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Does anyone know what the P41 band is on the Lyme test?


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PacificMama,

 

Your number 2 floored me!

 

How often are you on the PANDAS forum posting about LYME!!??

 

And number 4..... Dr. T has been treating PANDAS patients for well over 10 years....nothing recent about him.

 

Number 5.....I can't imagine you ever referring someone to a PANDAS specialist because they can never seem to have PANDAS, just Lyme.

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I, for one, am SO INCREDIBLY GRATEFUL to those Lyme parents who have been posting on the PANDAS forum encouraging those who are not seeing a resolution of symptoms to test for Lyme disease. I have been peeling off one layer at a time for nearly 13 years -- first autism, then colitis, PANDAS, and now Lyme disease. Never mind all the other misdiagnoses and missed diagnoses in-between. It took more than 5 years to get the PANDAS diagnosis and another 5 years to find a treatment that would put my daughter's PANDAS into temporary remission. Yes, the IGeneX test was expensive, but I had nothing to lose and everything to gain. If it came out negative it would have given me piece of mind. That alone was worth more than the cost of the test. My DD had been tested twice before in the past few years using standard labs that did not look at any of the Lyme-specific bands. She came out positive with band 41 and that was it. So nothing further was pursued. Without the Lyme parents posting on the PANDAS forum chances are we would have gone on for many more years doing one IVIg infusion after another that would have given us only temporary relief. Even with a topnotch team of doctors that includes a neurologist, immunologist, DAN doctor, PANDAS doctor, and many others, it was me who insisted on the Lyme testing through IGX. And I would not have done that if it weren't for the Lyme parents posting on the PANDAS forum encouraging us to rule it out. THANK YOU, THANK YOU LYME PARENTS!!

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Nancy: I have to ditto everything you are saying!! I feel like the lyme posts on the PANDAS forum literally SAVED my son!!! I sometimes wonder what would have happened to him if we did not see these posts???

 

Again, we live in Colorado, which has one of the lowest rates of lyme disease. We did travel once a year to South Carolina, but I thought what were the chances that both of my children got lyme disease on vacation. I have NEVER seen a tic on my children. I was really expecting their lyme tests to come back negative!

 

On the positive side, our son is doing great now that we are treating him for lyme and its coinfections. His first IVIG did wonders for him, but after 5 additional IVIG's, he really slid back into that dark "PANDAS" space! I was so horrified!

 

So, I do encourage everyone to check for lyme, strep, mycoplasma, bartonella and the other coinfections. I think it is especially important to treat each infection with the correct antibiotics and drugs in order to completely heal.

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