The Lyme disease Game Changer

Two men.  Same very bad health situation.  Both very smart.  Both motivated to beat the illness.  What struck me during the most recent “pow-wow” of the minds was how different these two men were in their approaches to their disease – Lyme disease – that has hit their neurological and muscular systems hard to the point that ALS/Lou Gehrig’s disease is mimicked.

I was present for the meeting since I was acting as interpreter for my husband, who is now using a letter board to spell out his words.  His muscles are so weak and his diaphragm hit to the point that he had to have a tracheostomy a few years ago.  I know my husband well, know what he has researched, know what his thoughts are on many issues, and could fill in his words before he completed them fully on the letter board.  My husband looked at many angles of Lyme disease.  He considered the gaps in his nutrients, and toxins in his body.  Fighting the Lyme bacteria, Borrelia, became the main focus.

Our friend, whose body has responded in the same way as my husband’s, behind his progress by about 12 months, is equally intelligent.  An engineering, scientific mind, very up for the challenge of solving a puzzle.  He reminds me of Jim in so many ways.  They are both very capable of considering patterns and data sets, and able to shift through details page after page (something that would turn off many people).  Our friend, however, had a different take.  His focus is completely on the neurological aspect of things.  The Lyme bacteria are secondary.

While listening to our friend speak and while trying to be the voice of my husband, I was struck point after point, minute after minute at how these two men were looking at the same problem with completely different views.  I couldn’t be more surprised at how little the intersection was between the two research focuses.

If my husband Jim had his physical voice, I am sure the synergy between the two men would go further than it is currently.  Both men are hard-working, and full of energy (even considering the current illness and health decline).  I know they would be able to battle it out, pulling in both perspectives and ideas and gaining a foothold on this horrible illness.

Then I was reminded of a recent seminar that I attended.  It was fantastic, given by a microbiologist who studies Lyme.  After his talk, I asked him if he ever attended the Lyme meetings, especially because at this point his research is not published.  He looked at me strangely and then commented “Oh yeah, we’re really separate.  We don’t really get into the clinician side of things.”  Oh, the synergy lost!

What could happen if the research biologists and the clinicians really battled it out in a room for days?  The voice that could be attained and the brain power that could tackle, really tackle, this horrible disease.

Different perspectives are good.  Different perspectives shared in a room full of people with the same objective and the same open mind, working to solve a problem, even better.  How (and where?) does one find this ideal world?  We certainly don’t have it today – at least not when it comes to solving the Lyme disease problem we have.  When do all the voices get heard?  The synergy that could rock this epidemic world would be intense.  That would be not just great, it really would change the game.


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