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

1. CDC. Recommendations for test performance and interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease. MMWR 1995;44:590--1.
2. Consensus Conference on Lyme Disease. Can Dis Wkly Rep 1991; 17:63--70.
3. Wilske B, Z�ller L, Brade V, et al. MIQ 12 Lyme-Borreliose. Qualit�tsstandards in der mikrobiologisch-infektiologischen Diagnostik. Munich, Germany: Urban & Fischer Verlag; 2000;1--59. Guidelines available in English at http://nrz-borrelien.lmu.de/miq-lyme/index.html.
4. Robertson J, Guy E, Andrews N, et al. A European multicenter study of immunoblotting in serodiagnosis of Lyme borreliosis. J Clin Microbiol 2000;38:2097--102.

Comment: The main reason these test haven't been validated in scientific literature is because the clinical studies backing up the test were turned down for publication by the scientific journals.

Alex

In a short amount of time all disease could be statistically conquered.

At the same time the problems with Social Security benefits would be solved because so many people would die sooner of 'natural causes.'

You people just aren't thinking 'correctly'.

OFF to the re-education centers all of you for questioning our omnipotent bureaocratic wisdom!

John W. Ward, M.D., Editor
Epidemiology Program Office MS E-96
Centers for Disease Control and Prevention
1600 Clifton Rd.
Atlanta, GA 30333
Fax: (404) 498-6045
Send E-mails to: [email protected]

I'd suggest that you make the letters respectful and as factual as possible. It always helps to have technical citations to back up any claims. And definitely let them know if their two-tiered Elisa/WB strategy lead to a misdiagnosis and subsequent delay of treatment. They need to know that their bad diagnostic criteria is hurting real people.

If anyone knows details on the CDC hierarchy, and understands what is preventing a revision of CDC diagnostic guidelines, please email me privately.

Forget about writing letters to your elected leaders. By the time it's scanned, screened, run through a laundromat, it could be months before they get it. E-mail, or phone call.
Politicians are hip to organized letter campaigns. If they read the first one, they've read them all.
Individuals contacting politicians are much more effective as they feel this is more representative of attitudes in their particular district.
It is time for this nonsense to end. The CDC, the Ducks, insurance companies, etc.
AIDS victims knew they had nothing to lose, that silence equals death, so they raised hell.
The lyme community needs to do the same thing, or ultimately they'll let lymies suffer into complete debilitation, or death.

The media is the key. Local TV spots on long time sufferers, who've come back are the type of stories the media will eat up.
Letters to the editors, are very effective, and should be done on a continual basis.

Lyme support groups need to be in constant contact with one another. State groups need to come as one voice when descending on Washington. There are more than likely a million sufferers of this disease, and the numbers swell. Politicians will take note when a million people's vote can be swayed one way or the other.

By the time the CDC, NIH, FDA and other regulating agencies including
those in Europe approve the TBI testing many people are dead or near dead.
If we go by CDC guidelines we would only use the Elisa & Western Blot. The
Elisa was made the standard not because it is good but because it is an economical
test to run.

It is the very labs that they are questioning that have been the innovators in testing. The Urine antigen test is excellent as is another
antigen test ran by another research laboratory. There are many excellent
DNA testing that is much more accurate than the standard testing the CDC
recommends.

Many Europeans are being misdiagnosed or not diagnosed at all. They do not all have ME or CFIDS or FIBRO as many of the doctors in Europe as well as here
give when they give a Dx at all, they give one of those. I have a family in
Germany where they have some of the best researchers around but not the best
diagnostic test or treating physicians. My family had to come here to get
diagnosed and treated. Just read Euro Lyme to see what they go through to get tested
or treated in the European countries. Standard testing did not diagnose my
husband. It took Antigen testing and DNA testing to get a DX on him. I was
able to have a researcher grow out Bb on me and since I am a researcher I can't be
fooled by false science. I know what it looks like under the right stain and
right high powered microscope. (Immunoflorescent antibody testing as tumor markers and to identify pathogenic bacteria that had spread to new borns in Pediatric Oncology was hailed back in the '50's... the work was praised but we were not dealing with Bb which everyone wants to sweep under the rug.)

