Virginia Lyme bill

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
Camp Other
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Re: Virginia Lyme bill

Post by Camp Other » Sat 23 Mar 2013 22:43

Bagge wrote: Oh, please! This is unbelievable. Talk about witch hunts and stalking and persecutions. If anyone doesn't like the way Steere named or dealt with his own research, then they should do their own.
That's a rather strong reaction when all I pointed out was that he focuses on the arthritic aspect of Lyme disease and has had a history of not discussing neurological symptoms. Are you disputing that he has done so? So far, I've had no indication of that. I've only seen you state as a rheumatologist he should be expected to emphasize the rheumatological aspects of the disease. I pointed out that I did not disagree with you on that specific point, but that the issue was since he was FIRST and he played a huge historical role in the disease's discovery and naming of it, he has been given a fair amount of weight in defining the disease.

I didn't name call, engage in an ad hominem attack or persecute Steere in any way. I may have some objections about the way he has characterized the disease, and I have stated that. There are researchers and doctors who may have similar objections - including ones from Europe. Just offering any sort of criticism shouldn't have to lead to charges that one is engaging in a witch hunt of some sort.

You know Bagge, give others some latitude here to share their opinion without it automatically becoming a charge of conducting a witch hunt and engaging in persecution by those who disagree. Sometimes people just disagree. And that's how it is.
Bagge wrote: Nothing is stopping you, and don't try to claim that you (Lymeland) doesn't have the money or the influence. Go get Mercola to donate more money, or Ornish or any number of people in India and Brazil and Germany and lest we not forget Ecuador, FAIM and that other 'group' that starts with a "M".
Me= Lymeland? Don't try to claim that I don't have the money or the influence? Do you have any idea what my situation actually is, Bagge? You really haven't read previous posts I've addressed to you in the past nor my blog and actually absorbed what I said, have you? So let's try it again: Bagge, I've been too sick to work, lost my last job years ago, and am broke. I have thousands of dollars in medical debt I can't pay. So NO, I am not in any condition, healthwise or financially, to do research on Lyme disease.

As for the rest... Mercola, Ornish, FAIM... You know I don't buy into the medical opinions of those guys so I think you are just trying to get a rise out of me. No one reading along believes for a moment I would ask for money from those guys.
Bagge wrote: This is this epitome of "Hell hath no fury like a woman scorned", except that it is mostly a bunch of women, and McDonald. Get over it and do your own research. There are universities all over the country. Go to college, get an education, beg for grant money and financial backers, open your own practice and research lab, and stop blaming a medical STUDENT for something he did decades ago. He has a successful career. If you don't like his research, and you don't like his or anyone else's advise then do your own research to refute it. Where the heck is Polly Murray, yet another artist is she? Why didn't she go to medical school if she has such a problem with him? People are latching onto him and few others worse than any tick or rabid animal that I've ever seen.
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I already have a degree, worked in research, and got sick. You should know my situation. When I am well enough, I fully intend to address the Lyme disease situation in a way which is compatible with my skills, education, experience, and oh, not risking ruining my health further.

I'm not blaming a medical student for something he did decades ago. I'm looking at the entire trajectory and what is being done NOW. Steere has a successful career in rheumatology and fine, stick to rheumatology if that's working for you - it covers spondylitis, osteoarthritis, psoriatic arthritis, and a wide range of rheumatic conditions. He can have them. All I stated was that the diagnosis and definition of Lyme disease isn't his alone, but because of its history, the rheumatological aspect was overemphasized early on. Some self-correcting is, in my opinion, needed there. And other researchers have been working on mentioning those other symptoms as they have published their work on Lyme disease. It just doesn't stick in family doctor's heads, though, as much a rash/flu/knee does.

I fully support these other researchers in their mention of additional symptoms and investigation into the neurological and cognitive effects of Lyme disease on patients. I can't do the research, so I applaud their efforts and if I had money, I would give it to organizations like the NRFTD or maybe to LRA for VGV-L.

As for Ms. Murray... Far as I know, she continues to create art and live her life as fully as she can. People do what they're good at. And just because someone like her has a complaint about someone else and how they do their job doesn't mean they should work hard to do their job better or replace them. The party at whom the criticism is directed should reflect on criticism and consider a change of course in their action - rather than their replacement. Hell, I have some criticism about President Obama's policies but that doesn't mean I want to be President - I want him to consider how his policies have an impact on people, acknowledge them, and work to change his policies. At least I get to vote for Presidents and Governors and have some say in bills and petitions.

Bagge
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Re: Virginia Lyme bill

Post by Bagge » Sat 23 Mar 2013 22:54

duncan wrote::shock:

Can you believe some people find misogyny offensive? I suspect the head of the NIH's Lyme research might.

