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Another parent update


LNN

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Just curious if you have considered doing IVIG as well, occasionally and/or after the Lyme tx to help the immune system get back on track?

 

We aren't planning on any additional IVIGs, not based on medical reasons, but for personal and financial reasons. My son had a horrible experience on Day 2 of IVIG and the summer was so hard on everyone, that to ask them to go thru it again would be asking a lot and I'd need a really compelling reason - a slam dunk assurance it would move us significantly ahead, not just because it might help a little. Plus even with insurance covering a large chunk of IVIG, we still paid a significant portion out of pocket and one of the personal challenges I alluded to in my last post was that I was just laid off. So any treatments that come with big price tags aren't options for the foreseeable future. (Now if anyone knows a way I can take all this "wisdom" that Pandas and Lyme has bestowed on me and turn it into a paycheck, that's a different story :D )

 

Nancy - yes, the bootstraps are way over the ears by now, but since we woke up to a Nor'easter with snow on the ground this morning, the ears can use some warmth anyway. The depression I went thru in September was unlike anything I'd felt since I was a teenage and had my heart broken for the first time. It really knocked the wind out of me. So it's a really good feeling to not only be getting my son back, but to be getting myself back too.

 

Thanks to everyone for the warm welcome back. I shudder to think of the parents who haven't found this forum and are out there trying to fight alone.

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LLM,

 

When you presented at the OCD conference this summer and then the docs had their PANDAS meeting after, did you get a feeling for whether these docs are pursuing lyme and co-infections in a systematic way? Is the white paper going to be stale before it is even made public???

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LLM,

 

When you presented at the OCD conference this summer and then the docs had their PANDAS meeting after, did you get a feeling for whether these docs are pursuing lyme and co-infections in a systematic way? Is the white paper going to be stale before it is even made public???

 

Unfortunately, I wasn't privy to that meeting and don't know any more than what's been posted on the forum. I know from her own published papers that Dr Cunningham knows lyme can elevate CamK and trigger an autoimmune response (Evidence of Borrelia Autoimmunity-Induced Component of Lyme Carditis and Arthritis 2005). I know from my own discussions with our Pandas docs about my son that they know lyme can look a lot like Pandas and they supported our looking into it when my son became a "non-responder" to IVIG. But looking at it systemically? Not that I'm aware of. I think getting Pandas recognized has been hard enough. I'd doubt anyone would want to muddy the waters further until "pure" Pandas research was much more firmly embraced. But that's just my opinion. No inside scoop.

 

As for the white paper, I haven't heard anything. Would make a nice Christmas present tho, wouldn't it?

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Seeing your initials there was like hearing the voice of a good friend you haven't seen in a long time.

You've given so much. Remember there are lots of people here ready be there for you as well.

Welcome back.

Kara

 

I stopped coming to the forum because it's hard to offer support when you're not in such great shape yourself

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I understand they will be screening/testing for LD and Mycoplasma for the upcoming PANDAS IVIG trail via Yale/NIMH. How they will 'specifically' be screening/testing is not clear.

 

-Wendy

 

It will be interesting if current presence of other infections is deemed a "rule out" in this circumstance.

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I have missed you, Laura!!! I imagine breaks from the forum are nice though. I don't think I could take one, haha.

 

I am very happy to hear about the progress! I don't know if you were on your hiatus when I had my "Yay, a Lyme diagnosis!!! Oh wait... This sucks even more than P.A.N.D.A.S." moment, hah. I'm going to search through my AOL to find your email address & send something your way soon. You've been in my thoughts & prayers! :) <3

 

P.S. ~ With Yale's medieval stance on Lyme, how do they view P.A.N.D.A.S.?

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