Need LYME Dr that understands PANDAS diagnosis

[chodnett]

New to LYME forum from PANDAS.

I want to persue LYME testing.

Dd is PANDAS for 3years+.

antibiotic treatment over a year and 3 HD IVIG

Still have tics.

need to rule out lyme.

please help me with the right DR. to help.

Do not want to start all over with explaining PANDAS to unbelievers.

Thought those days are over.

Thanks

[lismom]

Can't help with doctor info because I'm looking into this as well. Trying to treat PANDAS for year and a half. Still tics remain, and get worse. What tics are you seeing and what treatment did you persue?

 

Where are you located so maybe someone can make a suggestion. Kathy

[lyme_mom]

  On 1/10/2011 at 11:51 PM, lismom said:

Can't help with doctor info because I'm looking into this as well. Trying to treat PANDAS for year and a half. Still tics remain, and get worse. What tics are you seeing and what treatment did you persue?

 

Where are you located so maybe someone can make a suggestion. Kathy

Dr. Paul Beals, treats Lyme and PANDAS.He is an integrative physician with over 35 years experience. He works out of NIHA in DC (nihadc.com) and his private office in Stevensville MD which is a little cheaper. In DC he works with a holistic nurse who is quite knowledgeable about both too.

[chodnett]

Tics are different daily. But she goes through some days vocal to great days not vocal, only motor. They are constant and evolving. She is in school so you can only imagine the pinned up stress when she gets home. She is better from starting PANDAS protocol and remains at this level sometimes regressing, never very bad. We travel for PANDAS DR now will have to travel for LYME DR. We live in TX so no DRs here I guess you can say LYME DRs are outlaws! Run out of town when they are found out. As a mother, never in a million years would I think in 2011 no one here would treat my precious baby girl to make her healthy again.

Edited January 11, 2011 by chodnett

[PacificMama]

Chodnett,

 

Lymemom's referral is a good one for the lyme / pandas knowledge.

 

If you want to check out others, see the "helpful links" folder above on how to find a lyme doctor. Try lymenet forum mentioned... there are a lot of Texans on the board and could maybe be helpful about the doctors that are a bit closer to you.

 

Good luck.

[chodnett]

I have exhausted Lyme net and ILADS and it was not helpful. names sent were "well maybe they do not treat children, ask 1st"

[PacificMama]

Sorry lymenet didn't work out. Maybe try asking Emerson who she has seen / is going to see.

 

Did you get this referral?

www.drcharlescrist.com

 

He is in Missouri and treats children. There are other Missouri docs, and in nearby states that might be drivable for you. Contact Iowa lyme association and they will send you a mulistate list for the central states. Maybe also check with IowaDawn too.