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 » Sun 14 Apr 2013 1:21

radicale wrote:
The answer is obvious. What is the point of repeating this dribble? Who are you trying to convince? If the government was regulating medicine in a proper manner, homoeopathy would only be allowed for entertainment purposes.
Bagge wrote: The point is that the same activists, and the same 'medical' societies and patient associations who are fighting to pass these types of inappropriate laws are the same as those promoting the advancement and protection of the providers who use homeopathy, as well as those who diagnose and treat patients using muscle testing. The same providers, here's one featured in the film. Research the practices of the providers on the patient referral lists. It is those providers they are trying to protect; the one's selling the snake oil. Until there is science on Applied Kinesology and muscle testing, it should be called snake oil.

Educate, don't protect those selling snake oil. These laws do nothing to educate. This educates, and this, and this, and they are written by real experts in the field, not legislators who are not qualified to make such decisions. This is a misuse of legislation. Matters of medicine and science must not be decided by legislation, but by scientists and medical experts.
.
radicale wrote: This is how things should work when the scientists and MDs base guidelines on the best available science, without bias. When it does, the quacks disappear and I would like nothing more than this to be the reality.
I agree. One of my concerns is that guidelines are not based on the best available science, and also that the best available science is limited in what it can tell us about pathogenesis and the disease process in Lyme disease (and concurrent coinfections).

I also think that the 2006 guidelines not only need to be updated to reflect scientific research that's been completed since 2000 (which the guidelines mainly are a copy of the 2000 guidelines) but clinical experience doctors have had since their publication.

Even without those updates, though, I hope that anyone can look at the outcome of a number of the treatment studies for late stage Lyme disease which were cited in the 2006 guidelines and see that there is and has been a problem: A good third of patients are still sick after initial treatment, and some patients show no improvement and are recorded as having relapsed.
radicale wrote: The Lyme Disease field has been paralysed for more than a decade. Myself and a few other members of this forum were mis-diagnosed because the MDs were not competent enough to make a clinical diagnosis and the tests used the incorrect strain (NA when they should have been European). As a result, an opportunity for the quacks to take advantage of us was generated.
I know in my situation the doctor misdiagnosed an obvious EM rash. I even had the tick and it could have been tested for presence of infection - and instead, the doctor threw it out. I consider that not only unprofessional behavior, but unscientific behavior. They threw away what would have been useful data!

The follow-up doctor who saw me also should have known that testing me too early could result in a negative test, and even if it was negative, that doctor should have re-tested me weeks later. They did not.

This is one of the reasons why I supported what's stated in the Virginia bill. I didn't support it because some people who practiced pseudoscience supported it. I supported it for the basic reason that my doctor did not do his job.

Outside of this, I do think that a broader doctor education (more CME credits for tickborne diseases with not just most common presentations taught) and public prevention program was needed and continues to be needed. That and to encourage doctors to treat early and treat thoroughly when they do, and retest for coinfections if the patient continues to be ill. Global warming and climate change put the spread of tickborne diseases outside of Lyme disease on the doctor's doorsteps, anyway.
radicale wrote: Why are we using diagnostic tests which do not cover all known strains, when it is technically possible? Does this have to do with the best available science?
Good questions.
radicale wrote: Do you see a problem here Bagge? I see the same problem that you do but we seem to differ in the cause. By solving the main problems, related to diagnosis, the quacks will disappear. The scientists have failed us in this regard.
Bingo.

We've also been failed on any treatment studies as well. If Borrelia persist, then the existing antibiotic regimens patients are using are too long and harsh, and something more effective should be developed. If Borrelia do not persist, and patients have some immune-mediated condition, then some other new treatment should be developed for that condition. Either and/or both. But what we have is the same old, same old, going on for years.

