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My 'pandas' daughter has Lyme Disease


SSS
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I remember when I first came to this board, about 6 months ago, and I would hear of Lyme, and I'd think:

There is no freakin' way. My dd6 has been sheltered, we've never been camping, she's never been hiking, we have never owned a pet.

It sounded so out there to me.

 

2 different tests from 2 different labs with positive bands, and a lengthy LLMD visit yesterday,

YES, my daughter has Lyme disease.

I have only 1 memory, when she was an infant, of a tiny, poppy seed 'bug' on her arm, I thought it was a new mole, I rubbed it, wouldn't come off, rubbed harder, came off with a blood trail.

(My DH only confirmed this memory to me THIS morning, 'oh, I do remember that, you told me the day it happened'

Okay, thanks buddy, I thought maybe I was insane remembering this!)

 

The real possibility is that I have it too, I had my blood drawn for a full on test yesterday. It is said that if the Mother has it, there is a 60% chance of passing it to a baby.

Sure, I have symptoms. I thought it was peri-menopause, complete fatigue from being a SAHM to 3 kids, one with constant issues, and too much pot smoking in my youth (bad memory.) We will see.

 

I post this, because as we sat in the LLMD's office yesterday, and watched the patients go to and fro,

they looked very ill. Seeing that, sobered us up real quick. It is quite scary.

 

Please, if you have a pandas child, rule out Lyme. Even if you think: No freakin' way.

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Wow S&S. I am still one of the "no freakin' way" people....still thinking that if i walk in the door to an LLMD, we're walking out with a LYme diagnosis. I am still not totally sold on "just having positive bands" being a positive lyme test. Were both the labs you tested at giving you a "positive" result on the tests, or were they marked "negative" with some positive bands. I am curious the labs you used, and also the doctor. I may end up eating these words like you are doing, and just am looking for more info. Thanks! I do want to rule out any other infections before trying IVIG, and Lyme is that one that just nags at me.

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I'm not sure I'm the best one to answer these questions, but we did a labcorp. Western Blot, and the full panel from Igenex (minues co-infections, we pull that in a few weeks) and both tests had positives to bacteria that are ONLY Lyme bacteria.

Plus, when a band says IND, it does not mean a negative, it means they do see something, but not enough of a dark line to call it positive.

One LLMD called a IND a ballpoint pen line, a positive is a black marker line.

 

I did not want to walk into an LLMD office either, without testing, or some sort of indication. So I walked in with our 2 different labs tests, that I was able to pull and receive before hand, plus the stack of all the other testing on dd6's immune system.

But I already *knew* by reading the tests myself, looking online for the meaning of all the bands, that it had to be Lyme. But we needed an LLMD to confirm it.

In fact, this LLMD said: If you had a test that showed you had been exposed to Lyme, but you had no symptoms, I wouldn't treat it.

So, no, not a Dr. out to make the bucks.

I've had some of those in the past, I know what they look like.

Edited by S & S
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S- I hope the Lyme dx and treatment brings your family health and wellness, truly.

 

I think it is also important to put out there not every child with PANDAS has Lyme related illness as well. In the end, parents have to trust their instincts because they can receive a lot of conflicting interpretations of Lyme as well as PANDAS. Even though I did not have a strong suspicion of lyme/Bartonella (3 neg WB, 2 from Igenex), our doc wanted to do a trial of Bactrim in response to an "unexplained" uptick in behaviors (which we later determined was asymptomatic strep.) We tried the Bactrim for 4 weeks with NO changes in behavior, no rashes, nothing but some headaches and nausea. Turns out the Bactrim in combo with Zithromax put my dd11's liver into a tail spin with liver enzymes in the 300's and 700's when they should be, and previously were, in the 20's. So giving Lyme treatment a try is not without risk, but there are many kids on these exact same abx whose livers are just fine.....maybe it's bcs they really need them and my dd didn't, who knows!

 

I've always thought I was one of those parents who was not going to let labels get in the way of me getting my child the help she needs. I didn't let "bipolar" scare me, though it was wrong; I didn't let lyme/bartonella scare me though that was wrong too. None of us can afford to presume anything, but you do have to trust your instincts and a certain degree of skepticism is healthy.

 

It sounds like you are trusting your instincts. I just wanted to offer a balance to the i didn't want to hear it either part of your post and restate that Lyme and PANDAS are not synonymous; maybe that wasn't what you meant. But for newer folks, that needs to be made clear.

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Jag10, that is not what I meant at all. I know there is truly pandas.

