PANDAS/PANS tests

[kc35]

I am seeing a ped who knows about PANDAS on Monday. How much they will know, I have no idea. I am not sure what tests I should insist on.

 

I have gone through the posts but it is very overwhelming. It seems like no matter what test one does, even if it is negative, still doesn't exclude the possibility of PANDAS by strep or by Lyme disease. Since I am in the beginning stages of this path I would like to know what tests do you all think are the most important in determining whether it is PANDAS. I have deer in my backyard everyday so Lyme is not an impossibility.

 

So far I have seen strep titre blood test, C3A/C4 test, mycoplasma, Western Blot for Lyme, Cunningham panel, Igenex panel. Which tests are the best initial tests to ask for?

 

Are all cases of tics/Tourettes really some form of PANDAS by strep/lyme/mycoplasma....? I know no one really knows the answer but I would appreciate any thoughts on this. Thanks in advance.

 

 

 

[rowingmom]

In the case of lyme disease, the CDC, and indeed Igenex, require a certain number of positive bands to give you a positive result for lyme. If the number of required bands on the WB (Western Blot) is not met, the test will read "negative for lyme infection".

 

The CDC removed some of the lyme-specific bands from their WBs, because people who had been previously vaccinated for lyme were returning these bands as positive when they were tested for antibodies.

 

Igenex has retained the lyme-specific bands eliminated by the CDC. A LLMD will look for the presence of these lyme-specific antibodies. The strength of the response is not important. If a reaction is present, either indeterminant (there but weakly), +, or ++, the anti-bodies specific to borrelia are present, indicating a lyme infection. A weak response may be indicative of immune suppression. As our daughter is treated for bartonella, the number of reactive bands on her WB are increasing.

 

The results of the WB have nothing at all to do with the presence of coinfections - bartonella, babesia, ehrlichia, mycoplasma, RMSF, etc.

Edited October 4, 2013 by rowingmom

[PowPow]

 

 

The CDC removed some of the lyme-specific bands from their WBs, because people who had been previously vaccinated for lyme were returning these bands as positive when they were tested for antibodies.

Please understand, I am not trying to be argumentative, I am truly wondering, where is there "proof" that the CDC did this?

Why would the CDC do this & allow a test that they know is not complete?

Please- no governmental conspiracy theories on this: just wanting proof or evidence.

[LNN]

 

 

 

The CDC removed some of the lyme-specific bands from their WBs, because people who had been previously vaccinated for lyme were returning these bands as positive when they were tested for antibodies.

Please understand, I am not trying to be argumentative, I am truly wondering, where is there "proof" that the CDC did this?

Why would the CDC do this & allow a test that they know is not complete?

Please- no governmental conspiracy theories on this: just wanting proof or evidence.

 

PowPow-

The explanation of these events is in the book Cure Unknown by Pam Weintraub. The CDC uses certain bands for surveillance purposes only - a way to track increases or decreases in the spread of a disease. They themselves say their bands aren't meant to be the end of discussion for making a diagnosis. After the lyme vaccine was available for 2 yrs in 2000-02, the CDC felt it would be unwise, from a surveillance viewpoint, to include bands 31 and 34 because they might end up counting people in their numbers who'd been vaccinated, not infected.

 

That mainstream labs continue to CYA by using the CDC surveillance bands is criminal - but the fault lays with the labs. Of course, it would go a long way if the CDC grew a spine and "recommended" that the bands be considered for diagnostic purposes. But the politics and back story are all in Cure Unknown - a must read IMO, even for "just Pandas" families, because the politics and similarities between the two diseases from a public policy, public understanding perspective is scary.

[LNN]

KC - you're right - there is no lab test that can prove or disprove Pandas, Pans, lyme or any of it. For most of us, the "proof" comes when we see improvement with abx and declines when they're taken away. But having labs certainly helps.

 

To get a feel for the role of strep in your child's symptoms, I'd ask for ASO and AntiDNase B titers. These are usually covered by insurance.

Some kids don't make high titers, sometimes you miss the window where titers will be high, some labs only report positive or negative, not a numeric value, making it much less useful. But your best bet is to do these tests twice - once now and once 3 weeks from now. It's not the numeric value that's as important as the direction of that value - did it go up or down? So discuss this with your doctor and see if s/he is willing to order the labs twice, 3 weeks apart.

 

You can also do the Cunningham/Moleculera tests. Pandas specialists put value in this test. Pandas naysayers won't. But it's $900 out of pocket and I don't know if anyone's insurance has covered it. So don't feel you "have" to do this test. That money may be better invested in seeing a specialist or an LLMD. For what it's worth, my DS had this test done when it was still a research study and the cost was "only" $400. His CamKII result was 179 and he was "highly likely" Pandas, which he does indeed have, plus undiagnosed lyme at the time. My daughter was tested and her CamKII was 183, also "highly likely" Pandas. Yet she was never as severely sick as my son. We did treat her for lyme for 8 months after indeterminate lyme labs and then with methylation supplements and she's now rock solid. Gets sick like a normal kid, tho usually only colds, not bacterial infections. I really don't consider her to have Pandas. You can do the Moleculera test and it will help you if you see a Pandas specialist, but if money is at all a consideration, I'd hold off and let a Pandas specialist make a clinical diagnosis. JMO.

 

If lyme seems like a reasonable possibility, you can ask for a western blot from quest as a first pass. Understanding that there are reasons a negative on this test may not mean anything, there are some people who do get positive bands on this test (which is covered by insurance) and then you're spared the expense of Igenex. Your local dr. will probably order this for you but probably won't see the need to order Igenex. You'd probably need to see a Pandas specialist or an LLMD (lyme literate MD) to order this. You pay for the test out of pocket but then Igenex sends you the paperwork to submit your own claim. We were reimbursed 60%.

 

Whether you ask for ASO/AntiDNaseB and a western blot at the same time depends on how flexible your doctor is. Pick your battles. if you can only ask for one, go with the strep tests as a first step.

 

C3a and C4a are labs you can do as another way of looking for lyme if a WBlot leaves you wondering. These are markers in the immune compliment system that show activation of certain immune system pathways that are usually called to action in lyme disease and mold illnesses. They can tell you the body is fighting something, it just cant tell you exactly what that something is. They're markers for inflammation. If you go down the lyme path, you may find yourself doing these, but at your point in the journey, without a doctor who'll know what to do with the results, I think it's premature and you'll be considered nuts for asking for the others already. I'd hold off.

 

For mycoplasma - again depends on your relationship with your dr. It's a standard lab test, covered by insurance. But if your DD doesn't have a cough, doesn't look like she has walking pneumonia, s/he probably won't order it for you right off the bat. It's worth doing, but maybe ask for it if the other tests aren't revealing. Or if you end up seeing a specialist.

 

So my own personal priorities would be 1. ASO/AntiDNase 2. Western Blot 3. Mycoplasma 4. C3a/C4a 5. Moleculera (due to the expense)

 

But I'm sure others would have a different order.

[PowPow]

I would add autoimmune workup to llm's preferred labs.

Sed rate

ana

dsDNA

Ena

 

Starts to set up a case for autoimmunity, if there is one.

[3boysmom]

I would also test for viral infections. Coxsackies is a popular problem with our PANS kids. Also, yeast issues.