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Lyme Test Results for PANDAS Kids


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WOW!!! WOrried Dad & NancyD!! You guys' situations give me hope as I see our boy on the couch post IVIG#3 one day. I had missed how much of a turnaround your children had taken. This is awesome and an encouragement!! We are on the PANDAS/Lyme & babesia/bartonella path. You give me hope. Dawn

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Had our 1st appointment with the new LLMD yesterday. Went great! Found out while chatting with the receptionist that she and most of this doc's office staff used to work for our original LLMD (who passed away in 2008). Just seemed like good karma! And I noticed a framed certificate on the wall in appreciation for this doc presenting as a scientific session speaker at the October 2009 ILADS conference. Very reassuring. He seemed like a nice, soft-spoken, down-to-earth guy. Our ds actually liked him - one of only 2 docs he's clicked with since this whole PANDAS adventure began!!! (The other is Dr. K. For those who haven't met Dr. K, he has a unique, wacky sense of humor that most kids seem to love. For those who have met Dr. K: you know what I mean. ;-)

 

So this particular LLMD's take on our ds was this. First, he thought the IGeneX results were borderline: certainly said it's possible that our ds had Lyme and/or ehrlichiosis in addition to PANDAS but didn't question the PANDAS diagnosis given the evidence. Said he didn't even see the point in further "provocation testing" for Lyme since our ds has been on treatment-dose abx for so long. Said that - even though it's not widely prescribed for Lyme - augmentin is a potent abx that is effective for BB and other pathogens. He did not see a need to switch or introduce additional abx at this time. Have to admit, this was a huge relief.

 

As far as testing accuracy goes: he said he hasn't heard of GAS cross-reacting with Lyme, but that doesn't mean it can't happen. He explained that these bacteria are constantly evolving, mutating, and even mixing with each other and swapping DNA. Said that the GAS of 20-30 years ago is not the same as the GAS infecting people today. Said that definitive testing for specific bacterial agents is problematic because, over time, they learn to mimic each other and present some of the same antigens. (Mentioned that Lyme band 41 is notoriously non-specific in this way.)

 

So - for now - he wants to stay the course with the augmentin XR. Did draw a bunch of blood to test for liver & kidney function, vitamin D levels, etc. Also added some new supplements for general immune health and fighting infection (garlic, cat's claw) as well as one (ordered) for neurotransmitter function (to help with the focus issues that make homework challenging).

 

Want to thank the "Lyme-ies" on here for making me paranoid enough to pursue this path. My ds and I both got a really good vibe from this LLMD, and he's going to be a valuable medical resource going forward. So nice to have a local doc who truly "gets it"!

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I am so happy for your guys! It's nice to be reassured of what you're currently doing and also nice to know, in the back of your mind, that if you should ever reach a "what the?" moment, you already have someone (close by!) who's there to help. No worrying about "convincing" someone of your sanity. Thanks for the update. Wishing you guys continued good health!

Laura

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Good news Worried Dad!

 

We are in the same boat- and not asking medical advice (we have an llmd appt soon)- but curious on what he said about the test results.

 

Both my kids also are positive IGM Igenex western blot, completely negative IGG. We had an ID doc ( treats lyme, recommended by Dr Fallon) tell us they may have had exposure, but due to the nature of our pandas treatment (daily full strength zith indefinately), he didn't think we needed to do anything further now. We are seeing another llmd for second opinion.

 

I am wondering what he said about positive IGM

 

thanks

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Wish I could explain it better and not misrepresent things. Here's my recollection / interpretation of what he said.

 

Since the IFA was indeterminate, IgM WB was positive but only 3 bands, IgM Ehrlichia was borderline, and everything else was negative, he didn't consider this a compelling case for active Lyme. After such a long time on the high-dose XR, he would have expected a stronger response and more positives (like IgG). Said if ds had not been on the XR for so long at treatment dose, he would have recommended provocation testing with a high-dose abx to increase the odds of detecting "hidden" Lyme.

 

And if there is lingering Lyme, he felt that the XR was sufficient to "kill 2 birds with 1 stone" in terms of the Lyme and the GAS.