Bagge
Posts: 596
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Re: Virginia Lyme bill

Post by Bagge » Sun 14 Apr 2013 1:32

Camp Other wrote:
radicale wrote:
The answer is obvious. What is the point of repeating this dribble? Who are you trying to convince? If the government was regulating medicine in a proper manner, homoeopathy would only be allowed for entertainment purposes.
Bagge wrote: The point is that the same activists, and the same 'medical' societies and patient associations who are fighting to pass these types of inappropriate laws are the same as those promoting the advancement and protection of the providers who use homeopathy, as well as those who diagnose and treat patients using muscle testing. The same providers, here's one featured in the film. Research the practices of the providers on the patient referral lists. It is those providers they are trying to protect; the one's selling the snake oil. Until there is science on Applied Kinesology and muscle testing, it should be called snake oil.

Educate, don't protect those selling snake oil. These laws do nothing to educate. This educates, and this, and this, and they are written by real experts in the field, not legislators who are not qualified to make such decisions. This is a misuse of legislation. Matters of medicine and science must not be decided by legislation, but by scientists and medical experts.
.
radicale wrote: This is how things should work when the scientists and MDs base guidelines on the best available science, without bias. When it does, the quacks disappear and I would like nothing more than this to be the reality.
I agree. One of my concerns is that guidelines are not based on the best available science, and also that the best available science is limited in what it can tell us about pathogenesis and the disease process in Lyme disease (and concurrent coinfections).

I also think that the 2006 guidelines not only need to be updated to reflect scientific research that's been completed since 2000 (which the guidelines mainly are a copy of the 2000 guidelines) but clinical experience doctors have had since their publication.

Even without those updates, though, I hope that anyone can look at the outcome of a number of the treatment studies for late stage Lyme disease which were cited in the 2006 guidelines and see that there is and has been a problem: A good third of patients are still sick after initial treatment, and some patients show no improvement and are recorded as having relapsed.
radicale wrote: The Lyme Disease field has been paralysed for more than a decade. Myself and a few other members of this forum were mis-diagnosed because the MDs were not competent enough to make a clinical diagnosis and the tests used the incorrect strain (NA when they should have been European). As a result, an opportunity for the quacks to take advantage of us was generated.
I know in my situation the doctor misdiagnosed an obvious EM rash. I even had the tick and it could have been tested for presence of infection - and instead, the doctor threw it out. I consider that not only unprofessional behavior, but unscientific behavior. They threw away what would have been useful data!

The follow-up doctor who saw me also should have known that testing me too early could result in a negative test, and even if it was negative, that doctor should have re-tested me weeks later. They did not.

This is one of the reasons why I supported what's stated in the Virginia bill. I didn't support it because some people who practiced pseudoscience supported it. I supported it for the basic reason that my doctor did not do his job.

Outside of this, I do think that a broader doctor education (more CME credits for tickborne diseases with not just most common presentations taught) and public prevention program was needed and continues to be needed. That and to encourage doctors to treat early and treat thoroughly when they do, and retest for coinfections if the patient continues to be ill. Global warming and climate change put the spread of tickborne diseases outside of Lyme disease on the doctor's doorsteps, anyway.
radicale wrote: Why are we using diagnostic tests which do not cover all known strains, when it is technically possible? Does this have to do with the best available science?
Good questions.
radicale wrote: Do you see a problem here Bagge? I see the same problem that you do but we seem to differ in the cause. By solving the main problems, related to diagnosis, the quacks will disappear. The scientists have failed us in this regard.
Bingo.

