Adult with TS: the PANS puzzle

[BJ47]

Hi, I'm 35 now and began having motor tics around age 9. I was formally diagnosed by a neurologist with Tourettes Syndrome at age 19, though I've never really had verbal tics.

 

I had frequent strep throat as a kid. I can still taste the bubblegum flavored antibiotics! It got to the point where my pediatrician said if I had strep one more time he'd want to take my tonsils out. Terrified me! So after that, when I got a sore throat, I just wouldn't tell my parents. It's possible that in addition to all the treated strep, that I had a case or cases or untreated strep as well.

 

Enter PANS. I've been working with an integrative nurse practitioner to help me get to the root of my tics. One of the things she noticed was that my strep antibodies were high. She called this "systemic or neurological strep." We did a month of antibiotics but the numbers only came down a little. Tics weren't affected.

 

Enter Lyme Disease. My mom was diagnosed recently with Lyme and suggested I get tested too. She read that Lyme can present as Tourettes, or at the least aggravate the symptoms. I had labs done by a "Lyme literate MD" here in Nashville and have a follow up appointment with him next week. I have most of the lab results on hand (except the Lyme test) and am trying to piece everything together.

 

The CD57 test shows a result of 46, which is low. So low that some docs says it's likely a diagnosis of Lyme + co infections. We know I already have a stubborn case of strep, and the testing also showed the following:

 

Cytomegalo virus and Epstein-Barr virus: past infections

Herpesvirus6 and Mycoplamsa pneumoniae: past but not current infections

 

Does this make sense to anyone? I know I can't be the only person to have gone through all of this. Piecing the puzzle together seems impossible sometimes. Hope something here jumps out at one of you. Would love any input!

[kim]

BJ47,

 

I know you are probably hoping to connect with people with tics and low CD57 but the remarks (106 comments) from this site seem to have some people with good info on CD 57 in regards to lyme.

http://www.medhelp.org/posts/Lyme-Disease/What-else-causes-low-CD57/show/772748

 

Since CD4 and CD8 are discussed in some of the remarks too, you might want to look at this

 

http://www.biologicalpsychiatryjournal.com/article/S0006-3223%2806%2900804-3/abstract
Decreased Numbers of Regulatory T Cells Suggest Impaired Immune Tolerance in Children with Tourette Syndrome: A Preliminary Study

 

I hope someone on this forum has some input for you and welcome.

[rowingmom]

Our daughter's tics seemed to be associated with toxin buildup, especially bartonella endotoxins, but she is somewhat sensitive to mold as well.

 

Her PANS symptoms were caused by a bartonella infection (Igenex lyme WB came back with a couple of IND lyme-specific bands), and with treatment they resolved (after a fair bit of herxing while addressing the bart infection). Her bartonella pain symptoms took longer to resolve because of an underlying, asymptomatic babesia infection for which she had tested negative through Igenex. Treatment for babesia resolved the remaining bartonella symptoms.

 

She is continuing on low doses of Buhner's bartonella and babesia herbal protocols and is doing extremely well. She has a little residual ticcing (a mouth tic level 1-2/10), which is a great improvement from the motor/vocal levels of 7-8 that she experienced before and during treatment which caused problems with both her ability to read and to communicate.

[BJ47]

BJ47,

I hope someone on this forum has some input for you and welcome.

Thanks Kim! Definitely some interesting info via your links. I found out my Igenex results are in so I should be able to discuss everything with my doc next week.

[BJ47]

Our daughter's tics seemed to be associated with toxin buildup, especially bartonella endotoxins, but she is somewhat sensitive to mold as well.

 

Her PANS symptoms were caused by a bartonella infection (Igenex lyme WB came back with a couple of IND lyme-specific bands), and with treatment they resolved (after a fair bit of herxing while addressing the bart infection). Her bartonella pain symptoms took longer to resolve because of an underlying, asymptomatic babesia infection for which she had tested negative through Igenex. Treatment for babesia resolved the remaining bartonella symptoms.

 

She is continuing on low doses of Buhner's bartonella and babesia herbal protocols and is doing extremely well. She has a little residual ticcing (a mouth tic level 1-2/10), which is a great improvement from the motor/vocal levels of 7-8 that she experienced before and during treatment which caused problems with both her ability to read and to communicate.

That's incredible! Do you think that points to the infections as the source of her tics, or that the infections simply aggravated a genetic predisposition to TS?

[melmix]

Just wanted to let you know my son has been diagnosed with PANDAS/PANS and his infections are: Cytomegalovirus, HHV6, Lyme, Strep, Mycoplasma, & Anaplasma.

I think most likely he had the Lyme early and was then immunosuppressed and was not able to fight off other infections as easily. Seems like you have a very similar case. Hope you find good help with the doctor (our doctor definitely believes adults can have PANDAS/PANS).

Melmix

[rowingmom]

 

 

That's incredible! Do you think that points to the infections as the source of her tics, or that the infections simply aggravated a genetic predisposition to TS?

 

 

We have no genetic predispositions to TS in our family that I have ever observed or heard of.

 

I have seen some discussion on the metal adjuvants in vaccinations causing an increased incidence of motor ticcing and neurodevelopmental disorders in children. I would think that would be a more likely cause than a genetic predisposition in her case.

 

http://www.greenmedinfo.com/toxic-ingredient/vaccine-adjuvants

[BJ47]

I have three siblings, and two of them have symptoms of OCD/ADHD. I'm beginning to think that in many TS cases (mine included), there's a genetic predisposition that's activated or made worse by inflammation. Whether the inflammation comes from chronic infection, gluten, allergies, etc.

 

I picked up my Lyme labs today and it looks like I do indeed have Lyme. My IFA test was 80, which is a positive for b. burgdorferi. On my IGM test, I have a + on band 18. And on my IGG, a + on band 23-25. Also 4 other IND results on Lyme-specific bands.

 

I'm guessing I have piles of antibiotics in my future.

[BJ47]

Just wanted to let you know my son has been diagnosed with PANDAS/PANS and his infections are: Cytomegalovirus, HHV6, Lyme, Strep, Mycoplasma, & Anaplasma.

I think most likely he had the Lyme early and was then immunosuppressed and was not able to fight off other infections as easily. Seems like you have a very similar case. Hope you find good help with the doctor (our doctor definitely believes adults can have PANDAS/PANS).

Melmix

 

Wow, that's almost exactly like me. My mom recently tested positive for Lyme, so it's possible my case is congenital. It would make sense that the Lyme suppressed my immune system very early on and made me susceptible to all these other infections.