Anti-Lysoganglioside, Dopamine1 & 2 etc

[kcdc3]

My dd's CAM was 163 - upper range. I just got her other titers back and the AntiL, AntiT and Dopamine 1 are all on the top (very top) of normal - Anti-Lysoganglioside 320, Anti-Tublin 1000, Dopamine 1 (2000).

Dopamine 2 (8000) is in the middle of normal.

Can someone help me understand what this means exactly? I would like to know how this contributes to PANDAS if anyone knows.

[faith]

My son's cam k is 179.

 

looks like we have a high lysoganglioside ....... 1280

 

anti tubulin ...... 1000

 

anti dop 1.........2000

 

anti dop2...........8000

 

 

I understand this is all normal except the lyso was very high. Dr. L. said that was a type of antibody that he seems to have a lot of?

 

 

again, remember this is all data that they are compiling from patients to see if it all correlates and means anything. this is not definitive to mean anything in particular yet. that's what this study is for, to use all this info as a comparison and then they will publish their report. we can speculate what we think it means, but I don't know if it is necessarily correct.

 

Faith

[Buster]

No one knows yet exactly what the numbers mean -- that's why the study is a research study... they don't have yet a good handle on the accuracy or the specificity of the tests nor the exact correlation to symtpoms, but that's what they are looking for.

 

I'm presuming that you have the Kirvan 2003 and Kirvan 2006 papers that present the CaM Kinase II results.

 

If I understand the tests, higher CaM Kinase II is found in those with Sydenham Chorea and separate those with anti-neuronal antibodies from those with other causes of tics and non-PANDAS OCD.

 

The sample size shown in the papers is pretty small, but the results seem representative.

 

Anti-lysogangliosides measure interference with gangliosides and this doesn't mean they attack the gangliosides, but rather seem to bind to what the ganglioside was trying to connect to. This means they either cause more signalling (because they bind) or stop signalling (because they bind and the normal signal can't get through). I'm not sure they know which is occuring.

 

There was one specific antibody that interferes with lysogangliosides known as 24.3.1. It is this antibody that is thought to cause the high Cam Kinase II activation. What has been interesting is seeing folks with high CaM Kinase II and low anti-lysogangliosides -- so it's possible something else is happening. My understanding is that for these tests, Cunningham is not isolating the 24.3.1 but rather testing the serum for all the anti-lysogangliosides at once.

 

On the Tubulin -- there's a good paper by Kirvan in 2007 about this, but it seems to be about antibodies that interact with Tubulin (a dimmer protein) that helps and inhibits signalling. In this case the antibody appears to bond to certain parts of tubulin interfering with whether it "shuts down" or "turns on" messaging.

 

For D1 and D2 -- this seems to be about two receptors in the basal ganglia. The receptors are part of a feedback cycle that regulates how a signal is sent across a synapse. As best as I understand it, some D2 receptors inhibit transmission of a signal and others increase the release of dopamine. My understanding is the combination is supposed to regulate the amount of dopamine released to cause a signal between two neurons. However, if the receptors get "plugged up" with anti-D1 or anti-D2 antibodies, then too much (or strangely too little) dopamine gets released and the signal gets weak.

 

Sorry, that's the best that I know at this point... It would be great if someone else has more... but I think we're all more on a mission or expedition here rather than knowing an answer. But wow we are a lot further along than 2 years ago.

 

Regards,

 

Buster

 

 

My son's cam k is 179.

 

looks like we have a high lysoganglioside ....... 1280

 

anti tubulin ...... 1000

 

anti dop 1.........2000

 

anti dop2...........8000

 

 

I understand this is all normal except the lyso was very high. Dr. L. said that was a type of antibody that he seems to have a lot of?

 

 

again, remember this is all data that they are compiling from patients to see if it all correlates and means anything. this is not definitive to mean anything in particular yet. that's what this study is for, to use all this info as a comparison and then they will publish their report. we can speculate what we think it means, but I don't know if it is necessarily correct.