We've also been failed on any treatment studies as well. If Borrelia persist, then the existing antibiotic regimens patients are using are too long and harsh, and something more effective should be developed. If Borrelia do not persist, and patients have some immune-mediated condition, then some other new treatment should be developed for that condition. Either and/or both. But what we have is the same old, same old, going on for years.
CampOther, I see it is very frustrating to you that I refuse to play doctor or scientist on the Web, degree by Dr. Google. I have no such medical or science degree, nor a microscope and I, unlike others, will not pretend to be what I am not. Good luck with your controlled research and advice giving. Censoring of information is quite necessary in order to convince legislators that laws are needed and certain doctors need protection.
.

radicale
Posts: 134
Joined: Fri 4 May 2012 16:51

Re: Virginia Lyme bill

Post by radicale » Sun 14 Apr 2013 1:38

I don't understand how someone can be for or against something with so much passion without being informed about all the issues. Unfortunetly, it appears to be more common than I'd like since there is a term for it.

http://en.wikipedia.org/wiki/Useful_idiot

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Virginia Lyme bill

Post by RitaA » Sun 14 Apr 2013 2:06

Bagge,

You wrote:
I have no such medical or science degree, nor a microscope and I, unlike others, will not pretend to be what I am not.
You may not be pretending to be what you are not, but most of us have no idea whatsoever who (or what) you are or what motivates you to post here -- or frankly, why anyone should bother reading any of your posts.

Many of us have openly shared the fact that we are (or at least were) Lyme disease patients or have family members or friends who struggle (or struggled) with Lyme disease. Other folks have shared their professional qualifications and scientific and/or personal views when it comes to Lyme disease.

You are a bit of an enigma, and perhaps intentionally so. I do my best to respect that, but others may have a more difficult time doing so.

Martian
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Re: Virginia Lyme bill

Post by Martian » Sun 14 Apr 2013 2:28

Camp Other wrote:Those few points:

1) I have no issue with someone pointing out that a doctor is practicing based on pseudoscience - especially as long as they provide scientific evidence that what they do is pseudoscience and how precisely it is pseudoscience.
Do you seriously demand people to provide scientific evidence that, for example, salt & C is based on pseudo-science? And against Klinghardt (who has been a speaker at an ILADS conference BTW) his anti-parasite CDs? Or against all the questionable claims Burrascano was making at an "Integrative Approaches" conference in 2011?

Just a few examples, of course I could go on and on and on.

Camp Other wrote:2) I have no issue with someone pointing out that a doctor has done something harmful or engaged in unethical behavior and providing evidence that they have done something harmful or engaged in unethical behavior. I only warn any author of such discussions that they may wish to tread carefully about how they go about it because they can open themselves up to a charge of libel/defamation. Remember: An accusation is not the same thing as guilt.
Yes, tread carefully is a good point. Note that the site owner may also potentially get into trouble...

Camp Other wrote:However, I've been here for a while and I'm already well acquainted with the issues you've brought up about pseudoscience and doctors who practice it - as have a number of active members who have been here a while.
It appears to me that you and a few others here don't realize the seriousness of the problems with so-called "llmds" and the ILADS. If I explain the problem with the label "llmd" you refute it. In case of the ILADS you don't want to judge the organisation as a whole, but people individually. If I say the ILADS should hold themselves to high standards you ask me to define high standards. It looks like you are sticking your head in the sand for these issues.

The reality is that in the past 10 years Lymeland has gone in a downwards spiral and for a large part the blame is on ILADS (note the conferences getting more dubious each year) and so-called "llmds" on the one hand, and Lyme activists/patients on the other hand, who support or stay silent to the dubious practises, therefore enabling them. Nothing will get better as long as this all gets in the way, no matter how much you discuss "the science".


edit: fixed text: that is to blame for the ILADS
Last edited by Martian on Sun 14 Apr 2013 4:21, edited 1 time in total.

Camp Other
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Re: Virginia Lyme bill

Post by Camp Other » Sun 14 Apr 2013 3:11

Bagge wrote: CampOther, I see it is very frustrating to you that I refuse to play doctor or scientist on the Web, degree by Dr. Google. I have no such medical or science degree, nor a microscope and I, unlike others, will not pretend to be what I am not. Good luck with your controlled research and advice giving. Censoring of information is quite necessary in order to convince legislators that laws are needed and certain doctors need protection.
I am not asking you to play doctor or scientist on the web using your Dr. Google degree. I don't even know what - if any degree(s) you possess - or background and experience for that matter. But that is besides the point: All I have asked is who you think is a good doctor or two who treats patients with late/chronic Lyme disease alongside those doctors you judge ill suited for the job.