You're on a roll, Bagge - please don't stop now.
She has a reputable position. She has a legitimate medical/science degree and works for a respectable institution, and when appropriate her work is presented to her peers for review. There is nothing unethical or offensive in that. In fact, people like her should be viewed as role models for others to follow.

What is she not doing? She's not refusing to associate with any medical institutions other than those led by "LLMDs". She does not refuse to present her research for peer review. She has not committed research fraud. She has not been convicted of sexually assaulting any patients. She does not sell any designer home-grown Lyme treatments, not even under her own name. One would presume she does not support the use of homeopathy for the treatment of infectious diseases. She likely would be stumped if you asked her to discuss the science behind the muscle test for Lyme disease, knowing nothing about it. One would doubt that she treats patients with whom she has never laid eyes on or spoken. I bet she's never referred a patient to John of God or the like.

Anyone that doubts the background to the Virginia Lyme disease law, including the failed "LLMD protection bill" of 2010, should investigate the medical practices of the Virginia-based "LLMDs" as well as the "LLMDs" on the referral listing for Virginia-based patients.

Some of the activists fighting for passage of those laws promote the following practices and treatments. Here's some more questions.

If a patient's condition responds to Kangen water, were they really suffering from an infection with Lyme disease?

If a patient claims to have a reaction to Kangen water, was it really a Jarisch-Herxheimer reaction, and does that really prove they had Lyme disease?

What about ASEA water? Would a reaction to that be considered as a Jarisch-Herxheimer reaction, and thus prove the patient had Lyme disease?

Healing sessions via a telephone chat or conference line, otherwise known as distance healing? If someone's condition responds to that, did they really have Lyme disease?

Where is the evidence that an infectious disease can be eliminated with dousing? acupuncture? chiropractic? homeopathy?

Is it within the scope of practice for an acupuncturist to diagnose and treat infectious diseases? a chiropractor?

Why do doctors who testify to the Legislature state that they are seriously ill with chronic Lyme disease, but then go on YouTube and present themselves as otherwise?

How is it that a medical organization that purports to be experts in infectious diseases supports those who do surgery on infants in a non-sterile environment for purely religious reasons?

Investigate the practices of the "LLMDs". See the treatments they are offering. Evidence the science behind those treatments. While you're at it, make sure they're not still taking kickbacks, or doing any unethical videotaping.
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Lorima
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Re: Virginia Lyme bill

Post by Lorima » Sat 23 Mar 2013 23:50

Bagge,
Your "man of the people" voice is slipping. All of a sudden, you sound educated and grammatical (though not exactly cultured in other ways). Clearly something hit a nerve. But you really should keep your mask intact. Otherwise there are no "patients" here who defend the IDSA et al., and express unmitigated outrage at all "LLMDs".
"I have to understand the world, you see."
Richard Feynman

Camp Other
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Re: Virginia Lyme bill

Post by Camp Other » Sun 24 Mar 2013 0:07

One more thing, Bagge:

If you don't like the way some LLMDs are handling diagnosing and treating patients, are failing to do the research to help chronic Lyme disease patients, are supporting pseudoscience, and are engaging in egregious behavior, then why don't YOU work hard to go to medical school, become PI of your own team and conduct your own research that actually helps chronic Lyme disease/post Lyme disease patients, create an educational and helpful patient advocacy web site and organization which supports science and informs patients and the public about tickborne diseases, and engage in behavior which is supportive, compassionate, and helpful to patients?

phyfe
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Re: Virginia Lyme bill

Post by phyfe » Sun 24 Mar 2013 18:29

Lorima wrote:Bagge,
Your "man of the people" voice is slipping. All of a sudden, you sound educated and grammatical (though not exactly cultured in other ways). Clearly something hit a nerve. But you really should keep your mask intact. Otherwise there are no "patients" here who defend the IDSA et al., and express unmitigated outrage at all "LLMDs".
Yeah, like maybe he's Steere in disguise?..."me thinks though doth protest too much". :roll:

Lorima
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Re: Virginia Lyme bill

Post by Lorima » Sun 24 Mar 2013 23:32

Probably not Steere; I'd speculate, some lower-level minion with a taste for fiction-writing, and no full-time job. Unless this is it. ;)
"I have to understand the world, you see."
Richard Feynman

edbo
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Re: Virginia Lyme bill

Post by edbo » Sun 24 Mar 2013 23:54

Lorima wrote:Probably not Steere; I'd speculate, some lower-level minion with a taste for fiction-writing, and no full-time job. Unless this is it. ;)
Hahaha, I love your posts, Lorima!

We really need that voting system. :)

migs
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Re: Virginia Lyme bill

Post by migs » Mon 25 Mar 2013 19:13

Camp Other, I just spent half an hour typing to you and lost it so sorry for short reply.

