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Lyme Test Results for PANDAS Kids


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I apologize if this gets long. And I want make clear up-front that I totally believe both Lyme and PANDAS are distinct, dreadful disorders that often go tragically undiagnosed due to "medical controversy" swirling around them.

 

So our ds has always seemed like a classic case of PANDAS to us.

  • Rapid symptom onset after high fever
  • Overnight explosions of PANDAS symptoms (extreme OCD, tics, anxiety, dilated pupils, urinary urgency, anorexia, emotional lability, rages, crying jags, suicidal talk, etc.; "exorcist syndrome")
  • Rising ASO titer with each exacerbation; falling ASO with remission after successful treatment
  • Positive response to steroid burst and IVIG
  • Dramatic improvement on "Saving Sammy" dose of augmentin XR

 

The helpful docs we saw (and the 1st to diagnose our ds was an LLMD who originally suspected Lyme and put him on doxycycline, which didn't help) told us that PANDAS generally comes on like a firestorm while neuropsychiatric Lyme generally develops more gradually (and that seems consistent with the pattern I saw in "Cure Unknown"). So PANDAS seemed the better fit. Add to this the fact that our entire family has shown elevated ASO titers and it explains why our son's case was so recalcitrant. And augmentin XR has been his miracle drug; from what I could tell during web research, this isn't a common abx for Lyme.

 

That being said, all of the recent Lyme posts on here made us paranoid, so we ponied up the bucks to pay for the IGeneX Lyme and co-infection panels. Just got back the results, and they complicate things. Need help from the resident Lyme gurus to interpret this! All were negative except the following:

  • Lyme Immunofluorescence Assay (IFA) - INDETERMINATE (1:40)
  • Lyme IgM Western Blot - POSITIVE (18 kDa +, 31 kDa ++, 83-93 kDa +)
  • Erlichia chaffeensis IgM - POSITIVE (1:40)

 

We no longer have a local LLMD - our former LLMD passed away in late 2008. Our family doc is baffled by all this but wants to discuss these IGeneX results and determine next steps. Our son's doing great right now on the continued "Saving Sammy" dose of XR, but our local doc won't continue to refill this forever. I'm confused!

 

So I wanted to ask this question. There've been a number of posts about Dr. Cunningham acknowledging that Lyme sufferers can test positive on her CaM kinase II "PANDAS" test. Lyme and PANDAS obviously share a strong infectious component, and maybe an autoimmune component too. So, by the same token, is it possible that kids who are truly PANDAS may test "slightly positive or indeterminate" on the standard Lyme tests? Our ds's Lyme results are borderline, but his (and our entire family's) strep titers are strongly positive. Sigh.... Honestly, I was praying that the Lyme / co-infection tests would come back negative so I could sleep better at night.

 

(We also tested the entire family for Myco p - all negative, thankfully.)

 

I'm interested in people's perspectives on this. We meet with the family doc on 12/30 to plan next steps.

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  • Lyme Immunofluorescence Assay (IFA) - INDETERMINATE (1:40)
  • Lyme IgM Western Blot - POSITIVE (18 kDa +, 31 kDa ++, 83-93 kDa +)
  • Erlichia chaffeensis IgM - POSITIVE (1:40)

 

... is it possible that kids who are truly PANDAS may test "slightly positive or indeterminate" on the standard Lyme tests?

 

WD, I can't tell you how far my heart sank when I saw you post this. I'm no expert. I've only learned what I needed to know for my son. But these might help:

 

Explaining Western Blot tests: http://flash.lymenet...TML/022767.html

 

WB for Lyme: http://www.anapsid.org/lyme/wb.html

 

Understanding the WB: http://www.lymenet.d...sts/brenner.htm

 

31 is very lyme specific and only shows up after you've had lyme for more than 6 mos. I have no understanding of how long this antibody would hang around after lyme was eradicated. However, a double positive makes me think this isn't an ancient remnant of a disease. I don't know anything about erlichia.

 

I don't think a Pandas kid would produce antibodies to tick-borne diseases unless they'd been exposed to them. Your DS has double positives. You live in a lyme state. I think it's worth further investigation. Your son has made so much progress and has fought so very hard. Heaven forbid he should lose it all again when a script runs out.

 

Check the helpful threads on the lyme forum http://www.latitudes.org/forums/index.php?showtopic=10804 for ideas on finding an LLMD.

Try not to lose sleep. I can tell you I've slept world's better since my DS started lyme treatment. These results aren't a bad thing. You may have just defused a ticking bomb before it exploded. WD stands for Wonderful Dad!

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Hi Worried Dad,

 

I'll chime in... but I'm sure other lyme folks will offer advice too.

