Virginia Lyme bill

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RobertF
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Virginia Lyme bill

Post by RobertF » Fri 15 Mar 2013 10:35

http://lymedisease.org/news/lyme_diseas ... -bill.html

Is it not ridiculous that this must be forced by law, then something is really wrong.
Under the new legislation, patients being tested for Lyme disease must be officially informed that a negative test result does not mean they don’t have Lyme disease.
YOUR PHYSICIAN HAS ORDERED A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE FOR YOU. CURRENT LABORATORY TESTING FOR LYME DISEASE CAN BE PROBLEMATIC AND STANDARD LAB TESTS OFTEN RESULT IN FALSE NEGATIVE AND FALSE POSITIVE RESULTS, AND IF DONE TOO EARLY, YOU MANY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE. IF YOU CONTINUE TO EXPERIENCE UNEXPLAINED SYMPTOMS, YOU SHOULD BE RETESTED PERIODICALLY AND YOU SHOULD CONTACT YOUR PHYSICIAN IF YOU HAVE ANY QUESTIONS OR CONCERNS.

Henry
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Re: Virginia Lyme bill

Post by Henry » Fri 15 Mar 2013 19:22

RobertF: My primary care physician has always discussed with me the limitations and results of all tests that I have received, as a simple matter of courtesy and ethics. Most competent physicians will do this, without having to be asked. There is really no compelling reason why there should be a law demanding that this be done for tests related to Lyme disease and NOT for other diagnostic tests that have much the same limitations and for diseases that may be life-threatening. My fear is that misguided legislation like this will be misconstrued by patients, thereby casting doubts on the validity of all reliable tests that are used and needed to make correct diagnoses.

Let's suppose that your physician told you that the results of your tests for Lyme disease were falsely negative, but that he/she still wants to treat you for Lyme disease with intravenous extended antibiotic therapy where there is significant risk to your health and safety. Wouldn't you think it would be not only appropriate but also essential to ask him/her upon what evidence does he/she base his/her diagnosis for Lyme disease? I certainly would and would expect more than "trust me -- I know it when I see it" or "I've just got this gut feeling that you have Lyme disease". In the absence of the results of some type of objective test, your physician should be willing to tell you why he/she thinks that you have Lyme disease and not something else with similar symptoms. I would not accept any thing less than that, unless your willing to be treated like a guinea pig. It's your body and you have a right to know the answers to these questions. Otherwise, don't you think you are setting yourself up to be victimized by one of those "quacks"?

migs
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Re: Virginia Lyme bill

Post by migs » Fri 15 Mar 2013 23:34

I see your point Henry but in my experience, most GPs write an order and do not explain (and I doubt are aware of)the validity of the result.

I keep in touch with a local Lyme sufferer who is a recently retired GP. His case was very similar to mine...textbook classic in all aspects following his tick attachment. He told me he would rely heavily on test results. He had also discussed it with several colleagues after his experience. His colleagues and himself had thought the test was reliable and if the results were not a positive, then they would move on.

He has submitted 8 non-reactive ELISA tests and an attempt to culture spirochetes from the edge of his bullseye rash. He is sadly known as the only ONE true seronegative case of Lyme Disease his ID doc has ever seen (he freely admits the ONE would likely be zero if he were not personal friends with his ID doc and didn't have a direct channel to the microbiologists at our CDC). He is the only clinically diagnosed case of Lyme Disease accepted and recorded by the British Columbia Centre for Disease Control. His ID doc is an excellent doctor, Lyme awareness aside, but would have sent him packing with the rest after a single ELISA or EIA.

"I know it when I see it" type statments and presumtion of a false negative followed by long term IV therapy is extremely unlikely, unless you're in the office of an "LLMD".

If an unreliable test is causing patients and doctors to screen out an accurate diagnosis, the situation should be made very clear to everyone.

Lorima
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Re: Virginia Lyme bill

Post by Lorima » Fri 15 Mar 2013 23:36

The problem is, that the doctors have been misled into believing that the 2-tier test is much more sensitive than it is, especially in late LD of the non-arthritic type. (How they were fooled, has been described so many times I won't repeat it, unless asked.) They've also been misled to believe that the consequences of late diagnosis are trivial, except in rare cases.

The citizens who asked for, and got, the Virginia bill passed, are most likely the victims of false negatives, which their doctors told them definitively ruled out Lyme disease. Typically, these patients not only suffer the effects of late LD diagnosis, with a correspondingly lower chance of cure, but are also subjected to unnecessary, expensive tests, and empiric trials of drugs, in an effort to keep them from becoming, or remaining, disabled. 

Some of these drugs, like prednisone and other immune-suppressive or -modulatory agents, are counter-indicated in a bacterial infection, for obvious reasons. So until the IDSA, CDC, etc. stop misrepresenting the 2-tier test as "very sensitive" in late Lyme disease, and discouraging physicians from treating suspected early LD immediately even in the absence of EM, the need will continue for this kind of legislation. 
"I have to understand the world, you see."
Richard Feynman

RobertF
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Re: Virginia Lyme bill

Post by RobertF » Sat 16 Mar 2013 0:23

Henry wrote
There is really no compelling reason why there should be a law demanding....
Legislators obviously think different
validity of all reliable tests that are used and needed to make correct diagnoses.
the bill expresses the unreliablity of testresults.
Which tests do you mean?

