Alfers, I give you a lot of credit for being a moderator. I certainly understand that this position isn't easy and it's really a thankless job, for which you don't get paid. It sure isn't something I'd be willing to take on, especially at this point in my life. If it weren't for moderators on all these forums, the forums wouldn't exist.
Nevertheless, I do disagree with your position.
Tissue biopsies to prove the existence of chronic lyme should not be a standard we should strive towards. Unlike lupus, where skin, liver and kidney biopsies are performed to confirm diagnosis, and more importantly, to assess the degree of disease severity, tissue biopsies for lyme disease would necessarily be much more invasive, as the spirochetes are found in the brain, heart, bladder and other internal organs that essentially rule out routine biopsy.
With the knowledge, research and literature that we have in 2008, why should anyone who has Chronic Lyme Disease have to subject themselves to an invasive procedure to "prove" his/her diagnosis of Chronic Lyme Disease? Why on earth are clinical diagnoses of Chronic Lyme being held to such extreme scrutiny? The vast majority of LLMDs treating those with Chronic Lyme aren't a bunch of kooks. They've had traditional medical school training. No one would blink if a doc prescribed tetracycline for a year to a kid with acne. Yet, a sick kid with lyme is "lucky" to get 2 or 3 weeks' worth. Something is so very, very wrong.
Maybe I did "misread" your post. But it sounded to me like you were defending doctors for being ignorant. Lyme is pandemic. WE all know that. Why is it OK to let physicians who surely see patients with symptoms that could be due to Lyme and coinfections, off the hook?
I am a mother of two sick kids, one of whom is doing very well (not sick too long) and the other, who has been struggling every day for the past two years to regain her health. She has lost much of what should have been the best years of her life.
So from where I sit, ignorance might be bliss, but its not an excuse. I don't think that all doctors who don't "believe in" (aka: understand) Chronic Lyme are bad people who are money-hungry. I just believe they are uneducated at best and unwilling to listen or understand at worst. I just can't for the life of me comprehend how those same doctors can so easily accept and believe in the moronic concept of "post-lyme syndrome."
Reality trumps ivory tower academia any day.
I'd bet you any amount of money that if one of these doctors' kids was so sick s/he couldn't life his/her head off a pillow, these same doctors would err on the side of caution and extend that "curative" 2 or 3 weeks of doxycycline or whichever antibiotic far beyond what the corrupted IDSA "Lyme Doctors" recommend.
I have bought copies of "Cure Unknown" and distributed them to our pediatrician, my own doc, and other people in my community. I have distributed literature to the school district "big guns" as well as teachers and guidance counselors. I have sent links about lyme disease to many of my friends and family. I ultimately hope to have a screening of Under Our Skin in our community, as so many in my area are affected.
Since you have friends who are MDs, I would encourage you to do the same and be more "in their face" about this. This is what you're living through, afterall. If these "friends" are really true friends, they should be open and willing to hear the reality of Chronic Lyme. Maybe you can give them a copy of Cure Unknown and send them a link to an Under Our Skin trailer.
The unfortunate reality of Chronic Lyme Disease is that eventhough you are a sick person, you must advocate and spread the word in your community. Because if you don't, who will?
I realize that you might not be a parent of sick kids and are perhaps less jaded and more forgiving. I remember when I was like that during my own struggles with illness (long story).
And, about those hours of reading those docs do, I highly doubt they'd even come close to the amount of reading and researching that you, me and countless others do on a daily basis.
I think the vast majority of people on this board and others are extremely focused on getting better and exploring any and all treatment options. At the same time, we must hold accountable and keep in mind those whose mission it is to thwart and discount such endeavors.
Lastly, your personal opinion most certainly does matter, as does everyone else's on this site. No one could offer support if we didn't have our own opinions, which are formed by our experiences.