http://www.cdc.gov/ncidod/dvbid/lyme/bibliography.htm

For those that haven't managed to choke their way thru that crap, LymeNet is listed as one of the websites that have inaccurate information - as well as Lyme Disease Association, AND ILADS. (So I suppose all the docs at ILADS are just idiots?)

I think the reason CDC got those so-called "MD's" to write that article for them is to distract from & discredit the "other" side because the CDC is clearly not following the mandate given to them by the legislative committee several years ago - where they were told to educate docs & the public about how Lyme is a clinical diagnosis and should not be diagnosed using their surveillance criteria.

I'm just so MAD MAD MAD!

I feel like we are little Davids needing to beat the giant governmental Goliath....anyone know where the magic sling shot is?!!!

mad mad mad mad mad mad mad mad mad mad !!!

We have a lot of obdtacles to overcome before we can bring down this Goliath. First of all, not all the Davids know there is a Goliath, some think that we're all just swimming in a giant duck pond battling with thousands of individual ignorant and dopy ducks.

I know it seems that way, but in fact the ducks are only ducks because Goliath has made doctors understand that when he says "quack", they must say "how loud?", or risk losing their medical licences.

Lisa

quote:

---

Originally posted by DR. Wiseass:

I feel like we are little Davids needing to beat the giant governmental Goliath....anyone know where the magic sling shot is?!!!

mad mad mad mad mad mad mad mad mad mad !!!

---

On the one hand they say lyme is easily treated, and really nothing to worry about. Then they state that lyme can lead to arthritis, heart problems, meningitis, etc.

So, what the hell is it ? They've contradicted themselves in their own article.

They then show that people with chronic lyme, ILADS, those on the frontlines of this disease, are all providing inaccurate information.
The only ones not providing inaccuarate information are the one's that refuse to treat the disease !

So in effect, they've never treated with long-term abx, refuse to do so, and then state that they know better than people that do. Amazing ! A first year law student would make mince meat out of these clowns.

Where's the post-cancer syndrome ? You know, where you treat with chemo/radiation for 30 days, absolutley no longer, because every cancer sufferer is exactly the same.

If they continue to experience pain, tumors, etc., this is then attributable to "post cancer syndrome", because these genius's are sure they've gotten it all.

Now of course, they've never treated cancer sufferers past this 30 day regimen, so naturally that qualifies them as experts.

It's laughable, full of contradictions, that a child could see through. I'm sure some lyme sufferer will take their non-sensical babble to heart and develop serious lyme-induced complications from lack of treatment, and raise this article in court proceedings.

quote:

---

Originally posted by NP40:
Oh, and by the way. How about we e-mail our representatiive's and point out that the CDC is going completely against what they were mandated to do. Namely, assist lymies in getting adequate treatment.

---

Notice to Readers: Caution Regarding Testing for Lyme Disease

CDC and the Food and Drug Administration (FDA) have become aware of commercial laboratories that conduct testing for Lyme disease by using assays whose accuracy and clinical usefulness have not been adequately established. These tests include urine antigen tests, immunofluorescent staining for cell wall--deficient forms of Borrelia burgdorferi, and lymphocyte transformation tests. In addition, some laboratories perform polymerase chain reaction tests for B. burgdorferi DNA on inappropriate specimens such as blood and urine or interpret Western blots using criteria that have not been validated and published in peer-reviewed scientific literature. These inadequately validated tests and criteria also are being used to evaluate patients in Canada and Europe, according to reports from the National Microbiology Laboratory, Public Health Agency of Canada; the British Columbia Centres for Disease Control, Canada; the German National Reference Center for Borreliae; and the Health Protection Agency Lyme Borreliosis Unit of the United Kingdom.

In the United States, FDA has cleared 70 serologic assays to aid in the diagnosis of Lyme disease. Recommendations for the use and interpretation of serologic tests have been published previously (1). Initial testing should use an enzyme immunoassay (EIA) or immunofluorescent assay (IFA); specimens yielding positive or equivocal results should be tested further by using a standardized Western immunoblot assay. Specimens negative by a sensitive EIA or IFA do not need further testing. Similar assays and recommendations are used in Canada (2). In the European Union, a minimum standard for commercial diagnostic kits is provided by Conformit� Europ�ene (CE) marking; application and interpretation guidelines appropriate for Europe have been published (3,4).

