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Lyme Test Results for PANDAS Kids


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Wanted to share some feedback we received from leading researchers who have been very helpful to us over the past few years.

 

  • Dr. Leckman (who is based in CT so familiar with Lyme as well as PANDAS) recently met with both Dr. Charles Ray Jones and Brian Fallon to discuss their approaches to treating Lyme. Said he was quite impressed with Dr. CRJ, who uses antibiotics and IVIG in his practice (similarly to the PANDAS docs). Said they haven't seen a lot of Lyme among PANDAS patients but there have been a few. Given the symptom similarities and complexities, doesn't doubt that Lyme is sometimes misdiagnosed as PANDAS and vice versa. His advice for us was: if your ds is doing well on current abx, maintain a steady course.
  • Dr. Cunningham responded with some details similar to what P.Mom already posted ( http://www.latitudes.org/forums/index.php?showtopic=11478 ). She did add one bit of info that I found fascinating: "We do know that immune responses against group A streptococcal antigens may crossreact with the Lyme agent, Borrelia burgdorferi."

 

So personally, this reinforces to me that the testing isn't definitive enough at this point to clearly, unambiguously distinguish between PANDAS and Lyme / co-infections in some cases. As others have posted, the "Cunningham tests" for PANDAS/SC can also show positive (at least for CaM K II) for kids suffering from Lyme. And - as the IGeneX lab report repeatedly stipulates - other viral / bacterial agents (including GAS, per Dr. C) can trigger false positives on Lyme tests. At the end of the day, both PANDAS and Lyme remain primarily clinical diagnoses... and they have so much symptom overlap that it's awfully tough to distinguish between them.

 

We have an appointment with a new local LLMD next week. We intend to review the labs and have a frank discussion about our son's / family's repeated elevated ASO titers and remarkable progress on augmentin XR. He'd need to present very compelling arguments for us to risk "messing with a good thing" for our son at this point. Really just hoping he's a good guy who is open-minded and honest about the unknowns. If that's the case, he'll be an invaluable medical asset for our ds in the future, no matter how things play out. I'll post the key aspects of that discussion when I can. Hope 2011 is starting well for everybody!

Edited by Worried Dad
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Thank you for sharing the info you learned!

 

Wanted to share some feedback we received from leading researchers who have been very helpful to us over the past few years.

 

  • Dr. Leckman (who is based in CT so familiar with Lyme as well as PANDAS) recently met with both Dr. Charles Ray Jones and Brian Fallon to discuss their approaches to treating Lyme. Said he was quite impressed with Dr. CRJ, who uses antibiotics and IVIG in his practice (similarly to the PANDAS docs). Said they haven't seen a lot of Lyme among PANDAS patients but there have been a few. Given the symptom similarities and complexities, doesn't doubt that Lyme is sometimes misdiagnosed as PANDAS and vice versa. His advice for us was: if your ds is doing well on current abx, maintain a steady course.
  • Dr. Cunningham responded with some details similar to what P.Mom already posted ( http://www.latitudes.org/forums/index.php?showtopic=11478 ). She did add one bit of info that I found fascinating: "We do know that immune responses against group A streptococcal antigens may crossreact with the Lyme agent, Borrelia burgdorferi."

 

So personally, this reinforces to me that the testing isn't definitive enough at this point to clearly, unambiguously distinguish between PANDAS and Lyme / co-infections in some cases. As others have posted, the "Cunningham tests" for PANDAS/SC can also show positive (at least for CaM K II) for kids suffering from Lyme. And - as the IGeneX lab report repeatedly stipulates - other viral / bacterial agents (including GAS, per Dr. C) can trigger false positives on Lyme tests. At the end of the day, both PANDAS and Lyme remain primarily clinical diagnoses... and they have so much symptom overlap that it's awfully tough to distinguish between them.

 

We have an appointment with a new local LLMD next week. We intend to review the labs and have a frank discussion about our son's / family's repeated elevated ASO titers and remarkable progress on augmentin XR. He'd need to present very compelling arguments for us to risk "messing with a good thing" for our son at this point. Really just hoping he's a good guy who is open-minded and honest about the unknowns. If that's the case, he'll be an invaluable medical asset for our ds in the future, no matter how things play out. I'll post the key aspects of that discussion when I can. Hope 2011 is starting well for everybody!

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Wanted to share some feedback we received from leading researchers who have been very helpful to us over the past few years.

