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How are all your kids getting Lyme disease ?


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Some neuro-lyme symptoms overlap Pandas symptoms. Some parents who initially thought we were only dealing with Pandas later found tick illnesses when our kids didn't see remission from Pandas the way we expected. So lyme, on the ACN forums, became a big co-morbid illness. As a result, ACN created a separate forum for lyme. It's probably the only lyme forum anywhere where the majority of families are also dealing with pandas. The lyme community overall has probably never heard of Pandas.

 

For us, our kids probably contracted lyme first (we live in a lyme endemic state) and we pulled ticks off their scalps four months before we had a strep-triggered Pandas episode. Most likely, the untreated lyme was overloading the immune system and when strep came along, it triggered an autoimmune response. But after we aggressively treated Pandas, DS would only stay in remission for about 1-2 months, and would have issues even without strep (we blamed exposure to strep, which it wasn't). That's when we found the lyme, three years after the tick bite.

 

It wasn't so much that my Pandas kid suddenly got lyme. It was that his mother suddenly "got" an awareness of lyme, which had been there all along.

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I can't say for sure...but a lot of us have children who had PANDAS symptoms, treated for PANDAS and saw improvement (or not), then with future exacerbations, dug deeper and found other infections like Lyme and Bartonella.

 

There has been some talk of strep being a co-infection for Bartonella. I'm not sure if that's true or not. But my dd had slighltly positive strep titers last year, but no physical symptoms of strep. The titers went down with antibiotics (along with her OCD and other PANDAS symptoms). However, the symptoms returned over the winter, without strep. We tested for Lyme and co-infections, and found Bartonella.

 

I found it interesting when I read "Cure Unknown." Back in the 1970's, when Lyme was just being discovere/researched and no one was really sure if it was baceterial or viral, Dr. Jones said many of his Lyme patients also had strep. When he treated those patients with antibiotics, he said their Lyme symptoms improved as well. That was his first clue that Lyme was a bacteria and not a virus.

 

My gut tells me there is a connection. I wish there would be some more research done in this area...

 

quote name='elykoj' timestamp='1310678120' post='117023']

i dont understand what PANDAS has to do with Lyme disease ?

Edited by KaraM
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We believe my ds has congenital Lyme and Bartonella (he got it from me in utero). He's had some mild behavioral/mood symptoms since birth, but the only dx was sensory integration disorder. His issues pre-PANDAS included daily tantrums/crying, sleep problems, aggressiveness as a toddler, mild attention problems, mild ODD symptoms, mild muscle weakness, plagiocephaly/torticollis, yeast overgrowth, allergies, asthma and recurrent pneumonia. Then at age 5, he had a PANDAS episode we didn't recognize while hospitalized for pneumonia. It resolved with antibiotics, but then at age 9 he had a more extreme onset of PANDAS that we couldn't resolve no matter what we did. He's never had a tick bite that we know of, and the nature and timing of my health problems also has led us to the conclusion that its congenital.

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i dont understand what PANDAS has to do with Lyme disease ?

My twins have documented recurrent strep infections from a young age. I believe they had pandas first because I can't imagine that they would have had any reason to contract Lyme until they were older and went to camp. I never saw a tick but believe it's possible my daughter was bitten at camp when she was 5. She had what appeared to be an infected pimple like mark on her stomach. I thought she got stung by a bee . When I took her to doc they said it was folloculitis. This took a long while to go away and several other ones appeared. She tolde it hurt and had some pus in it. Not sure If that was a tic but no other signs of one. I know that there is a gene that some of us are testing positive which also makes us more susceptible to tic borne illnesses. My kids are positive for this gene it's I think Hldr4.

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I think that having the lyme first....then pandas makes more sense to me...However we have it the other way around. DD7 started with recurrent strep for years. No symptoms. Then all of the sudden at age 5 we had full blown pandas. The pandas symptoms went away each time with antibiotics and we had her tonsils removed. Last April 2010 she had a tick on her neck. I took it off and 3 days later she had a red ring around it. The red ring was very small, like a mosquito bite, but I took her to the ped b/c it was exactly where the tic had been. 9 months later the pandas symptoms where there, we did antibiotics and they went away, but since then the symptoms were coming back every 2 months even if she was still on the abx. Now that we know she has lyme and are treating both we are finally seeing results again. So I think for us it was pandas....then lyme. I have to add that another child in our neighborhood had a tick bite a couple of months ago....then had a "HUGE" bullseye 3 days later. He has been diagnosed with Lyme now too. Obviously we have the dangerous ticks close to home here! Scary! Anyways, thats our version of which came first, the chicken or the egg. I can't wait until there is a better answer oneday to explain the connection!

