Lyme and PANDAS

[Dean1065]

Hello,

 

We are new to PANDAS with my daughter being diagnosed in December 2011 so I am still in the process of learning everything I can. I have only posted a few times on the PANDAS board and never here. Our problem appears to be strep only as far as we can tell, with OCD being the main symptom (no tics). I read most of the posts on the PANDAS board and can't help but notice that Lyme is a major topic in many of the threads. My question is whether there is believed to be a connection for many kids between PANDAS/PANS and Lyme, or if it is a case in which some/many the symptoms and disease progression of PANDAS and Lyme are similar. I have also noticed that some have said that the symptoms that people have listed in their threads remind other posters of a Lyme related illness instead of strep triggers. I was hoping someone could help me understand this, along with some of the differences and similarities of the Lyme and PANDAS ilnesses and how they respond differently to treatment.

 

Regards-Dean

[MichaelTampa]

It can be tricky to sort out. I once thought I had PANDAS and am now sure I have lyme and not PANDAS. One can have them both. The number of people with both makes me wonder if lyme causes PANDAS (as it is known to cause autoimmunity in general), or if PANDAS coupled with exposure to infections makes the immune system weak and unable to fight lyme off when exposed and so increases chances of getting lyme. To me, the biggest differentiator is that with PANDAS there are a lot of symptoms, such as OCD and including rages for people with that symptom, that come on quickly as a result of exposure to some infection (such as strep). And then as the exposure goes away, symptoms significantly reduce.

 

When at my worst, I had symptoms that came and go, including rages, but the extreme high points of symptomsy were triggered by exposure to fluorescent lights and/or wireless signals, and they never came close to going away. Some symptoms are simply more lyme and having nothing to do with PANDAS, and chronic fatigue and joint pain come to mind here although there are no doubt others I am not remembering right now. When joint pain comes and goes or moves from one location in the body to another, and the person has a general symptomology in the PANDAS/lyme nature, then lyme is then always involved regardless of whether PANDAS might also be involved. I am sure some disagree here, and will point to rheumatoid arthritis being involved with strep autoimmunity, and there is history and documentation of this, but the docs who treat arthritis who also treat lyme see this symptom always go away with lyme treatment, and so I conclude all those cases were undiagnosed lyme (doesn't surprise me as we do see overlap with PANDAS and lyme).

 

Well, that's my opinion anyhow.

[LNN]

With "perfect" hindsight (ha! like that exists), I "think" my DS always had a zinc/B6 deficiency called pryoluria. This made his immune system unable to fight a lot of infections during toddlerhood. Then at 5, he may have gotten lyme (tick bite on scalp). Then 6 months later, he got strep and it broke the camel's back. So I think you can have "pure" pandas, sometimes maybe "pandas" is just mis-diagnosed lyme (or bartonella) with dominant neurological symptoms and sometimes maybe you have underlying issues that need to be addressed before you can get fully healthy, regardless of the name of the bacteria infecting you.

 

Personally, there are certain red flags that will prompt me to reply to someone on the Pandas forum. These include symptoms like joint pain, muscle pain, cycles of behaviors, rashes, rages that don't seem triggered by OCD, extreme fatigue, fevers without other symptoms of illness (like no sore throat or congestion), fevers that come on suddenly and depart suddenly with no other symptoms, or the big one for me - regressions that aren't linked to obvious illness. When someone says "DS was doing well but then went south but he's not sick - maybe he was exposed to someone who was?" Not that exposure can't trigger Pandas, but it makes me want to suggest it may be a chronic undiagnosed infection and not just that he sat too close to someone with a cold.

 

If you look at Swedo's dozen or so symptoms in her early research - if someone posts about symptoms not on that list, my antennae goes up. Or if the child doesn't respond the way he "should" to a Pandas treatment, that makes me go "hmmm" too.

 

The symptoms overlap quite a bit. And as Michael said, sometimes you can have both. Or neither. Or both plus something else. It's rare that someone who is chronically ill is only going to have one single thing wrong. It becomes a snowball or ball of string and takes time to unravel.

 

If your child is responding well, I wouldn't worry too much about lyme. It becomes something to investigate more when you don't get long remissions between Pandas flairs. I think that's how most of us ended up on this forum. It was that there was something more left to uncover.