I do agree with you on ALMOST everything. I was joking about the threat. As for Steere being a leader, he is, whether Lyme patients want him to be or not. Imagine a few letters/publications to the New England Journal of Medicine admitting some shortcoming is testing and treating Lyme. the IDSA, Ivy League schools and older pathways filter change through the entire system. It could literally make the diffference between being diagnosed and treated from the day you walk into a doctor's office or walking that sick and lonely road.

Lyme Disease is very real on the West Coast. I can personally attest to that and I know several other local clear cases that have not been cured with IDSA guidelines...or even close to cured. My frustration is with a group of people that I have met with extensively and don't believe to have anything resembling a Lyme infection. They seem to eclipse the real patients and give the medical community something to lump us all into. I admit some of their media coverage and awareness is helpful...double edge sword I guess.

I have a load of respect for the good LLMDs out there. What I mean to express is that, as a patient, a good LLMD is a real life hero that gives you life. As a partisan on the other side, there is enough questionable practices out there to give them ammunition for disrepect.

Yes a third party broker would be great. Ego must be pushed aside. Too many are suffering.

My last comments were to say that just because I believe you can be well intentioned, doesn't mean you are getting it right. I completely disagre with some of Dr. Steere's theories on Lyme but I do think that he believes he is righteous.

Bagge
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Re: Virginia Lyme bill

Post by Bagge » Tue 26 Mar 2013 22:14

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A little sanity in Virginia:

http://www.connectionnewspapers.com/new ... e-disease/
To the Editor:

The letter applauding the Lyme disease bill ("On Lyme Disease Awareness Bill," Connection, March 20-26, 2013) may make its advocacy group happy, but does not live up to what Virginians deserve. And while well intended, this solution is simplistic and rife with potential for confusion and dangerous consequences. Simply, it requires that physicians give patients a piece of paper that states that Lyme disease lab tests may not be accurate. It mandates that this be done for five years, regardless of changes and accuracy of new tests as they become available. This was not a solution the medical community supported and the four physician legislators at the GA voted against this bill. Many lab tests are not precise and need to be interpreted carefully, with an awareness of what is being evaluated. Giving someone a piece of paper will do more to confuse than enlighten and may delay correct diagnosis, create an inappropriate demand for dangerous treatments, and open the door for an untrained and unlicensed legislature to further codify mandates that alter scientifically developed medical care and to try to impose themselves on the patient-physician relationship. It is unfortunate that this prevented them accepting a substitute bill that missioned our public health infrastructure with increasing professional and citizen awareness, education and on-line resources about Lyme disease, a much more fruitful and logical alternative.

This law is a “victory” for an advocacy group and their sympathetic legislators who want to do something to help, but it has limited benefit with a significant downside. Lyme disease is not a new problem and will continue to be an issue for years to come. Education, research and a better approach to controlling the vectors that spread disease are what need the focus and the support of our legislators.

Russell C. Libby, M.D., F.A.A.P.

President, Medical Society of Virginia
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Camp Other
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Re: Virginia Lyme bill

Post by Camp Other » Wed 27 Mar 2013 0:37

migs wrote:Camp Other, I just spent half an hour typing to you and lost it so sorry for short reply.
That sucks. Sorry to hear it.
migs wrote: I do agree with you on ALMOST everything. I was joking about the threat. As for Steere being a leader, he is, whether Lyme patients want him to be or not. Imagine a few letters/publications to the New England Journal of Medicine admitting some shortcoming is testing and treating Lyme.
Steere does know a lot about the rheumatological aspects of Lyme disease. Whether anyone wants him to be a leader or not, his knowledge in this area will always be in demand. It's just his work has very little direct positive impact on me so far, and some of the presentations he's done for the APC can have a negative on all patients with chronic Lyme disease. I wish his attitude about patients wasn't so negative - but then there is history involved there.

What makes you think people haven't sent a few letters or publications to the NEJM about Lyme disease? They have. There, and to many journals including the BMJ's rapid response system (which I recommend checking out sometime in regards to Lyme disease; one can see the controversy splashed up there in stark relief).

