Ohh myco -P, Oh myco - P,

[norcalmom]

I've been looking back over my son's blood test - looking for substantiating evidence for chronic infections.

HIgh monocytes. high eos, Low overall IgG - not low enough to cover IVIG, but lower than normal range, l makes no strep pneumoniae titers. Low iron (ferretin), and other minerals, despite being on iron rich diet.

 

I also consider the fact that the Cam K only went down to 132 one of them. Why? because a chronic infection would cause both inflamation as well as an overreactive immune system (which has been documented all along with the high monocytes). And just like kids with strep WITHOUT pandas - who have a median cam K of 135, I'm assuming other types of infections know to cause pandas (mycoplasma and lyme) would elevate the Cam K as well. Lyme's a given on that one - she has already said lyme with highly eleve cam K. What I don't know is will Lyme (or mycoplasma) WITHOUT neuro -pychological symptoms elevate Cam K.

 

All of these number indicate a chronic infection. they can also indicate other things, like lupus, leukemia, or other autoimmune disease. but once I saw the IgG up, I knew he had that.

 

There is other testing for mycoplasma. You can also do PCR testing.

 

IF you have other markers of chronic infection - and don't have full resolution of pandas - and a consistently above average Cam K (130 is still pandas range!). My son's cam k as 176 - when he was at baseline with almost no symptoms. I've no idea how high it was during exacerbation. If you look at the study, how high it was didn't matter. The very high high ones went down to normal too. (at least the same percent did - as memory serves, not looking at the study). So I could stand to be corrected, but I do recall wondering if IVIG was as effective with very hig cam K, as with lowish - and I think I recall that it was.

[sf_mom]

As you know... we have fairly definitive results for LD with positive urine PCR, positive Babesia PCR, positive Bartonella PCR, positive for several viruses, no strep titers in the younger two children and positive treatment response. Our CAM Kinase II results were the following.

 

Older DS: 126, He was 11 days post a 5 day steroid burst which could have impacted results. He had a primary TIC presentation with mild OCD at sudden on-set. Anti-tublin was elevated to high side normal, everything else normal. Had 3 hdIVIGs

 

Younger DS: 148, He had OCD, rage behavior, minor TICs but lacked sudden on-set, predominate lupus like rashes. One of his anti-neuronals was top end of normal range which was a noted trend for PANDAS by Madeleine, everything else normal. Had 1 hdIVIG at 5 1/2 months old for what was thought to be Kawasaki Disease also consider a possible auto-immune disease. He also had other markers that pointed to chronic infection/viruses of low WBC, low RBC, high Lymphocytes, low IgG 1 and 3s, no strep pneumo titers, etc.

 

Younger DD: 158, No OCD or TICs, high anxiety, underweight, sick often, predominate lupus like rashes. None of her anti-neuronals were elevated. She had other markers that pointed to chronic infection of low WBC, low RBC, high Lymphocytes, extremely low IgG 1 and 3s, no strep pneumo titers, etc.

 

Interesting herx response... When we started cyst busting with daily tindamax our older DS broke out in a knuckle and back of the hand rash that is typical of Lupus. It hurt, it looked like he had fallen and scrapped his knuckles. I am very thankful that particular rash has passed.

 

There is a lot of cross over symptoms with Lupus/Lyme and Lyme/PANDAS so I will be interesting to see if they will be able to decipher the CAM Kinase II results in the future. My children seem to have little bit of Lupus/Lyme/Pandas and also have a high viral component. Its hard to say concretely what the true driver of symptoms is in our children... chronic infection, auto-immune component, viruses, genetic predisposition. I have a hard time with the genetic predisposition because my children are not biologically related but were carried by me in-utero thanks to assisted reproductive technologies.

[lfran]

Can we continue to get camkinase levels done? I thought Dr. Cunningham's lab was the only place, and that she had stopped.

 

Please let me know.

 

Thanks.

 

I've been looking back over my son's blood test - looking for substantiating evidence for chronic infections.

HIgh monocytes. high eos, Low overall IgG - not low enough to cover IVIG, but lower than normal range, l makes no strep pneumoniae titers. Low iron (ferretin), and other minerals, despite being on iron rich diet.

 

I also consider the fact that the Cam K only went down to 132 one of them. Why? because a chronic infection would cause both inflamation as well as an overreactive immune system (which has been documented all along with the high monocytes). And just like kids with strep WITHOUT pandas - who have a median cam K of 135, I'm assuming other types of infections know to cause pandas (mycoplasma and lyme) would elevate the Cam K as well. Lyme's a given on that one - she has already said lyme with highly eleve cam K. What I don't know is will Lyme (or mycoplasma) WITHOUT neuro -pychological symptoms elevate Cam K.

 

All of these number indicate a chronic infection. they can also indicate other things, like lupus, leukemia, or other autoimmune disease. but once I saw the IgG up, I knew he had that.

 

There is other testing for mycoplasma. You can also do PCR testing.

 

IF you have other markers of chronic infection - and don't have full resolution of pandas - and a consistently above average Cam K (130 is still pandas range!). My son's cam k as 176 - when he was at baseline with almost no symptoms. I've no idea how high it was during exacerbation. If you look at the study, how high it was didn't matter. The very high high ones went down to normal too. (at least the same percent did - as memory serves, not looking at the study). So I could stand to be corrected, but I do recall wondering if IVIG was as effective with very hig cam K, as with lowish - and I think I recall that it was.

[norcalmom]

As far as I know they are no longer running the tests. They are in the process of opening a commercial lab, and then you can get the test done through a regular channel. You can look up Dr Cunningham and her team on the University of Oklahoma website and email them if you wan to ask them directly when and how to get the test.