Health-care providers are reminded that a diagnosis of Lyme disease should be made after evaluation of a patient's clinical presentation and risk for exposure to infected ticks, and, if indicated, after the use of validated laboratory tests. Patients are encouraged to ask their physicians whether their testing for Lyme disease was performed using validated methods and whether results were interpreted using appropriate guidelines.

References

Here's the relevant part of Public Law 107-116 which the CDC is contravening:

"The Public Law stated:

"The Committee recommends that the CDC strongly support the re-examination and broadening of the Lyme disease surveillance case definition by the Council of State and Territorial Epidemiologists. Voluntary and patient groups should have input into this process ...

"The CDC is encouraged to include a broad range of scientific viewpoints in the process of planning and executing their efforts.

This means including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates in planning committees, meetings, and outreach efforts.."

Lisa

quote:

---

Originally posted by NP40:
Oh, and by the way. How about we e-mail our representatiive's and point out that the CDC is going completely against what they were mandated to do. Namely, assist lymies in getting adequate treatment.

---

quote:

---

Originally posted by Aligondo Bruce:
why not a mass email campaign to cdc email adresses?

---

I don't see the point of us emailing the CDC. They're not going to kick their own *ss.

We have to kick it for them.

I don't believe this text exists. I've reviewed Public Law 107-116, and it has nothing about Lyme. It was announced by the LDF, but then I suspect it was removed from the actual law that was signed.
http://www.gpoaccess.gov/plaws/search.html

Cheryl

quote:

---

Originally posted by Lymerayja:
Yeah, we had some discussion on this matter in the General support section (look for a thread with "elephant manure" in the title).

Here's the relevant part of Public Law 107-116 which the CDC is contravening:

"The Public Law stated:

"The Committee recommends that the CDC strongly support the re-examination and broadening of the Lyme disease surveillance case definition by the Council of State and Territorial Epidemiologists. Voluntary and patient groups should have input into this process ...

"The CDC is encouraged to include a broad range of scientific viewpoints in the process of planning and executing their efforts.

This means including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates in planning committees, meetings, and outreach efforts.."

Lisa

---

Below are the "facts" according to the paper, minus a couple of "facts" about removing ticks. Read them and tell me where they are wrong. You're all going off on these guys when, after reading the paper, I'm thinking they're giving us more credibility than we've had.

Are you all just upset because they've said the information on this site might be inaccurate? Well...get your heads on straight! If you go through and read the posts on this BB and then compare them with the facts, I'm sure you'd come to the same conclusion. There are an awful lot of opinions and BS on this board that don't fit with the facts. That doesn't mean we're wrong, but it's not the best way to educate a newbie that doesn't have the "facts" as a baseline.

So...read the excerpted facts, and tell me what's wrong with these statements:

What Should Be Done for a Tick Bite? Ticks other than the
deer tick carry B. burgdorferi. A tick attached for [more than]24 hours
can frequently transmit Lyme disease. Antibiotic prophylaxis
should be routinely prescribed for tick bites. Antibiotic prophylaxis
for [more than]10 days is recommended for tick bites.

How Is Lyme Disease Diagnosed? Diagnosis of Lyme disease
may be based on subjective findings. Feeling better while
being treated with antibiotics establishes the diagnosis of
Lyme disease. Positive serology is not necessary to confirm
the diagnosis of late Lyme disease (rheumatologic, neurologic
or cardiac).

What Are the Standard Serologic Tests for Lyme Disease?
Serology is unreliable even in late Lyme disease (rheumatologic,
neurologic or cardiac). The CDC criteria for a positive
B. burgdorferi Western blot is not useful for defining clinically
infected patients with late Lyme disease. Symptoms and
response to antibiotic therapy are more important than serology
for confirming the diagnosis of late Lyme disease.

What Is Chronic Lyme Disease and Does It Occur
Commonly? Chronic Lyme disease is common and occurs
without objective findings. Chronic Lyme disease is caused
by persistent B. burgdorferi infection.

How Is Lyme Disease Treated? Oral therapy may include
antibiotics other than amoxicillin, doxycycline or cefuroxime
axetil. Multiple antibiotics may be used simultaneously. Intramuscular
penicillin therapy may be used. Parenteral antibiotic
therapy (either iv or im) are commonly used along with
oral antibiotic therapy. Treatment courses longer than 28 days
are usually needed, and courses of months to years may be
necessary.

If Lyme Disease Is Diagnosed and Treated in Pregnancy,
Are There Dangers to the Fetus? Many cases of congenital
Lyme disease have been well-documented. Congenital Lyme
disease can cause multisystem organ involvement for infants
and children requiring prolonged therapy. Even if a mother is
appropriately treated for Lyme disease during pregnancy, her
newborn may still be infected and suffer from on-going
infection.

