My Anti-neural anti-body titers

[MichaelTampa]

Just received this. I communicated with Kathy a day or so ago, and looks like we are still a couple weeks away from getting the CamK number.

 

Anti-Lysoganglioside 2 hours

patient 160

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 250

positive control 8000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 500

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 4000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

 

As I try to read this, it reads a lot like all these measurements are pretty normal. As a reminder, I am 42 years old. Since the IVIG is not supposed to work after puberty, I can only wonder how these numbers, and the CamK number, might be impacted by puberty. I do believe Dr. Cunningham said they had not tested any adults yet, so I apparently could be the first. Truly, don't understand enough to do more than simply wonder. I do have a very large percentage of the symptoms as listed from Dr. K.'s website, and have had them since childhood. Yet, the fluorescent lights sensitivity and wireless sensitivity does seem off the chart so as to wonder if it is still really something else going on with me. Truly, has been the life story, of never fitting in to any neat boxes, although I feel I got lots and lots closer with the TS diagnosis a year ago, and did feel closer still to match up with all the PANDAS symptoms a week or two ago.

 

Anyone have any thoughts they want to share regarding these numbers and the struggle to diagnose me?

 

Michael

[thereishope]

I'm just curious, is Dr Cunningham running your labs as a favor or was she also curious as to what your results would be?

[MichaelTampa]

I'm not sure if I would characterize it either way. I started by telling my situation, that I am an adult, but am interested in testing, and she replied that they have not included adults in the study, but if I want to be tested, that's fine, and here are the steps to move forward. So, I didn't really have to beg or anything, nor did she have any curiosity that she expressed. It was all pretty matter-of-fact.

 

Michael

[momofgirls]

Hi michael

My daughter's titers were normal but cam k was in pandas range at 137 which is just below ave for pandas. Dr cunningham told me that the titers normalize before the camk and that she was probably "trending down". She believed she fit pandas profile. We did a steroid burst and abx and saw great improvement! She had ivig a couple weeks ago and seems to have slipped some. We'll have to watch over time. Have you thought of trying a steroid burst? Oh and by the way who says after puberty its too late for ivig? Have they ever tried? Don't give up and good luck!

[MichaelTampa]

momofgirls,

 

Thanks for the information. Could you tell me the timing of the normal titers versus the steroid/abx/ivig treatment? Could the titers have gone to normal as a result of the treatment?

 

Dr. Kovacevic’s website webpediatrics.com, which discusses PANDAS a great deal, is the place that says his experience is it doesn't really help after puberty. Not sure what other doctors think. No, I have not tried a steroid burst, really am going to wait for the CamK number before getting with a PANDAS doctor and then seeing what they recommend. I have heard the steroid burst can be dangerous for those with TS, so I would consider that carefully before doing.

 

Michael

[momofgirls]

Hi Michael

We didn't do the steroid burst nor abx untill after getting the Cunningham numbers so it couldn't have impacted results. Also I know some of the moms have said steroids worsens tourettes symptom but...Dr Latimer doesn't believe this to be true. Her words were "steroids are not a diagnostic tool for Tourettes or they would use it.". She prescribed them for Faith's son and they have been on the fence regarding pandas vs tourettes diagnosis. I don't know if faith ever actually tried them for her son I know she was hesitant. I hate speaking third hand for dr latimer but just wanted to share what I have heard. My daughters tics spiked some the first two days on steroids then went back down then improved. I can't say this would be true for everyone but am just telling you my experience. I think this can happen. After all you dealing with nerves and swelling.

I'm not a doctor and have also read that on Dr K's website. I just hate for you to give up hope. These treatments are still somewhat experimental and I can't imagine many adults have pursued treatments like ivig so who knows.

I am sure you will find the information you need and know it must be a tough decision. Good luck.

momofgirls,

 

Thanks for the information. Could you tell me the timing of the normal titers versus the steroid/abx/ivig treatment? Could the titers have gone to normal as a result of the treatment?

 

Dr. Kovacevic’s website webpediatrics.com, which discusses PANDAS a great deal, is the place that says his experience is it doesn't really help after puberty. Not sure what other doctors think. No, I have not tried a steroid burst, really am going to wait for the CamK number before getting with a PANDAS doctor and then seeing what they recommend. I have heard the steroid burst can be dangerous for those with TS, so I would consider that carefully before doing.