This legislation is of benifit of the doctors and laboratories which will protect them from patientclaims when a false result is given. Situations like sueing the laboratory, like 4 patients did with Joanna Witacker and claiming 24 milj $ is history.

edbo
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Re: Virginia Lyme bill

Post by edbo » Sat 16 Mar 2013 11:08

Let's not forget that due to the emergence of new strains in North America and due to increased global travel, people might be infected with bacteria that we don't even test for (such as European borrelia strains). As recently pointed out by Dr. MacDonald at the TBDA forum NY.

This is totally unaccounted for and not even part of the bill.

If the CDC is too slow to react to these conditions, I find it more than appropriate to enforce a warning to potential patients and to prevent them from being sent down the wrong path.

P.S. Having lyme & coinfections is being treated like a guinea pig. ;)

Henry
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Re: Virginia Lyme bill

Post by Henry » Sat 16 Mar 2013 13:50

Once again I ask the question. If an individual is seronegative, how does a competent physician justify why he/she thinks a patient has Lyme disease and should be given extended intravenous antibiotic therapy that may be harmful? In the absence of objective evidence for Lyme disease (i.e., a seropositive test or an EM rash), do you really think that general symptoms such as fatigue, headaches, brain fog etc. -- that could be due to other causes-- are sufficient for a diagnosis of Lyme disease? What criteria would you use to arrive at a diagnosis of Lyme disease in a seronegative patient? Don't tell me it is a matter of "clinical judgement"; that means nothing, since sound clinical judgements must be evidence-based and in accordance with what a well-informed and experienced physician is most likely to do.

Henry
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Re: Virginia Lyme bill

Post by Henry » Sat 16 Mar 2013 15:04

Lorima: There is ABUNDANT information, derived from hundreds of comparative studies and all taken into consideration by the CDC, to indicate that an individual is surely going to be IgG seropositive very late during infection by Borrelia burgdorferi. It defies the principles and all that we know about immunology and infectious diseases to imagine a situation in which an individual's immune system has been continually stimulated by Borrelia burgdorferi antigens -- if they indeed are present-- for a substantial period of time and NOT be seropositive. Once again I ask, in such seronegative individuals, upon what EVIDENCE do you maintain that such individuals have Lyme disease and not some other illness with similar symptoms? Could it be that it is nothing more than just your biased opinion? That's not enough for me.

Martian
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Re: Virginia Lyme bill

Post by Martian » Sat 16 Mar 2013 15:23

The full text of the bill:

Source: http://leg1.state.va.us/cgi-bin/legp504 ... ful+HB1933
13102771D

HOUSE BILL NO. 1933
Offered January 9, 2013
Prefiled January 9, 2013

A BILL to amend the Code of Virginia by adding a section numbered 54.1-2963.2, relating to Lyme disease; disclosure of information to patients.
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Patrons-- Comstock, Greason, Ramadan, Rust, Cline, Crockett-Stark, Hugo, Minchew and Spruill
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Referred to Committee on Health, Welfare and Institutions
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Be it enacted by the General Assembly of Virginia:

1. That the Code of Virginia is amended by adding a section numbered 54.1-2963.2 as follows:

§ 54.1-2963.2. Lyme disease testing information disclosure.

Every physician licensed pursuant to this chapter shall provide the following notice related to Lyme disease to each patient for whom a laboratory test for the presence of Lyme disease is ordered:

ACCORDING TO THE CENTERS FOR DISEASE CONTROL AND PREVENTION, AS OF 2011 LYME DISEASE IS THE 6TH FASTEST GROWING DISEASE IN THE UNITED STATES.

YOUR PHYSICIAN HAS ORDERED A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE FOR YOU. CURRENT LABORATORY TESTING FOR LYME DISEASE CAN BE PROBLEMATIC AND STANDARD LAB TESTS OFTEN RESULT IN FALSE NEGATIVE AND FALSE POSITIVE RESULTS, AND IF DONE TOO EARLY, YOU MANY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE. IF YOU CONTINUE TO EXPERIENCE UNEXPLAINED SYMPTOMS, YOU SHOULD BE RETESTED PERIODICALLY AND YOU SHOULD CONTACT YOUR PHYSICIAN IF YOU HAVE ANY QUESTIONS OR CONCERNS.

The notice is lacking a sentence, which I have included here in red:
ACCORDING TO THE CENTERS FOR DISEASE CONTROL AND PREVENTION, AS OF 2011 LYME DISEASE IS THE 6TH FASTEST GROWING DISEASE IN THE UNITED STATES.

YOUR PHYSICIAN HAS ORDERED A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE FOR YOU. CURRENT LABORATORY TESTING FOR LYME DISEASE CAN BE PROBLEMATIC AND STANDARD LAB TESTS OFTEN RESULT IN FALSE NEGATIVE AND FALSE POSITIVE RESULTS, AND IF DONE TOO EARLY, YOU MANY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE POSITIVE, THIS DOES NOT NECESSARILY MEAN YOU DO HAVE LYME DISEASE. IF YOU CONTINUE TO EXPERIENCE UNEXPLAINED SYMPTOMS, YOU SHOULD BE RETESTED PERIODICALLY AND YOU SHOULD CONTACT YOUR PHYSICIAN IF YOU HAVE ANY QUESTIONS OR CONCERNS.

Henry
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Re: Virginia Lyme bill

Post by Henry » Sat 16 Mar 2013 16:41

Martian: Then tell us, what does it mean and why should one bother to be tested FOR ANYTHING in the first place?

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