 

  • Dr. Leckman (who is based in CT so familiar with Lyme as well as PANDAS) recently met with both Dr. Charles Ray Jones and Brian Fallon to discuss their approaches to treating Lyme. Said he was quite impressed with Dr. CRJ, who uses antibiotics and IVIG in his practice (similarly to the PANDAS docs). Said they haven't seen a lot of Lyme among PANDAS patients but there have been a few. Given the symptom similarities and complexities, doesn't doubt that Lyme is sometimes misdiagnosed as PANDAS and vice versa. His advice for us was: if your ds is doing well on current abx, maintain a steady course.
  • Dr. Cunningham responded with some details similar to what P.Mom already posted ( http://www.latitudes.org/forums/index.php?showtopic=11478 ). She did add one bit of info that I found fascinating: "We do know that immune responses against group A streptococcal antigens may crossreact with the Lyme agent, Borrelia burgdorferi."

 

So personally, this reinforces to me that the testing isn't definitive enough at this point to clearly, unambiguously distinguish between PANDAS and Lyme / co-infections in some cases. As others have posted, the "Cunningham tests" for PANDAS/SC can also show positive (at least for CaM K II) for kids suffering from Lyme. And - as the IGeneX lab report repeatedly stipulates - other viral / bacterial agents (including GAS, per Dr. C) can trigger false positives on Lyme tests. At the end of the day, both PANDAS and Lyme remain primarily clinical diagnoses... and they have so much symptom overlap that it's awfully tough to distinguish between them.

 

We have an appointment with a new local LLMD next week. We intend to review the labs and have a frank discussion about our son's / family's repeated elevated ASO titers and remarkable progress on augmentin XR. He'd need to present very compelling arguments for us to risk "messing with a good thing" for our son at this point. Really just hoping he's a good guy who is open-minded and honest about the unknowns. If that's the case, he'll be an invaluable medical asset for our ds in the future, no matter how things play out. I'll post the key aspects of that discussion when I can. Hope 2011 is starting well for everybody!

Thanks Worried Dad for the update...look forward to hearing what you learn at your appointment!

 

I want to clarify that Dr. Jones is only recommending ivig with patients that have PANDAS. He did ask to see our Cunningham results. I will see him shortly, and again bring up the topic of ivig...as we have decided to hold off on any more infusions for the time.

Edited by philamom
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worried dad- is your son currently doing really well? Is he back to himself? Was the only reason that you tested him for Lyme was because you were paranoid or was it because you son started to collapse?

 

Hi, PhillyPA:

 

I'd say he's 95+% at this point. Can't say that he's totally back to where he was before this 4-year journey began - still struggles with homework load and is still very sensitive to light - but he's back to living a "normal life." Back in school after a 3-year absence, taking taekwondo and loving it, spending lots of time at the local teen center. For a kid who was literally unable to leave our home (a few rooms in our home) for several years, it seems like a miracle. But he's definitely still healing.

 

To be honest, we did some additional testing primarily as a precaution, because our son was a "recalcitrant case" (per Dr. K) and because we have this ongoing mystery of high ASO for our whole family. I'd read posts on here about other families plagued with high titers across the board that ended up finding a co-infection of some kind (Myco p., Lyme, others). Since our local docs are pretty much baffled by our family, we figured it was prudent to ask for more testing.

 

So, yeah... I think you called it right. I was feeling paranoid based on recent developments for other families on this forum. If the rest of our family didn't have stubbornly high ASO, we probably wouldn't have done the Myco p. and Lyme testing.

Edited by Worried Dad
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Sigh. It is so hard deciding what are the right decisions. We all want our kids to be 100%. I can tell you as a mom who has two boys with pandas that 90% back to normal is just as distressing to me as 30% back to normal.

 

Also, the only reason I used the word paranoid was because it was in your original post. Not meant to be in any way aggressive.

Edited by PhillyPA
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Sigh. It is so hard deciding what are the right decisions. We all want our kids to be 100%. I can tell you as a mom who has two boys with pandas that 90% back to normal is just as distressing to me as 30% back to normal.

 

Also, the only reason I used the word paranoid was because it was in your original post. Not meant to be in any way aggressive.

 

Hah - no offense taken. I think paranoid is an extremely accurate description! :wacko:

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Sigh. It is so hard deciding what are the right decisions. We all want our kids to be 100%. I can tell you as a mom who has two boys with pandas that 90% back to normal is just as distressing to me as 30% back to normal.

 

Also, the only reason I used the word paranoid was because it was in your original post. Not meant to be in any way aggressive.