 

The lyme IGM is definitely positive. And the fact that you have positive Erlichia is pretty telling too (as they would often be found together). Here is a link to more info on Erlichia:

http://www.lymedisease.org/lyme101/coinfections/ehrlichia.html

 

Not sure if your original doctor was truly an ILADS treating LLMD, or just an ifectious disease specialist? But no matter, I would just have to say that there is no typical way an tick borne disease comes on. The classic way you read about lyme is that symptoms manifest following what seems like a bad case of the flu. But it doesn't always have to be that way.

 

There really is no such thing as borderline results per se. If you see some sort of reactivity in the western blot, that's all you need to start considering things. That is, more bands positive does NOT mean more, or sicker, lyme. (and I'm using lyme to really mean all tick borne diseases).

 

I would advise you to find your way to a LLMD as soon as possible. They will help you sort through things, and you can take it from there. And you can take comfort that you will be prescribed abx for as long as your son is improving, and until he is symptom free. I'm sure you've read enough here to know that the key is the combination, and rotation, of abx that does the trick. So yes, your augmentin may have been helping, but it's not going to get you to the finish line.

 

Strep problems can most certainly be chronic when there is other underlying infection. There are a whole list of people on the lyme forum to attest to that.

 

I think you are in Michigan? There is an LLMD in Saginaw that treats kids. You could contact the Michigan Lyme group for contact info. Also, another in Chicago area. Aand other excellent docs within driving distance. See the helpful links folder in lyme forum for how to find llmd.

 

Honestly, while it is not a diagnosis you want, I always tell people to be thankful for the positive test results (especially on the coinfections). Because when you know the enemy, you know how to treat it.

 

Best of luck.

Mary

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Oh my... I have been away from this forum for too long! Can someone please tell me about Dr. Cunningham's "test" for PANDAS? I did not know one existed... or has she perhaps refined the DSO titers?

 

WD, I don't know if you remember me as I have not posted in probably about a year, but I remember you. I'm so sorry to learn you are now facing a whole new set of issues, perhaps inter-related. I can't speak to the lyme testing; I'm sure there are others here who can help with that as Mary has.

 

Denise

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Worried Dad: I think LLM and PacificMama have covered a lot in their posts and concur with everything they have stated. I'm attaching an explanation of what each band means for your review. My girlfriend's son also had Erlichia and they were able to eradicate in 16 weeks with the right antibiotics. There are several good LLMD in the area and you might reach out to Pixiemommy (Chicago Area).... their Dr. seems very knowledgeable.

 

As you know, my husband also has unresolved strep titers, he was treated for strep over the last 10 months and those titers went up instead of down. Our LLMD continues to investigate the cause... He also has some specific Lyme bands on his results and will be doing provocation testing on him in January. We have seen nothing short of a miracle for all of our children. I suspect 'any remaining' symptoms your son currently has will resolve with treatment and you will no longer be fearful of going off antibiotics when he is fully recovered. I have heard Augmentin XR being used for Lyme..... I believe Lyme Mom's son was treated with it for some time.

 

9 cross-reactive for Borrellia

12 specific for Bb

18 unknown

20 cross-reactive for Borrellia

21 unknown

22 specific for Bb, probably really the 23/25 band

23-25 outer surface protein C (OspC), specific for Bb

28 unknown

30 unknown; probably an outer surface protein; common in European and

one California strain

31 outer surface protein A (OspA), specific for Bb

34 outer surface protein B (OspB); specific for Bb

35 specific for Bb

37 specific for Bb

38 cross-reactive for Bb

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia

45 cross-reactive for all Borellia (sometimes people with Lyme who have

this band positive also have the co-infection Ehrlichiosis)

50 cross-reactive for all Borrellia

55 cross-reactive for all Borrellia

57 cross-reactive for all Borrellia

58 unknown but may be a heat-shock Bb protein

60 cross reactive for all Borrellia

66 cross-reactive for all Borrelia, common in all bacteria

83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane

93 unknown, probably the same protein in band 83, just migrates differently in some patients

Edited by SF Mom
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Sigh, worried dad...I am sorry you are having to explore lyme/co-infections but really glad you are doing so. I know how hard you guys have fought for your son but I would hate for your son to slip once taken off HD augmentin. He is positive for lyme and a co-infection. It's tempting to look past these results as a parent who has already fought so hard but I urge you to seek the advice of an LLMD as others have already advised. You may have beaten the lyme in to cyst form and symptoms may have resolved while doing so but don't kid yourself. It's not gone. Lyme treatment requires follow through with cyst busting drugs to truly get it all. Co-infections require specific antibiotics. This task is daunting but you have come this far, don't stop now. I really believe you are more than half way there but only a really good lyme doctor can advise you now. The antibodies to the bands your son tested positive for are very lyme specific and do not cross-react with strep. Good luck and big hug. It's better that you know now so your son is truly able to beat this illness.

kim

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WD,

 

I'm not sure what those results mean or any of these Lyme results mean because no matter what the symptoms, no matter what the lab results some will say pursue lyme. If the results are negative or indeterminate, your kid is sooo sick the lyme is hiding. If you're positive, well, there you go, no doubt. I'm not a scientist, but I trust my instincts and I can't make any sense of it-everyone and their mother, father, sisters and brothers has lyme.

