why don't they test for this?

[norcalmom]

I've read repeatedly that this "rouge" antibody is the causes the cam K and antineuronal disfunction we see in out kids. It's 24.3.1

 

Also wonder about the DA17 marker (was it 17 or 18??)...

 

Why don't they test for the 24.3.1 antibody and or the marker- anybody know? Is a high cam K or antineuronl a conclusive sign that the 24.3.1 is there?

[peglem]

I've read repeatedly that this "rouge" antibody is the causes the cam K and antineuronal disfunction we see in out kids. It's 24.3.1

 

Also wonder about the DA17 marker (was it 17 or 18??)...

 

Why don't they test for the 24.3.1 antibody and or the marker- anybody know? Is a high cam K or antineuronl a conclusive sign that the 24.3.1 is there?

I think the 24.3.1 is Cunningham's anti-lysoganglioside.

[eljomom]

The million dollar question is what do you do to get rid of this antibody...or get it to not be "rouge" any more...

Edited March 15, 2011 by eljomom

[norcalmom]

I dont think it is - antilysoganglioside has been around for a while. There are other studies on it.

 

So sorry to hear about your weekend Peg - I hope you and Allie are feeling a little better now. I have to say, I've been reading a lot about chronic infections and it sounds like you may be dealing with one (or several). You may want to look into PCR testing for the top 5. I think its the only way to test for chronic infections personally - the igg's tell you nothing, and the igm tell you very little and give you false sense of security if negative - as matter of fact - it WILL be negative if the infection is chronic. And, I think you can still get these done while undergoing ivig, because they don't test antibodies (not sure about that though). If she does have a chronic infection, its more likely that she has more than one...given the amount of time she's been sick. ..and more likely messed up immune function, which leads to more to infection. Its a wicked cycle.

 

One of the slides that Cunningham had in that presentation that was removed from the board, she basically hypothesizes-there are 4 things that make a host succesptible to pandas. And, obviously if you belong to more than one of the groups, the higher the risk (and more difficult to treat).

 

her slide said - Host Susceptibility - and it had 4 inputs - Genetic, Immunologic,Types of Exposures and Neurologic (I think she means increased familiar rates of tics - that is on another slide) ....She still has strep as the trigger in all cases..

Now, I'm guessing since there is no audio along with the slide , but "types of exposures" to me would be lyme, mycoplasma, (and other infections, or virus, or even vaccines - things we know have set pandas kids off) .

[peglem]

Well, I'm hopeful that this new rheumy will help. She looked at my daughter w/o the autism filter. My daughter flapped her hands while she was there, something she hasn't done in years, but is "typical" for autism. She said lots of times that is how children attempt to loosen up their muscles if they're cramping. Makes a lot more sense to me than "stimming". The hospital pediatrician has a background in infectious disease (he said), but I don't think we'll get help there- strep carriage...blah, blah, blah. PCR testing? I'm not familiar with that...what is it?

[norcalmom]

My son - not autistic at all - had flaps. Does it in exacerbation almost exclusively. Looks more like he is shaking something off his hands. Any way -

 

PCR testing -from Wikipedia -

The polymerase chain reaction (PCR) is a scientific technique in molecular biology to amplify a single or a few copies of a piece of DNA across several orders of magnitude, generating thousands to millions of copies of a particular DNA sequence.

Developed in 1983 by Kary Mullis,[1] PCR is now a common and often indispensable technique used in medical and biological research labs for a variety of applications.[2][3] These include DNA cloning for sequencing, DNA-based phylogeny, or functional analysis of genes; the diagnosis of hereditary diseases; the identification of genetic fingerprints (used in forensic sciences and paternity testing); and the detection and diagnosis of infectious diseases. In 1993, Mullis was awarded the Nobel Prize in Chemistry for his work on PCR.[4]

 

 

Most tests test for antibodies to an antigen to see if the antigen is there. PCR - is looking for the genetic material of the actual antigen. Unfortunately, I was just reading that (at least in the case of mycoplasma) you need to be off antibiotics. At least for the blood test. There are also urine PCR tests.

 

I know for our lyme provocation test - my son and I were on high amounts of antibiotics for several days - that test was looking for dead bacteria in the urine. So we took urine samples days 2, 4,6. That I think is also a PCR test (and or Dot blot - whatever that is ..and it has some confirmation they do if positive to lower rate of false positive)

 

I think, ivig, theoretically, wouldn't interfere with it. Antibiotics might. may depend on what test. We haven't done it yet - but after a very, very high iGG for mycoplasma - we may do it ... I know.....so many tests...uggghh.

 

below is information from a chornic infection site that lists top 5 and the speciality labs for each of the tests -

 

 

1. MycoplasmaTest Panel (CPT: 87581)—Mycoplasma species test by PCR. This is a Mycoplasma general (all species) test. Some individual tests can be ordered (Mycoplasma fermentans, Mycoplasma pneumoniae). Justification: Almost 60% of CFS/FMS and 50% of Rheumatoid Arthritis (RA) and other autoimmune patients have one or more intracellular, systemic mycoplasmal infections similar to those found in a variety of chronic illnesses [Nicolson et al. Mycoplasmal infections in chronic illnesses: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis. Medical Sentinel 1999; 5:172-176]. Ultrasensitive and ultraspecific mycoplasma tests can only be done by a small number of labs, most university or government labs that have been trained by us under a U.S. government contract. Recommended Lab: VIP Laboratories of Reno, NV (http://www.vipdx.com/) Specimen Requirements: Contact laboratory for a specimen kit. The blood is collected, immediately mixed and immediately stored in a refrigerator until it is shipped (same day) in an insulated container overnight air courier to arrive within 24 hours.

