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Post by LymeEnigma on Oct 25, 2007 7:09:57 GMT -8
I'm in rare form today. I'm in a significant amount of pain right now and of course I'm too stubborn to take the prescribed opioid ... my mood is currently in a strange place, so bear with me.
I have to wonder how it is that certain LLMDs have the ability to put the fear of God in most of us. I know that my biggest fear before speaking up was that, should I be completely open about my disillusionment, as well as all that I've found in my years of searching, I might make a bad name for myself with both the IDSA- camp and the Lyme-literate community ... and then, should I ever really need more treatment, I would have no one to turn to. Sadly, it's a valid concern, one over which I wouldn't judge anyone else for being acquiescent, despite my personal "screw it" attitude.
I find it disheartening nonetheless that few people in the Lyme-literate community are willing to admit the possibility that we have been lied to by many of the people we've been led to believe we can trust. No one seems to want to consider the possible wrongdoings of any big names, at least not openly. I know why ... but it's hard to stand back and watch, all the same. I'm not going to list names, go on and on about who worked in thingy enlargement before becoming a LLMD, who lied in a medical journal, or who lived in a multi-million dollar home while his/her patients were losing theirs and going bankrupt simply to pay for treatment ... but I will say this: I will not let my fear of continued illness alter my actions, silence me, or force me to turn my back to the truth, no matter how sick I get.
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Post by enochroot on Oct 25, 2007 12:40:05 GMT -8
Well said...I get a lot of "golddigger and quack" comments from the IDSA infectious guys I have seen. One especially, seemed to get emotional and vehement when discussing Lyme docs. But I noticed that Dr C has credentials from a place as prestigious and legit as any of these guys - NYU Medical, and did residency at Beth Israel in NYC - and he charges no more and actually LESS than some of these IDSA guys I have been to!
This is NOT to say there ain't quacks and golddiggers bilking desparate people over Lyme - I am sure there are.
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Post by enochroot on Oct 25, 2007 12:47:13 GMT -8
Doctors, as a breed, are egotistical and arrogant. Kind of need to be to get through all that (school and residency) as well as be willing to take responsibility for people's lives. I have noticed they tend to want to cut you loose if you challenge them on something or point out anything like an error on their part.
But then, we live in a country where people actually believe that dinosaurs co-existed with cavemen! So can ideology and ego driven disputes over Lyme be a surprise?
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Post by cobweb2 on Oct 25, 2007 17:39:28 GMT -8
" but I will say this: I will not let my fear of continued illness alter my actions, silence me, or force me to turn my back to the truth, no matter how sick I get. "
Please-what is the truth?
I have to confess-my fear of continued illness has kept me on a treatment plan which I sometimes think is the very thing making me ill- now.
Everytime I think of stopping though I remember where I came from -lost in this terrible place of knowing there was something terribly wrong-and getting worse. ..
Until I made it to an LLMD. But now I wonder. I know she doesn't have all the answers. What if I was well from Lyme six months ago-and now it's all just a body and mind trying to cope with a bombardment of medications.
What is the truth?
How often I imagine myself back to just plain old me-without any artificial anything-just my body with it's own defenses and immune system-working on its own.
How long would I survive? What is the truth?
Big Big Sigh, Carol
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Post by LymeEnigma on Oct 25, 2007 22:39:13 GMT -8
I believe: - For every great LLMD, there are several opportunists out there who will say or do anything to make a buck of off the desperately ill people and hypochondriacs alike.
- Out of desperation, too many patients are defending these people or turning their backs to huge misdoings, simply because they're afraid of losing anyone who is willing to treat chronic Lyme patients.
- In defending the wrong people, we make ourselves look the fools. I feel like I was personally taken for a ride by a couple of them, as well as their lackeys, and that kinda ticks me off.
- Chronic Lyme and post-Lyme both likely exist, and not enough is known about Lyme disease for anyone to be able to say anything definitively regarding the nature of the disease or the best approach to treatment.
- LLMDs who insist upon years of treatment might be just as wrong as ID docs who claim 28 days of doxy always does the trick. I have become wary of some of the research that indicates the former, given the fact that 1) the reliability and integrity of one or more of their doctors' research is questionable, and 2) there exist many "facts" in specific doctors' writings that either are not referenced or contain references that are "circular" in nature.
- The truth is in continued research....
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jeezld
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Post by jeezld on Oct 26, 2007 5:09:07 GMT -8
Carol,
I agree with all that you wrote. My son lost all his high school years; socially, emotionally, academically and in physical and mental health.
His neuropsychiatric testing showed a loss of 30 points on his IQ (from 127 to 97); from the high superior range when he was tested in elementary school, to low average when he was tested as part of the Lyme evaluation (Yale doctors).
We finally got him better on long term oral antibiotics and he had a successful freshman year away from home at college. This is nothing short of a miracle knowing where he had come from. After 20 months on meds the decision was made to stop them.
Within a few months some of the earliest symptoms crept back. I hated putting him back on antibiotics, especially because no one is sure if this is an active infection or post-Lyme syndrome.
However, we can't risk him losing his college years too. This is our best chance to get him started on a road to a normal life.
