In the second portion of my office visit with Dr. Rookie, he proceeded to dismiss the veracity of the Cunningham Panel (CP) test:
DR. ROOKIE : The Cunningham Panel — I sent you that paper [ Hesselmark and Bejerot, 2016 https://www.sciencedirect.com/science/article/pii/S0165572817300711%5D Basically they [Swedish researchers] took a bunch of people and gave them Cunningham Panel tests and everyone has an abnormal CP. If you look at the ones where you are abnormal, like the tubulin— the upper range of normal is 1 to 1000 and you are 1 to 2000. You are not that elevated. It’s a huge range anyway. The normal is 250-1000. Everyone has some tubulin. The ranges of normal are so large that being a little bit above that normal range is not going to be meaningful.
Dr. Rookie explained that the Cunningham Panel, in his opinion, was similar to the ANA test that is ordered when lupus a possible diagnosis.
DR. ROOKIE: We test a lot of people for lupus and so we do an ANA and so many people come back with a postive. . . Not very meaningful test result so I’d put the this [CP] in that boat. Which is good news. you don’t want to have PANDAS. You don’t want to have an autoimmune disease. The other thing about PANDAS is that one of the key criteria is that you have to have tics and you don’t have a tic disorder. I don’t think you have that. I don’t want you to think you have that. If you absolutely want to rule out the possibility of an autoimmune process affecting the nervous, we can do a LP and we can sample the CSF and we can look for inflammation and we can look for — which can mean too much protein which means stuff is being broken down we can look for an increase of white blood cells, meaning that they are being attracted to the CNS to fight infection or autoimmune things. And we can look for antibodies. It’s going to be normal. There is a number of specific antibodies that live. . . like the neoplastic panel I see your son had.
I explain to him that I felt sick and that I have had a difficult time convincing my primary care physician team to order tests for basic infections that are known to cause PANDAS: Epstein Barr (“Mono”), Cytomegalovirus, and Microplasma Pneumonia (“Walking Pneumonia”). While I did have a few of these tests ordered– the orders did not involve testing for current infections (revealed by antibodies called IgM’s). The tests only looked for IgG’s (evidence of past infections).
For this doctor’s appointment, I made a list of important topics to cover. In light of feeling sick and being pretty confident that I had PANDAS and that some infection, yet to be determined, was making me sick, I broached the topic of whether anyone in the medical clinic could or would treat me. Here is an important point in my story: My husband had already contacted our insurance company about my positive Cunningham Panel test. They sent a long list of possible providers– in network– and asked us to find a clinician in network. Dr. Rookie’s medical institution is in my network.
Here is the letter I read to and left with Dr. Rookie:
To Dr. “Rookie” (and Department of Neurology): August 8, 2018
I am sick—i.e. in the traditional sense of probably having a bacterial and/or viral infection. This has been going on since March. My body cannot fight it. My thyroid stays enlarged. My lymph nodes are enlarged. I am surviving on high doses (800 mg) of advil once or twice a day. (Or not, and I stay in bed). I also have had neurological symptoms and terrible OCD. I have two known autoimmune conditions: Hashimoto’s and Dermatitis herpetiformis. Two family members and myself test positive on a test that may indicate neuropsychiatric illness. (The Cunningham Panel)Is there anyone in UCSF who is willing to take my case. . . i.e. someone who studies autoimmune encephalitis, neuropsychiatric illness or PANDAS? (My medical records/ MRI and other test results will show what has been ruled out thus far.)My recovery does not “depend” on XXXX’s willingness to treat me. I have been hopeful that a partnership would be possible: for me, out of pocket expenses would be significantly less; for you, as a research institution, I felt like my case could be valuable to you and countless others. Thank you for your timely response.
I read the letter and placed it on his desk. I did my part to (1) ask and (2) document my request. And without delay, we continued with the appointment.
Categories: The story continues