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Hind sight is a wonderful thing, isn't it? I now know from thinking back that I'm certain my dd contracted the Lyme/bartonella before she presented with PANDAS symtpoms. I'm still not sure what causes her autoimmunity but its there. She developed mild OCD at the time that she had the flu-like illness from Lyme. She had difficulty breaking at night, pain in her chest, and a racing heart. We thought it was all from the flu. She slept in my bed while she was sick and never could sleep alone again and she had been sleeping alone for many years. She was almost ten at the time.

 

The OCD was somewhat managable for almost 3 years (with zoloft and therapy) then she had an exacerbation that incapaciated her, completely. At that point, we figured out the PANDAS aspect of it but at that time, any illness made her OCD go crazy. Cold, flu, H1N1 vaccine...never was diagnosed with strep of any kind, but did develop allergies and sinus infectins due to inflammation in her sinuses. The sinus drainage issues did not resolve at all until she was on Lyme treatment. Hmmm...

 

So yesterday my sister asked me to walk to her garden a hunderd feet up the hill. I found a tiny, and I mean tiny, tick embedded on my foot 4 hours later. It looked like a speck of dirt and the only reason I looked closer was because it wouldn't come off. I happen to be at the lab for my dd's blood draw and had them get me a pill bottle to put it in. I saved it. It looks like dirt speck, but i can see legs if I really peer at it closely. I never felt it at all.

 

I pulled one off my dd's scalp some years back and the head stayed in. I put salve on it and hoped it woudln't get infected. She never complained about it again and I forgot to check it. lyme was not on my radar.

 

Kids with Bartonella tend to have their ocd come on more slowly than that of JUST PANDAS. That is why I ruled out PANDAS for a long time because she wasn't incapacitated overnight. It grew slowly, but certainly followed that flu like illness. Then we had a big exacerbation that incapaciated her. That also grew over a few weeks.

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For us its Congenital Lyme Disease: All three of our children present a little differently but do have some common symptoms, rashes and lab results. Our older child had a sudden on-set in June of 2009 along with strep related illness which led us originally to PANDAS diagnoses. We eventually confirmed Lyme via DNA testing for him. I had Fibromyalgia like symptoms and was originally told early on-set of RA or possible auto-immune related illness but eventually unravel Lyme Disease due to older DS Diagnoses. After my diagnoses we knew we needed to test our younger twins... We already suspected something was wrong due to immune deficiencies, repeat illnesses and Lupus like rashes over their entire bodies. We caught it early for our twins, they lacked sudden on-set of PANDAS but one child did have early on-set of OCD, rage behavior and both twins had Autistic traits at 2 1/2 years of age. Our family is infected with: Lyme, Bartonella, Babesia... and harbor various viruses. Strep is no longer an issue for older DS.. titers have resolved. All three children are recovering and we are currently winding down antibiotic therapy for one child to see how she does.

 

-Wendy

Edited by SF Mom
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lyme is very good at morphing, evading, as well as invading the immune system. It is known to cause autoimmune issues. My dd had elevated titers with no recent confirmed strep. In retrospect, she could have had it passed in utero, or from a bite at 3 yrs old. My thought on the connection is that lyme wreaks such havoc on the immune system that it can actually trick it into thinking there is strep even when there isn't. Lyme can change its surface proteins and may very closely resemble strep. Therefore, someone with a previous strep exposure will have the strep antibodies (from their memory cells) and can produce antibodies in excess to find a strep that isn't really there. If it is neuro lyme (lyme can be in brain tissue) those strep antibodies could be attacking that area causing the inflammation known to PANDAS. Of course there is no way to know for sure, but this is what I feel could be happening with us. We have seen so much improvement treating Lyme rather than PANDAS (even though it is just a combo of abx) the lyme diagnosis is what is leading to healing for us. I agree the connection needs to be researched swiftly- our chilren are needlessly suffering.

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