Mayo Clinic T-Cell Phenotyping Test #89319

[cab40]

To be honest I forgot about this test. No never got it done. I never understood why Dr. T told us to get a test that was impossible to obtain. I tried every which way and even called Mayo Clinic in Rochester, MN. I basically had to be there to have the test done.

 

I am sorry about your situation. I have been with my son abd daughter. Luckily, I switched gears from seeing only PANDAS dr's such as dr T and Dr. B and found 2 fantastic Lyme Literate dr's who really understand infections in general because my kids weren't only ailing from strep bacteria thus focusing purely in strep was not getting my kids well. We were in a cycle @ best where we had horrible weeks and then a few better ones. Finally exploring other bacteria, we got to the root of the problems and the kids are so much better. We finally felt we were getting somewhere and not stabbing @ things in the dark. Dr. T was VERY kind to us when he was REACHABLE but he really only got the pANDAS end of things and acted shocked when we figured things out and explained the other bacteria infections causing the autoimmune response. I could name dozens of other parent who had similar stories to mine and whose kids are now thriving and regaining their childhood's back b/c their parents finally said, I need to explore another angle/ method of treatment.

[cab40]

Lyme cofactors?

Edited March 23, 2012 by cab40

[Christianmom]

cab40--

The test needs to be run through a local hospital that can "spin" the blood and must be sent to Mayo Clinic (LabCorp can't run it). Most hospitals should be familiar with how to ship blood to Mayo Clinic. Mine was. Be careful, though, about cost. Make sure your insurance will pay for it. I believe the test is not FDA approved, so I think they don't have to cover it if they don't want to. I would get preapproval if cost is an issue. My insurance tried to fight it, but in the end did pay. I think it was several hundred dollars.

 

I did not really understand the test, but Dr. T did say it showed a slight immune deficiency. I don't know whether the results will help get IVIG or PEX covered as I am just beginning to cross that bridge--appointment with Dr. Elia on Wednesday. I'll let you know if the test results helped.

 

But your son may very well test differently than mine away, as my son overall is not an immune deficient person. So Dr. T may find this test much more profitable for your son. So if I were you, I would check to see if it's covered. If not, ask Dr. T if he feels it's absolutely necessary. Possibly he can justify IVIG without it. It is not a test that a lot of doctors run as you can see from the responses to this thread.

 

You are in my prayers. Hang in there. Things will get better.

[cab40]

Sounds difficult!

Edited March 23, 2012 by cab40

[Christianmom]

Dear Christianmom,

 

Can you tell me when you had this test done? Was is recently; sounded like awhile ago. Thanks. Also yes, talked to Dr T yesterday still have not gotten his lab slip yet. We have no one else to run these or I mean order; suggestions?

 

C (AZ)

 

I think it was about 6 months ago. Dr. T can take a long time to send scripts--sometimes a week. He is EXTREMELY busy. Trying e-mailing or calling him this afternoon. Friday afternoons are usually good for him.