 

2. Chlamydia pneumoniae Test (CPT: 87486)—Chlamydia pneumoniae by PCR. Justification: Many CFS, FMS, MS, RA and other patients have this systemic infection along with viral infection(s). We were among the few labs that developed the molecular tests that are now done for this type of infection. Recommended Lab: VIP Laboratories of Reno, NV (http://www.vipdx.com/) Specimen Requirements: Contact laboratory for a specimen kit. The blood is collected, immediately mixed and immediately stored in a refrigerator until it is shipped (same day) in an insulated container overnight air courier to arrive within 24 hours.

 

3. Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/). Specimen Requirements: Contact laboratory for a specimen kit. Collect in Red Top Tube, separate, and send in clear tube. Store in Refrigerator until shipment. Ship within one day of collection at Room Temperature.

 

 

4. HHV-6 Test (CPT: 87532)—Human herpes virus 6 (HHV-6) test by PCR. Justification: Many CFS and some FMS patients have this systemic viral infection, and it should be tested for in any autoimmune illness. Recommended Lab: VIP Laboratories of Reno, NV (http://www.vipdx.com/) Specimen Requirements: Contact laboratory for a specimen kit. The blood is collected, immediately mixed and immediately stored in a refrigerator until it is shipped (same day) in an insulated container overnight air courier to arrive within 24 hours.

 

5. CMV Test 07034 (CPT: 87496)—Cytomegalovirus (CMV) test by nested PCR. Justification: Many CFS and FMS patients have this systemic viral infection, and it should be tested for in any autoimmune illness. Recommended Lab: VIP Laboratories of Reno, NV (http://www.vipdx.com/) Specimen Requirements: Contact laboratory for a specimen kit. The blood is collected, immediately mixed and immediately stored in a refrigerator until it is shipped (same day) in an insulated container overnight air courier to arrive within 24 hours.

[EAMom]

In one of Swedo's lectures, she said that the D8/17 marker cell line died out...so we dont' have that test anymore.

 

However, I came accross this (haven't read the full-text) article on PANDAS anorexia that acts as if it is still possible to test for D8/17. Or maybe it's just not a very well-researched article and they don't know the cell line died? (And I wonder if someone could make a new D8/17 cell line?)

 

http://www.ncbi.nlm.nih.gov/pubmed/20148396

[nicklemama]

Am I understanding this correctly? Mycoplasma is found in 50% of RA patients? What happens if myco is eradicated from those RA patients? Do they no longer have RA? Is it even possible to eliminate myco in RA patients? Is the mycoplasma carried by RA patients infecting their PANDAS kids?

 

I have RA. I just had titers drawn for ASO antiDNAse B and mycoplasma IgM AB and IgG. My dh's were all negative.

 

We don't really know what is causing my DS's PANDAS. He is negative for strep and myco.

 

Cindy

 

 

 

1. MycoplasmaTest Panel (CPT: 87581)—Mycoplasma species test by PCR. This is a Mycoplasma general (all species) test. Some individual tests can be ordered (Mycoplasma fermentans, Mycoplasma pneumoniae). Justification: Almost 60% of CFS/FMS and 50% of Rheumatoid Arthritis (RA) and other autoimmune patients have one or more intracellular, systemic mycoplasmal infections similar to those found in a variety of chronic illnesses [Nicolson et al. Mycoplasmal infections in chronic illnesses: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis. Medical Sentinel 1999; 5:172-176].

[MichaelTampa]

Am I understanding this correctly? Mycoplasma is found in 50% of RA patients? What happens if myco is eradicated from those RA patients? Do they no longer have RA? Is it even possible to eliminate myco in RA patients? Is the mycoplasma carried by RA patients infecting their PANDAS kids?

 

I have RA. I just had titers drawn for ASO antiDNAse B and mycoplasma IgM AB and IgG. My dh's were all negative.

 

We don't really know what is causing my DS's PANDAS. He is negative for strep and myco.

 

Cindy

 

 

 

1. MycoplasmaTest Panel (CPT: 87581)—Mycoplasma species test by PCR. This is a Mycoplasma general (all species) test. Some individual tests can be ordered (Mycoplasma fermentans, Mycoplasma pneumoniae). Justification: Almost 60% of CFS/FMS and 50% of Rheumatoid Arthritis (RA) and other autoimmune patients have one or more intracellular, systemic mycoplasmal infections similar to those found in a variety of chronic illnesses [Nicolson et al. Mycoplasmal infections in chronic illnesses: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis. Medical Sentinel 1999; 5:172-176].

 

When people have chronic infections, the immune system is often warn out and there are often multiple infections. So, getting rid of mycoplasma might really help some people with RA, but others with RA are still going to have strep and/or lyme and/or viruses, and won't feel better until those are dealt with also.

[nicklemama]

I'm actually mulling over in my head if I even have RA or not. I definitely have the joint symptoms. I take plaquenil and it keeps it in check, mostly. I have a mild case of RA. I am also what is called sero-negative. My bloodwork has never shown any indication of RA. I do not have the RA factor. My sed rate is always normal. I don't show signs of inflammation through tests like those for C Reactive proteins. ANA normal. I was diagnosed in 1997. My diagnosis was made on clinical symptoms (don't we all know that!) because of the lack of evidence through my blood labs.

 

Hmmmmm......