texascatholic

Thanks for yor response! I'll keep y'all posted.

That's great!

Sorry people, I accidentally double-posted!

Hi All... Sorry I've been rather vacant from the forums lately, but I'm still in the ugh stage of pregnancy. 2 quick questions... 1. Dr. Rao recommended we use Primal Defense as a probiotic. Does anyone else use this one? 2. A horrible stomach flu just went through the house. Although PANDAS DD9 did not get it, her tics and anger/frustration flew through the roof. Has anyone experienced major exacerbations from something like exposure to the stomach flu? We get IVIG #3 this Wed. with Dr. Infante. It has produced improvements (when we are not exposed to illnesses, that is!) God bless, Holly

Hi All... Sorry I've been rather vacant from the forums lately, but I'm still in the ugh stage of pregnancy. 2 quick questions... 1. Dr. Rao recommended we use Primal Defense as a probiotic. Does anyone else use this one? 2. A horrible stomach flu just went through the house. Although PANDAS DD9 did not get it, her tics and anger/frustration flew through the roof. Has anyone experienced major exacerbations from something like exposure to the stomach flu? We get IVIG #3 this Wed. with Dr. Infante. It has produced improvements (when we are not exposed to illnesses, that is!) God bless, Holly

How much skullcap do you use?

Thank you! Tic is gone this morning. We did test "negative" for lymes via Igenex with a few suspicious bands coming up positive. Still need to get with an LLMD someday. but there are none locally. Not easy to travel right now due to me expecting our sixth child! Grace, we are technically PITAND and Dr. Infante is treating us because of our Cunningham test scores + clinical history. Even though she lacks official strep antibodies when tested, she seems to react when exposed. Confusing! God bless, Holly

Yes, we've seen improvements! However, tonight is not good. She was exposed to strep and is having some weird tics. Oh well! But overall, progress.

My girls went to their homeschool co-op yesterday and one of the moms informs me that a child who was there yesterday was diagnosed today with strep. This evening my child starts up with barking tics (we've never had this before)along with involuntary jerks. Wondering if this is related? We had our second IVIG last week, so I am also wondering if we are in the recovery phase still and that's what this is. Very unsettling, though. Has anyone else had an experience like this? She's terrified about it. Thanks and God bless, Holly

Yes, we've had 2 IVIGs so far through Dr. Infante(an immunologist at Christus Santa Rosa downtown). However, he usually requires positive Cunningham results and or a prior PANDAS diagnosis to treat. We went to Dr. Rao in Plano, TX to get the diagnosis first. Hope this helps! Holly

We homeschool and it works out best for us. I can't imagine sending my DD9 with PANDAS to school. However, we have always homeschooled from the beginning, so it seems normal to our children. She may like it and do well. At least you can tailor the educational program to meet her needs. PM me if you want more info. God bless, Holly

Congrats! And thanks for the message you sent me about LLMDS, Cobbiemommy!

Thanks so much! I will give your LLMD a call soon. God bless, Holly

I've had the same fears about LLMDs. Good to hear this is not the norm. Thanks for everyone's input on these issues!

Hi Cassi... I'll keep you posted on what I find out. It's my understanding that the Texas Medical Board doesnt' favor LLMDs.

Thank you, thank you, thank you!

Thanks, Suzan.... I looked at the ILADS website. Since DH is a physician, I am going to ask him to join (as a non-voting member). Hopefully this way he can speak to some of the LLMDs and get advice? I really appreciate all that everyone has shared with me today. Never thought we'd be potentially dealing with Lymes. Also, when the Igenex test said "negative", I really thought it was negative until asking all of you. Thanks again...

Hi There... I was wondering if anyone knows of any LLMD's who will do a phone consult to discuss whether or not we need to travel to see them based on our Igenex results? I don't want to travel if we don't need to.... I posted DD9's results in the PANDAS forum and in the Lymes forum today. I was also curious...is band 41 specific for Lymes? She was positive for this on both the Igg and Igm western blot tests. God bless you all!

Thanks again, SF MOM.... Does anyone know of any good LLMDs close to Texas?

Thanks for the helpful responses! Wish it wasn't so borderline. Would our next step be a lymes provocation test? Thanks! Holly

Complicating the matter is the fact that there are no LLMD's around here (Texas). Western Blot IgG: 18 - 22 - ** 23-25 - 28 - 30 - ** 31 IND ** 34 - ** 39 IND ** 41 ++ 45 - 58 + 66 - 73 - **83-93 - Lymes Titre - Negative IgM Western Blot All were negative except: ** 39 - IND ** 41 - + B Microti - Negative Babesia - Negative HME Panel - Negative B henselae - Negative Looks like no co-infections. Thanks in advance for the help.

Complicating the matter is the fact that there are no LLMD's around here (Texas). Western Blot IgG: 18 - 22 - ** 23-25 - 28 - 30 - ** 31 IND ** 34 - ** 39 IND ** 41 ++ 45 - 58 + 66 - 73 - **83-93 - Lymes Titre - Negative IgM Western Blot All were negative except: ** 39 - IND ** 41 - + B Microti - Negative Babesia - Negative HME Panel - Negative B henselae - Negative Looks like no co-infections. Thanks in advance for the help.

I will, Fixit! Thanks for reminding me. :-) I realize I was rambling in my initial post. It was a crazy day! Bless you!

Well, now she has a virus of some kind, so I am thinking that this is what's causing the flare up. Hope it passes soon!

Forgot to mention that we are also in the midst of upper respiratory illnesses in the family. Thanks!