How to verify yme or Pandas

[Michel12]

Could someone please tell me the best way to verify Lyme or Pandas? I match with the symptoms but have had at least 3 lyme tests including the western blot that came back negative. My doctor cant do Igenex in his clinic. Any more elaborate tests with high accuracy? I have been a mystery diagnosis for 8 years and want answers. I have been on minocycline 100 mg for 3 months and am feeling so much better but have been misdiagnosed so many times I want firm diagnosis to rest my spirit. I need verification of Pandas or Lyme. My doctor who is treating me says it doesnt matter but IT DOES! After lurking I still dont have all the answers or available resources. I would just like to talk ot an expert for a long time to ask my questions.

[mama2alex]

Hi and welcome to the forum. I tested neg for Lyme and coinfections for many years - and my doc used Igenex. This past spring advanced labs found spirochetes in my blood via culture. The tests that rely on the immune system to respond are extremely unreliable. I would recommend seeing a good LLMD (Lyme literate MD) - they will do a lot of testing but also take symptoms and medical history into account. Most if not all good LLMDs know about PANDAS/PANS and will check strep titers among many other possible culprits. You can start a new post asking for dr recommendations in your area/state and someone in your area will probably PM you with a name.

[pr40]

Igenex test kit comes in mail. local lab draws blood and mails it FEDEX to Igenex lab.

 

i am not sure if they do only US or foreign countries as well. what reason did your dr give for not doing Igenex?

by the way, PANS is the name for PANDAS caused not by strep but by other bacteria. and then it is not either or, lyme or PANAS. it can be both.

[rowingmom]

Our daughter's Igenex WB was negative for lyme, although she did have one lyme-specific band return as weak or IND. She did however test positive for bartonella hensalae with Igenex. Bartonella was the cause of her PANS symptoms. She is now 98% improved after abx treatment.