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Posted

I just received an email with these results from Dr. Cunningham. I have read some of the other posts and I still dont quite understand what they mean??

I didnt get the Cam Kinase yet. Thanks to everyone out there for all your replies...

 

 

Anti-Lysoganglioside 2 hours

patient 80

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 500

positive control 8000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 2000

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 2000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

Posted

Short summary is all the numbers were within range for controls -- meaning nothing is dramtically high. If you still have questions, you can send a note back to the lab and they'll try to explain what they know. At the moment, it just isn't known how to treat these detailed antibody tests because we don't have a correlation yet with symptoms.

 

Buster

 

 

I just received an email with these results from Dr. Cunningham. I have read some of the other posts and I still dont quite understand what they mean??

I didnt get the Cam Kinase yet. Thanks to everyone out there for all your replies...

Posted
I didnt get the Cam Kinase yet. Thanks to everyone out there for all your replies...

Michele,

I would recommend you e-mail Kathy Alvarez, the Cam Kinase is usually the first result you get. I'm pretty sure if they have those other results, the CamK is done (might have gone in your spam folder?)

 

Isabel

Posted
I didnt get the Cam Kinase yet. Thanks to everyone out there for all your replies...

Michele,

I would recommend you e-mail Kathy Alvarez, the Cam Kinase is usually the first result you get. I'm pretty sure if they have those other results, the CamK is done (might have gone in your spam folder?)

 

Isabel

 

 

I actually found that with both of our tests that we got the anti neuronal antibody results weeks before getting the Cam Kinase.

 

Ellie

Posted
This might be a dumb question but what does positive control and negative control mean?

Every laboratory experiment uses a positive and negative sample as part of a "run" to verify that the test really is working. Normally, you would never report these -- they are internal measures for the lab that they used the right chemicals and got known answers. Typically they use a prior known good sample and check that the result this time matches the result last time.

 

Buster

Posted

Thanks Buster. Ok.. so while I know I shouldn't even give these results much worry right now since its just for the research and hasn't a meaning yet but several of my son's seemed way off... like the Anti-Lysoganglioside was 640.

 

 

This might be a dumb question but what does positive control and negative control mean?

Every laboratory experiment uses a positive and negative sample as part of a "run" to verify that the test really is working. Normally, you would never report these -- they are internal measures for the lab that they used the right chemicals and got known answers. Typically they use a prior known good sample and check that the result this time matches the result last time.

 

Buster

Posted

I know, I know, not my most helpful answer and I too stared at the numbers for hours wondering what they meant and wasn't it bad or not...

 

All I can say is that my daughter still has

anti-lyso at 1280

anti-tubulin at 8000

anti-D1 at 16000

anti-D2 at 16000

 

and yet has no symptoms now. So while the numbers are interesting, at least anecdotally, they aren't the "cause".

 

Hoping this post saves you some fretting as I certainly did my share.

 

Buster

 

 

 

Thanks Buster. Ok.. so while I know I shouldn't even give these results much worry right now since its just for the research and hasn't a meaning yet but several of my son's seemed way off... like the Anti-Lysoganglioside was 640.

 

 

This might be a dumb question but what does positive control and negative control mean?

Every laboratory experiment uses a positive and negative sample as part of a "run" to verify that the test really is working. Normally, you would never report these -- they are internal measures for the lab that they used the right chemicals and got known answers. Typically they use a prior known good sample and check that the result this time matches the result last time.

 

Buster

Posted

Thanks Buster! I am going to not think about those numbers for now. I will be curious to get the "hard copy" in the mail. It said that Dr. Cunningham will write her remarks on it or something like that... wondering if that means she will try to shed some light on it although I am getting that they aren't there yet in figuring out if those numbers correlate to mean anything in regards to our kids.

 

 

 

I know, I know, not my most helpful answer and I too stared at the numbers for hours wondering what they meant and wasn't it bad or not...

 

All I can say is that my daughter still has

anti-lyso at 1280

anti-tubulin at 8000

anti-D1 at 16000

anti-D2 at 16000

 

and yet has no symptoms now. So while the numbers are interesting, at least anecdotally, they aren't the "cause".

 

Hoping this post saves you some fretting as I certainly did my share.

 

Buster

 

 

 

Thanks Buster. Ok.. so while I know I shouldn't even give these results much worry right now since its just for the research and hasn't a meaning yet but several of my son's seemed way off... like the Anti-Lysoganglioside was 640.

 

 

This might be a dumb question but what does positive control and negative control mean?

Every laboratory experiment uses a positive and negative sample as part of a "run" to verify that the test really is working. Normally, you would never report these -- they are internal measures for the lab that they used the right chemicals and got known answers. Typically they use a prior known good sample and check that the result this time matches the result last time.

 

Buster

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