Writing letters get one's ideas out there, but it doesn't generally change anything from what I've observed. More concrete steps have to be taken if one wants to effect change - that and a overwhelming tide of evidence.
migs wrote: the IDSA, Ivy League schools and older pathways filter change through the entire system. It could literally make the diffference between being diagnosed and treated from the day you walk into a doctor's office or walking that sick and lonely road.
I'm not sure what you're suggesting here. I think one of the actions which could help people the most is prevention, and a thorough education of family doctors in vectorborne diseases, Lyme disease among them. Based on a lot of research I've been reading, the spread of certain diseases is going to mean doctors having to suspect diagnoses they used to not see - more cases of West Nile Virus, dengue fever in the southern US, a variety of tickborne illnesses including babesiosis. It's not just going to be about Lyme. Not everything is Lyme.
migs wrote: Lyme Disease is very real on the West Coast. I can personally attest to that and I know several other local clear cases that have not been cured with IDSA guidelines...or even close to cured.
I know Lyme disease is very real on the West Coast. Dr. Robert Lane and others have done a fair amount of flagging around California and found endemic areas for Lyme disease. It tends to not get as extensive because of the western fence lizard being part of the cycle, but also because of other environmental factors such as dry summers.
migs wrote: My frustration is with a group of people that I have met with extensively and don't believe to have anything resembling a Lyme infection.
I share your frustration, and I'm not sure what to do about it. I eventually did get a diagnosis for Lyme disease and I did have a history of tick bite and an EM rash. I know what my situation is, and the strength of the evidence supporting my case. It was pretty textbook.

This is a different situation from other people I've met online and off have said they suspect they have Lyme disease, but they don't have any history of a tick bite or rash. They have some symptoms which might overlap with mine, but they seemed to have never had a lot of the early ones or more prominent ones. They can't tell if they have it and have never seen a doctor and try to self-treat something they aren't even sure they have.

I try to encourage them to get checked out for other conditions, but some of them seem intent on their self-diagnosis.
I tell them, "Look, you don't want this - especially the chronic symptoms. If there is a chance you have something else and it is easily treated, you really ought to look into it." I'm hopeful for them that there is something else going on and it won't be persistent if another answer is found.

Now, they might be right, and they might have Lyme disease. In which case, they still ought to see some doctor, get treated, and make sure they don't have other problems which interfere with their getting better including coinfections.
But in the meantime... I can't really do anything more than be supportive after I've said my piece if they really think they have Lyme without further investigation. Well, either be supportive in a general sense or withdraw - those are the only two choices I have.
migs wrote: They seem to eclipse the real patients and give the medical community something to lump us all into. I admit some of their media coverage and awareness is helpful...double edge sword I guess.
I think the situation has gotten rather messy. There are some people who have a constellation of symptoms who suspect they have Lyme disease but they've never been diagnosed with it and they self-treat, often with herbs. Do they have it or not? It's not my place to say - a doctor needs to see them. There some people who have symptoms and a history of tick bite, they might have had an EM or not - but they didn't get treated early on. There are some people who got a rash and never got a positive blood test, and some doctors wonder if they had Lyme disease... It goes on. But basically, there are a number of subgroups here and it takes some sleuthing to sort out who had what when.

Some people may have only gotten coinfections and not Lyme. It happens. And once in a while, someone will get a non-Lyme Borrelia infection and pull a negative test. What do we do with that person? Obviously they aren't suffering from Lyme disease, and they can't participate in a clinical study on Lyme disease. They have something else.

I think media coverage that focuses on prevention is great because they seldom get that message wrong. Those who are science journalists can tackle more involved and complex issues around tickborne illnesses can write about them without munging the data much. But there is a point where the issues get really complicated and only a few people can write about those with precision, and it's those issues which are most likely to get munged by most people writing about them.
migs wrote: I have a load of respect for the good LLMDs out there. What I mean to express is that, as a patient, a good LLMD is a real life hero that gives you life. As a partisan on the other side, there is enough questionable practices out there to give them ammunition for disrepect.
A really good LLMD is a person who is educated, experienced, honest, will tell patients treatment pros and cons, knows the limits of his expertise, and is willing to refer patients out for further testing by specialists to do rule-outs (neurologists, rheumatologists, immunologists). A really good LLMD won't make outrageous promises or claims, will tell you what is essential for your treatment, and will not do a hard sell for more. And I think that's a pretty good place to start.

On the other hand, you're correct - there are questionable practices and doctors and self-proclaimed experts out there who do things which, unfortunately, cast a negative light on those LLMDs who are trying to do a good job. It irritates the hell out of me, especially when it comes to having a condition which is already controversial in itself. The negative feedback just brings the overall credibility level down for patients who suffer with persisting symptoms.
migs wrote: Yes a third party broker would be great. Ego must be pushed aside. Too many are suffering.
Yep.
migs wrote: My last comments were to say that just because I believe you can be well intentioned, doesn't mean you are getting it right. I completely disagre with some of Dr. Steere's theories on Lyme but I do think that he believes he is righteous.
A lot of people have good intentions and believe what they are doing is right in regards to their medical practices and beliefs about Lyme disease. As a patient, I want to make sure I don't get too caught up about what they believe and get as much evidence as I can that they have sound ideas about diagnosis and treatment of someone in my situation.

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