jan 12, 2011 8:36 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Pittsburgh Compound
If the doctor could show the insurance company a specific reason for doing a PET with Pittsburgh Compound, would that help sway them?

I get so frustrated with health care availability decisions being made by a for-profit company who has never laid eyes on my loved one! Hang in there! You can see by this board that you are not alone in your struggles.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Jan 12, 2011 11:36 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Pittsburgh Compound
PET scans are very expensive. I know of few insurance companies that will pay for them. PIB-PET is not available at all facilities. Most likely any facility that has a PIB-PET available would likely be willing to enroll someone with suspected DLB into its research program, and would conduct the PET scan at no charge.

My (layperson) understanding is that a "regular" PET scan wouldn't have much value in helping diagnose DLB.


Thu Jan 13, 2011 3:10 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Pittsburgh Compound
Thanks, Robin. That context helps explain the situation.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Jan 13, 2011 11:23 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Pittsburgh Compound
JaneGrace,

I think there's a fair amount posted here about PIB-PET. One post that you may find interesting is this one about a person who got PIB-PET and was found to have amyloid in the brain. It was assumed amyloid = Alzheimer's. In this case, the person had DLB and CAA. CAA is a disease of amyloid.

viewtopic.php?f=14&t=2706

Robin


Tue Jan 18, 2011 9:20 pm
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