 

Faith

[peglem]

For D1 and D2 -- this seems to be about two receptors in the basal ganglia. The receptors are part of a feedback cycle that regulates how a signal is sent across a synapse. As best as I understand it, some D2 receptors inhibit transmission of a signal and others increase the release of dopamine. My understanding is the combination is supposed to regulate the amount of dopamine released to cause a signal between two neurons. However, if the receptors get "plugged up" with anti-D1 or anti-D2 antibodies, then too much (or strangely too little) dopamine gets released and the signal gets weak.

 

So, The Anti D2 antibodies are either interfering with or modifying the signal- I know you're not sure, just checking if I understand what you said.

 

This makes sense in light of the abnormal movements I see with my daughter...she doesn't do tics out of the blue. Her abnormal movements seem to com about when she initiates a purposeful movement. Lately here (this is screwing up her eating) when she goes to bring a spoon to her mouth, its like she can't go straight to her mouth, like she's fighting swinging wide. Then when she opens her mouth or swallows that triggers a head jerk. So, unless I spoon feed her, she will only eat finger foods. So, I do spoon feed her- so we still get the neck jerks, but the food gets to her mouth.

When she lost speech-6 or so years ago- there was the same sort of thing. When she would try to speak, it just came out as "puh, puh, puh", which eventually went away as well.

[Buster]

So, The Anti D2 antibodies are either interfering with or modifying the signal- I know you're not sure, just checking if I understand what you said.

I think it is more that the anti-D1 or anti-D2 are more messing with the feedback loop associating with regulating the amount of dopamine to use. The way I understand it is that there's a receptor that when hit releases dopamine and another that inhibits release. Similarly on the other neuron, there's one that receives a signal and another that inhibits a signal. The apparent mechanism is to release some dopamine and if some comes back on the feedback path to stop releasing dopamine. Similarly, on the other side, to receive some dopamine, but if you get too much then to stop receiving dopamine. Sort of like an overflow valve.

 

So if someone is messing with the feeback loop, you either don't get enough or too much. So I don't think it is about having too much or too little, but rather that you are getting a ton and then none then a ton and then none so your system can't quite get it dialed in to get it controlled.

 

Again, I may be way off, but that's how I understand it.

[fuelforall]

So My son has high anti-lysogaglioside, same as Faith's number.

What I find alarming is anti dopamine 1 is at the top of normal (2000) and anti dopamine 2 is at the bottom of normal (2000).

I wonder about that. Do I have cause for alarm?

Any thoughts from Buster or other whizzes at this business?

[faith]

So My son has high anti-lysogaglioside, same as Faith's number.

What I find alarming is anti dopamine 1 is at the top of normal (2000) and anti dopamine 2 is at the bottom of normal (2000).

I wonder about that. Do I have cause for alarm?

Any thoughts from Buster or other whizzes at this business?

 

 

fuelforall,

just for fun, can we compare notes on symptoms? I'll give you brief description of what I'm dealing with and then you tell me, let's see if we have anything in common.

 

son is 10 1/2,

main presentation is tics, vocal and head/neck area. (first noted at 3 1/2)

ocd on the mild side

sep anxiety is there, altho he hides it well, but I feel inappropriate for 10 yr old.

attention problems are getting progressively worse with age.

not "ragey", but more irritability which leads to meltdowny behavior

does not get sick alot, mostly a 24 hour virus once or twice a year. does not show symptoms of strep, and usually tests negative.

 

does your child have tics as the main issue? (I say main issue because for us its the most obvious, however, keeping my son on task is also a big one that is becoming a problem in school)

 

Faith

[fuelforall]

So My son has high anti-lysogaglioside, same as Faith's number.

What I find alarming is anti dopamine 1 is at the top of normal (2000) and anti dopamine 2 is at the bottom of normal (2000).

I wonder about that. Do I have cause for alarm?

Any thoughts from Buster or other whizzes at this business?

 

 

fuelforall,

just for fun, can we compare notes on symptoms? I'll give you brief description of what I'm dealing with and then you tell me, let's see if we have anything in common.