So I agree Carol, what is the truth? We have decided to go with what appears now to be the lesser of two evils. The thought of him going back to that insane, dysfunctional and tortured mess is too hard to bear.
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jeezld
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Post by jeezld on Oct 26, 2007 5:26:05 GMT -8
P.S. I'd go as far as to say I'd buy my son's antibiotics from a thug in a back alley if I had to in order to get them.
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Post by cobweb2 on Oct 26, 2007 5:49:22 GMT -8
You know how frustrating this is for me?
I cannot stand suspense-as in I cannot read a mystery novel without reading the end chapter when I am only about 1/3 way through.
A part of me just wants to WILL a vision of my future (or my children's)-so I will know how it all turns out. Then part of me thinks maybe I am better off now knowing what's ahead.
Which takes us back, as you said, to doing the best we can with what's right in front of us. If it's working-keep it up. If it's not-time to change course, or accept that this is as good as it gets.
We can only make decisions based on the information we have at the time--ain't that the truth!
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Post by LymeEnigma on Oct 26, 2007 8:23:56 GMT -8
I understand your desperation, jeezld; I just wish there were a way to make things "right," so that patients didn't have to resort to extremes just to get an antibiotic script. That's what gets me; I hate injustice, and I hate what's going on in the medical community right now.
I get the same frustrations, Cobby. It makes me want to do something to push for progress ... but what to do? I absolutely cannot stand not knowing, either....
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jeezld
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Post by jeezld on Oct 26, 2007 10:20:41 GMT -8
Here's the thing: our patient designated "LLMDs" live in fear too.
They have been bullied, humiliated, smeared and intimidated by their respected peers. They have been taken before medical boards. I read somewhere that the average cost to defend against a medical malpractice suit is over $250,000.
An IDSA ID doctor will send you on your way when you test negative, and if you are lucky enough to test CDC positive, then you'll get your 3-4 weeks of antibiotics. After that, since there is no such thing as chronic Lyme, you'll spend the rest of your life shuffling between specialists who will treat your symptoms: psychiatrists, rheumatologists, cardiologists, endocrinologists, GI, orthopedic, etc, etc, etc. until you die or give up hope of ever having a semi-normal life again. These IDSA MDs don't have to witness the long term decline of their Lyme patients (because they don't have Lyme), they just pass them along.
The front line doctors that choose to treat us Lymies know that in many cases their Lyme patients respond positively to long-term antibiotics. They see what is really happening clinically, "on the street." These physicians need to publish papers about this reality, but they live in fear of being targets, so they don't. Perhaps it is only those that have already been smeared that no longer give a damn and are front stage.
Think about how many great people will never run for public office because of the public scrutiny of their lives where every rock from their past gets turned over and fairly or unfairly presented. For an opponent the best defense is always a good offense. And the IDSA folks have the clout and connections to pull off a great offense against those that differ in clinical experience and opinions.
As patients we shouldn't look the other way when a doctor is clearly abusing a patient's situation, but we also shouldn't buy hook-line-and-sinker smear campaigns that serve as warnings to others who might offer up some differing truth.
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Post by LymeEnigma on Oct 27, 2007 8:17:04 GMT -8
It is unfortunate, but it is because of doctors like Dr. S, Dr. J. (the other one), Dr. E., and a few others that ALL LLMDs are under scrutiny. It is because we back those who we know could be misleading or cheating their patients that all others willing to treat beyond IDSA guidelines live in fear ... because they all get lumped together in the IDSA's eyes, and the wrongdoings of a few end up leaving a black smear on all of them ... and on us, as a community. It's a no-win situation for all of us, and just makes it harder in the long run for those of us who need continued treatment to find someone competent who is willing to help. I believe we are doing the Lyme community a disservice by backing these less than desirable characters; if more Lyme-literates were on the up and up, I guarantee you we would not have the problems we currently have and the IDSA wouldn't be nearly as hard on the rest of them.
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jeezld
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Post by jeezld on Oct 27, 2007 8:45:29 GMT -8
I think that the IDSA and the Yale gang began their attacks from early on in this treatment controversy, and would still be attacking those that openly and publicly disagree with their "findings" -- regardless of the few bad eggs.
I really don't think their agenda is driven by the motivation to protect Lyme patients. If it was there would be more long-term studies, more research, less weight given to unreliable tests and more accurate reporting of the numbers of those that meet CDC positive criteria.
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Post by LymeEnigma on Oct 27, 2007 8:49:10 GMT -8
But the bad eggs make our entire situation look rotten ... and you have to consider some of the first docs to jump on this. Have you ever read anything by Dr. B, for example, that is fully referenced?
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jeezld
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Post by jeezld on Oct 27, 2007 9:00:31 GMT -8
I have not analyzed the references to his studies, but the sheer number of patients that he has treated with Lyme disease in his practice and followed over the decades must surely count for something, unlike what has happened in the ivy covered towers of the ole boy's club.
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Post by cobweb2 on Oct 27, 2007 17:45:29 GMT -8
What makes an LLMD LL? Is it a special degree? or is it simply independent studY? or is it just because they are willing to treat Lyme Patients? Where do they get their information? From each other? From the field? What sets them apart from MD's-besides the obvious-like they treat lyme longterm>
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