 

I guess it was more of a PSA. I just in a million hundred years would never have thought this, come to this, but our pandas symptoms are very similar to lyme too. Even so, I couldn't make the leap.

It's just a FYI.

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I hear ya! And I genuinely hope this helps your baby girl turn a corner.

 

Hopefully, someday soon, these scientists and docs are going to figure out what makes one kid suceptible to strep vs Lyme vs Mercury and some poor kiddos get the combo meal. It all stinks! But GOd gave us our children for a reason, he has faith in us and wants good things for our children's lives.

 

Your dd is too young, but for my dd11 and dd8, we just bought Soul Surfer. AHHHHH! What a terrific movie and story!!! Just can really help the "why me" discussion and how to persevere and embrace the path that God has intended for each of us. Make sure you watch the special feature documentary Heart of a Soul Surfer , It is absolutely phenomenal!!!!!! Highly recommend this flick!!!

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Thanks for posting this S&S. It's important for those new to PANDAS/this forum to understand that many PANDAS kids have tested positive and been diagnosed with Lyme and coinfections. As JAG10 has stated, there are PANDAS kids who have tested negative for Lyme as well. But its crucial to rule it out. The best way to do that is by going to a doctor who treats Lyme on a regular basis, because although there are lab tests, they aren't 100% reliable and like PANDAS, its a clinical diagnosis aided by testing.

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is the whole theory that Lyme is what allows PANDAS to take place or Lyme is just really PANDAS?

I don't know that anyone's proposing any theory. I think parents coming to the ACN forums can have kids who have a set of symptoms that are infection triggered. Those symptoms overlap quite a bit, particularly if the lyme comes with bartonella or is neuro-lyme. I personally think a child could have a tick-borne illness, Pandas, both or neither (in that there could be other infections or issues that need to be explored beyond bacterias).

 

I don't think that getting Pandas means you can't also be bitten by an infected tick. I don't think having Pandas means you can't also be struggling with mold in your basement. You may have some outlier symptoms if you're dealing with more than one thing. They may have an amplified effect if they end up in the same body. But I don't know that they're automatically intertwined. That's why I like the term PANS. It recognizes that many infections can trigger neuropsych symptoms. It advocates for treatment of those infections. It, hopefully, starts to offer a variety of treatment options depending on the current trigger. I don't see any of it as either/or or chicken/egg. I see it as the recognition that mental illness is like any other physical illness in any other organ - something with a medical cause that deserves medical treatment, and will hopefully move us all beyond band-aids of symptom management and closer toward genuine health.

 

I don't mean to speak for S&S - but I read her post as only an FYI that although an abnormal response to strep can be part of your history, if good health continues to elude your child, it's important to keep searching for that active trigger, even when, like her (and like me for many many months), you can't see how in the world something other than strep could be at play.

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is the whole theory that Lyme is what allows PANDAS to take place or Lyme is just really PANDAS?

I don't know that anyone's proposing any theory. I think parents coming to the ACN forums can have kids who have a set of symptoms that are infection triggered. Those symptoms overlap quite a bit, particularly if the lyme comes with bartonella or is neuro-lyme. I personally think a child could have a tick-borne illness, Pandas, both or neither (in that there could be other infections or issues that need to be explored beyond bacterias).

 

I don't think that getting Pandas means you can't also be bitten by an infected tick. I don't think having Pandas means you can't also be struggling with mold in your basement. You may have some outlier symptoms if you're dealing with more than one thing. They may have an amplified effect if they end up in the same body. But I don't know that they're automatically intertwined. That's why I like the term PANS. It recognizes that many infections can trigger neuropsych symptoms. It advocates for treatment of those infections. It, hopefully, starts to offer a variety of treatment options depending on the current trigger. I don't see any of it as either/or or chicken/egg. I see it as the recognition that mental illness is like any other physical illness in any other organ - something with a medical cause that deserves medical treatment, and will hopefully move us all beyond band-aids of symptom management and closer toward genuine health.

 

I don't mean to speak for S&S - but I read her post as only an FYI that although an abnormal response to strep can be part of your history, if good health continues to elude your child, it's important to keep searching for that active trigger, even when, like her (and like me for many many months), you can't see how in the world something other than strep could be at play.

That was very well said! I especially like the part I bolded!

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I remember when I first came to this board, about 6 months ago, and I would hear of Lyme, and I'd think:

There is no freakin' way. My dd6 has been sheltered, we've never been camping, she's never been hiking, we have never owned a pet.

It sounded so out there to me.

