Reply To: Doctor in Worcester, MA area?… and introduction

April 2, 2012 at 2:41 am

I developed CIDP and dysautonomia almost 2 years ago. In the late 1990s I had a bad bout of neuro lyme for 3 -4years. After years of iv antibiotics, etc. I got back in shape – while all the while taking minocycline. Able to run marathons, half marathons, fitness instructor, spin instructor all the while working full time and raising 3 teenaged sons. Had mysterious back & nerve bouts from time to time and too numerous back injections for lower back pain and leg pain to count. A cascade of events landed me in Columbia NYC. Wished I had paid attention and listened to all the patients on this forum and gone to a center of excellence for CIDP and not the first available neuro I could see. That little bit of homework, plus a little more belief in myself would have saved me $thousands (and no, I am not kidding), so much wasted time/unnecessary medications and a permanent loss of nerve damage. CALL THIS FORUM 800# – GET THE 800 PHONE NUMBER FOR CENTERS OF CIDP EXCELLENCE. MAKE AN APPOINTMENT (who cares if it takes months to get the appt – if you had lyme you know how quickly months fly by). Get to that appointment and get yourself straightened out. I went to a dr whom I was told was “lyme literate” and a CIDP expert. What he was good at was collecting $ up front, getting the CIDP diagnosis- enough to get the insurance company to approve it. What he wasn’t good at was listening, examining me, looking at me in the eye, explaining things or – looking for the root cause of the CIDP or to take the time to find out if anything else going on (for me yes to both – and which greatly impacted the medicine I should have been taking, rather than what was prescribed). He also didn’t care how much I deteriorated (or why) and the pain I was in; he was unavailable for phone calls – even when landing in the er post ivig infusion – that he prescribed – for aseptic meningitis. The ER drs were furious at him and I realized I had been taken for an expensive ride at one of my most vulnerable times.
If the thought of a long drive or plane ride to one of those centers of excellence is overwhelming just rethink those worst lyme days – your trip to find real answers from real experts is nothing. Get yourself on the wait list, organize your paperwork and have your records sent in advance. The good news about centers of excellence is that they have seen a lot of post lyme patients and are the first to admit they don’t exactly know what the implication is of a complex lyme history. That first CIDP dr who saw me – not in a center of excellence – totally blew me off on the lyme impact and accused me of a variety of things, including not being able to handle a little nerve pain. (and yes, I was a marathoner, triathalon, a boot camp instructor and a mom of 3 teenaged boys – and if that doesn’t make you strong, nothing else will!) Turns out I have a very, very rare, progressive and very very painful neuro muscular disease – in addition to atypical CIDP – with a suspected underlying autoimmune or malignant (additional) disease. The new doctor was horrified that I was not adequately being treated with pain medications, nor properly treated for CIDP, etc I immediately contacted a pain management team and we have put together a plan that doesn’t cure the pain, but at least gives me hope that they are trying.
Now, thanks to this forum and their recommendation via the 800 #, I am seeing one of the best doctors in the world. From the moment my husband and I met him, we knew we finally found excellence. He – and his staff listen tome; they believe me, they understand the impact lyme had on my nervous and immune systems and are the first to admit they don’t have all the answers. But they told me first – and each time I see them – that they won’t give up, that they will take care of me and that there is no reason I should suffer (aka the way I did before). You deserve better treatment – now it’s time to grab a hold of yourself and insist on finding the best. It all starts with a phone call… good luck …