lyme Cam K levels

[norcalmom]

Just out of curiousity...do any of you have positive Cam K test results and how high were they? I'm only interested in those diagnosed with Lyme. I'm wondering if Lyme results in higher Cam K levels. Like SC does. Thanks for sharing. If I get enough results I'll compare to the pandas and SC data and let you know if there is any difference...We might not have enogh critial mass tho - I think I'd need at least 5 or 6 folks to share their CamK levels, and not sure we have enough Lyme people that have taken that test.

[philamom]

Just out of curiousity...do any of you have positive Cam K test results and how high were they? I'm only interested in those diagnosed with Lyme. I'm wondering if Lyme results in higher Cam K levels. Like SC does. Thanks for sharing. If I get enough results I'll compare to the pandas and SC data and let you know if there is any difference...We might not have enogh critial mass tho - I think I'd need at least 5 or 6 folks to share their CamK levels, and not sure we have enough Lyme people that have taken that test.

Dd9 Cam K was 137 in May 2009 (Anti-L=320, Anti-Tub=2000, Anti-D1=4000, Anti-D2= 16000). It was drawn right after a steroid burst, so not sure if it lowered the number.

Dd9 had a positive Igenex test in July 2010.

 

This may not be helpful since testing was done a year apart.

Edited October 7, 2010 by philamom

[PacificMama]

Yes, I believe Dr. Cunningham has been explicit lately in stating that lyme and other infectious diseases can raise the CamK level. I personally wish that visitors to this forum understood that positive results to the "Cunningham Test" are not specific to strep. People need to know that they must consider any number of infectious agents may be at play -- alone or in combination (in combination more likely).

 

And yes, my daughter recently did the Cunningham test and came in with CamK of 158. We are awaiting antineuronal report. She was on her long-term abx at the time, and was having no particular exacerbation when the blood was drawn.

We were at a regularly scheduled check-up with her llmd, and he has been working with Dr. Cunningham as of late. Given her symptom history, he asked if she would participate.

 

She was diagnosed with lyme several years ago. Definitively positive by different labs, and 7 bands positive on Igenex. She also had indeterminate bartonella results, but the assumption was that she had it and was treated along with lyme. While initially she was critically ill and had an array of physical symptoms, she ultimately had the exact symptoms that everyone here would classify as classic PANDAS.

*She was tested for strep titers regularly and never once had high titers. And to my knowledge, she has never had one strep infection.

 

I had planned on posting an update on our family soon (as more family lyme is involved), but I will say that we would consider her to be about 90%. She might consider herself 95%. And to the world, no one would suspect a thing. But yes, I feel a sense of fragility about those numbers.

[sf_mom]

Diagnoses of Congenital Lyme for all three of our children. We intend to retest CAM Kinase when all our children complete Lyme treatment and are in full remission of symptoms for a year.

 

DS1: 6 years old, CAM Kinase 124 (blood drawn 11 days post steroid burst)

 

DS2: 3 years old, CAM Kinase 148, hdIVIG treatment at 6 months of age due to Kawasaki's diagnoses

 

DD: 3 years old CAM Kinase 159

 

CAM Kinase results are also impacting by the use of IVIG (due to donor antibodies) and Madeleine Cunningham recommended we not retest until we were at least six months post our last treatment.

 

-Wendy

Edited October 7, 2010 by SF Mom

[KeithandElizabeth]

Hello:

 

Both of my children had elevated Cam K levels and they are both positive for lyme.

 

DD 11 had a CAM K of 179

 

DS 8 had a CAM K of 142 (2 weeks post steroid burst)

 

Interestingly, it does not appear to me that the severity in symptoms correlate with the level of CAM K. My daughter with the 179 level was mild, in terms of PANDAS symptoms, compared to our son. And our son had also reached the point of having SC symptoms. Again, he had had a steroid burst prior to testing.

Edited October 7, 2010 by KeithandElizabeth

[Iowadawn]

We have had the Cunningham test done twice. Both times the Cam was 184% for our DS. He was PANDAS and was recently dx'd with lyme & co-infections babesia & bartonella. Dawn

[justinekno]

My son's cam score was 170. He is Igenex positive for Lyme and is one band shy of being CDC positive. We think we are dealing with congenital Lyme. We have our first LLMD apppt on Monday.

[PacificMama]

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).

[sf_mom]

I have reported back to Madeleine Cunningham about our most recent diagnoses and am considering testing CaM Kinase for myself in the next couple of months. I've already had a slight indication in 2006 that I had auto-immune issues but I had no idea what was causing it at the time. I had a blood test preformed when I was pursuing ART (assisted reproduction technology) for the conception of my twins and post several miscarriages.

 

I also wanted to add the Madeleine Cunningham believes it takes a long time for Cam Kinase to settle and why I am putting off retesting for minimum of a year after remission of symptoms.

Edited October 7, 2010 by SF Mom

[philamom]

Thank you for the reminder. I just forwarded my dd's info to her office.

[norcalmom]

A year? wow. she told me I could take my son's after a few weeks...like 2 mos. and I thought Id wait 3 mos and that would be enough.

 

there is someone on the pandas page that got me thinking about this. her daughter has cam k score of 189 after 3 (mid dose) ivig's. I dunno what mid dose means, but she was not in exacerbation, and recently had a positive PCR(?) lyme test. All of the anit neuronals are in normal range. I think she is doing the ivigs every 4 weeks, so her first ivig would have been over 3 months ago. She is switching to a high dose.

 

I didn't ask if kids were in exacerbation for the cam score...probably should have. I was going to compare to the scores on her study - they have the sc and pandas scores broken out...but I think those draws were taken during exacerbation. I might be able to do an informal survey on the pandas board for (the difficult thing here is I only want responses from people who have tested negative for Lyme) Maybe I'll ask buster for some help - he did that big survey recently so already has a bunch of the data - camK scores were asked for, but we'd have to back out the known lyme scores.

 

Thanks for all the replies..keep them coming!

 

so far, looks like median cam K for lyme is 158 median pandas is 144..but I want to throw out the two lowest lyme scores (because one is a baby, and one had a recent steroid burst) and that would bring median to 164. median SC is 221.

 

Also - cunningham didn't have lyme in different group, so if lyme is higher in general, and she had some unknown lyme patients in her pandas group, the pandas group median would drop when the lyme was taken out, creating an even bigger differential.

[MichaelTampa]

Mine was 186,

- later diagnosed with lyme as symptoms

- male, age 42

- not in particular exacerbation, just regular ordinary crummy health

- no IVIG before or after

Edited October 7, 2010 by MichaelTampa

[norcalmom]

i should have asked a couple other question before I started this, so if you are replying for ht first time, or would like to reply again, I should have asked:

age and sex when blood was drawn. and

in exacerbation or not in exacerbation, and

post ivig or prior to ivig.

 

sorry and thanks. 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.

[justinekno]

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.

 

To answer your questions:

age and sex when blood was drawn - male, 10 yrs old

in exacerbation or not in exacerbation - we stay the same year round

post ivig or prior to ivig - no ivig done

 

 

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).

Edited October 7, 2010 by justinekno

[pixiesmommy]

could it have something to do w/mycoplasma? i just learned that mycopl. is tick-borne too:

http://www.lymememorial.org/Transmission.htm

 

sorry for typos - nursing