DsMom Posted July 11, 2013 Report Share Posted July 11, 2013 Finally we are at the point my gut told me we needed to be at over a year ago w/ DS13. He's been incapacitated by PANDAS for over 19 months now, we're working on Lyme, working on biotoxins but his dopamine is SO high per recent Cunningham we really need to try PEX. IVIg 2x with little, if any changes, but his is tic disorder so always back to PEX. Do any of you vets out there have a doc and or locations that support PEX? Working with Dr. T on this since he will prescribe but I can't sit around and wait, I need to get something moving fast. The risks are worth it as my boy basically hasn't been able to leave the house for almost 2 years now, is severely depressed and suicidal. Love this forum, and all the wonderful members who help me with information I'd never be able to dig up on my own. Link to comment Share on other sites More sharing options...
trintiybella Posted July 12, 2013 Report Share Posted July 12, 2013 I don't know but I am so thinking of you. Hope you get answers soon. Link to comment Share on other sites More sharing options...
LNN Posted July 12, 2013 Report Share Posted July 12, 2013 Dr L and Georgetown do Pex on a regular basis. But if you're fighting lyme, I'd wonder about a procedure that removes antibodies. Not sure that's a good idea in a body that's fighting an active infection. I'm guessing you mean his dopamine autoantibody numbers are high and not dopamine itself - i don't think Cunningham's test measure actual dopamine levels. FWIW - my son was a big ticcer. For him, he tics when his body has more toxins from dying bacteria than he can handle. Tons of detox and anti-inflammatories helped him. Pex helped for about a month but he relapsed because the chronic infection (lyme) hadn't been found or treated back then. It was great to see him not tic but it was a quite a procedure to go through for an unfortunately short-lived benefit. Link to comment Share on other sites More sharing options...
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