 

Hope I didn't butcher this too badly. Lyme gurus, if this is poorly stated, it's not the doc's fault: it's mine!

 

 

Good news Worried Dad!

 

We are in the same boat- and not asking medical advice (we have an llmd appt soon)- but curious on what he said about the test results.

 

Both my kids also are positive IGM Igenex western blot, completely negative IGG. We had an ID doc ( treats lyme, recommended by Dr Fallon) tell us they may have had exposure, but due to the nature of our pandas treatment (daily full strength zith indefinately), he didn't think we needed to do anything further now. We are seeing another llmd for second opinion.

 

I am wondering what he said about positive IGM

 

thanks

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Not a lyme guru - so can't comment on the results. The one thing that I think is different between WD's son and DCMom's daughter are that WD's son is doing well and DCMom, your girls are still fighting something, whatever that something is. So I'd only suggest that the results be considered in context with symptoms. I guess it all comes down to "if what you're doing is working, stick with it. If not, keep fighting for answers."

 

DCMom, I hope you have as positive appt. as WD did, regardless of diagnosis. The key is to get your daughters back to health. Wishing you nothing but the best.

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Not a lyme guru - so can't comment on the results. The one thing that I think is different between WD's son and DCMom's daughter are that WD's son is doing well and DCMom, your girls are still fighting something, whatever that something is. So I'd only suggest that the results be considered in context with symptoms. I guess it all comes down to "if what you're doing is working, stick with it. If not, keep fighting for answers."

 

DCMom, I hope you have as positive appt. as WD did, regardless of diagnosis. The key is to get your daughters back to health. Wishing you nothing but the best.

 

Laura- I couldn't agree with you more.

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WD,

 

So glad your appointment went well, and you've found another doc for your team. One great thing about most LLMD's, regardless of the infection causing problems, is that they are on your side from the moment you walk through the door. No need to plead and convince. It's a nice feeling.

 

I'm not sure what "local" is to you, but if you feel comfortable, could you please pm me the contact info for the llmd -- we have a relative looking and it sounds like you like this doctor enough to recommend him.

 

Best of luck going forward.

Mary

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You know, he never mentioned that. I imagine it's like LLM said: he's probably evaluating our ds's clinical picture and basing his current approach off the fact that our son's doing pretty well. I'm not sure what all he included in the bloodwork, so maybe he's waiting on that to make decisions as well?

 

 

Hello Worried Dad:

 

I am so happy that you have found a doctor to help you!!! What a relief!

 

I am curious as to whether he discussed the possibility of incorporating a cyst bursting drug to your son's current treatment?

 

Great update!

 

Elizabeth

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Great update and so glad you found someone to see you through to the end!!!!!!!!!! LLMDs do get 'it' and they are willing to help. I look forward to hearing further updates and how he assists in helping your son further.

 

Our LLMD is definitely seeing us through to the end. I feel like we have a great case manager that will help us make some very big decision in the future 'LIKE' when/how we rotate of antibiotics completely. Still a scary, scary, scary thought but its the goal. We are officially one year post our last hdIVIG today!!!!

 

-Wendy

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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!!!

 

Worried Dad, those results seem pretty positive to me and the fact that your son is positive for erlichia only makes it even more believable. He has obviously been exposed to tickborne illnesses. I have read your postings over the past year with interest b/c I always think they sound like lyme disease. I believe you do not need a positive igenex test to start treating for lyme b/c the clinical picture is enough. I don't remember all your comments but the leg pain is something I recall. Certain types of leg pain can be associated with coinfections too. My son was also on augmentin xr for lyme towards the end and it works well but it will not get rid of lyme on its own. You need a cyst buster and possibly a third antibiotic to eventually get rid of it and more if there are coinfections of babesia or bartonella. I think this is great news b/c you will finally be able to complete his treatment and get him off antibiotics some day. My son was very sick and treated for over 2 years but is off antibiotics today. I would find a highly recommended llmd so that you don't waste any time or money with someone who is not excellent. If your son herxes or improves significantly on a lyme protocol then you will know you are on the right path. Good luck! We are rooting for you.

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