PeteD said:
I empathize with your plight, but I disagree strongly with your characterization of these doctors as jerks and quacks with such a broad brush. Many of these doctors are very good and do not take insurance because it is the insurance companies that helped to initiate the lawsuits to have licenses pulled for treatments that they do not want to pay for, because the CDC does not deem the treatment appropriate. The CDC says two weeks of oral antibiotics and you are cured. That is BS if you have had Lyme for years. I know someone who went to one of the doctors in the film after conventional treatments failed (and payed from their own pocket). After conventional treatment with antibiotics failed, they were diagnosed with MS (in fact were already taking daily steroid injections to treat MS). After long-term (6-months) treatment with IV antibiotics, they are now asymptomatic.
Keep in mind that most cutting edge doctors and scientists in history have been called quacks in the beginning for disagreeing with the conventional wisdom.
Also, this "cult" would not have developed if the CDC would open their eyes to the possibility that Lyme can't always be cured with 2 weeks of oral antibiotics. Are there people who do not have Lyme chasing LLMD in hopes of solving another medical problem that medicine can't resolve? I am certain that is the case. But that doesn't help people who do have Lyme but do not deserve further treatment according to the CDC.
BTW, Cure Unknown is a better choice than the movie, IMO.
Pete,
Maybe I should not have worded my post quite that way. What I meant is that many of these docs are exploiting the situation for their own gain, not all or maybe not even most. The insurance thing...? Well, all I can say is the big name Lyme doc in my area wants $1000 from you just to walk through his door. Even a Lyme-friendly insurance company would never pay that kind of dough for a consult, or for any kind of consult I can think of in any specialty. The world-class eye trauma surgeon that restored the sight in my right eye three years ago gave me a free initial consult, and then went out of his way to accept my insurance, even though he was down in Philly and
way out of our network. He felt bad that I had to go all the way to Philly to find a doc that could do the operation. I paid a total of $175 for a $12,000 operation. How much he got from my insurance I'll never know, but I am pretty sure it was well short of $12K. When I went for my follow up the next day, he told me that as far as that eye was concerned, I was his patient for life.
Six months later I went back down because I was having a very serious problem in the same eye. He made room for me in his busy surgical schedule, I was examined, diagnosed, given sample medications and scripts for three months and I never even saw a bill. Similar compassion is sorely lacking everywhere I look in Lyme treatment. I have been repeatedly told that the waiting list to see Dr. "X" is 12 months, at which point BTW I will be very, very ill if they are correct, and will therefore actually require their treatment for chronic Lyme. Not one of them made a referral to another Lyme doc, or even hinted that there was anyone else. Even a local nurse practitioner wants almost $400 for the initial Lyme visit (again, no insurance)... and that doesn't even include testing. How is it that an NP gets to charge that kind of money for a Lyme consult when a cardiologist with 30 years experience doesn't?
I have been spending a lot of time on a few of the Lyme support forums, and some of the things I read that people are being advised to do makes my jaw drop. There are people who have been treated for years on high-dose IV drugs (delivered via central catheters because of their caustic nature), for symptoms that have never actually been observed by the physician and have been only anecdotally described by the patient. As their conditions continue to worsen, they are being advised to
step up the treatments rather than to seek other possible explanations for their sickness. There are doctors out there ascribing virtually every disease known to mankind to untraceable tick-borne infections, totally disregarding the well-known and long-accepted epidemiology of these diseases (i.e. ALS being described to patients as actually being Lyme, even though the incidence of Lyme is growing exponentially while the incidence of ALS has been at a constant for nearly fifty years).
Even some of the best intentioned Lyme docs are forced to shoot in the dark a lot of the time, trying one treatment regimen after another based strictly on observation and intuition. This is medieval medicine, not cutting edge science. No, it is not entirely their fault. It is the politics of medicine, and the megalomania of guys like Steere who just can't admit they got it so wrong 30 years ago. IMO the most telling problem in this whole fiasco was covered in the movie by a comment from Willy Burgdorfer, the discoverer of the borrelia spirochete that bears his name:
"The [research] money goes to the same people who have, for the last 30 years, produced the same thing... nothing."
This was why I left medical research after a very short time period in the field. It was immediately obvious to me that there was plenty of money being spent on research, but nothing close to cures being delivered. The same pointless projects were being funded over and over again while much more promising work was routinely being denied. The biggest egos made the biggest sounds and got the biggest share of the pie. I worked for just such a megalomaniac, so I have a clue about the whole issue.
BTW, I found a copy of the book "Cure Unknown" at my local library and have reserved it for tomorrow.