 

Michael

[peglem]

momofgirls,

 

Thanks for the information. Could you tell me the timing of the normal titers versus the steroid/abx/ivig treatment? Could the titers have gone to normal as a result of the treatment?

 

Dr. Kovacevic’s website webpediatrics.com, which discusses PANDAS a great deal, is the place that says his experience is it doesn't really help after puberty. Not sure what other doctors think. No, I have not tried a steroid burst, really am going to wait for the CamK number before getting with a PANDAS doctor and then seeing what they recommend. I have heard the steroid burst can be dangerous for those with TS, so I would consider that carefully before doing.

 

Michael

 

Not sure if you have seen this study- 4 cases of childhood onset, but not treated until adulthood PANDAS. They used plasmapheresis instead of IVIG, but you still might find it interesting:

http://www.turkpsikiyatri.com/en/default.a...icle&id=592

[powerofprayer]

Just received this. I communicated with Kathy a day or so ago, and looks like we are still a couple weeks away from getting the CamK number.

 

Anti-Lysoganglioside 2 hours

patient 160

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 250

positive control 8000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 500

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 4000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

 

As I try to read this, it reads a lot like all these measurements are pretty normal. As a reminder, I am 42 years old. Since the IVIG is not supposed to work after puberty, I can only wonder how these numbers, and the CamK number, might be impacted by puberty. I do believe Dr. Cunningham said they had not tested any adults yet, so I apparently could be the first. Truly, don't understand enough to do more than simply wonder. I do have a very large percentage of the symptoms as listed from Dr. K.'s website, and have had them since childhood. Yet, the fluorescent lights sensitivity and wireless sensitivity does seem off the chart so as to wonder if it is still really something else going on with me. Truly, has been the life story, of never fitting in to any neat boxes, although I feel I got lots and lots closer with the TS diagnosis a year ago, and did feel closer still to match up with all the PANDAS symptoms a week or two ago.

 

Anyone have any thoughts they want to share regarding these numbers and the struggle to diagnose me?

 

Michael

 

Michael,

I am 38 and have never been diagnosed with TS but i do have vocal AND motor tics. I've just always assumed it was TS but was too embarassed to see anyone. So fast forward to a couple years ago when my dd (then 4) started with a blinking tic. Finally i was forced to talk about my own condition to try to get her help. anyway, we both had Dr CUnningham run our numbers and this is what we came up with.

 

MINE:

Anti-Lysoganglioside 2 hours

patient 640

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 2000

positive control 16000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 2000

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 4000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

CAMK 100

 

 

MY DD

Anti-Lysoganglioside 2 hours

patient 80

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 2000

positive control 16000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 1000

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 4000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

 

CAMK 175

 

I don't understand what the antineuronal antibody titers really measure. Do we know yet? Are they significant at all? I've gotta run, but i thought i'd post these quickly so you could "compare" with another adult.

[T_Mom]

Just received this. I communicated with Kathy a day or so ago, and looks like we are still a couple weeks away from getting the CamK number.

 

Anti-Lysoganglioside 2 hours

patient 160

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 250

positive control 8000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 500

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 4000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

 

As I try to read this, it reads a lot like all these measurements are pretty normal. As a reminder, I am 42 years old. Since the IVIG is not supposed to work after puberty, I can only wonder how these numbers, and the CamK number, might be impacted by puberty. I do believe Dr. Cunningham said they had not tested any adults yet, so I apparently could be the first. Truly, don't understand enough to do more than simply wonder. I do have a very large percentage of the symptoms as listed from Dr. K.'s website, and have had them since childhood. Yet, the fluorescent lights sensitivity and wireless sensitivity does seem off the chart so as to wonder if it is still really something else going on with me. Truly, has been the life story, of never fitting in to any neat boxes, although I feel I got lots and lots closer with the TS diagnosis a year ago, and did feel closer still to match up with all the PANDAS symptoms a week or two ago.

 

Anyone have any thoughts they want to share regarding these numbers and the struggle to diagnose me?

