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Pandas docs ruling out lyme and other infections now


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I am so THANKFUL that the PANDAS presenters at the OCF conference this year were very matter of fact about ruling out all sorts of infections and causes of PANDAS - not just strep - they said the words lyme, lyme co-infections, and mycoplasma, etc... They are so forward thinking and really open to learning as they go. This will hopefully save a lot of OCD/PANDAS/PITANDS patients time in getting treated properly. And, the more this gets around, the faster the healing begins! I am so grateful for their willingness to learn and adjust accordingly. YEAH!!

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I am so THANKFUL that the PANDAS presenters at the OCF conference this year were very matter of fact about ruling out all sorts of infections and causes of PANDAS - not just strep - they said the words lyme, lyme co-infections, and mycoplasma, etc... They are so forward thinking and really open to learning as they go. This will hopefully save a lot of OCD/PANDAS/PITANDS patients time in getting treated properly. And, the more this gets around, the faster the healing begins! I am so grateful for their willingness to learn and adjust accordingly. YEAH!!

I'm very happy to hear that they are considering and testing for these infections as a cause for PITAND/PANDAS but I do want to point out that it is still beneficial to see a good LLMD if you suspect Lyme at all. Lab results can be negative for various reaasons but a good LLMD is still willing to try treating (and see how the patient responds) if they feel that the symptoms and possible exposure look like Lyme or co-infections.

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glad to hear this too. I was so focused on PANDAS for so long and didn't really get any better until we discovered and treated for lyme. Even went through 4 hd ivig. I think the correlation between PANDAS and Lyme will be shocking when research gets moving.

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  • 2 weeks later...

I am so THANKFUL that the PANDAS presenters at the OCF conference this year were very matter of fact about ruling out all sorts of infections and causes of PANDAS - not just strep - they said the words lyme, lyme co-infections, and mycoplasma, etc... They are so forward thinking and really open to learning as they go. This will hopefully save a lot of OCD/PANDAS/PITANDS patients time in getting treated properly. And, the more this gets around, the faster the healing begins! I am so grateful for their willingness to learn and adjust accordingly. YEAH!!

I'm very happy to hear that they are considering and testing for these infections as a cause for PITAND/PANDAS but I do want to point out that it is still beneficial to see a good LLMD if you suspect Lyme at all. Lab results can be negative for various reaasons but a good LLMD is still willing to try treating (and see how the patient responds) if they feel that the symptoms and possible exposure look like Lyme or co-infections.

ABSOLUTELY!! Hope I didn;t make anyone think otherwise!! It takes a team!!

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I'm so glad the presenters at this conference were encouraging Lyme/coinfections testing - this is a huge step forward! But I just wanted to point out that this is far from accepted practice across the board for PANDAS docs. And the ones who are doing it are sometimes using CDC testing, not looking at coinfections, missing diagnoses, and often don't know all the ins and outs of treating tick-borne illness. So I want to encourage everyone who's still working with a PANDAS doctor to educate them on all these aspects. And if you find yourself with the time and energy, reach out to doctors you've worked with in the past. I think best-case scenario is for a PANDAS doc to refer patients to a Lyme doctor to rule it in or out, as opposed to PANDAS specialists trying to test, diagnose and treat outside of their own area of expertise. Many of us have relationships with both PANDAS and Lyme docs, so we have the power to help forge these partnerships.

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Sometimes, on good days, I promise myself I'll write all the docs and tell them what we learned. But then something else gets uncovered and I realize we're not yet at the bottom of things. So I keep waiting to get to the ending before I write the rest. Maybe we'll get there before they all retire!

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