How do you Know if it's Lyme Disease or PANS?

[Lisa3]

Just curious, my DD10 was diagnosed with PANS by Dr T with strep, mycoplasma and coxsackie as triggers. Her labs showed a "normal immune system" She had a present p41 band. Dr T said she didn't have Lyme, but I am taking her to see a LLMD on Tuesday, because I feel like she does. I also feel like I've turned into a crazy lady, reading everything I can get my hands on.

 

My question is are her symptoms just neuropsychiatric symptoms from Lyme? Has anyone thought their child had PANS/PANDAS to find out Lyme disease is the culprit? The symptoms are so similar - I'm just a little confused.

 

I am positive for Lyme Disease and am being treated. Waiting on bloodwork for other two kids.

Thanks!

Edited February 22, 2013 by Lisa3

[Mary wag]

Hi Lisa,

Dr T thinks my daughter has pans but we cannot figure out trigger. However she was positive for bartonella. Neg for lymes. Previous symptoms aches in joints, headaches, rages, intrusive thoughts, stomach aches, fears, defiance, mild facial tics, milkmaid gip hands. All symptoms are gone except the intrusive thoughts come a couple times a day. She was treated with antibiotics a couple months. I thought my daughter had pans, but from talking to researcher of bartonella. It sounds like the Bart caused most of the symptoms. So like you not sure. I feel like that crazy lady too sometimes;)

 

From your Daughers blood work sounds like dr t found a few triggers. Doesn't band 41 mean any bacteria with flagellates?

Did you test her for co infections?

 

I just wish I could completely get rid of her thoughts. However, they are so much better. Also giving her inositol that has really helped her mood.

Mary

[lyme_mom]

Just curious, my DD10 was diagnosed with PANS by Dr T with strep, mycoplasma and coxsackie as triggers. Her labs showed a "normal immune system" She had a present p41 band. Dr T said she didn't have Lyme, but I am taking her to see a LLMD on Tuesday, because I feel like she does. I also feel like I've turned into a crazy lady, reading everything I can get my hands on.

 

My question is are her symptoms just neuropsychiatric symptoms from Lyme? Has anyone thought their child had PANS/PANDAS to find out Lyme disease is the culprit? The symptoms are so similar - I'm just a little confused.

 

I am positive for Lyme Disease and am being treated. Waiting on bloodwork for other two kids.

Thanks!

No doctor can know for sure whether or not your daughter has lyme so I would take that statement that she doesn't have lyme with a grain of salt. Whenever I hear someone say that their doctor says it "isn't lyme" or they "ruled out lyme" I know it is not a lyme literate doctor b/c they don't make such definitive statements. If a llmd says it probably isnt lyme then I would listen to that. All the tick borne disease tests are unreliable and all you can do is get to someone who treats lyme everyday (ideally a member of ILADAS who also has ongoing training in the diseases and how to treat them) and see what they think. The tests have not caught up with the diseases and I doubt they ever will. These bugs are morphing and the tests only test for a very small subset of the known strains of lyme, bartonella, babesia, etc. For example I think I had babesia but I have no test result showing that. I had the symptoms and my llmd determined I needed to try treating babesia. It worked and I went from being very sick to very well. It really doesn't matter as long as it works. Some lyme experts are relabeling lyme as multiple chronic infections. Much of lyme treatment is trial and error guesswork but the llmds have it down so that it is not that mysterious. Your lyme diagnosis and hiking history certainly make lyme a possibility and there is a simple way to test it....just try a trial treatment with a llmd and see what happens. Try to find a llmd who has a good reputation for getting people well. ILADS should be helpful in that regard. Good luck!

Edited February 23, 2013 by lyme mom

[tpotter]

You ask if it's PANS or Lyme. Lyme can be your trigger for PANS, as PANS includes any infection, environmental trigger and/or metabolic disorder (and most of us have found that there are multiple triggers, not just one.) This is the definition of PANS proposed by Swedo, et al.

[Lisa3]

Thanks tpotter, I feel like it's a stupid question - but at the same time it's information overload to me. Mary wag yes, I believe band 41 means any bacteria with flagellates. She was tested for co-infections and was negative. The testing was via Lab Corp and she was on antibiotics at the time. I'm really looking forward to our visit with the LLMD on Tuesday. For us this is only the beginning. Lyme Mom, your story is inspiring and it's nice hearing positive outcomes.

[tpotter]

Thanks tpotter, I feel like it's a stupid question - but at the same time it's information overload to me. Mary wag yes, I believe band 41 means any bacteria with flagellates. She was tested for co-infections and was negative. The testing was via Lab Corp and she was on antibiotics at the time. I'm really looking forward to our visit with the LLMD on Tuesday. For us this is only the beginning. Lyme Mom, your story is inspiring and it's nice hearing positive outcomes.

 

 

Definitely don't feel stupid. Personally, I think the parents on this forum are brilliant with everything we have hypothesized, figured out ,and are figuring out. And, the only way for us to figure it out for our own kids is by asking questions and sharing as much as possible. I thank God everyday for this forum, given how much better my children are doing as a result of everything I've learned from it.