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texlag70

Cunningham Panel - Really High Tubulin?

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Hi everyone:

 

This is my first post and I've been searching and reading a ton of the older posts, especially regarding the Cunningham Panel test that's finally been released as a diagnostic tool. Looks like a lot of you were able to participate in the original studies too!

 

We just got our Cunningham test back for my son and it says "likely" but I'm curious about one particular piece because we had a higher result.

 

D1: 2000 (normal range 500-2000/mean 1056)

D2: 2000 (normal range 2000-8000/mean 6000)

Lyso: 80 (normal range 80-320/mean 147)

Tub: 4000 (normal range 250-1000/mean 609)

CaM: 151 (normal 53-130/mean 95)

 

He was on azith for about 3 weeks when they did the blood draw - at about two weeks though, he lost the vocal tics and some major OCD issues (need for symmetry, repetitive behaviors, fingers/toes biting/picking). He still has some sensory issues (light and sounds) and anxiety. He was also tested for Lyme and it came back IGX and CDC positive on the IgM Western Blot.

 

I'm seeing Tubulin linked to sydenham chorea but his number seems really high. Does anyone have any additional info?

 

http://www.ncbi.nlm.nih.gov/pubmed/17513792

 

Thanks for any info/thoughts - Not sure that it really matters but you know how moms can be! ;-)

 

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No info but I can tell you this is a nearly identical result as my DS. We had it done in the study back in 2010. Tics and adventitious movements have never been his main presentation of PANS. He had blood drawn for the study about 6 weeks after starting biaxin for PANS. He was not ticcing when blod was drawn but he had been ticcing quite badly when diagnosed a little more than a year after the symptoms started.

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The numbers look like the range for pandas.

For pandas they are not exceptionally high, they are in pandas range.

 

Did you read Cunninghams paper from 2012 on Tubulin as target in syndendam chorea? Did it say what the anti Tubulin was for that group? SC is usually a little higher for anti neuronals and cam k than pandas. Cunningham used to include SC vs pandas levels for cam k in the report when it was part of research study. But now to find it you actually have to read her old papers.

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Nickelmama, was your son ever tested for Lyme? In the paper above that I'm re-reading it says Tubulin reacted at 55 kda...our IgG WB showed positive for band 58 so I wonder if they are related.

 

Norcalmom, I haven't seen anything with regards to SC and specific levels of tubulin...

Edited by texlag70

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Texlag- he was tested for lyme they Quest. He was band 41 positive and positive for ehrlichia and anaplasma. Doc thinks he also has babesia. I have not done Igenex testing. May do that after treating for the coinfections. I'm going back and retreading that article. I did not catch that about Lyme and tubulin.

 

The Cunningham paper i read says high tubulin and CamK is associated with SC. DS CamK was not SC range but he's had adventitious movements. If he gets them again, I'm taking him to the neurologist for documentation. Dr K saw them. I have them on video.

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Oh no, that was me reading into the paper weird I think...bands and Western blots but tubulin is always supposed to register at 55 kda and my mind went automatically to Lyme and band 58...No idea if they are related...

 

Our CaM KII isn't close to SC range either...I just need to find time and call the lab I think...

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