I have noticed you have either directly accused or implied that a few members here are playing doctor or scientist when they were in fact a doctor or scientist - and suggest perhaps you stop making such statements as you are not fully qualified to make such judgments. You don't know the backgrounds of everyone here - nor do I.

And as someone who is a patient and was misdiagnosed and initially had negative serology - and later had positive Lyme disease serology by CDC definition - I have EVERY right to complain about not being diagnosed and treated properly early on. This disease has affected every aspect of my life - mostly negatively - and I want to find ways to prevent what happened to me from happening to others. If that means discussing the test results and how accurate they are - especially in early Lyme disease - then that's what it means.

I don't see any reason to censor any information, or where I have engaged in censorship. And this forum has demonstrated a wide range of opinions, ranging from "LLMDs are good and helpful" to "LLMDs need to shape up" to "they are dreadful". I don't think you can say this forum has censored you or shut you down from expressing your opinion and sharing information with others. About the most you can say is I - like radicale - have expressed frustration at your repeated discussion on the same topic and wish you would discuss other topics more frequently as well.

Camp Other
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Re: Virginia Lyme bill

Post by Camp Other » Sun 14 Apr 2013 4:21

Martian wrote:
Camp Other wrote:Those few points:

1) I have no issue with someone pointing out that a doctor is practicing based on pseudoscience - especially as long as they provide scientific evidence that what they do is pseudoscience and how precisely it is pseudoscience.
Do you seriously demand people to provide scientific evidence that, for example, salt & C is based on pseudo-science? And against Klinghardt (who has been a speaker at an ILADS conference BTW) his anti-parasite CDs? Or against all the questionable claims Burrascano was making at an "Integrative Approaches" conference in 2011?

Just a few examples, of course I could go on and on and on.
No. Note the use of my word "especially" in the above sentence. It means I have a preference for someone providing evidence to back their claims.

Some of these treatments may be more obviously pseudoscientific than others, such as Klinghardt's nail polish idea.

But then there are other treatments which may be alternative which hold some validity which may help patients - either by providing comfort or by treating the problem directly.

Artemisinin is herbal and could help treat babesiosis as it treats malaria in parts of the world and antimalarials are typically used in clinical practice to treat babesiosis. Is this alternative medicine - or is it just medicine? That becomes part of the issue of making a claim to support a given treatment.
Camp Other wrote:2) I have no issue with someone pointing out that a doctor has done something harmful or engaged in unethical behavior and providing evidence that they have done something harmful or engaged in unethical behavior. I only warn any author of such discussions that they may wish to tread carefully about how they go about it because they can open themselves up to a charge of libel/defamation. Remember: An accusation is not the same thing as guilt.
Martian wrote:Yes, tread carefully is a good point. Note that the site owner may also potentially get into trouble...
Nods.
Camp Other wrote:However, I've been here for a while and I'm already well acquainted with the issues you've brought up about pseudoscience and doctors who practice it - as have a number of active members who have been here a while.
Martian wrote: It appears to me that you and a few others here don't realize the seriousness of the problems with so-called "llmds" and the ILADS. If I explain the problem with the label "llmd" you refute it.
Yes and no. It's really a mixed bag for me, honestly.

I think that some LLMDS (regardless of affiliation) are greedy and base their treatments on weaker claims than others, and by appearances do seem to take unfair advantage of patients. And some do not. Some are trying their best to help patients, don't want to take advantage of them, and only charge what's necessary in order to pay their bills and be able to live.
Martian wrote: In case of the ILADS you don't want to judge the organisation as a whole, but people individually.
Again, yes and no. There are actions they've taken which I do not understand and do not support if they were an organizational decision.

