*
Searcher, I am sorry you were taken for a ride. I hope you will post this experience on the lyme community as well, as it may help someone else avoid the same experience. Just a reminder, medicines should never be flushed down the toilet, as they contaminate the water supply, but I imagine you were speaking figuratively.
Yes, you should be careful of Lyme diagnosis and going down that road too far.
I suspected Lyme when I first had symptoms of my sca6 in 2012. Fortunately, I was discouraged of that possibility by my primary and other docs. and was set on the right path to a qualified neurologist. I am sure that I was saved years and a lot of money by that.
Find yourself a qualified neurologist and beware of the qwaks. Good luck.
How frustrating! As you know, I've been to the same neurology clinic at Yale as you. He ordered more blood tests and I'm scheduled for an EMG next month and a follow-up visit with the doctor. I mentioned Lyme's and he said if the tests didn't show anything, he saw an LP in my future. But when I researched LP for detection of Lymes, I found that it doesn't always show up in CSF. At least he didn't completely dismiss the possibility of Lymes, but it's early in the game.
I intended to see an LLMD, and went to the ILADS website for a referral. I only found one in CT, in Milford. The "doctor" you saw sounds extremely shady, especially if he billed himself as an MD when he's really a PA. I'm curious how you found him. If he's listed with ILADS, he should be reported! Hope your New Year is a better one.
Searcher, I am so sorry. It’s awful how there is always someone out there ready to take advantage of someone else’s suffering. I had genetic testing done and one of the things they found was LYME! How coincidental! Must be something with the Lyme characteristics and Ataxia. My Dr. At Mass General did not seem concerned when I confronted him about this he said they get a false positive with the Lyme frequently. I go to the Ataxia clinic there. They seem to have seen it all. Good luck to you.
Searcher, you inspired me to post drug disposal information on all of our community FB pages, so your discussion was useful in more ways than one: http://www.takebackyourmeds.org/what-you-can-do/medicine-disposal-myths-and-facts .
Searcher, I'm very sorry to hear about your bad experience. However, you really have NO RIGHT to say that most LLMDs are charlatans, unless you have visited hundreds of them. This is simply NOT true. I actually DO have chronic Lyme, and this IS the source of my ataxia. Does this mean that all people with ataxia have Lyme? No, of course not. But it is something that should be ruled out by a LLMD, because standard medical doctors DO NOT HAVE THE TRAINING TO MAKE THE DIAGNOSIS. That includes most Infectious Disease doctors, who have been brainwashed by the IDSA. I won't go into all of that right now, but it's a big problem.
Please don't label MOST LLMDs as charlatans when you don't actually know what you're talking about. Of course you can say that the person that you saw was a charlatan, but those that I have seen are NOT charlatans, rather conscientious doctors who are putting their medical licenses on the line by treating Lyme with long-term antibiotics. I was on abx for three years, and I am doing so much better now than before. I have less pain, my ataxia, vertigo, and other neuro symptoms have lessened as well. I am putting MY experience, and the experience of dozens of my friends in the Lyme community, up against yours, to prove that most LLMDs are just doing their best to alleviate suffering.
JoAnn, I have been following this issue for some time. Here is some context that supports Searcher's contention: http://www.sciencebasedmedicine.org/does-everybody-have-chronic-lym...
Testimonials are the weakest type of scientific evidence. In you own experience, we do not know whether your health is improved by the antibiotics or whether it improved for some other reason. This is why clinical trials are needed to establish what LLMDs assert. So far that has not happened.
Those who follow evidence-based medicine do not support the existence of chronic lyme disease; instead, chronic symptoms are ascribed to post-treatment lyme disease syndrome, which is not an active bacterial infection but a response to lyme treatment. LLMDs is a misnomer. Most are not in fact MDs and have less training than MDs do.
Most in fact, ARE MDs. The ones that I have visited certainly were. If testimonials are the weakest kind of evidence, surely we can summarily dismiss Searcher's contention. Which is based solely on his/her experience. You insult me by dismissing my experiences out of hand while accepting Searcher's because they fit your "beliefs". My contention is NOT based on my experiences alone. As a matter of fact, I have a PhD and was employed as a scientist for decades until my disabilities due to Lyme disease prevented me from continuing in my career. I have read hundreds of medical journal articles over the past few years since my diagnosis.
I do know that the abx made the difference, since all of the standard medical treatments had failed miserably and my health was deteriorating (I thought I was dying). I was in a wheelchair. I have been OUT of that wheelchair now for many months. This is a fact, not just "my testimonial". Instead of sneering at my experience, why don't you do a bit of research yourself; read this article AND the citations therein to see the other perspective. http://www.hindawi.com/journals/ipid/2010/876450/
I will not engage in a protracted debate with you on this topic. I know that there are biased forces at work in the medical community, biased due to financial interests based on research funding by large insurance companies. Those are the people who are fighting against the idea of chronic Lyme disease.
JoAnn O'Linger-Luscusk said:
Dancermom, most in fact, ARE MDs. The ones that I have visited certainly were. If testimonials are the weakest kind of evidence, surely we can summarily dismiss Searcher's contention. Which is based solely on his/her experience. You insult me by dismissing my experiences out of hand while accepting Searcher's because they fit your "beliefs". My contention is NOT based on my experiences alone. As a matter of fact, I have a PhD and was employed as a scientist for decades until my disabilities due to Lyme disease prevented me from continuing in my career. I have read hundreds of medical journal articles over the past few years since my diagnosis.
