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jeremyssmith

Cunningham Panel value

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For a new onset of symptoms (going on 5 weeks now), what is the consensus on the cunningham panel? Pediatrician is not opposed to ordering it- but as with anything is skeptical if it has any value this early on. 

Initial Strep ASO was only slightly eleveated, and response to Augmetin thus far (9days in) has had minimal effects.

My thought is that we're only a few weeks in, and we have very little invested time/money/medications in treatment thus far- so if CP can confirm PANS/PANDAS, then we at least know which way to go with treatment. From what I've heard though- is the CP doesn't really confirm anything, because skeptical Drs are also skeptical about the CP.

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I struggle with the Cunningham Panel test as well. After years of doing other blood work tests (strep, lyme, mico, etc.) and getting mixed results, I did the Cunningham Panel test for my DD (12) last year. She did come back elevated on the Anti-Tubulin and CAMK ranges, but nothing changed in her treatment approach with my PANDAS doctor (who is a psychiatrist who treats PANS/PANDAS). Since we don't really know the exact infection that caused the elevated ranges, we're still trying various supplements, antibiotics and herbs to tackle it. My PANDAS doctor has never indicated that certain ranges on the test determine specific treatment options. I haven't even told my daughter's pediatrician about the Cunningham Panel test b/c she does not believe in PANDAS and feels the PANDAS doctor I'm seeing is not very credible. I'd be curious if other people out there who see very reputable PANDAS doctors at hospitals have any input here.

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The Cunningham results (high anti-tubulin) confirmed our inclination to continue with HD IVIg in the hope of treating autoimmunity, "resetting" the immune system.  Apparently anti-tubulin is associated with demyelination.  However, that result was three years into PANDAS.  The first result was only high CamKII.  My understanding is that this is a common change over time, CamKII falls (it fell a bit from the high result when we ran the Cunningham 6 months into PANDAS, but not all the way back to normal) as some of the others in the panel increase.

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@jan251 - What does this "common change" decreasing CamKII and increasing Anti-tubulin mean?  We have done the CP twice - first in August 2017 and now Feb 2019. 

D1 stayed same at 4000, D2 same at 4000, ALgm1 went from 160 to 320, anti-tubulin from 1000 to 2000,  the CamKII went from 131 to 113.     No one has been able to tell us what this signifies.  We have been told that the CP is proof that there is an auto-immune antibody mediated issue.  We ordered the 2nd teat to provide current proof in order to request PEX.

DS (23) has been under treatment with abx, supplements, paleo diet, and Nsaids for strep and lyme with several co-infections for the past year.  Additionally he had tonsils and adenoids removed in Dec 2017 and has had two rounds of HD IVIG - in Aug 2018 and Nov 2018 - no effect.  He has eradicated most or all of infectious agents (myco stays high - 800 as do ASO titres 550, but asymptomatic) but still has neuro-psychiatric symptoms of severe anxiety, depression / apathy that seems to wax and wane but is always present. Hew is unable to finish college or hold a job or even interact with people.

We are trying to get PEX as we feel we need to remove the existing anti-bodies and then try a few rounds of IVIG to "re-set" immune system.  We are waiting to hear if PEX will be approved.  WE know IVIG is not - 3 appeals, all denied.  Young adults are supposed to be easier to get PEX but we will see.

Any insights?

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