Help understanding test results?

[Malke]

Hi all you awesome moms and dads,

 

I just got the results from some basic bloodwork our PANDAS-aware (but not expert) doc ordered. We'll be seeing her on Friday, but I wanted to see what you think, too...

 

A little background -- dd5 had a major PANDAS-like exacerbation the last two weeks of January, but it had been building for a while. When we got the bloodwork drawn, she had already been on abx (zith) for a week (I wasn't going to wait, it was that bad -- could barely talk at times, horrible sleep, raging, defiant, OCD really high, first-time tic, etc.) She is doing MUCH better on abx and has only been getting better, not worse.

 

My biggest questions are on the strep tests:

 

-ASO titer was 33, which looks low considering the range is 0-640. Does this tell me anything at all???

-AntiDNAse B titer is <70 in a range of 0-375. What does this tell me?

 

Also:

TSH 3.32 (looks like normal range)

EBV -- looks like it's negative

 

She also ordered a CBC and some blood chemistry, which all basically looks normal.

 

I *KNOW* something is wrong, and I think these results only tell me what it *isn't* if you know what I mean.

 

We'll see what the doc says, but what else should I be doing/looking for??? What kind of referrals or other tests should I be asking for?

 

Thank you so much.

 

Malke

[peglem]

The neg. ASO and AntiDnase tell you nothing. These do not rule out strep as a culprit. Many, many of our PANDAS kids have neg. titers, even with numerous positive strep cultures. If these are elevated or rising over time they are meaningful, but neg. titers do not rule out strep.

[SSS]

Hi Malke,

I vote for the Cunningham test.

xxoo Sarah

P.S.

Samantha's titers have always pulled normal/low- including the ones we re-did a couple of weeks ago, and you know how bad off we are right now---her thyroid has always checked out in range, and her CBC's.

[butterflymom]

=

Edited February 3, 2016 by butterflymom

[Malke]

Tammy made me think of another question I have for the doc *and* y'all...

 

DD5 has been on abx for three weeks, continues to improve, but how long do I keep the abx going? Our new doc-but-not-expert gave us a 3 month Rx for zith, but I'm not sure that's wise. My current plan is, if everyone is healthy in the family, we will go off zith in a week or so, but keep with the ibuprophen and/or other anti-inflammatories. Then watch and wait. However...

 

I have a wicked sore throat today, but the minute clinic rapid strep test was negative -- maybe I need to wait/suffer another day before something would show up? They're sending a second sample to the lab and I'll know tomorrow. I can't believe this isn't strep throat -- It's exactly the same presentation as last year (and before then I hadn't had strep in over ten years...), I will keep dd on abx at least as long as this is unresolved.

 

Thanks so much...

 

Malke

[LNN]

Given that you've had other alphabet soup dx's and her symptoms have improved so much with the zith, I would consider hunting down the culprit before stopping the abx.

There are two immune complex tests you can try -

 

C3d is something Dr B has measured in my kids. I can't find much online (that isn't over my head) but I take away the fact that it measures an immune response to an infection. Last spring, my DD's was 25 (above 8 is high). In Aug, it was 47. Last month, it was 94. During this time, she was having lots of GI and behavioral issues but all of her tests were coming back normal. Even her lyme test was only slightly lyme-y. But the fact that her C3d levels continued to climb told us that there was some sort of ongoing infection that was likely behind the behavior. So the C3d didn't tell me what the bug was, but it did give me the confidence to keep searching.

(she has recently been dx'd with bartonella)

 

The other complex you can test that may be covered by insurance (check with your company) are C3a and C4a complexes. Elevated complexes are implicated in lyme http://www.survivingmold.com/docs/Resources/Shoemaker%20Papers/Lyme_acute_C4a_1_08_glovsky.pdf

 

If all complex levels come back normal, it may give you a better feeling about stopping the zith. If they come back above normal, then you may have reason to keep digging.

[kimballot]

Given that you've had other alphabet soup dx's and her symptoms have improved so much with the zith, I would consider hunting down the culprit before stopping the abx.