Yes, I have read the article, and it is in fact loaded with inaccurate, biased, and harmful info about Lyme disease as well as Lyme disease organizations (ILADS, LDA, etc.). What you posted is preceded by "Examples of inaccurate information are as follows."

As PDF

As HTML (Might be temporary)

Cheryl

Lyme disease has never been passed in breast milk to an infant. Congential lyme has never been reported.

General risk of getting lyme after a tick bite is 1 to 3% in an endemic area. (How in the world would they know this? Clearly an invented factoid. Where would anyone get such data? How could this be true when in some areas more than half of the ticks carry lyme and other germs?)

Antibiotic prophylaxis is not recommended after a tick bite.

Tick testing is not recommended.

A positive WB IGg is required to confirm lyme diagnosis in people with "objective" symptoms.

Both the ELISA and WB must be positive in order for a patient to have a positive serology result.

Chronic lyme is not real, post lyme syndrome is the explanation for continuing symptoms.

I am going to stop here because it is clear you and I were not reading the same article. Did you notice that the IDSA guidelines, etc. were used as the standard for whether internet websites contained accurate information?

As Cheryl pointed out, your statements posted above were the ones specifically designated as inaccurate info gotten on internet websites like this one.

In other words, this article has turned the truth on its head. Just believe the "inaccurate" statements and that will be the truth. And this kind of crap is being passed on to unsuspecting public. It is mindboggling. If there is a hell, those people are on the short list.

quote:

---

Originally posted by Cheryl:
Hi Lisa,

I don't believe this text exists. I've reviewed Public Law 107-116, and it has nothing about Lyme. It was announced by the LDF, but then I suspect it was removed from the actual law that was signed.
http://www.gpoaccess.gov/plaws/search.html

Cheryl

---

How did this happen? The law is quoted on dozens of well-known Lyme websites, not just LDF. It was referred to in a speech by Pat Smith at the Rhode Island hearing in 2003.

How did the Lyme text get pulled at the last minute?

quote:

---

Originally posted by Lymerayja:
I don't see the point of us emailing the CDC. They're not going to kick their own *ss.

We have to kick it for them.

Lisa

---

quote:

---

Originally posted by Aligondo Bruce:
no, but it might be really annoying to them if enough people emailed

---

No, I disagree. Their secretarial staff can easily set up filters so that our letter don't even get near the intended recipients.

In any case the CDC probably already have a filter that excludes all email on lyme unless it comes from a dot-mil computer.

quote:

---

Originally posted by ShadowHawk:
Yup, yup, yup. I goofed big time. Don't know why I missed the page in between. My apologies to everyone.

---

I believe you had a nasty bout of foot-IN-mouth disease.

Don't know if either of these explanations is correct, just a stab at an explanation on my part. Have a feeling that someone could give us the complete scoop, but they may not be posters on this forum.

BTW, wasn't this language referred to in the CT hearings a while back?

OK, here's my take on this...

I asked about the Public Law 107-116 issue several times over the years, to the LDF and others, and never got a real answer. I posted about it, and no one else seemed to know either. What happened at the time is that the LDF announced it, but then when the "law" became available at the goverment site (takes a few months) it made no mention of Lyme.

I was very interested in validating it through other sources, as if it does exist I would certainly put it at my website. But I find it very odd that Public Law 107-116 found through the government sites does not contain that text. I wondered if perhaps it was a "presidential statement" that accompanied 116, but that is not what the LDF was saying. And then I found the presidential statement accompanying the law, and the Lyme stuff wasn't there. http://www.gpoaccess.gov/wcomp/v38no2.html

Thanks, Lisa, for bringing it to my intention that Pat quoted it in her testimony. I had previously seen it at plenty of Lyme sites too, but they all have been based on the LDF's announcement of it.

I emailed Pat yesterday and she says she has a hardcopy of it. But I still find it very odd that at several different government places I've found this law, the Lyme text does not exist.
http://thomas.loc.gov/bss/d107/d107laws.html

Like Lou, I too understand that this would be part of an appropriations bill. As such, it would not be a "law" as we generally view laws with real enforcement power. Nonetheless, I'd love to know the scoop on this.

