I went 16+ years seeing really good MDs, alternative specialists, being misdiagnosed and being blamed for my sx (too much stress, too much work, not enough sleep) crashing and doing really well. It was a hectic roller coaster.
I finally got realy sick and started doing my own research... finally got myself to a Lyme specialist, got tested and got diagnosed. I was one of the lucky ones - I had a CDC positive test, the holy grail.
But like you, I had tons of questions and angst and anger because of the controversy, which I didn't understand. So I set to learn about
it - like others have posted. In order to understand your diagnosis, and why some MDs will misdiagnose, and which information is more reliable to you and why, you have to understand what the controversy is all about
In a nutshell, the following are the main reasons for the controversy:
Early, narrow definition
Early in the 70s, a group of kids in a small town in CT (Lyme) were developing arthritic condition, which was referred to as juvenile arthritis, but the numbers of kids in such a small geographic area were extremely rare. A rheumatologist was contacted and eventually began studying the cases. Eventually, the cases were diagnosed as being caused by a pathogen we now know as Lyme or borrelia Burgdorferi.
The subsequent science that followed was based on these cases and the specific symptoms that developed. And this pattern snowballed into medical treatment protocols and information used to educate the medical community about
how to diagnose and treat the infection, including specific science that was used to develop testing methodologies and eventually the pharmaceutical industry used the same science to develop vaccines.
That's in entire industry based on a specific definition of what a Lyme infection is, how to diagnose and treat it.
A secondary, broader definition
The trouble is, other people began developing similar symptoms but broader symptoms and soon, the original model used in the early definition began to fail diagnosis, testing, treatment for these people. And thus, other science developed with respect to these variables, and while the same microbe was attributed to these infections, the illness manifested differently.
And the two groups grew more and more disparate and entrenched in their "correct" science. But only the first group had a foothold into the .gov system, again, well-connected and were easy to control the public version of what Lyme is and isn't.
Some blame the financial ties the early scientists, researchers, government officials, etc., to the early definition behind the testing, vaccine, etc. Of course, these financial interests weren't understood until this past decade.
Some blame the academic ego and stranglehold the early researchers had on the discovery and the early definition and subsequent rights-to-claim, etc.
Some blame ties to the development of the Borrelia microbe as a bioweapon.
Some blame the horrifying dysfunction of the .gov and CDC and NIH and possible military influence, Big Pharma influence.
And some wonder if the problems or coercion was able to fly under the radar for so long - long enough to become the immeasurable mess it is today because it was simply a typically stumbling area of research that no one really cared about
because it was predominantly considered a wealthy community problem.
Regardless, the sources of all these differences of opinion lie rooted in a condition of very narrow definition of an infection that manifests itself simply with a perfect bulls-eye rash and arthritis, and one that manifests in many, many other ways. There is plenty of research from each side.
What I suggest to people is - if your illness falls into the first category of a narrower definition, then feel free to seek out like-minded specialists. If not, you'll need to seek a specialist that follows the second.
The first group is not necessarily wrong for some people, it's just not comprehensive for today's reality and many, many other people. It's like the logic statement: all apples are fruit, but not all fruit are apples. The second, broader definition of Lyme infection is what helps diagnose and treat the majority of people suffering from Lyme.
Hope that's more helpful.
Post Edited (Pirouette) : 5/1/2017 7:12:44 PM (GMT-6)