 

2 different tests from 2 different labs with positive bands, and a lengthy LLMD visit yesterday,

YES, my daughter has Lyme disease.

I have only 1 memory, when she was an infant, of a tiny, poppy seed 'bug' on her arm, I thought it was a new mole, I rubbed it, wouldn't come off, rubbed harder, came off with a blood trail.

(My DH only confirmed this memory to me THIS morning, 'oh, I do remember that, you told me the day it happened'

Okay, thanks buddy, I thought maybe I was insane remembering this!)

 

The real possibility is that I have it too, I had my blood drawn for a full on test yesterday. It is said that if the Mother has it, there is a 60% chance of passing it to a baby.

Sure, I have symptoms. I thought it was peri-menopause, complete fatigue from being a SAHM to 3 kids, one with constant issues, and too much pot smoking in my youth (bad memory.) We will see.

 

 

I post this, because as we sat in the LLMD's office yesterday, and watched the patients go to and fro,

they looked very ill. Seeing that, sobered us up real quick. It is quite scary.

 

Please, if you have a pandas child, rule out Lyme. Even if you think: No freakin' way.

 

 

I remember being where you are just a few months ago. I couldn't believe it could be lyme, I even still question it, but all I know is my dd is soooooooo much better. 100% with mild cyclic flares. We did 4 hd ivig and didn't get the results we are now getting. I have found that my LLMD is the ONLY dr that doesn't seem to have an alterior motive. In fact, LLMD's put themselves on the line for the sake of helping patients they believe are very sick and can be healed. Doctors don't need to do that, there are alot more lucrative areas of medicine to be in. From the first visit, he told me he was gonna help us, and he had never heard of PANDAS, but is now contacting PANDAS doctors trying to figure out the link. He has actually had quite a few PANDAS cases referred to him. Our CD 57 counts are increasing and it correlates with her clinical improvement. I haven't seen this child in so many years!

 

I just want to give you hope. When I first got the diagnosis I didn't know whether to be happy or sad. Well here I stand today ELATED that I got that diagnosis and my daughter is back and better than I had even hoped for. It is a long road, and we are still treating.. I hope to start decreasing abx within the next few months.. Prayers to you.

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My 7 yr old daughter was found to have positive bands for Erlichia & Bartonella (no lyme). We were prescribed the meds on Tues & I have yet to fill the rx. b/c I also felt/feel like there is no possibility. Then I think about how we have always vacationed in N. Carolina with my daughter, wheremy dad has had ticks removed from him and that her onset of this was there on vacation. We also definitively know that she had strep at that time, b/c it then took 6 months to erradicate. We did also take in a stray cat last year, in addition to our other cats, which were previously strays from the shelter. Considering all this, I guess it is possible. Like Jill's daughter, we were prescribed Bactrim and Zith. We do to Disney in a week and I am afraid to upse tthe apple cart, as things are pretty good right now (slight tics).

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Everyone should know Lyme is not confined to any specific areas. It has be found in ALL 50 states of the US along with other countries. That would make it safe to say that the other tick borne illnesses are probably under reported as well. I live in So Cal in a metropolis and I found a tick on me MORE THAN ONCE! Other vectors are also thought to carry it (fleas, mosquitos..) I thought the same way, but the more I researched before testing, the more I thought I better test. I went in totally on the fence on if she could have it. Most doctors don't even know that much about lyme and TBI. It would be up to you to do the research and find a dr that will be able to help.

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Everyone should know Lyme is not confined to any specific areas. It has be found in ALL 50 states of the US along with other countries. That would make it safe to say that the other tick borne illnesses are probably under reported as well. I live in So Cal in a metropolis and I found a tick on me MORE THAN ONCE! Other vectors are also thought to carry it (fleas, mosquitos..) I thought the same way, but the more I researched before testing, the more I thought I better test. I went in totally on the fence on if she could have it. Most doctors don't even know that much about lyme and TBI. It would be up to you to do the research and find a dr that will be able to help.

 

We live in upstate NY & have a backyard full of wildlife, so it's more liky that my daughter may have gotten bitten right here in our neck of the woods. I was told by an infectious Dis. Doc. in Albany, NY who treated in Rhode Island for several years, that deciding to test with Igenex was crazy b/c why would a doctor set up that lab in a state that doesn't even have lyme and tick-borne illnesses? I kid you not--that was the first thing she said to us. We saw her on consult recommended by our Pediatrician. We won't go back there obviously. Awaiting a return phone call from Dr. Jones' office to schedule initial visit.

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