 

Michael

 

Michael,

I am 38 and have never been diagnosed with TS but i do have vocal AND motor tics. I've just always assumed it was TS but was too embarassed to see anyone. So fast forward to a couple years ago when my dd (then 4) started with a blinking tic. Finally i was forced to talk about my own condition to try to get her help. anyway, we both had Dr CUnningham run our numbers and this is what we came up with.

 

MINE:

Anti-Lysoganglioside 2 hours

patient 640

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 2000

positive control 16000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 2000

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 4000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

CAMK 100

 

 

MY DD

Anti-Lysoganglioside 2 hours

patient 80

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 2000

positive control 16000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 1000

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 4000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

 

CAMK 175

 

I don't understand what the antineuronal antibody titers really measure. Do we know yet? Are they significant at all? I've gotta run, but i thought i'd post these quickly so you could "compare" with another adult.

 

PowerofPrayer--Thanks for posting this. May I ask, what were your dd's symptoms at the time of the blood draw?

Thanks again.

[MichaelTampa]

Powerofprayer,

 

Yes thank you! Have you reviewed the PANDAS symptoms (such as on the webpediatrics.com website, or elsewhere), and do you feel your symptoms fit more as PANDAS or more as TS?

 

Yes, those antineural antibodies are being taken to see if they can figure out if they mean anything. Right now, it's anybody's guess if they mean anything at all.

 

Michael

[ajcire]

Michael, I hope this is ok to ask.... did/do you have a history of the other symtpoms as well? The argumentative/behaviorial component, being irrational? I am curious if you did, if you were aware that you were being irrational at the time but just couldn't help it? If something is not working for my ds and he is in one of his modes he gets completely irrational about it. If I suggest ways to make it better, fix what's not going right for him he just comes back with his sobbing and an irrational response. If he is in that mode and can't have something he gets irrational and usually says things like, "Then I'll never be able to have XX again" The only thing that gets him out of those modes is time.. I usually have to get him to take a break in his room (involves a lot of foot stomping and door slamming on his part)... then he after a period of time he will totally switch out of it and ask if he can come out of his room.

[faith]

erica,

I'll second the irrational part of it is as you describe for my son too.

 

are you suggesting Michael needs a 'time out'?..................

[ajcire]

Faith, I would love a time out. Please, somebody give me a time out. I would love to hear from someone who has actually lived through pandas themselves as to what is going on in their mind at the moment or if it is just beyond their control.

 

 

erica,

I'll second the irrational part of it is as you describe for my son too.

 

are you suggesting Michael needs a 'time out'?..................

[faith]

Well, I can tell you that when my son has his little fits, if you want to call it that, he will at sometime later say to me that he is sorry he acted that way, and that "he can't help it'. he says, 'mom, you know I have irritabilities and I can't help it"......when he's in the midst of acting that way, no, he doesn't realize it, but do kind of hint at him and will say "you're getting irritated now, so stop acting that way" or "stop getting irritated", (what we mean by irritated is his sensory problems, they are what irritates him, a sound, smell, his hair, whatever... in other words, he over reacts to these sensations).

 

oh and time out for him never worked, I couldn't even get him up there to his room, he'd be hanging on to the banister or trying to push me back out of the way, and if I tried to walk away, he'd pull at me or block me from leaving. alot of fun.

[ajcire]

I am able to get him up to his room but he doesn't go quietly and willingly. He screams, stomps and bangs his way up.. then gets in his bed and hides under the covers until he is calmed down. If I go in and he's not ready he stays under the covers and just ignores me.

 

 

Well, I can tell you that when my son has his little fits, if you want to call it that, he will at sometime later say to me that he is sorry he acted that way, and that "he can't help it'. he says, 'mom, you know I have irritabilities and I can't help it"......when he's in the midst of acting that way, no, he doesn't realize it, but do kind of hint at him and will say "you're getting irritated now, so stop acting that way" or "stop getting irritated", (what we mean by irritated is his sensory problems, they are what irritates him, a sound, smell, his hair, whatever... in other words, he over reacts to these sensations).

 

oh and time out for him never worked, I couldn't even get him up there to his room, he'd be hanging on to the banister or trying to push me back out of the way, and if I tried to walk away, he'd pull at me or block me from leaving. alot of fun.