PANDAS and LYME in siblings

[hawaiijenni]

Daughter, 8 years old, was diagnosed with Pandas 1/17, after 1 and 1/2 years suffering. She was also positive for Myco P, CMV and Lyme. 3 very lyme specific bands were positive in Western Blot. Cunningham Panel came back with all elevated. Since this diagnosis, I myself have been diagnosed with Hashimotos. Then, today, my 12 year old was diagnosed with Graves Disease. He also tested positive for myco p. Our youngest, 6, has had mono, molluscum, and was positive for myco p in the past 3 months. He also can be very challenging with being aggressive, cries often, doesn't eat well. He does well in school academically, it is more socially. Some impulsive behaviors as well. Fights with siblings and has a mean streak. I just feel like is all of this separate or is something going on with all of my 2 other kids that is more than poor behavior and possible thyroid issues? Could it be PANDAS causing all of this, or could it be LYME! Starting to go a bit crazy with all these issues that keep popping up. My gut tells me something is going on but I don't know if I'm just being paranoid! It has been HARD year and a half with my daughter! What do you think??????

[LNN]

Given your kids' histories, I think it's very reasonable to suspect that there's a common infection, as well as possible genetics, that link your family's health issues. It could be Lyme (either congenital or from all of you being exposed during a shared hike or trip to an endemic area) or mycoplasma, which is highly contagious, or both, or these plus some other shared infection.

 

It can also be that some of the mutations in the genes your family shares are contributing to the way your bodies are handling the strain.

 

The first place I'd put my money is on seeing an LLMD (lyme literate MD). Initial visits are costly, and most don't take insurance, so you have to pay out of pocket and then submit your own claim for hopefully partial reimbursement. But these doctors specialize in chronic infectious diseases that can affect a variety of systems (endocrine, immune, gastro, neurological, etc). And they tend to be good at seeing things from an interconnected perspective instead of specialists who only look at one body system in relative isolation. They're good problem solvers.

 

If finding or seeing an LLMD isn't something you can do quickly because of where you live, then I'd at least see if you can get Lyme tests for your 12 and 6 yr olds, preferably from Igenex Labs, as they test for lyme-specific bands that other labs don't test for, and can potentially catch cases other labs would miss.

 

Finally, you might consider testing thru 23andMe, which consists of getting your kids to spit into a vial. You then get genetic data that can help you understand how their bodies might be struggling to make and balance neurotransmitters. Your 6 yr old might benefit from some supplements like niacinamide (flush-free niacin aka Vitamin B3), which for some people with genetic COMT mutations, can help them process/degrade adrenaline better and help them calm down more quickly (less rage/meanness).

 

Both 23andMe and Igenex used to have special pricing for testing multiple family members at once. You can check to see if that's still the case.

 

Follow your instincts. It seems very possible that there's a common link. Good luck!

[PANS-mom]

All 3 of my kids have autoimmune issues and mitochondria disorders, which makes them susceptible to inflammation an also my two oldest have reactions to vaccines. My oldest has autism and my brilliant middle one has PANS and we are going to start a round of Zithromax for my youngest because she is perpetually tired for no reason, has been since she had pneumonia in 2014, and she tested high titers for mycoplasma. So this stuff is definitely genetic and is a theme through siblings. Good luck with all of this. It is very difficult to constantly deal with kids who are struggling. But at least there are answers and help out there.

 

​I have high mycoplasma titers too but my own doctor does't believe in treating past infection with antibiotics. So I treat my symptoms...not the cause at this point

 

I just read a new amazing report that vitamin C infusion mixed with steroids can cure sepsis by boosting the immune system and bringing down inflammation. I am going to talk to our pediatrician about this in a couple of weeks at my youngest next physical.

[bobh]

I know of a couple families in my area where both or all 3 kids have PANS or PANDAS. I think that the number of families that there are like this is a very strong indication that there is a genetic susceptibility. That is not surprising for an autoimmune disorder.

[bws1565]

I think you should look into Lyme disease and all coinfections. If your family members were all exposed to the same environment, and having the same genetic makeup, it would only make sense that same problem is expressing itself, if somewhat differently.

 

Read the book "Cure Unknown" by Pamela Weintraub . Great source of Lyme information. BTW do you live or vacation in a Lyme endemic area?

[hawaiijenni]

Thank you for all the suggestions. We actually don't live somewhere where it is common at all now. We are in Hawaii, and Southern California before that. However, my daughter may have been bitten in Michigan 6 years ago. She did have a bite at that time that was infected. We never saw a tic nd itdoctir did not think tic. I however, have many of the symptoms of chronic Lyme. They also fit for hashimotos, but I am really wondering if maybe I had it. Went to school in Maine. Getting tested to see if I do. The more I read the more I realize that the many random symptoms I have complained to doctors about through the years could possibly be httpm the hashimotos or possibly undiagnosed Lyme. I just feel like something is at play on our bodies and need to figure out what!!!

[bobh]

Being in Michigan (and with a mystery bite to boot) certainly keeps very real the positive your daughter have for lyme. I echo other's suggestions here to chase the lyme treatment - sooner is better than later. Will you have a hard time finding an LLMD in Hawaii?

[hawaiijenni]

We are working with Amy Fishman in northern ca for my daughter. Treating Lyme, pandas and co infections. I have an ND I am working with for my thyroid and I think I will take my so. To her as well. If we find any more Lyme we will be an LLMD and will need to go out of state.

[bws1565]

This might explain how lyme affects adrenal and thyroid function.

http://fightinglyme.weebly.com/adrenal-fatigue.html