 

Whether all these kids and parents actually have lyme or not; I don't know if it matters. Parents and kids are reporting positive results from the "lyme" treatment and on that note I say that is fantastic news! Even if it turns out down the road much of the lyme turns out to be cross reactivity for PANDAS/PITAND, well then these families have discovered more treatment options for the toolbox and that's awesome too; no harm, no foul. We are all here to get our kids well, not win a Nobel prize in medicine!

 

I tried psych meds for my girl for years trying to get her some relief of her symptoms; meds for bipolar, OCD, depression, seizures, blood pressure, ADHD; if any of them had worked I wouldn't have cared what they called it as long as my kid was well and thriving toward an independent, happy life. But they didn't work and that's why we kept looking and getting more opinions. If the treatment protocol for PANDAS stops resulting in improvement for my girl, you bet I would pursue all possible treatment options available including lyme protocol treatments to get her well.

 

Your son is doing well now, so I don't know if you want to "poke the bear" (pun definitely intended!!!)

 

I'm sure this post isn't going to win me any popularity contest, but I just try and call em the way I see em. Take that for what it is worth and know I genuinely wish everyone's children wellness.

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Hi Worried Dad:

 

Well, you definitely have a positive Erlichia test and this is usually seen with lyme disease. Again, band 31 on the IGM usually represents an older lyme infection.

 

I also think the lyme explains your son's difficulties in eradicating strep, although there are many different opinions about this topic.

 

I agree with the previous posts in terms of finding a good ILADs LLMD. As momofgirls mentions, long term antibiotics usually force lyme into cyst form and you may even see a relief of symptoms once lyme is in cyst form, but a future infection or trauma can bring the lyme out of cyst form. Lyme can remain in cyst form for years! Hence, the incorporation of a cyst bursting drug, like Tindamax or Flagy, is critical in lyme treatment.

 

I agree with SF Mom in that once you treat a possible lyme infection as well as all of the coinfections, you will no longer be as fearful of strep. (Of course, I have not reached this point yet!)

 

I was so scared when we first figured out the lyme component, but eventually I have found comfort in knowing the source of our children's issues. Many families are finding that lyme and/or mycoplasma is an underlying issue to their strep problems.

 

 

My thoughts are with you during this very confusing time.

 

This is a journey, but this is curable!!!

Edited by KeithandElizabeth
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Brian:

 

These results are similar to what we got. You're the 3rd person I've seen who's results were so exactly similar to my sons. It's very puzzling all these PANDAS diagnosed kids now are being diagnosed and are improving with Lyme treament. I'm so grateful for the parents who have shared what they've learned. I think in a year or two we'll be able to look back and it might be more clear, but for now we're all just in the thick of it.

 

I've been sitting with our results a while, trying to find the energy to move forward. It's hard when your child is so much better. I teeter between just being so grateful for the improvement he's made and knowing I have to keep looking for answers for this now that I have this info. After consulting with our doctor, we have chosen to re-test. Band 31 can be cross reactive with EBV which we know he has,and other viruses leading to false positives, so we are doing the 31 band specific confirmatory test. This "should" confirm if the positive result on that band is indeed due to lyme or something else. If you find a good LLMD in Michigan, please PM or email me as we are probably headed that direction as well...

 

-Rachel

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It's interesting--our results are similar--not exactly the same. But what I've noticed is the numerous PANDAS kids who are testing "31++". IT's the same band...same number of +'s. Very interesting.

 

Brian:

 

These results are similar to what we got. You're the 3rd person I've seen who's results were so exactly similar to my sons. It's very puzzling all these PANDAS diagnosed kids now are being diagnosed and are improving with Lyme treament. I'm so grateful for the parents who have shared what they've learned. I think in a year or two we'll be able to look back and it might be more clear, but for now we're all just in the thick of it.

 

I've been sitting with our results a while, trying to find the energy to move forward. It's hard when your child is so much better. I teeter between just being so grateful for the improvement he's made and knowing I have to keep looking for answers for this now that I have this info. After consulting with our doctor, we have chosen to re-test. Band 31 can be cross reactive with EBV which we know he has,and other viruses leading to false positives, so we are doing the 31 band specific confirmatory test. This "should" confirm if the positive result on that band is indeed due to lyme or something else. If you find a good LLMD in Michigan, please PM or email me as we are probably headed that direction as well...

