Question PANS/Lyme

[dut]

Hi - Sorry to ask the kind of question with an answer possibly as long as a piece of string but for those of you who started out on the PANDAS/PANS route, with hindsight or at the time, did you notice a differing pattern of symptoms to what is thought of as classic PANS? Was it a lack of response to PANS treatments that made you go further?

 

My dd has had western blot doen but nothing more for BB. She did get a panel of co-infections done under Dr B that all came back negative but that was a couple of years ago and his breadth of testing may have changed (I'm aware there are more than 1 strain eg of certain types). Ds has had nothing tested in this area.

 

It's just that we're in a good place for both kids at the moment and I'm wondering if I should make use of the lull and the extra energy I've got to further pursue underlying causes?

 

Thanks...

[Suzan]

My dd10 had pain. Legs, fingers, toes, growing pain, pain that got worse after IVIG, periods of time where she could not walk but nothing was wrong as far as the doctor's could tell.

 

Otherwise, she seemed pretty cut and dry PANDAS with confirmed strep connection but starting to react to all virus exposure. Her pain is usually gone now completely with occasional flares.

 

dd9 I tested after learning more about lyme for dd10. She had the strep connection but was not getting better, not getting worse. She seemed more of a mystery all around. Still does a little

 

Susan

[NancyD]

I "thought" my DD was clear cut PANS -- Augmentin XR and IVIg put her into remission with all of her symptoms (EXCEPT for anxiety/OCD) for up to a year at a time. But the anxiety/OCD continued to get worse. And then there some new symptoms that did not quite fit PANS that I was overlooking. Within months after she was diagnosed with Lyme and we started treatment all of the new symptoms disappeared, but not the anxiety/OCD. Then we discovered she had Bartonella (not from the co-infection panel though as that came out negative).Bartonella treatment helped a bit but her anxiety/OCD was still a big problem so we tested MTHFR gene, zinc levels, and KPU. She did have a deviant MTHFR gene and we put her on methylfolate. Helped a bit. Then zinc levels were low and even before KPU test came back we added in zinc and that seems to be really helping her anxiety/OCD. I'm still waiting for the KPU test results but I am guessing she has KPU. Last month she did have elevated strep titers, though this time she did not go into an exacerbation. So we are making great progress!

 

If it were me, I would keep testing while things are going well so you have a clear plan of what to do next, particularly if/when things go downhill. I always like to have a backup plan in my pocket.

[LNN]

DS looked entirely Pandas - except for two additional things. 1. He never stayed in remission longer than 2 months and 2. he also had asymmetrical swollen gland (only left side) not associated with sore throat/strep and he had body/muscle pains - like you feel when you have the flu, except he was otherwise healthy. We kept blaming it on "exposure" since he wasn't getting strep after the T&A.

 

Behavior-wise - entirely Pandas description Plus brain fog beyond what seemed common with other Pandas kids.

 

So he was "classic Pandas" plus more. It was only after exhausting every Pandas treatment and still not getting sustainable remissions that we knew we had to dig deeper.

 

If I were in your situation and had no lyme flags, I'd pursue potential methylation landmines more than lyme. Even after we pursued lyme, we still had major roadblocks. Once we found the KPU/zinc issue (DS has normal MTHFR), our rate of progress went from the Little Engine That Could to the Bullet Train. My niece may have a brewing Pandas kid and my advice to her will be to look for underlying issues first, because until they're addressed, all the abx and IVIG in the world won't get you there - or at least not nearly as easily as it would if you didn't have any methyl blocks. (IMHO).

[dut]

thanks folks.. that gives me some things to think about.

 

We see our great PANS ped tomorrow, so I'll raise further testing. Our insurance changes next year too so I mighht milk our currently great cow for all it's worth.. I've wondered about KPU in the past...

 

thanks again