There are two immune complex tests you can try -

 

C3d is something Dr B has measured in my kids. I can't find much online (that isn't over my head) but I take away the fact that it measures an immune response to an infection. Last spring, my DD's was 25 (above 8 is high). In Aug, it was 47. Last month, it was 94. During this time, she was having lots of GI and behavioral issues but all of her tests were coming back normal. Even her lyme test was only slightly lyme-y. But the fact that her C3d levels continued to climb told us that there was some sort of ongoing infection that was likely behind the behavior. So the C3d didn't tell me what the bug was, but it did give me the confidence to keep searching.

(she has recently been dx'd with bartonella)

 

The other complex you can test that may be covered by insurance (check with your company) are C3a and C4a complexes. Elevated complexes are implicated in lyme http://www.survivingmold.com/docs/Resources/Shoemaker%20Papers/Lyme_acute_C4a_1_08_glovsky.pdf

 

If all complex levels come back normal, it may give you a better feeling about stopping the zith. If they come back above normal, then you may have reason to keep digging.

 

I agree with immune complexes and also look for mycoplasma. That is another one that is fairly common. I would think about asking for an immune status panel to get an idea if he is having trouble fighting infections.

[colleenrn]

You are very, very lucky to get an extended prescription for Zithromax. I would most definitely not stop giving it to her. These kids really need a much longer course of antibiotics and zithromax is a great one to use with PANDAS. Have you tested everyone in the house for strep? Make sure they grow it out for a full 72 hours.

What dose is your dd taking and how much does she weigh?

Colleen

[Malke]

You are very, very lucky to get an extended prescription for Zithromax. I would most definitely not stop giving it to her. These kids really need a much longer course of antibiotics and zithromax is a great one to use with PANDAS. Have you tested everyone in the house for strep? Make sure they grow it out for a full 72 hours.

What dose is your dd taking and how much does she weigh?

Colleen

 

Hi Colleen,

 

DD is taking 200mg (1tsp) daily of Zithromax, and she weighs around 42 or 43 pounds.

 

I did get a throat swab for strep today b/c of a really bad sore throat, but I think that'll come back in 24 hours and I'm not even sure it is strep -- I was just a little worried, as I'm sure you understand, and had to make sure. Other than that, we haven't yet tested myself or my husband for strep (just the three of us here).

 

How should we test for being strep carriers? A throat swab, right? And tell our docs to grow it out for the full 72 hours, like you mentioned? At that point, I think I read that we should go on a course of abx ourselves if we test positive, and then get tested again?

 

Thanks for your perspective on the abx. My instinct would be to get her off abx as soon as possible -- daily abx from age 3 months to 3.3 years (for a mild birth defect in the urinary tract, now resolved) is what got us into this mess in the first place -- lots of yeast and leaky gut from that, which exacerbated her the sensory issues she was born with and probably made her susceptible to the PANDAS. But I may reconsider and keep her on them, especially if she seems like she's doing okay, with no side effects. We're giving custom probiotics (no strep strain) and she seems to be doing really well in her gut, all things considered. There's been less signs of yeast than before we started abx.

 

Why do you think our kids need a longer course of abx?

 

Thanks again!

 

Malke

[eljomom]

Malke--can you tell me what signs you go by for yeast??? Thanks!

 

You are very, very lucky to get an extended prescription for Zithromax. I would most definitely not stop giving it to her. These kids really need a much longer course of antibiotics and zithromax is a great one to use with PANDAS. Have you tested everyone in the house for strep? Make sure they grow it out for a full 72 hours.

What dose is your dd taking and how much does she weigh?

Colleen

 

Hi Colleen,

 

DD is taking 200mg (1tsp) daily of Zithromax, and she weighs around 42 or 43 pounds.

 

I did get a throat swab for strep today b/c of a really bad sore throat, but I think that'll come back in 24 hours and I'm not even sure it is strep -- I was just a little worried, as I'm sure you understand, and had to make sure. Other than that, we haven't yet tested myself or my husband for strep (just the three of us here).

 

How should we test for being strep carriers? A throat swab, right? And tell our docs to grow it out for the full 72 hours, like you mentioned? At that point, I think I read that we should go on a course of abx ourselves if we test positive, and then get tested again?