Oh well, link not working. It really wants that smiley face in there LOL

http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=107_cong_public_laws&docid=f ubl116.107

Presidential Remarks

Here's what it says there:

Excerpt from U.S. Public Law 107-116
signed by President Bush on January 10, 2002
Departments of Labor, Health, and Human Services,
and Education, and Related Agencies
Appropriations Act 2002

--------------------------------------------------------------------------------

12The Committee is deeply concerned
about the safety of the Lyme disease vaccine
(LymeRix). Over 1,000 adverse event reports were
filed with the Food and Drug Administration
from December 1998 to October 2000.

The Committee encourages CDC to work
closely with the FDA to 10ensure that all
adverse event reports are thoroughly and
expeditiously investigated to ensure public
safety as the vaccine is being distributed.
10Investigators should pay particular
attention to patients' reports of
arthritis when evaluating these
reports.

The Committee recognizes that the
current state of laboratory testing for
Lyme disease is very poor. The situation
has led many people to be misdiagnosed and
delayed proper treatment. 4The vaccine
clinical trial has documented that more
than one third (36 percent) of the people
with Lyme disease did not test positive
on the most sophisticated tests
available. 1The ramifications of this
deficit in terms of unnecessary pain,
suffering and 12cost is staggering.
The Committee directs CDC to work closely
with the Food and Drug Administration to
develop an unequivocal test for Lyme disease.

1The Committee is distressed in
hearing of the widespread misuse of
the current Lyme disease surveillance
case definition. While the CDC does
state that `this surveillance case
definition was developed for national
reporting of Lyme disease: it is NOT
appropriate for clinical diagnosis', the
definition is reportedly misused as a
standard of care for 9healthcare
reimbursement, product (test)
development,5medical licensing hearings,
9and other legal cases. 13The CDC is
encouraged to aggressively pursue
and correct the misuse of this definition.
15This includes issuing an alert to the public
and physicians, as well as actively issuing
letters to places misusing this definition.

The Committee recommends that
the CDC strongly support the
re-examination and broadening of
the Lyme disease surveillance case
definition by the Council of State
and Territorial Epidemiologists
Voluntary and patient groups
should have input into this process
7Currently there is just one definition
( `confirmed case' ) of seven possible
categories. By developing other
categories while leaving the current
category intact, 2, 3, 8the true number
of cases being diagnosed and treated
will be more accurately counted,
lending to improved public
health planning for finding
solutions to the infection.

6The CDC is encouraged to
include a broad range of scientific
viewpoints in the process of planning
and executing their efforts.
This means including community-based
clinicians with extensive experience in
treating these patients, voluntary
agencies who have advocacy in their
mission, and patient advocates in planning
committees, meetings, and outreach efforts.

-------------------------------------
The Wilder Network then gives a link to "The Law"
http://thomas.loc.gov/cgi-bin/cpquery/2?sid=cp107y8iC&item=2&hd_count=2&r_t=a&r_n=107-84&submit=Search&variant=y&acronym=n&syndict=n&spq=n&sort_by_docid=n&d_q=on&dbname=cp107&maxdo cs=1&report=sr084.107&sel=TOC_248874&%0D

You have to scroll down about 3/4 of the way to reach the paragraphs about Lyme.

(Hope that link works - it's pretty long!)

------------------
DR. Wiseass - not a real doc - just a real wise *** . www.twistoflyme.blogspot.com

[This message has been edited by DR. Wiseass (edited 18 April 2005).]

If you want - go to the Wilder Network link, and at the bottom - there will be a link to "the law". Good luck. I'm tired.

Having been a medical provider, as well as a consumer, I have seen both ends of the donkey....they look amazingly the same.

When you consider information given to the public by the CDC, you have to remember this is the same CDC that just shipped thousands of labs a killer flu vaccine......the very same CDC that said the first antrax victim got it by drinking from a brook, and I am not even going to bring up the HIV thing and their stance back in 1984 (not a threat to non-homosexual population, blah, blah, blah)

I know of very few lyme infected people who got well....if they did....give it time...they just end up with some other diagnosis + "by the way" "patient also had lyme disease".

I don't want to bash the government nor science....I'm a great believer in both, when they are not dictated by profit margins.

UGH I give up. LOL Maybe others will have a different interpretation. But personally I'm not yet convinced that there exists a 107-116 that mentions Lyme/CDC and was signed by the Prez. Maybe wise one can shed a different light?

If you click on the link at the bottom of the wilder network page, it has an option to view bill status. That brings you here:
http://thomas.loc.gov/cgi-bin/bdquery/z?d107:S.1536: