anti neuronal antibody titers

[bronxmom2]

Hi,

I received an email with the "antineuronal antibody titers" today from the Cunningham people, but can't make sense of them.

 

What are the anti-lysogalglioside (this is only one that looks really elevated for my son); anti-tubulin; anti-dopamine 1 and 2?

 

The anti-lyso looks really high but the others are only on the upper edge of normal range.

 

Do the Cam-Kinese come separately? Or are these the anti-dopamines?

 

Thanks!

[kg5123]

I also have a similear question.

My son's blood was sent to Dr. Cunningham this Monday and we are waiting for results within a few weeks.

Do test results come with their analysis or any conclusion? Or all you get is figures that have no explanation about their meaning or significance?

 

5123KG

[colleenrn]

I also am lost in trying to interpret my three children's results. I know Dr. Cunningham will send a note with the results mailed to me, yet I am dying to know now. I have not recveived the CAMKinase results yet (Kathy said she was running them yesterday), but did receive the anti-neurol antibodies. If I post them, can someone help me figure them out??

 

Also, my sister has recieved all of the results she had done on her two PANDAS children.

 

Thanks so much!

Colleen

[bronxmom2]

post yours and I'll post mine, at least we can compare. Gotta put baby to bed but I'll be back.

[pixiesmommy]

We got ours via email today also and

[colleenrn]

13 yo daughter

 

Anti-Lysoganglioside 320

Anti-Tubulin 1,000

Anti-Dopamine 1 2,000

Anti-Dopamine2 8,000

 

 

6 yo son

 

Anti- Lyso 80

Anti-Tubulin 500

Anti-Dopamine 1 1,000

Anti-Dopamine 2 8,000

 

 

8 yo son

 

Anti-lyso 320

anti-tubulin 500

anti-dopamine1 500

anti-dopamine2 2,000

 

I have not recieved the CamKinase yet. hope to tomorrow.

 

Thanks!

Colleen

[dcmom]

Hi everyone. I am also trying to figure out my results. We also did not get the Cam Kinase yet. My numbers look high I am so lost at what to do? Do I push for IVIG, PEX, or really increase on the antibiotics. Sigh...

 

Anti-lyso 320

anti-tubulin 4,000

anti-dopamine1 4,000

anti-dopamine2 8,000

 

Can anyone that can explain what the individual numbers mean...

 

Eileen

[bronxmom2]

Here are my son's-- age 7:

anti-lyso 640

Anti-tubulin 1000

anti-dopamine 1- 2000

anti-dopamine 2- 4000

[acdrobert]

Here are my son's-- age 7:

anti-lyso 640

Anti-tubulin 1000

anti-dopamine 1- 2000

anti-dopamine 2- 4000

 

 

I just created a whole new thread and then discovered this one. Mds8 results are back too and I am equally confused.

 

 

Anti-neuronal Antibody Titers

 

Anti-Lysoganglioside 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 80 160 320 640 1280

positive control 320 640 1280 1280 >1280

negative control 20 40 40 80 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 250 250 500 500 1000

positive control 2000 4000 8000 16000 16000

negative control <250 <250 250 250 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 250 500 500 1000 2000

positive control 2000 4000 8000 8000 16000

negative control 250 500 1000 1000 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 500 1000 2000 2000 4000

positive control 4000 8000 16000 16000 32000

negative control 250 500 1000 2000 2000

normal range 2000-16000

normal mean 6000

[dut]

We also got our d's results today - last major episode ended Dec 2008, minor flare for couple of weeks in April 2009,currently symptom free

 

anti lysoganglioside 160

anti tubulin 1000

anti D1 1000

anti D2 1000

[Ellen]

Here are my son's results (age 13)

 

anti-lysoganglioside 640

anti-tubulin 2000

anti-dopamine 1 2000

anti-dopamine 2 4000

 

These results came yesterday. Over the weekend, I received an e-mail explaining that his CamKinaseII result

was 131, which I was told puts him in the PANDAS range pretty solidly. I am not at all sure about how to interpret

the antibody titer numbers. Any information that anyone else has about this would be helpful.

 

Ellen

 

 

 

 

 

We also got our d's results today - last major episode ended Dec 2008, minor flare for couple of weeks in April 2009,currently symptom free

 

anti lysoganglioside 160

anti tubulin 1000

anti D1 1000

anti D2 1000

[sf_mom]

We received results today too.... Here are my son's.