 

Hah - no offense taken. I think paranoid is an extremely accurate description! :wacko:

 

 

If you only have a high IGM with no positive IGG- I would leave it alone due to the high cross-reactivity between strep and lyme. A lot of things can aggravate PANDAS and bring it down from 100% to 95%. Stress, Allergies, Etc. I'd let it go.

Edited by fr88
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If PANDAS and Lyme do truly cross react- in an active infection wouldn't you see a SEVERE exacerbation in response to it? It would be as if getting strep wouldn't it? All the antibodies produced against Lyme would cross react with the basal ganglia and cause really abrubt neurological problems.. Not a constant 95%. 95% is pretty good- from living with PANDAS I can tell you 100% isn't always possible. There are so many environmental triggers. Maybe that's just the best you can get for the moment. There's a lot that isn't known about the immune system. Have to wait for science sometimes.

Edited by fr88
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I think that is a fair question fr88 but I believe that yes it is still possible to have underlying infection being held at bay by the HD abx without having really eradicated it. Lyme is said to go in to cyst form once a patient has been on long term abx. A lyme doctor might add a second abx and cyst busting drug to complete the job.

If PANDAS and Lyme do truly cross react- in an active infection wouldn't you see a SEVERE exacerbation in response to it? It would be as if getting strep wouldn't it? All the antibodies produced against Lyme would cross react with the basal ganglia and cause really abrubt neurological problems.. Not a constant 95%. 95% is pretty good- from living with PANDAS I can tell you 100% isn't always possible. There are so many environmental triggers. Maybe that's just the best you can get for the moment. There's a lot that isn't known about the immune system. Have to wait for science sometimes.

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I hate to ask but what is meant by a "cross reaction" between (possible) lyme and PANDAS???

 

Does that mean that you might test positive for lyme when you really only have Ps?

 

In a post by "lyme MD" a doctor who keeps a blog in Maryland on his experience treating lyme, in regards to C6 lyme test he states: "On the other hand, a subset of patients who have been treated extensively with antibiotics "seroconvert" with regard to this parameter." It seems that he is suggesting (?) that some on antibiotics, for a lengthy time period, may have C 6 lyme tests that come back HIGH. (scroll down to Jan. 8th entry on the blog to read.) ??? (...this is way beyond me.)

 

http://lymemd.blogspot.com/2009_01_01_archive.html

 

Can anyone shed any light on that possibility? --

Would that explain why some of us are coming back positive?

 

The reason I ask is that our youngest has been in an episode w/ PANDAS level Cam and lyme testing was positive (C6 Elisa via lyme knowledgeable doctor.)

 

She is now on Doxycycline(200mg) and Augmentin(2000mg) and her volatility is through the roof--constant struggle. OCD, rages, destructive, hitting...failing everything in school.

Edited by T.Mom
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WD,

 

I see a lot of similarities between your son and my daughter. My DD had extremely severe PANDAS for many years before it was diagnosed, extremely high titers that went down after IVIg, did great with Augmentin XR, had a couple of long remissions, tics and violent rages 100% gone, grades from Cs and Ds to As and Bs, social skills have improved enormously, real friends for the first time, starting sleeping in her own bed and through the night for the first time in 12 years. The only thing still a problem was anxiety and scrupulosity. We did IGX test and DD was IgM positive and IgG negative (though CD3/CD57 was 24, which is extremely low). Myco P she was IgM positive and IgG negative. So far negative for other co-infections.

 

Like you, I did not want to mess with the Augmentin XR since it was working so well. Both doctors agreed. In addition to the Augmentin XR DD was put on Azith (4 days/week bid) and Tindamax (3 days/week bid). It has been 80+ days and DD is doing really well. Her joint pain/stiffness, fatigue, and brain fog is completely gone, and her anxiety and OCD fluctuates but I know that will take a while. She gets a little moody on the days she takes the Tindamax (cyst buster), but with bentonite she is tolerating it well. We continue to do HD IVIg and, in fact, there was no "recovery" or "turning back of the pages" for 10 weeks as she has had in the past. We saw immediate results from the last IVIg infusion. At the end of this month we are increasing dosage from 1.5 to 2 g/kg to see if it helps the anxiety and OCD. If not, we will stop the infusions until needed.

 

I am REALLY glad we pursued the Lyme/co-infection route and I know it is possible she will show up positive for another co-infection down the road. While 80-90% is great, I want to give my daughter a life that is 100%. For the first time in a long time I feel that is attainable.

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