lyme Cam K levels

[sf_mom]

The donor antibody half life of IVIG is 21 days and rest takes an additional six months to expire. Those antibodies will inappropriately impact Cam kinase results... or at least that is what MC relayed to me last year.

[matis_mom]

Drawn: Oct 09

Age: 12

Sex: Male

Status: somewhat anxious but not at his worst

CamK: 168

Treatment: At that time, he had only had a few months of abx, no steroids or anything, and was testing ALL BANDS negative for Lyme and co-infections through specialized labs (we were working with an LLMD at the time who insisted he had it, but I did not know any better )

 

Now he is showing 4 bands positive through Labcorp, and we are pretty sure I have it, and I think some of the other kids too (particularly the ones that kept getting strep and/or impetigo!)

 

We sent in DD10's Cunningham last week and I'll post the results. We are also waiting on a Western Blot for her.

 

I am so glad to see more action on this forum! Keep it coming

 

Isabel

[philamom]

Drawn: June 2009

Sex: female

Age: 7 at the time

Cam K: 137

Status: 8 weeks into exacerbation - turned chronic

Treatment: post steroid burst & abxs; done prior to ivig

Positive Lyme test: July 2010

[PacificMama]

I don't know if I would do the Cam testing for myself at this point. We are spending all of our $$ on treatment and diagnostic tests so until this test becomes diagnostic (or I get rich), I don't think it would make sense for me to do it. We do have autoimmune diseases in our family, hence the reason we are aggressively trying to treat my son and myself.

 

I did mention to Dr. Cunningham that we think my son received Lyme in utero. Her response was that she was not aware you could pass Lyme in utero and that she would look into it.

 

I agree about not spending the money to do it for yourself. I guess I was more just thinking out loud about the value of it for research purposes. Well, only Dr. Cunningham could answer that.

 

I'm surprised she didn't know about congenital possibility. But I'm guessing that since then she has learned much more about lyme, as she is working with llmd's and lyme subjects have become a part of this study.

[PacificMama]

I'm going to send M.C. an email to see if she can tell me more about the original pandas data (in exacerbation or out)..as well as when "convalescing" pandas sera was drawn, and if that means they had ivig.

 

And of course I'm ask her what the median lyme score is...I'm sure she already has this broken out. I wonder if at the recent lyme conference she presented this number.

 

It will be interesting to see what she might have to say. I'm sure at this point she is breaking out the lyme data. (but of course there have to be subjects of the study in the pandas category that actually have other unknown infectious triggers).

 

I have to wonder if there really is anything in trying to designate ranges for the CamK -- pandas, sc, perhaps lyme. It would seem that an elevation of CamK is an elevation, regardless of trying to assign a range to a disorder. But obviously I'm not the researcher! I also wonder what contol data exists about CamK numbers (in the general population, in people who are afflicted with other neuro/cog/psych disorders). I look forward to hearing more from her on all of this one day.

[norcalmom]

thank you for all your replies! I'm not sure I can get too much further ..but I do think discussing what the common symptoms or test results you all have will help folks that don't know if they have any reason to check out lyme (me!) will help them decide. BTW with he new numbers that would bring the median up to 168. I did leave michaels in there, altho he is an adult...with out it it is 163... and the range is 137-184.

 

My nephew gets his lyme test back in a week or so. His cam K was 181 (not in exacerbation) and my son's is 176 (not in exacerbation - we have not doen lyme testign yet) so, you see where I'm going with this? A higher score (esspecially at baseline - not in exacerbation) may indicate you are more likely to have lyme. I'm not sure I can say that based upon this very informal survey. I will let you know if MC gets back to me. It of course doens't mean you can't have it with a lower score, I'm just looking to see if I can find some likelihood, some percentages..

 

So, lets keep the discussions going - I'm really interested in what the neuro-physchiatric lyme group has in common, and what clues might separate them from the "regular" pandas group.

 

Two people that responded said they are chronic - or they didn't have exacerbations..is that the case with more of you? Or maybe ivig failed? What else?

[eljomom]

Can i ask how Lyme would impact impetigo? 3 of my 4 kids have been passing it around all summer!

thanks,

wendy

 

Drawn: Oct 09

Age: 12

Sex: Male

Status: somewhat anxious but not at his worst

CamK: 168

Treatment: At that time, he had only had a few months of abx, no steroids or anything, and was testing ALL BANDS negative for Lyme and co-infections through specialized labs (we were working with an LLMD at the time who insisted he had it, but I did not know any better )

 

Now he is showing 4 bands positive through Labcorp, and we are pretty sure I have it, and I think some of the other kids too (particularly the ones that kept getting strep and/or impetigo!)

 

We sent in DD10's Cunningham last week and I'll post the results. We are also waiting on a Western Blot for her.

 

I am so glad to see more action on this forum! Keep it coming

 

Isabel

[jayjay]

sex - male

age - 10

bood drawn for CamK - Jan. 2010 on day 15 of 21 day steroid burst, results - 150

exacerbation - yes

IVIG - May 2010 & 2 weeks ago

IGenX test received 1 week ago - positive for lyme & bartonella

[NancyD]

Age: 14

Sex: Female

CaM Kinase drawn: 10/12/09

Treatment prior to CaM Kinase drawn: Pen VK, IVIg (HD and LD monthly for 13 mos prior, last IVIg 28 days prior)

Results: 134

Status during blood draw: In remission

IGX testing: 9/20/10

Treatment prior to IGX testing: Augmentin XR (last IVIg 3-17-10)

Results: IgM positive for Lyme, IgG positive for Myco P

[Iowadawn]

I remember reading that some of you who ultimately got lyme diagnosis reported this back to Dr. Cunningham. For anyone who has not, please do. She would really want this information.

 

To the congenital moms here: Do you think it's of any research value to see what your own CamK/antineuronal score is? Do any/all of you also have autoimmune issues? (well, that's probably a topic for a new thread).

 

 

If I didn't have to pop for the 400 smolies I would do it. If Dr. C would want this info I would get it done in a heartbeat.

 

Dawn

 

I do know that the LLMD we are seeing in IA

is involved with some lyme study with Dr. C.

Edited October 17, 2010 by Iowadawn