New Rheumatologist

[airial95]

We switched insurance a couple months ago, I made sure that my son's entire medical team was covered on the new policy so there wouldn't be any interruption in his PANDAS journey. In typical mom fashion, I didn't do the same for myself and I had to find a new rheumatologist for my Ankylosing Spondylitis.

 

I went to the new office yesterday for the first time. They use plasmapheresis for the treatment of RA, and there was lots of literature about it around the office, I was intrigued. (I wasn't aware that it was a treatment for RA).

 

Then the dr kept me waiting for over 45 minutes - my intruge turned to irritation, I was NOT impressed so far.

 

But - when she did finally come in, she spent quite a bit of time with me, and when taking my family history, she of course asked about others with autoimmune/inflammatory issues, I mentioned all of them (the list is looong in my family), including Broderick's PANDAS. (I was curious to see her reaction - believer, non-beliver, clueless or not) Not only did she know about PANDAS, she started asking all kinds of very good questions about who treats him, what we're doing, etc... Turns out - prior to becoming a practicing Rheumatologist - she was an immunogenticist, researching all sorts of autoimmune diseases (her focus was AIDS), when funding cuts came down in the early 90's, she got out of research and started practicing. She stays well versed on all of the latest and greatest.

 

When I mentioned that all of Broderick's immune panels have come back annoyingly normal, yet he somehow manages to catch strep constantly and while on abx, she asked if I would mind her mentioning my son to some friends she has in California. They run a testing labe out there (RDL Inc) for autoimmune/inflammatory type issues and they've been taking an active interest recently in PANDAS. THey keep a database, and use serums from a variety of patients to help improve and refine current testing techniques, and also do research on new tests for various conditions.

 

Has anybody from that part of the country heard of them? I looked up their website, RDLinc.com, but seeing as I'm not a doctor - I couldn't really follow half of what's on there.

[kimballot]

Don't know anything about them.. but I LOVED your post!

[tpotter]

Sorry, I don't have a response for you, but I am intrigued by the PEX for RA. My DH has terrible RA, and may even need surgery (on top of the cardiac surgery he needed earlier this year.) Personally, I suspect he may have had untreated ARF, because of the mitral valve prolapse that caused his cardiac surgery.)

 

Anyway, if you can direct me to the literature on using PEX for RA, the doctor's name, etc, so I can bring it to the attention of my DH's Rheumatologist, that would be great. He's been pretty open to things. You can PM me the info.

 

Thanks.