 

-Rachel

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Hugs WD! I will chime in although you have already gotten excellent feedback. Based on our experience with pandas and lyme, I would consider your test results to be lyme specific and lyme treatment warranted. I feel, that if there are things here we don't understand (and I imagine there are) and if pandas will skew the lyme tests to false positive, the treatment of lyme will still help as we have seen from those here who have gone before us.

 

My dd9's lyme test came back IND and dd8 and I were positive. So for the two of us who are positive we are moving forward with treatment and for dd9, we are doing a trial period to see #1 how does she respond (improvement and/or obvious herxing) and #2 to see if we can draw out a positive test (common after a period of treatment).

 

In one way, I am glad I can experience with medication what my daughters will experience and after 6 weeks on treatment it's nothing short of amazing. I have improved in so many ways that although I have a long recovery ahead of me, I am looking forward to seeing my daughters respond as well.

 

At any rate, good luck and I will look forward to hearing how things progress with you guys.

 

Susan

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Rachel

 

We did do the 31 band specific confirmatory test with regards to my results. It was positive and I am much, much improved with treatment. BUT, I need to add that some parents have done the band 31 confirmatory testing, results were negative and the child still had Lyme. Thankfully, these children were under the care of a good LLMD and alternative testing or testing through other labs provided confidence in diagnoses. Apparently, some of the specialty labs other than Igenex are better for co-infection testing. The provocation DNA testing provides very conclusive results when positive and how we discovered Lyme for our oldest.

 

I urge you to try a four month trail of combo antibiotics supervised by a good LLMD prior to giving up on the idea of Lyme (positive or not for Band 31 confirmatory testing). 'Many' children 'depending on how they are co-infected' do see rapid improve in this time period with a slow and steady progress afterwards 'minus herxing periods' when antibiotics are rotated. Lyme or not, I can not express how effective the treatment protocol can be.

 

I sure hope both WD and yourself can find a wonderful Dr. locally to you to guide you through this process.

Edited by SF Mom
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Band 31 can be cross reactive with EBV which we know he has,and other viruses leading to false positives, so we are doing the 31 band specific confirmatory test. This "should" confirm if the positive result on that band is indeed due to lyme or something else. If you find a good LLMD in Michigan, please PM or email me as we are probably headed that direction as well...

 

-Rachel

 

Thanks, Rachel, and thank you to everyone for the thoughtful posts and PM's. Yeah, I'm feeling a bit like a "wornoutdad" right now.... :(

 

As folks here have advised, we definitely plan to try contacting an LLMD. Being a bit OCD about all this myself, I contacted ILADS a while back and they sent me contact info on one LLMD in our area (SW MI), but they didn't know if she accepts pediatric patients. Guess we'll find out next week. And I very much appreciate the feedback from the more "Lyme literate" folks on here. (I researched Lyme 4 years ago, when we thought that's what ds had, but it's pretty hazy now.)

 

But I still do have a lingering question about this. Our original LLMD started Lyme treatment (doxy) 4 years ago as a precaution but when the Lyme tests were negative and the ASO was highly elevated, he diagnosed ARF/SC, later PANDAS, instead. The IGeneX results do appear borderline according to their lab report. And - right in the lab report on the IgM Western Blot that was positive - they state "infection with HSV, EBV, HCV, and/or syphillis may give false positive results." If IGeneX, who I think clearly is considered to have expertise in this area (based on the consistent recommendation to use them for Lyme testing), acknowledges that other viral / bacterial infections can skew the result, then isn't it at least plausible that GAS infection might do the same?

 

Not saying we don't need to pursue Lyme further with another LLMD. We do, and we will. But here's my secret fear: if we're asked to stop the XR and rotate to new abx, and it really is PANDAS (remember the entire rest of our family still have elevated ASO, so our house is Strep Central), what if that does more harm than good? And other folks on the forum have posted about stopping abx when things were going well, seeing relapse, and then resuming the formerly effective abx without seeing the same benefit. That would be tragic to say the least!

 

I realize a sharp LLMD may share the same fears and may say "stay on the XR until we resolve your family's ASO mystery, but let's add Abx A to the mix." And of course, we as parents always have a say in any medical decision. (Boy, have we learned that lesson in the past 4 years!!!) It just seems like the science around PANDAS makes sense, the animal model studies at Columbia and Tel Aviv seem to confirm the hypothesis, and it seems astronomically unlucky for our poor son to have both PANDAS and Lyme.

 

Anyway, thank you all for sharing your insights. They're invaluable. My wife and I have a lot to think about this coming week!!!

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FYI, somebody asked about which tests we did. We did the IGeneX 4090 (Basic Lyme) and 5090 (Complete Co-Infection) panels. Didn't do the PCR testing because that would require us to stop abx... and we can't do that right now. Still waiting to find out of our insurance will reimburse anything: reimbursement would be a great Christmas present!

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