For example, I don't like the fact that they have not produced new guidelines with more studies cited which support them. It's been years, and patients are still waiting when they said they would be presented at a conference... what, two years ago? Perhaps I'm wrong on the date, but that's a disappointment.

The same could be said, though, by me towards the IDSA. They are using guidelines published in 2006 which are almost an exact copy of those published in 2000, which were based on studies from the late 1980's and early 1990's in a number of cases. Even though an independent review panel made requests for changes in 2009 - changes which would help more people get diagnosed and treated earlier especially for coinfections - it's 2013 and these changes have not been updated. Doctors could have been applying these changes in clinical practice for the past 3 years instead of applying the old guidelines - if, in fact, they were even applying those and understood them.

So in this manner regarding guidelines, both organizations have been a disappointment.

I can also say that I am disappointed that ILADS have let untested alternative medicine creep into the guidelines they were using, and that would be true, too. That and heavy promotion of alternative medicine at their conferences, when there is so much research to be discussed and developed.

I do not understand why ILADS conferences do not present and discuss more of the research that is funded by organizations such as the LDA (US) and LRA since these are key support organizations for Lyme disease patients. Some of that research is directly applicable to the treatment of patients, including VGV-L.

I also wish that ILADS conducted more of its own research and applied for NIH grants. It would help in confirming some of their combination treatments for patients who are coinfected.

So it's not that I am not disappointed in some of what ILADS or LLMDs have done - I am. But look at it this way: If I already personally found that an LLMD confirmed what my family doctor should have confirmed and the LLMD treated me when the family doctor didn't, from my point of view that is a point in the LLMD's favor right there.

radicale has a valid point when he says that if doctors took care of infections early on, then patients would not turn to anyone else for treatment. In my situation, I set out to find a doctor who would treat Lyme disease that I already knew I had. That doctor happened to be labeled an LLMD. And my Lyme disease has been confirmed by other doctors outside of the LLMD, too.

Sometimes a case of Lyme disease really just is... a case of Lyme disease. So treat it. Had my family doctor treated it early, I may have not seen an LLMD.

In a broader sense, one thing LLMDs do is believe their patients are sick when they say they are sick and do not tell them it is in their heads and psychological. (Well, with the exception of those who are also psychiatrists who look at any relationship between infection and psychological symptoms - another area of controversy.) This is invaluable for many patients - particularly if they've been shuttled from 10 min appt to 10 min appt under managed care/HMOs with different doctors who never truly investigate the cause for their symptoms and do more thorough workups and rule outs.

If one has a good LLMD, they WILL look at non-tickborne disease causes for your symptoms and not write off everything as Lyme. That's what a good doctor does in general, and that's what my LLMD did, too. I had an issue with my thyroid which my family doctor overlooked and my LLMD tested for it and I received treatment for it. My levels improved, and so did my energy. There are other things which my LLMD found and things which were ruled out that my family doctor did not think to check - to the degree I fired that family doctor and sought out a new one.

Maybe some of us are just unlucky or lucky when it comes to finding doctors, whether one calls them LLMDs or not. I can only tell you in general what my experience has been.
Martian wrote: If I say the ILADS should hold themselves to high standards you ask me to define high standards. It looks like you are sticking your head in the sand for these issues.
No, I ask for a definition for high standards - or even adequate standards - because it is important to know on which basis you are making a judgment.

Do you hold ILADS doctors or LLMDs in general to higher standards than you do other doctors? I think it's important to know, and know what they are and why.

