New Pans Diagnosis

[Lisa3]

My DD10 was just diagnosed with PANS by Dr. T her triggers are strep, mycoplasma and coxsackie. She is being treated with steriods, Biaxin and Acyclovir.

 

Her Western Blot was negative except for IgM P41 which was present abnormal. Dr T said she does not have Lyme, but it's not sitting easy with me. Has anyone been told their child didn't have Lyme to then find out they did? I'm in NJ - if anyone knows of a good LLMD that we can see could you please PM me?

 

Thanks,

Lisa

[Ebersolk]

My daughter's western blot was negative and then when we did Igenix Lyme and co -infection panel. The Lyme was still CDC negative but he co infections were positive and when we went to a Lyme DR he dx her with lyme as well as the co-infections.

[LNN]

I was told by one of the Pandas specialists that my son did not have Lyme. Our LLMD (in central CT) looked at the same labs and immediately diagnosed lyme. My son has gotten far better with Lyme treatment (Pandas treatment alone never got us lasting results). I mean no disrespect and I know Dr T has helped many. But he does not know lyme and IMO, should know better than to rely on a standard western blot. He has butted heads with many naysayers who insist that without elevated titers, you can't have Pandas. So why he continues to rely on something like a standard WB baffles me. Go with your gut.

[tpotter]

My daughter's western blot was negative and then when we did Igenix Lyme and co -infection panel. The Lyme was still CDC negative but he co infections were positive and when we went to a Lyme DR he dx her with lyme as well as the co-infections.

 

 

DITTO. I'm sending you a PM.

[Lisa3]

Just wanted to thank you ladies! My dd has an appt with Dr J in April, hoping to get in sooner. My DH and I got tested last week and I came back positive for Lymes, I was shocked to say the least. I have symptoms, but attributed them to getting old and burning the candle at both ends. My other 2 kids will be tested next week. We have always been an outdoors family, hiking a lot and vacationing in Maine and New Hampshire. I always feared LD, but also thought it wouldn't happen to us. Boy, was I naive.

[Mary wag]

Just wanted to thank you ladies! My dd has an appt with Dr J in April, hoping to get in sooner. My DH and I got tested last week and I came back positive for Lymes, I was shocked to say the least. I have symptoms, but attributed them to getting old and burning the candle at both ends. My other 2 kids will be tested next week. We have always been an outdoors family, hiking a lot and vacationing in Maine and New Hampshire. I always feared LD, but also thought it wouldn't happen to us. Boy, was I naive.

 

 

Hi Lisa,

Me too. I finally tested my dd 9 for lymes through igenex. IgM positive for lymes. Just got results yesterday . She was tested through lab corp back in nov and was neg. glad to know now. You are lucky to be seeing Dr J!!

We live in San Diego.

Mary

[sf_mom]

Mary,

 

Sorry to hear of your DDs recent diagnoses. I wanted to mention that there are some decent LLMDs in CA treating pediatrics. Some even in San Diego. You might reach out to ILADs or a local Lyme support group for referral.

 

If you are willing to travel to SF we have 4 different LLMDs treating pediatrics, each with slightly different approaches but all very well respected in Lyme world. We are welcome to PM through the forum if you would like some names in the Bay Area and personal perspective on their approaches to treatment. As a family, we feel very fortunate to live in CA and have access to this particular network of Dr.'s.

Edited March 9, 2013 by SF Mom

[KaraM]

Lisa,

 

After finding Lyme and coinfections in my two kids, doing research and learning about all the symtpoms, I was tested myself. Low and behold, I had/have it too. As with you, blamed it on age, hormones, working mom, etc. etc. I've been treating for about a year now. Huge difference. Depression, hip pain, anxiety, cognitive functioning have all improved dramatically...enough that I felt comfortable taking on a new job that has some pretty big expectations.

 

Good luck to you. If I can help in any way, let me know (but please read my post on the PANDAS page about Stopping abx with Dr. J's blessing...if you want a quick reply, shoot me an email).

 

Kara

 

 

 

 

Just wanted to thank you ladies! My dd has an appt with Dr J in April, hoping to get in sooner. My DH and I got tested last week and I came back positive for Lymes, I was shocked to say the least. I have symptoms, but attributed them to getting old and burning the candle at both ends. My other 2 kids will be tested next week. We have always been an outdoors family, hiking a lot and vacationing in Maine and New Hampshire. I always feared LD, but also thought it wouldn't happen to us. Boy, was I naive.