Topic: Cunningham Panel Results- help with interpreting
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My 18 year old son's results are just in. I have an appointment at 4 to go over results with Lyme ILADS doctor. I believe this clearly shows PANS. What do you think? 2 of the tests are incomplete due to temporary manufacturing supply problems. Hope those 2 tests are coming yet. He did have acute onset psych issues after a virus or food poisoning 4/22/10. His personality changed overnight. Got better with IV for 9 months. Now struggling.
Dopamine D1 at 8,000 norm range 500-2,000 shows high yellow TUB at 4,000, norm 250-1,000 CaM Kinase II 1t 157 range 53-130 Dopamine D2 incomplete Lysoganglioside incomplete
New neuropsych testing showed issues with memory and attention that are debilitating. Will be switching to new psych and new therapist. Hoping ILADS doc can treat PANS. Thanks for any help you can give! Kari
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Kari, I don't think many here are familiar with this test, I checked you also posted on the PANS board, they are brilliant.
My dd had the test 3-4 years ago now, and her CAM score was 175, which is high PANS.
Not sure if the ranges have changed now that Cunningham is running the test out of her lab, but, our test had a detailed graph about the range,
indicating 'not likely' 'high likely', etc. Also, I know you paid a good penny for that test, I'd call the lab and ask about the graphing piece for his 157 score.
Also, the PANS board has a great search function, you could try searching high dopamine D1 and see responses...
Do you see OCD? Tics? These tend to be the hallmarks (among other things!) Anyway, HTH a little, S
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I don't see typical OCD but obsessions. NO tics but now they say a movement disorder counts. He has a tremor in his leg. When Cunningham spoke at the ILADS conference and was interviewed for streaming, I felt like she was speaking to me. I wasn't educated on PANS at all. I have a graphing piece but no where does it say highly likely like I have heard, but moves from green to yellow to red. I will be learning more tonight. I appreciate your reply.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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