Cunningham Results are back and not sure about what they say?

[cara615]

Everything was in normal range except for Tubulin which was 8,000 (high range). They could not do the dopamine 2 test because of some manufacturer's shortage.

 

But D1 was in green, Lyso was in green and Cam K II was high end of green.

 

 

thoughts?

 

[Rachel]

How high was the Cam KII? My son was 234 but his Tublin was only 1000. It would be intesting to see if you could find research on just the Tublin and what other illnesses it is associated with. Lyme does come to my mind because I know in the beginning that I found research that indicated these things found on the Cunningham panel did show up in Lyme, and a few other things. This is a scary thought, I know but I wish there was more accurate testing in the Lyme area.

[cara615]

Cam Kinase II was 111 in the normal range. I am googling tubilin titers and Lyme and not finding any correlations. Where did you hear this information?

 

DS tested negative on all bands for Lyme with Labcorp. Plus, he had been on abx for 6 months prior to the test.

 

His immune function is normal so its not like he wouldn't have an immune reaction if Lyme were present in his body.

[Rachel]

I think the it was the Cam Kinase II that was found in Lyme patients but I didn't save the article. I should have but at the time I had just gotten back negative test results on Lyme and the co infections.

 

I wonder if the high Tubilin has anything to do with the gut problem. Might try doing that search. When I do research now, I have started saving the research articles under specific topics. My husbad is amazed at how much I have saved on the hard drive.

[cara615]

I should have an honorary MD with all the research I have. Its crazy really.

 

i still need the D2 titres checked and Moleculara will run that test when they can get the supplies they need. I asked them to not charge me the full $925 for the test. They said no problem, the D2 test is only $40!!!!!!

 

So ofcourse the piece they couldn't do is only $40 out of $925??? I think that is just nuts.

[SSS]

Wow, so no PANDAS/ PANS. How do you feel about that?

 

I was just going over our CamK test (it's 3 years old) as we are having a new consult, trying to get paperwork in order,

I couldn't find anything about the tubilin, although my dd's was normal, and I can tell you I don't think her gut has ever been problem free. I've never heard of anything on this test relating to gut issues.

Perhaps it's related to tics?

I've heard it tossed around that some of these neuronal measurements may indicate a child sides more to OCD, or more to tics- but I think it was more speculation.

[cara615]

SSS the test did not say that he did not have PANDAS/PANS. I think because they were not able to test the D2 titres. I was under the impression that if any of these autoantibodies were in the high range that PANDAS/PANS is indicated.

 

Have you read differently?

[cara615]

Oh and I KNOW my son has PANDAS because every time his brother has strep his tics go through the roof and then subside when his brother goes on abx. There is no doubt in my mind that this is PANDAS.

[SSS]

I thought the CamK II number itself was the indicator of PANS. With our test results, I received a graph with explanations. My test was done through the University, before the new lab was open tho.

 

Also, perhaps if the child is not in a flare, the CamK II number does not register as high.

 

I am really not an expert, just hadn't looked at our test in a long time and thought I'd chime in.

Edited June 12, 2014 by SSS

[cara615]

SSS thanks for weighing in I do appreciate it. I am so beaten down by this disorder and how to get rid of these freaking tics that I have aged 10 years. I am so tired of playing doctor. So so tired.

 

We have a fabulous PANDAS doctor but if I called him every time I had a question, I would be broke. Its just not fair what we all have to go through.

[SSS]

I shouldn't have wrote 'wow, no PANS'

that was dumb of me- I'm sorry, what a dork.

I am very tired today, too!

I did just go read Moleculera Labs website after realizing I probably shouldn't be commenting on old knowledge from a bad memory, and

it does not say the Cam K number is THE number,

rather it looks at all 5 results,

oh and by the way,

it's a clinical diagnoses,

and I am not a Dr. nor a genius,

sorry again!

 

Wish I had something witty and encouraging to end here with (where's LLM?)

but instead know I'm sending you good thoughts fellow mama, and you are not alone.

[Rachel]

Hi Cara

 

I was wondering if your son had been seen a specialist just for the tics. Tics can be caused by other things. Tics can be very annoying and stressful. I feel for you and hope things get better for son.

[cara615]

Rachel, yes, we have been seeing an integrative MD for over a year before we got the PANDAS dx. We did food sensitivity testing and removed the offending foods, we looked into methylation and supplement with a Methyl B complex, we looked at yeast and gut health and have treated yeast in the past as well as currently, we also supplement with glutamine.

 

We have looked at environmental allergies as well and I know that ds is sensitive to way more than what came up on the test. however we do give an anti histamine when allergy season is around and it helps.

 

I am convinced that since his strep titres are normal and he does not have any other active infections (although we need to test for viruses). That his gut is the culprit right now. Detox is an issue as well and we supplement with NAC (until recently). Now we have replaced the NAC with Protandim which creates more glutamine and stops oxidative stress way more effectively than NAC.

 

i will let you know how it goes.

 

i speak with Bradstreet on the 23rd to go over the Cunningham Panel. I think that since he does show elevated auto antibodies (and ones associated with Sydenham's Chorea = tubulin) that those are the cause of the tics.

 

 

 

[Rachel]

Please keep us posted. I learn something new every time. My son cannot use the NAC because of high Glutamate levels in the brain and it also lowers his blood pressure. However, I would like to know more about what you replaced it with. I'll do some research and ask our doctor about it.

[qannie47]

Cara: Follow your gut...no pun intended...you know your child. You are rather amazing. While I have not always had an answer to your posts, I have followed your journey. I truly believe that you will find resolution eventually.