With Apologies to Barbara Streisand

Submitted by hdwhit on Mon, 2009-03-30 12:10


People who need Doctors

Are the sickest people in the world...

Now, I'm not trying to start a controversy here about the fact that there sick people who don't have access to medical care, just trying to come up with a subject line based in popular culture that is at least somewhat obliquely related to the subject of the post and might keep me in contention for the Bulwer-Lytton prize.

Anyway, some time ago I went to one of the Lyme disease sites and downloaded the names of some doctors who are willing to treat patients with antibiotics. 

The continuing interest in Lyme on my part had to do with the fact that when I was hospitalized after my first exacerbation (or at least the first symptoms subsequently identified as an exacerbation), I was tested for no less than 36 different types of brain infection.  Noticably absent from the tests was Lyme.  I found this curious since 1) Lyme can cause lesions that look like M.S. and 2) I frequently travel to regions of the country where Lyme is endemic and both my former manager and co-worker were diagnosed with Lyme in the then-preceding year.  It wasn't until later I became aware of the Lyme disease controversy in Texas in which the state holds there is no such thing as Lyme disease in Texas and any physician treating a non-existant disease is doing something unethical.  

Anyway, I did locate a doctor (neurologist, actually) who was close enough they didn't require an overnight trip.  I'm being deliberately vague here since there are few neurologists within 500 miles of me that will treat for Lyme disease and I don't want to indirectly identify them. 

Since I was desperate enough to have undertaken to start the CAP on my own without medical supervision and I wasn't about to stop, I figured that they didn't need the potential legal complications that I might represent.  But when 1) my primary care physician expressed her disassatisfaction with the fact that the M.S. specialist only wants to see me once a year and wanted me to get a neurologist who was closer and 2) I reached the end of my antibiotic supply, I figured this was as good a time as any to get a new neurologist.

I saw this doctor who I will refer to hereafter as my "new neurologist" or the "non-M.S. specialist" neurologist.  The new neurologist spent more than an hour going over my medical history, examining me and reviewing the MRIs.  This was all done in the examining room with me and at each step the new neurologist explained what was being looked at, what they exepcted to find and its clinical significance.  I was actually told more in that one session than I have been able to get out of all of the other doctors that have seen me since July 2006 combined.  

The new neurologist said that while the clinical examination, MRIs and the results of the spinal tap were sufficient to meet the McDonald criteria, it was not unreasonable to run the tests for other infections since diagnosing M.S. also requires excluding other conditions that could mimic the disease (although in my case, they would be surpised if I did turn up with something else).    

The new neurologist is familiar with the work at Vanderbilt and holds the view that M.S. is caused by a bacterial infection (of which CPn is a likely candidate) but that after the infection is resolved (either by the body itself or with antibiotics) there are cases in which autoimmunity persists autonomously and absent any findings from the lab reports, the new neurologist thinks that's the group I am going to fall into.

The appointment wasn't everything I could have wished for, but it was certainly better and more informative than any I have since this whole odsyssey began.   



So we hope this is a new, improved neurologist, who obviously can see beyond the end of his/her nose.  A new breed.  Fabulous!  May they be turned out in enormous quantities.  But the unanswered question is: Did you get prescriptions for your abx?


3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Improved? Definitely, but then the fact this one didn't tell me that my next stop after leaving their office should be an attorney well-versed in estate planning would be enough to constitute an improvement (although under the circumstances, I don't really fault that neurologist for offering that advice since it would have been very helpful if I had actually had brain cancer).  

This neurologist is not much a new breed as one that is old enough and far enough advanced in their career that they can feel its worth spending a couple of weeks a year fighing with the state to keep their license if it means helping people who have almost nowhere else to turn.

No scrip.  Didn't ask for it. 

  • I wanted a neurologist I could actually get straight talk out of (and think I've found them). 
  • I wanted the tests for Lyme and related bugs (and I got at least part of that). 
  • I didn't want "drug seeking behavior" to get in the way of those other priorities. 

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.