 

son is 10 1/2,

main presentation is tics, vocal and head/neck area. (first noted at 3 1/2)

ocd on the mild side

sep anxiety is there, altho he hides it well, but I feel inappropriate for 10 yr old.

attention problems are getting progressively worse with age.

not "ragey", but more irritability which leads to meltdowny behavior

does not get sick alot, mostly a 24 hour virus once or twice a year. does not show symptoms of strep, and usually tests negative.

 

does your child have tics as the main issue? (I say main issue because for us its the most obvious, however, keeping my son on task is also a big one that is becoming a problem in school)

 

Faith

 

Dear Faith,

Thanks, what fun. (sorry to sound sarcastic, but you know what I mean.

Son is nearly 9 and a half. Main presentation tics, vocal and motor(motor showed up six months ago, arm shoots out, very visible stuff when it happens and this weekend he may have had a slight exacerbation of all symptoms because he belonged in a cage at certain times) Sep anxiety is present at night and needs to hold hands all the time so he can do his finger business (choreiform, etc) on my hand.

OCD on the mild side,as you say.

 

RIGIDITY. You may put this word in 46 size font because that is my son. HYPERACTIVE. Yes, attention problems seem worse and the minute he is "bored", his vocal tics go off and he "attacks" his 3-year old brother. THOSE are the two main issues, beyond all else.

 

Does not get sick a lot, mostly a 24 hours virus once or twice a year. Does not show symptoms of strep and usually tests negative.

(You'll note I copied you word for word because it is totally accurate)

 

Thanks for the comparison, very in teresting.

Michael

[faith]

wow. maybe we're on to something.

Michael, you are the one who described your son as "its his way or the highway" , right? I laughed when I read that becasue that fits us pretty good here. He gets very irritable when things don't go his way. its not ragey, but more like a 'freak out', and he can paw at me at times, which causes dad to have to discipline him for putting his hands on mom. luckily he is small for his age.

 

So I find it interesting that we both have a very high lyso and they are both ticcers, vocal as well.

 

I wonder if anyone else who has a child with tics as the main, could let us know if they also had high lyso (and hi cam k s well....we were 179, which I find surprising, since some here with way more debilitating OCD have had a lower score than us).

 

 

Faith

[fuelforall]

wow. maybe we're on to something.

Michael, you are the one who described your son as "its his way or the highway" , right? I laughed when I read that becasue that fits us pretty good here. He gets very irritable when things don't go his way. its not ragey, but more like a 'freak out', and he can paw at me at times, which causes dad to have to discipline him for putting his hands on mom. luckily he is small for his age.

 

So I find it interesting that we both have a very high lyso and they are both ticcers, vocal as well.

 

I wonder if anyone else who has a child with tics as the main, could let us know if they also had high lyso (and hi cam k s well....we were 179, which I find surprising, since some here with way more debilitating OCD have had a lower score than us).

 

 

Faith

 

Discipline? Nothing works. So he gets away with everything.

Cam K was pretty average at the time 134

Yeah, it is more like a freakout but it's pretty angry. He'll pick something up like a toy and throw it on the ground. He is a yeller. Irritable is putting it mildly.

He weighs almost nothing so even my lightweight wife can hold him down a while.

[faith]

michael,

refresh me where you stand on treatment? i can go look, but I'm lazy right now. who is your doctor and has your son been difinitevely diagnosed PANDAS? I am kind of a newbie to this (you could say I'm kind of a "born again PANDAS", as I am re-visiting this from back 3 yrs.) .

 

I hear you on the discipline, we have a hard time here too, but I feel if I don't stay tough with him, it will just be worse. when I do that, it does inevitably get ugly, but he has to be shown we mean business, I don't want to fall into the trap of believing he can't help it. when he does say "I'm sorry, you know I can't help it" when its over, we just keep trying to instill that the behavior is unacceptable. I've been doing this for years, it doesn't always get better for the next time, but I keep trying, I so want him to be accountable for his behavior and realize that his 'irritablility" is over the top and causes problems for us all....oh, and ironically, he does not display this in school, he's quite cooperative in school, this is all reserved for us....