See, I can accept adequate care from some doctors (podiatrists) but want excellent care from others (oncologists) if I need that kind of care. My benchmark is not the same for everyone, but obviously I don't want abysmal or suboptimal care from anyone.
Martian wrote: The reality is that in the past 10 years Lymeland has gone in a downwards spiral and for a large part that is to blame for the ILADS (note the conferences getting more dubious each year) and so-called "llmds" on the one hand, and Lyme activists/patients on the other hand, who support or stay silent to the dubious practises, therefore enabling them. Nothing will get better as long as this all gets in the way, no matter how much you discuss "the science".
As I've said before on this forum, I am disappointed with both ILADS and IDSA. In some cases for the same reasons (such as lack of new guidelines as mentioned above) and in some cases for different reasons (LLMD has at least tried to help me and find reasonably safe ways to help w infection and comfort - IDSA has no suggestions for someone in my situation so far).

Neither of them have lived up to my expectations 100%, but the biggest loser here for me has been the American medical system overall, from a number of family doctors through to ERs and what I see is the blatant greed running rampant in hospitals and clinics nationwide about which David Brill has written.

This aside, the only way I think things are going to change in Lymeland is to start from scratch and have someone else not involved with the Lyme disease controversy to step in and examine the issues anew. We need new eyeballs on the issue, with researchers and doctors who are neither attached to ILADS nor directly attached to the IDSA - new people who are compassionate and want to do well by patients and have no ideological or financial stake in the controversy.

Those of us who are patients with persisting symptoms who either cannot or do not want to take more antibiotics may want to try some new treatment or enroll in a study for one, and this new group could be the ticket to breaking ground in Lyme disease research.

In the meantime, what do you suggest, Martian? Specific reforms from within ILADS, until this new group is made a reality? Do you think all LLMDs are engaging in dubious practices - or just that the ILADS conferences promote them?

Perhaps up for further discussion is this: How much do you think these practices are ones which are encouraged by patients and alternative medicine groups like FAIM? Or that it is simply a growing trend in medicine as a whole to integrate alternative medicine into ANY doctor's practice, LLMD or not? The folks over at the science-based medicine site would probably agree with me that it's a growing trend as a whole to integrate alternative medicine into any doctor's practice and they don't like it.

And how about specific reforms in the IDSA, too? Are they not shortchanging patients and ignoring the issues patients with persisting symptoms have?

Henry
Posts: 1108
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Re: Virginia Lyme bill

Post by Henry » Sun 14 Apr 2013 14:34

Perhaps this might put the Virginia Lyme bill into proper perspective: http://m.current.com/community/94088960 ... ompany.htm.

Anatabloc, a major product made by Star Scientific, is now being touted as a remedy for the symptoms of chronic Lyme disease. http://www.investorvillage.com/mbthread ... &showall=1.

This is what happens when you mix politics with science. You really end up with "bad science". Makes you wonder why there is such an "epidemic" of Lyme disease in Virginia. Notice Governor MacDonald's close association with Lyme disease support groups : http://www.natcaplyme.org/ .

What more could one ask for? Is Virgina becoming a paradise for quacks? Quack, quack, quack......
Last edited by Henry on Sun 14 Apr 2013 19:13, edited 4 times in total.

X-member
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Re: Virginia Lyme bill

Post by X-member » Sun 14 Apr 2013 15:21

Henry:
Is Virgina becoming a paradise for quacks? Quack, quack, quack......
http://www.benthamscience.com/open/tone ... TONEUJ.pdf

From the link above:
The terms “late” and “chronic” Lyme disease, as in syphilis, are synonymous and define tertiary Lyme disease. The use of “chronic” Lyme disease as a different entity is inaccurate and confusing.

admin
Site Admin
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Re: Virginia Lyme bill

Post by admin » Sun 14 Apr 2013 15:39

Carina wrote:Henry:
Is Virgina becoming a paradise for quacks? Quack, quack, quack......
http://www.benthamscience.com/open/tone ... TONEUJ.pdf

From the link above:
The terms “late” and “chronic” Lyme disease, as in syphilis, are synonymous and define tertiary Lyme disease. The use of “chronic” Lyme disease as a different entity is inaccurate and confusing.
Maybe I am missing something, but why are you posting this here? How is this relevant to the topic and to the post of Henry? Please explain.

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