Hoped to never have to be on this forum, but...

[AmySLP]

I have 2 daughters, 6 1/2 & 4, with significant strep history in my 6.5 yr old with confirmed PANDAS by Dr Latimer in April 2009 (after 7 months or so of strep that was tough to erradicate & Ebstein Barr virus in the midst of that too). We currently see Dr B. Got a call today that both my girls had "reactive bands" to lyme with increased IGG & IGM. I was so shocked (probably nearly in a panic attack), that I didn't ask a lot of questions initially, just got the info on how to get the Igenex test kit. Also, my little one is on zithromax already (positive for Myco P) so they extended her ABX. My 6.5 yr old was on Augmentin, but he changed her to Zith. for now as well with these results.

 

Having a hard time reading the threads on here for newcomers as I am so thrown by these results. Do I understand this right that this may not be Lyme, but actually infections/co-infections that make for a false positive. How could both my girls have this?? Not even sure the little one has PANDAS, although DR B does think so. Honestly she has a significant decrease in rages & sensory issues since Zith for the last 2-3 weeks. She did have an elevated Cd3 (38) a few months back, that we did not know the reason for it.

 

Thanks so much for any insight you can provide-

 

Amy

[LNN]

So I'm assuming your reactive bands are on a standard western blot, since you haven't done Igenex yet. But you don't say which bands, so it's really hard to comment.

 

I know being steered to a place you never expected has you floored. You just get your head wrapped around Pandas and then it's like having to start all over. I don't know how to accurately describe it, but I have to say I'm having an easier time with a lyme dx than I did with Pandas. First, everyone on the east coast understands you when you say "my kids have lyme" - They may have no idea what it's really like, but you don't sound crazy or like you're inventing some disease. Second, you don't live in as much fear. The "thing" has already happened - now you're just at war. A different feeling than always living in terror of another kid's sneeze or a germy doorknob or birthday party at jump zone. It's a different mindset somehow. Plus in lyme, your arsenal of weapons is larger.

 

As for having two kids with it - that's easy for me. We play and hike together. I've pulled ticks off of them at the same time. In CT, 90% of the ticks in a sweep in 2009 were infected. So it's not hard to understand how more than one family member can get sick.

 

For now, try to be calm. You still have more data to gather before you know what you're dealing with. And plenty time after that to adapt to the idea. For us, it put us on the path to really getting our kids well, so in that sense, I'm happy to be on the "right" path finally - or at least one that's giving us the best results so far. It may be a "blessing" in disguise.

[kmom]

Well said LLM. I agree w/ all that. Plus, I never got straight answers from PANDAS specialists when kids weren't progressing well enough. They seemed as perplexed as we were. It was nice to have good LLMDs to invetigate Lyme and co-inf's, treat and see good results compared to the when we only treated PANDAS and symptoms were much more unpredictable and life was a lot tougher. It takes time to wrap your brain around an additional or different Dx, but hopefully you continue to see improvement and it will all get easier.

[Suzan]

Both my pandas girls have lyme and it's apparent now that they got it from me because I've found out that I have lyme and probably had it for years and years.

 

I hope the Igenex testing helps to make it clear what you are dealing with. The lyme diagnosis really fit my dd9 so much more than pandas although pandas was certainly part of the puzzle. She has been hugely helped by her lyme treatment. dd8 continues to be a strange mixture of symptoms and we are working through them hoping to see a great improvement in her too.

 

One step at a time and you will be OK. HUGS!

 

Susan

[AmySLP]

Wondered about this congenital Lyme. CAlled my mom last night when I read that Lyme can be misdiagnosed as Fibromyalgia. When I was about 12 yrs old I had months of joint pain. After countless doctor visits to specialists, they eventually decided this is what I had-pediatric fibromyalgia, diagnosed at CHOP. Never was convinced by the diagnosis. My mom said she thinks they tested for Lyme, but it seems as though the testing has developed since then (about 25 yrs ago) & again it is a clinical dx. Curious to read more about this, as I am wondering if I could have lyme.

 

The thing is, my family seems to have a history of PANDAS. My Dad, myself, my sister, all seems to have symptoms as kids that are similiar to my girls, with residual OCD left behind. Following my "fibromyalgia" dx, my tonsils & strep became a problem. Eventually leading to removal following several abcesses. This did not end my boughts with strep-learned too from Dr. B yesterday that my ASO is 709.

 

Thanks for your support and advice,

 

Amy

[kmom]

You are not alone. The day I realized PANDAS could be a possible cause to my DD's symptoms, I cried b/c I could identify with it. I had Scarlet Fever at 4 and a lot strep issues throughout childhood along w/ OCD, unexplained stomach pains, separation axiety, etc. Nothing like the severe symptoms my kids got but still, I could identify with it. So PANDAS seemed like the obvious Dx when my DD got sick. CHOP dx'd her (although didn't manage recovery well so we moved on to Dr. T and then Dr. B.) A month later, my DS got sick. It seemed very strange then to me that both kids had PANDAS. We did Quest WB's and they were negative. I wasn't convinced Lyme wasn't playing a role in this mess. But I had Dr's telling me no Lyme, just PANDAS. But b/f their 1st and only IVIg Dr. B did Igenex testing. The results were deemed neg. by Dr. B and CDC standards but this was before Dr. J really helped Dr. B understand how to interpret Igenex results. So in the meantime we sought out LLMDs to help us figure it out b/c their Igenex results didn't seemed completely neg. to me. It wasn't till 6 months into the kids' illness that I got a flu shot. I went down hill quickly and Lyme symptoms came on like a ton of bricks. After really digging into my medical history, I'd be willing to bet I had Lyme/PANDAS for a long time and passed it onto my children. I can tell you that it's shocking to hear the dx but quite liberating to have more answers and a solid treatment plan.

[momcap]

Amy,

 

We also started with PANDAS. I'm in a similar situation, wondering about congenital lyme. I also had terrible joint pains and depression around age 12. My parents took me to every kind of doctor they could find, but nothing was obviously wrong. We didn't know anything about lyme back then, except that you got a bullseye rash from a tick bite. I can't recall a bite, or a rash. But thinking back I realize I had many symptoms of lyme, and they were all dismissed as medical annoyances, but certainly nothing treatable. Visual disturbances were dismissed as migraines without pain (???), numb fingers and toes were called Raynaud's syndrome, sore knees were Osgood Schlatters, after breaking my foot I got RSD - my immune system basically attacked the broken foot, swelling for months on end, turning purple, red, rashes, etc. It took me over 6 months to heal from a simple break. After years of doctors appointments we just quit trying to figure it out. My Mom assumed I had fibro and eventually I got better (after a year of tetracycline for acne). I've had bouts with "it" since, but nothing that lasts.

 

So now I have DS7 with PANDAS. After treating aggressively with antibiotics for PANDAS for 2 months he ended up with so many more physical symptoms of lyme. My 5 year old (non-PANDAS strep carrier), has chronic headaches and sore feet every morning. My 4 year old catches every bug that goes around. He's constantly on abx for one infection or another (ears, eyes, throat, pneumonia). He has the creepy dilated pupils (cat eyes) like PANDAS DS, and the OCD is starting. I recently had myself tested for lyme at IGeneX and it came back positive. So I'm thinking all 3 of my kids have it. I'm assuming I passed it on to them.

 

I don't have any advice. I'm just starting down this lyme-trail myself, and have come up against some pretty discouraging road blocks. I just wanted you to know that you're not the only one, and our stories are quite similar. We have family history of strep too (scarlet fever). Whatever it is, we're all in it together, and the lyme people on here have been tremendously supportive with ideas, information and encouragement! Best of luck,