Do you thinks it Lyme OR PANDAS, or is it

[matis_mom]

Ok, so those of you whose children have been diagnosed with Lymes:

 

Do you think once you take care of the Lyme and coinfections the PANDAS will resolve,

 

or

 

Do you think Lyme is simply one of the possible for triggers, and even after you erradicate Lyme, you could still have the autoimmune part to deal with?

 

I don't know. For some reason I feel like once we take care of the Lyme (and this may take long indeed), PANDAS will resolve on it's own, but I don't really have any scientific reason for this.

 

What do you all think? How are those who are deep into Lyme treatment doing in respect to their PANDAS-like symptoms?

[KeithandElizabeth]

Unfortunately, since this forum is so new, there are only a couple of families ahead of us whose children have lyme disease with symptoms which manifest in "PANDAS/PITANDS" behaviors.

 

We are 7 months into lyme treatment and treating the lyme is resolving the "PANDAS" symptoms. I do worry about the next time one of my children get strep once we are done with the lyme treatment.

 

I have noticed on other websites and blogs that many children with lyme disease have PITANDS symptoms, however these families are perhaps unaware of the PANDAS/PITANDS diagnosis and they are simply focused on lyme. It seems that the PITANDS symptoms do go away once the lyme was treated. I often wonder if these families also had strep issues that they were unaware of or if the lyme and its coinfections were the only triggers for the OCD/TICs. I am guessing that several of these microbes can create the same symptoms.

 

Elizabeth

[cobbiemommy]

We are not very far along in this journey, only 1 month into treating a Lyme diagnosis, but years into the PANDAS world, but I think the PANDAS symptoms will go away when the Lyme/Bartonella is gone. My son's Lyme had been missed for years-probably over 6 years. He is already improving after one month of zith and augmentin. Now he is on Flagyl and I am starting to see improvements in behavior and attitude. He worked on his own homework today without me having to nag, beg, or hold his hand till he got it finished. Awesome. We are not symptom free or even close, but he is improving. Herxheimer reactions are horrible, though. They look like the worst of the PANDAS symptoms!

[matis_mom]

We are not very far along in this journey, only 1 month into treating a Lyme diagnosis, but years into the PANDAS world, but I think the PANDAS symptoms will go away when the Lyme/Bartonella is gone. My son's Lyme had been missed for years-probably over 6 years. He is already improving after one month of zith and augmentin. Now he is on Flagyl and I am starting to see improvements in behavior and attitude. He worked on his own homework today without me having to nag, beg, or hold his hand till he got it finished. Awesome. We are not symptom free or even close, but he is improving. Herxheimer reactions are horrible, though. They look like the worst of the PANDAS symptoms!

That's what I wanted to hear! I am so hopeful if I get all my kids properly treated for Lyme, PANDAS will be a vague memory!

What does herxing look like? I just want to be prepared.

[laurenjohnsonsmom]

PITANDS is caused by one or more infectious agent(s) (maybe one is underlying/hiding i.e.: strep in the sinuses/intercellular strep etc). The result is (one or more) infectious agent(s) that "over-load" the immune system causing the blood brain barrier breach (BBB). I call it "the planets aligning perfectly" theory. Not to mention that some children may be genetically pre-disposed/at greater risk of this autoimmune failure. Many other infectious agents can cause the same autoimmune response within the body (causing a blood brain barrier breach) that may cause sudden onset OCD and other neuropsychiatric symptoms such as..

 

Lyme Disease

Thyroid Disease

Celiac Disease

Lupus

Fifth’s disease

Sydenham Chorea

Kawasaki’s disease

Acute Rheumatic Fever

 

So in summary..Lyme is just another infection (besides or along with strep) that can cause the autoimmune response-PANDAS/PITANDS!