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I need a list of co-infections that could trigger PANDAS


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Hello everyone,

I am new to the forum. I have a telephone conference with my 13 yr old son's "PANDAS" doctor today. ($10 per minute) She has already drawn ASO and anti DNAse b which were negative, Mycoplasma IgG was positive, and Lyme screening test was negative. I know there are other diseases that can trigger PANDAS, but I'm so brain dead myself and I don't have time to read through all of the forums before the telephone conference today. If someone could send me a list of other tests that need to be done I would greatly appreciate it. That way I can request them during the conference today. My nerves are shot. Thanks.

Motherof2

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As far as I can tell, any viral, tick borne or bacterial illnesses can be a trigger. Here are some of the most common:

 

Cocsackie

HHV-6

EBV

Flu

 

Strep

Mycoplasma

 

Lyme

Bartonella

Babesia (sp?)

 

 

Less common but possible:

 

Pneumonia

Bronchitis

 

Kiddos doc tested for these also, but I have not heard any actual accounts of them triggering:

 

Chlamydia pneumoniae

Cytomegalovirus

Herpes Simplex Virus

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Who ran the Lyme test. Our daughter was negative on the overall test, but did have one positive and one indeterminate (there, but faintly) lyme-specific band. This was enough for our LLMD to diagnose her as being lyme positive. These bands could have only shown up with a lyme infection, nothing else. Because lyme tends to depress the immune system, tests don't often show up as blaringly positive.

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If your mycoP IgG is postitive but the IgM is negative, then you need to retest to see if your IgG is going up or down. Many, MOST - even pandas doctors - thing that negative IgM means you are negative, and the IgG means you had the disease in the past. That is not true. IgM will stop being made by most people if the infection becomes chronic, or if they contract the infection several time during their lifetime.

 

Just ask for Myco testing again in a month to see if the IgG is trending up, down or very little change (small fluctiation is OK - means its probably gone).

 

You can also get Cunningham panel done if you have ruled out most common infections. Moleculera labs runs those tests. It tests for the actual autoimmune reaction we think is happening in pandas kids, not for infections that trigger the autoimmune reacation.

 

You can have pandas without any infections. Its an autoimmune reaction to an infection - which persists after the infection is cleared.

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Rowingmom please PM me. I have several questions for you and I don't want to overwhelm this topic. THe Lyme test was the basic screening test done by Quest, which I know is not dependable. I know we really need the Igenix test done and I have already mentioned to our doctor. Problem is the PCR part of the Igenix test may be affected by antibiotics and my son has been on antibiotics for a month now. We can't stop them because he is having his tonsils out next Thursday. To be honest I am scared to stop them because his myco-p IgG was positive. He is currently on BIaxin 500 bid.

 

Norcalmom, I already asked our doctor about rechecking the mycop IgG and she said too early to check. I agree with you- I think we may be seeing changes in the IgG level if there was active infection and the IgG level would be stable if not. For now I will defer to the doctor.

 

The Cunningham panel has been drawn and we are waiting for results, but Dr. K in Chicago says that would not stop him from giving IVIG to a PANDAS kid if the Cunningham panel was normal. I paid $500 for a phone conference with him.

 

What I really desperately need right now is some guidance about what tests to order to look for co-infections. Mayzoos list was very helpful-thank you. The fungal/yeast suggestion was interesting, but how would I test for it? My son's PANDAS doctor has just started seeing patients. She has a heart of gold, but I want to make sure we are not MISSING anything. I am sure she would be willing to order whatever I reasonably suggested.

 

We are strongly considering IVIG next month, but i don't want to make the mistake of missing co-infections and then having IVIG failure because co-infections weren't adequately treated prior.

 

If you guys know other members who could chime in with some advice for me, could you please PM them too and ask them to respond to this topic or respond to me personally. Like so many other mothers out there, my life has come to a screeching halt. My son has declined rapidly in the past four months into terrible OCD. He had a bad strep throat last July and really hasn't been the same since. Just before his rapid decline he had an orthodontic appliance placed in his mouth. (I found out later from Dr. K that dental work can trigger a PANDAS flare) I wish the cure was as rapid as his decline has been. Thanks.

Motherof2

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