 

IT IS MY UNDERSTANDING that these numbers might be skewed if your child has recently completed a steroid burst. My son started his burst August 13th and blood draw was August 24th, 11 days after starting steroids. IT IS ALSO MY UNDERSTANDING that the Anti-Tublin relates to tics which is elevated for my son and he has TIC presentation. IT IS ALSO MY UNDERSTANDING that Anti-Dopamine relates to the OCD Behavior which my son also has OCD presentation. If someone is a little more educated please feel free to correct me if the above statements are wrong. The most important result is the CaM Kinase % levels and we have yet to receive those numbers but suspect we will in the next couple of days.

 

RESULTS AT TWO HOURS

 

Anti-Lysoganglioside: 80 Normal

 

Anti-Tubulin: 2000 Elevated

 

Anti-Dopamine 1: 1000 Normal

 

Anti-Dopamine 2: 2000 Normal

[Buster]

Hi Folks,

 

I'll try to offer some explanation here based upon what's written in Kirvan and Cunningham's paper, but you might want to contact the lab for a full explanation.

 

First, these are research tests and as such shouldn't be used as diagnostic because the whole purpose of the research test is to determine whether there is an association between measurements and symptoms. So, treat the tests as just one of the pieces in the puzzle we're all trying to figure out.

 

At this point, the tests are compared against a group of controls but remember the sample size is REALLY small (like 30+ controls) so true "normals" aren't really known.

 

The theory in PANDAS is that one or more antibodies are produced that interfere with normal signalling in the brain. Kirvan and Cunningham isolated several antibodies in their work and together these are referred to anti-lysogangliosides. The test they run is to add the blood serum to neuroblastoma cells and then check if adding a tagged ganglioside binds with the cells. If it doesn't, then it is assumed that the serum used up all the binding spots. This isn't perfectly accurate but hopefully good enough for explanation.

 

Similar tests are done for binding to dopamine 1 and 2 receptors. Essentially, they are looking to see if the serum interferes with dopamine binding.

 

Then tubulin is a a protein that acts as a dimmer that self-regulates a number of properties in messaging (way too simple explanation, but think of it as part of a feedback loop). So anti-tubulin is thought to inhibit the ability of tubulin to "dim"/regulate certain cell properties. Kirvan found that this interference with tubulin occurred in Sydenham Chorea kids.

 

Finally, CaM Kinase II activation... well, essentially, this is complicated, but take it that it affects the barrier of endothelial cells and is thought to regulate signalling in synapses -- some neurologist is right now cringing at my explanation. Something in the blood is causing the activation, but this isn't in itself a problem. What is thought to be an issue is if the blood-brain-barrier is opened, then some of what's in the blood crosses into the spinal fluid and can interfere with brain chemistry and signalling particularly in the area of the Basal Ganglia.

 

So, summarizing:

* anti-lysogangliosides check whether something in blood serum is interfering with the binding of GM1 -- competing for binding sites

* anti-d1 checks whether something in the blood serum is interfering with binding at dopamine receptor 1 sites

* anti-d2 checks if interference with dopamine receptor 2 sites

* anti-tubulin checks whether interference with tubulin binding

* CaM Kinase II checks whether the enzyme is "turning on" causing signalling

 

In Kirvan's studies, high anti-lysogangliosides and high CaM Kinase II were associated with SC and PANDAS and high anti-tubulin was associated with SC.

 

Again, I'm not a doctor and this isn't my specialty, but the above is my understanding and you might want to check with the lab how to interpret the result.

 

Regards,

 

Buster

 

 

 

Hi,

I received an email with the "antineuronal antibody titers" today from the Cunningham people, but can't make sense of them.

 

What are the anti-lysogalglioside (this is only one that looks really elevated for my son); anti-tubulin; anti-dopamine 1 and 2?

 

The anti-lyso looks really high but the others are only on the upper edge of normal range.

 

Do the Cam-Kinese come separately? Or are these the anti-dopamines?

 

Thanks!

[Buster]

Putting our numbers here too:

 

non-exacerbation:

Anti-lyso: 1280

Anti-tubulin: 1000

Anti-D1: 8000

anti-D2: 16000

CamKinase II: 183%

 

Exacerbation:

Anti-lyso: 640

anti-tubulin: 4000

anti-D1: 8000

anti-D2: 16000

CamKinase II: 253%

 

Regards,

 

Buster

[peglem]

Here's Allie's at the 120 minute mark, which is what the lab highlighted in the report:

 

Lyso- 160

D1- 1000

D2-16,000

tubulin- 500

 

CamK- 242%

 

 

About the BBB: I'm curious about what this is. I mean, obviously, the brain needs blood to function...so how does this barrier work? Is it kind of like a placenta, where the brain has a separate blood system that interfaces with the rest of the body supply? I'm trying to picture what it would mean to have it opened or closed? I should probably search, but if anybody already has some information and would like to share....that'd be nice.