 

Thanks for your perspective on the abx. My instinct would be to get her off abx as soon as possible -- daily abx from age 3 months to 3.3 years (for a mild birth defect in the urinary tract, now resolved) is what got us into this mess in the first place -- lots of yeast and leaky gut from that, which exacerbated her the sensory issues she was born with and probably made her susceptible to the PANDAS. But I may reconsider and keep her on them, especially if she seems like she's doing okay, with no side effects. We're giving custom probiotics (no strep strain) and she seems to be doing really well in her gut, all things considered. There's been less signs of yeast than before we started abx.

 

Why do you think our kids need a longer course of abx?

 

Thanks again!

 

Malke

[Malke]

Malke--can you tell me what signs you go by for yeast??? Thanks!

 

 

Sure, no problem. When we were in the thick of the yeast problem last spring and summer, dd's outward signs looked like this:

 

- Yellow, 'fluffy', unformed, floaty poops (sorry to be so graphic, but it's one of the best ways to identify what's going on in the gut)

- Silly/giggly/hyper (some kids spin)

- Horrible hypoglycemia

- Unstable emotions, anxiety, seperation issues

 

Some of this can look a lot like PANDAS. It is sometimes hard to sort out what is yeast and what is something else, so we also had an Organic Acids Test (OAT) done in July through the Great Plains Laboratory (really easy, first morning pee, mail it back in) which gave us a fantastic picture of what was going on in her gut. Not only the yeast, but also markers for neurotransmitters and nutritional issues that told us what to do in terms of healing the damage the yeast had been doing. We are still working with a DAN for the nutritional healing and yeast protocol.

 

Personally, I think getting an OAT is a GREAT way of confirming yeast, especially if there's other things like PANDAS going on that might confuse matters in terms of identifying it through behavior. It totally takes out the guesswork. When we were having a hard time this past December '10 all I could think of by way of explanation was that it was yeast. We did a second OAT in mid-January which confirmed incredible improvement with the yeast issue and everything else, so that's when I knew that something was *really* wrong -- and that's how I came to understand it as PANDAS.

 

Hope this is helpful. Let me know if you have any other questions. I don't know PANDAS all that well, but I am happy to share my experience with a biomed/nutritional approach to healing.

 

Best,

Malke

[smartyjones]

Thanks for your perspective on the abx. My instinct would be to get her off abx as soon as possible -- daily abx from age 3 months to 3.3 years (for a mild birth defect in the urinary tract, now resolved) is what got us into this mess in the first place -- lots of yeast and leaky gut from that, which exacerbated her the sensory issues she was born with and probably made her susceptible to the PANDAS. But I may reconsider and keep her on them, especially if she seems like she's doing okay, with no side effects. We're giving custom probiotics (no strep strain) and she seems to be doing really well in her gut, all things considered. There's been less signs of yeast than before we started abx.

 

Why do you think our kids need a longer course of abx?

Malke

 

malke -- i totally understand your desire to get her off the abx -- we are following a different path than most on this forum with an integrative MD and homeopathy.

 

of course, all kids are different and all situations are different. . . .just to tell you our story. . . ds presented with "sudden onset" at age 4.5, behavioral symptoms. luckily for us, a behavioral therapist suggested pandas -- no one else thought any of these symptoms were anything like what we understood OCD to be. his titers were high and had a positive on culture. our useless ped at the time, threw him on a prefunctory 5 days of azith that were terrible -- later discovered lyme, possible herx - ?. we got a new ped who prescribed 30 days keflex and nystatin. a sinus CT showed all 6 cavities infected. he had 100% remission in about 3 days. he was back to my child before onset. i thought he was cured. about 30 days after end of keflex, he relapsed. i was so very unprepared for that. he went back on another 30 days of keflex and nystatin -- he did see improvement but not the full that had been before.

 

so -- based on my experience, i'd say keep your child on the abx that you have the prescription for. it sounds like you have a good handle on watching for signs of yeast. . . deal with that if/when it comes up but i'd say keep the abx going if you can.

 

after a year or so, we consulted with our current integrative MD. he does a type of ART testing. he diagnosed ds with a number of infections -- including strep. this was after about 18 months, 2 30-day courses of keflex, 9 mths of pleo sanum strep rememdy. ds is just now testing neg for strep after another 9 mths homeopathic strep remedy. it could be that the other infections had some type of relationship that was keeping/allowing the strep or it could have been the strep took a long time to kick. i definitiely believe strep can be in the body even while cultures are neg and titers are falling.