I do know that the abx made the difference, since all of the standard medical treatments had failed miserably and my health was deteriorating (I thought I was dying). I was in a wheelchair. I have been OUT of that wheelchair now for many months. This is a fact, not just "my testimonial". Instead of sneering at my experience, why don't you do a bit of research yourself; read this article AND the citations therein to see the other perspective. http://www.hindawi.com/journals/ipid/2010/876450/
I will not engage in a protracted debate with you on this topic. I know that there are biased forces at work in the medical community, biased due to financial interests based on research funding by large insurance companies. Those are the people who are fighting against the idea of chronic Lyme disease.
Dear Searcher, I'm so sorry this has happened to you! I live in Michigan and see a neurologist at the University of Michigan Hospital. Originally, when diagnosed with Sporadic Cerebellar Ataxia (idiopathic, unknown case) eleven years ago, I saw a different neurologist, as well as a team of neurologists who diagnosed me through the process of elimination (MRI, nerve/muscle test, tons of blood work, visual testing), as they were looking for other things like a brain tumor, stroke, MS, Myothenia Gravis, Parkinsons Disease, etc. My original neurologist retired a couple years ago, but my current one is equally as good (Dr. Vikram Shakkottai). Anyway, U of M has an excellant neuro dept. I realize you live in Connecticut, but if you ever consider going out of State for a diagnosis, please consider the University of Michigan's Department of Neurology. ;o)
Joann, I read the article. It misses the point entirely. No one is trying to deny the existence of long-term symptoms post-lyme. No one sneered at your experience, either, but it does not substitute for evidence-based clinical trials. However, there is a basic inconsistency in the belief that the medical community is somehow biased against chronic lyme because of financial interests, while simultaneously asserting that LLMDs who make thousands off of antibiotic treatments have pure motives.
As a scientist, you should be well aware of the post hoc ergo propter hoc logical fallacy. You are better, and you believe it is because of the antibiotics since you improved after taking them. However, by scientific standards, this does not amount to a "fact" and should not be presented as such.
JoAnn O'Linger-Luscusk said:
Searcher, I'm very sorry to hear about your bad experience. However, you really have NO RIGHT to say that most LLMDs are charlatans, unless you have visited hundreds of them. This is simply NOT true. I actually DO have chronic Lyme, and this IS the source of my ataxia. Does this mean that all people with ataxia have Lyme? No, of course not. But it is something that should be ruled out by a LLMD, because standard medical doctors DO NOT HAVE THE TRAINING TO MAKE THE DIAGNOSIS. That includes most Infectious Disease doctors, who have been brainwashed by the IDSA. I won't go into all of that right now, but it's a big problem.
Please don't label MOST LLMDs as charlatans when you don't actually know what you're talking about. Of course you can say that the person that you saw was a charlatan, but those that I have seen are NOT charlatans, rather conscientious doctors who are putting their medical licenses on the line by treating Lyme with long-term antibiotics. I was on abx for three years, and I am doing so much better now than before. I have less pain, my ataxia, vertigo, and other neuro symptoms have lessened as well. I am putting MY experience, and the experience of dozens of my friends in the Lyme community, up against yours, to prove that most LLMDs are just doing their best to alleviate suffering.
Absolutely agree with you. It is ridiculous that ONE bad experience with an incompetent alternative medical provider is somehow seen as " proof" that the entire disease and course of treatment is a big money grabbing fraud, while virtually everyone has stories to tell of incompetent or ineffective neurologists and main-stream treatment-- but that’s seen as normal! How on earth does that make sense?
Searcher, I’m sorry you had a bad experience. I live in a very highly documented Lyme area, and had a tick on me after a trip to the woods shortly before my symptoms started, so of course that is something my M.D. Suggested I be tested for. I had the basic screening and it came back negative. Months later I was seeing a new Doctor, who happens to be a LLMD ( not why I picked him ) he suggested I get the Igenex test, because he felt it was such a strong possibility for my symptoms. I got the test – and guess what, it was negative! So no antibiotics, no supplements – because that wasn’t the right diagnosis FOR ME. And my Doctor isn’t a money grubbing charlatan.
If one M.D. or neurologist wrote down the wrong thing, or gave you the wrong diagnosis or treatment plan or mixed up lab results, or pushed treatments that lined their pockets but didn’t help their patients — would you write off ALL doctors?
And the " anecdotal evidence isn’t real - unless it supports my agenda" drives me nuts. As does the whole " something is only real if their have been clinical trials" , umm,…what? No. Just no. A whole huge world exists out there, outside of the microcosmic of whatever the some medical association has decreed.
What does the LL stand for in LLMD, as I assume the MD stands for medical doctor?
rose said:
What does the LL stand for in LLMD, as I assume the MD stands for medical doctor?
Rose, it means Lyme Literate MD. I assumed that MD meant that the practioner was a doctor, but after reading Searcher's post and dancermom's links, it seems that PA's and lesser trained individuals are treating patients for Lymes. The person Searcher saw is listed on the ILAD's referral system as the only LLMD in CT, and I was planning to see him, in conjuction with my neurologist. Now, I'm going to pass.