 

 

Fatih

[fuelforall]

"Oh, and ironically, he does not display this in school, he's quite cooperative in school, this is all reserved for us...."

 

Tell me about it. This is more common that we realize which of course leads all shrinks and such to say, it's all behavioral.

 

We got IVIG three plus weeks ago, nothing has happened yet and I'm impatient as all get out. DR K sez wait, do nothing. I admit I was a little surprised.

 

My ds9 had high titers in a test 18 months ago. Since then, they have not been as high. He had an exacerbation of symptoms last June and could not even go to school for a couple weeks (he was supposed to show up for summer school). This brought us back to Pandas.

Dr Ken Bock took over his case when his partner Mike Compain thought my son was too tough a nut to crack.

 

My son's rigidity and his limited ability to absorb lessons such as you describe make practically any discipline of waste of time. He's not capable of saying, Im sorry, you know I can't help it. That would give him too much credit. He will say simply that He is a KID, not an adult and that's his excuse. We try to take away the three things he likes to do, try to put restrictions, make him think about plan B's but he just gets so locked in to his frame of mind, his brain is so messed up.... it's like dealing with a wild animal at times.

 

I'm open to any treatment that will get to the heart of the matter.

[Mammom]

wow. maybe we're on to something.

Michael, you are the one who described your son as "its his way or the highway" , right? I laughed when I read that becasue that fits us pretty good here. He gets very irritable when things don't go his way. its not ragey, but more like a 'freak out', and he can paw at me at times, which causes dad to have to discipline him for putting his hands on mom. luckily he is small for his age.

 

So I find it interesting that we both have a very high lyso and they are both ticcers, vocal as well.

 

I wonder if anyone else who has a child with tics as the main, could let us know if they also had high lyso (and hi cam k s well....we were 179, which I find surprising, since some here with way more debilitating OCD have had a lower score than us).

 

 

Faith

 

Hi Faith,

 

My DS7's major presentation is tics (motor and vocal). His cam score was 156, anti-lyso - 320, anti-tubulin - 1000, anti-dop1 - 2000, anti-dop2 - 8000. He did have abrupt onset after a documented strept throat infection (with sore throat, fever, very red spotted throat, ect.). He also has had separation anxiety, mild OCD, bedwetting, and night terrors. However, Dr. L thought his presentation was mild. He does not have any school problems (presents mildly there as well). The worst of his behavior is when he is home or with us. So, I don't know what this all means.....but wanted you to have my info. to compare with yours.

 

Dana

[P_Mom]

My son who presented mostly with tics.....mild case.....absent or mild symptoms persent..immediate treatment for PANDAS about 3 days after onset.

 

Cam Score....112

 

Anti-Lyso.....160

 

Anti-Tubulin......500

 

Anti Dop 1.....1000

 

Anti-dop 2....2000

 

 

Younger son who presented first with ocd......second recognizeable onset consisted of major ocd, vocal tics, anxiety etc. The works....also developed motor tics.

 

Cam score........162

 

Anti-Lyso......160

 

Anti-Tubulin.......1000

 

Anti-dop 1.......2000

 

Anti-dop 2......2000

[nevergiveup]

Looking for feedback from Mommd and Buster and all other scientists. When our kids immune systems over react and produce these antibodies that Cunningham has isolated and tested for, what made her look for these specific four antibodies??? Are they anti strep antibodies? (All four). Why four different antibodies? My previous neurologist whom doesn't believe in PANDAS but does think TS and OCD can be an autoimmune response once told me 5 years ago that different antibodies cause tics versus ocd? If so does strep trigger different antibody production? My daughters ANA is so high and after IVIG her ANA was way down, but now her Cam Kinase is rising again 6 months after IVIG, and her Dop 2 is now elevated. (After IVIG it was within normal limits). She has asked for another IVIG, (she was sick for weeks after first IVIG). She knows things are getting worse again. Once the immune system is trained to produce these antibodies isn't it going to be hard to shut them off. Like in Lupus, MS and Chrons. My daughter has not been exposed to strep since her IVIG in May. She has had a slow worsening of symptoms over the last three months.

 

Any feedback? Thanks