Biting the Bullet

[saidie10]

I was fortunate to attend a meeting last night in Dallas and heard Dr. C speak again. Some interesting things are on the horizon!!!! Yipee! She does expect and hope her private lab to be open to the public in April which means CamKinase and AntiNeuronal testing will resume and doctors can start ordering the test again. They are also beginning a study on Lyme as the Lyme positive children in their study scored very similar numbers to the PANDAS patients on their. She said of the children they studied, about 45% of them were true PANDAS (strep appeared to be the only trigger) while the others were also triggered or only appeared to be triggered by other infectious agents like Lyme, Mycoplasma, and influenza.

 

This morning I got to meet with Dr. R again and spent quite a bit of time with him going over the boys cases. It has been over a year since we have seen him and he was willing to test our boys and help us. He really has a great bedside manner and seems legitimately concerned about these children. Along with the Labs Dr. I in San Antonio is running and the labs Dr. R is running, we will get updated Immune profiles on the boys, along with titers and screens for other viral and or bacterial infections. We are also going to do the Western Blot on the boys and myself and DH, along with ASO and AntiDNase B, HNK1 (CD57) Panel and Vitamin D levels. Dr. R said best to rule it out as he is seeing a lot of positive Lymes in his PANDAS patients. I have personally pulled tics off my husband in the last 16 years and he informed me that he has had so many he can't keep track. He grew up hunting and fishing so it was not unusual. As for whether or not he has any Lyme symptoms, the only really that could be attributed, but could obviously be symptoms of other issues, is he has arthritic type symptoms in his hands, and has talked to me about blurred vision sometimes as well. He does not ever remember seeing a rash. Anyway, with that, the boys low CD57 which can indicate some type of chronic infection, and my unexplained bowel inflammation for the past 4 years, Dr. R said we need to test. It is better safe than sorry.

 

Still, for some reason, I will be very shocked if it comes back positive on any of us. Who knows?!?!?!

 

Thanks for reading and hope all are doing well

[Iowadawn]

Thanks for sharing this about Dr. C. Were the antineuronal antibody results similar in the Lyme? I have heard that the Cam numbers were similar. So. am I correct to conclude that because other bugs can trigger and cause high results (NOT just strep) it is useful to help dx PANS. It can't be considered just a PANDAS test. It's late---am I making any sense. How is she going to "market" the tests, for lack of a better term. Dawn

[saidie10]

I believe she simply said that Lyme positive kids results on their tests were similar to PANDAS...i am sorry I dont recall if she specified only Cam or Antineuronals as well. I wish I had asked her how they were going to market it...good question. I know she did say she was working hard on getting some important things published so I know that willl

[Orion]

Thanks for sharing this about Dr. C. Were the antineuronal antibody results similar in the Lyme? I have heard that the Cam numbers were similar. So. am I correct to conclude that because other bugs can trigger and cause high results (NOT just strep) it is useful to help dx PANS. It can't be considered just a PANDAS test. It's late---am I making any sense. How is she going to "market" the tests, for lack of a better term. Dawn

 

 

In my DD's case (Lyme, M.pneumoniae) the results were high across the board- especially the anti-lysogangliosides.

[Orion]

Thanks for sharing this about Dr. C. Were the antineuronal antibody results similar in the Lyme? I have heard that the Cam numbers were similar. So. am I correct to conclude that because other bugs can trigger and cause high results (NOT just strep) it is useful to help dx PANS. It can't be considered just a PANDAS test. It's late---am I making any sense. How is she going to "market" the tests, for lack of a better term. Dawn

 

 

In my DD's case (Lyme, M.pneumoniae) the results were high across the board- especially the anti-lysogangliosides.