How many of us were told we were not positive for Bb because we had what the CDC considers to be the standard test? I'm
grateful that there are those out there who go beyond the poor but economical test
our government as well as others consider standard testing and have looked for
answers elsewhere. There are many of us alive today thanks to their own efforts.
Actually anything the CDC or Food and Drug Administration approves scares
me; look at all the missed TBI cases and the recall of drugs that were pushed
out the door without proper testing just to make a buck. The fact that the article
was written by a government agency would concern me. They do not know
or want to acknowledge the serious situation we have with vector born diseases
in the USA or Europe.

The phone numbers for HELP are:
Majority Staff 202-224-6770
Minority Staff 202-224-0767
http://help.senate.gov/contact.html

Sen. Enzi's e-mail is:
http://www.senate.gov/general/contact_information/senators_cfm.cfm?State=WY

Sen. Kennedy's e-mail is:
http://www.senate.gov/general/contact_information/senators_cfm.cfm?Name=Kennedy

quote:

---

Originally posted by NP40:
This reminds me an awful lot of the AIDS struggle. AIDS victims got organized, got the media on their side, started grassroots, and got mad !
!

---

Who are the "readers" being notified?

Is this public warning?

It does not sound like an official statement from the CDC. Who is the contact, did it get approved by their legal department?

They mention canada, germmany and the UK. Who are they and what do they have to do with it?

Something does not sound right here and such blanket statements, if damaging to the approved labs could result in the author organization being sued. To prove economic damage is easy, the number of cases are increasing at a rate the CDC tracks AND publishes. If the labs bussiness does not grow at that rate, you have been hurt by the statement. Its as simple as that.

I have also read that there are 70 serologic labs "approved" by the FDA and CDC
for lyme testing. However, I have been unable to find such a list.

Here in MA doctors refuse to accept results from IGeneX because they say it is not an "approved" lab. They will only accept testing done through Imugen Labs which is run by some of Steere's cohorts. You can bet that these labs would be on the approved list!

The reality is that the medical community including the NIH and the CDC can not stay up fast enough with all of these mutating bacteria and viruses.

What really is bothering me here though is that everyone mentions AIDS and the response it gets. The reality is that Lyme in its current form was identified 6 years prior to AIDS.

AIDS clearly has issues that are greater than that of LYME but LYME has been around just as long. It is important to remember the perception in the beginning of AIDS was that it was a homosexual disease. It was Hollywood that really brought it to the attention of the public, with Rock Hudson having it and Liz Taylor pushing it. The rest of Hollywood jumped in.

It was still awhile before the public really new that it was not just a gay disease. Yet the support was already growing and the Government acted.

Hence why have we not got the same attention. First of all we do not have Hollywood big money behind it, even though some big name Hollywood people have or still are suffering from it. Second, Lyme is probably way more transmittable than AIDS meaning that a majority of the population may already be infected and the government knows this.

Thirdly, because of this if the government admited this fact, it would create widespread chaos in the economy. With percautions, in its current form AIDS is not as transmitable, so the government did not have to worry about the impact.

I believe the sad reality is that the government does know what is going on, has no clue as to what to do about it, and is trying to minimize public attention so as to avoid panic.

You could go even deeper into potential consperacies, but the reallity is that it just does not matter. I think we should all be concerned. The reality is we dont just get shuned by the medical community, but we are actually treated with anger. I dont know of any other disease where people are treated like this. I am lumping Chronic Fatigue and Fybromyalgia into this as well.

Our only hope is to get together in large groups, I mean really large groups and march on the CDC, NIH and the health departments. We need to get media attention and we need large numbers for that. And I hate to say it but we need to get our kids front and center, it would make a stronger statement.

We also should create an electronic quilt with all of the names of the people that have died from this disease, with pictures and explanations. We need to show numbers.

There have been street protests, hearings or legislation proposed or passed in at least 5 states. There was a protest at NIH back in 1999 when Steere spoke there.

There was the meeting in Washington with grand poohbahs at the agency overseeing CDC and NIH. There was a meeting with military brass in Washington too, because military people weren't getting treated.

Legislation has been introduced in Congress several years, for research funding. Not passed yet. A split in the lyme community over which version was best.

Media contacted about this generally take the other side, the big guns. The program on Nightline made treating lyme with antibiotics for longer than a few weeks to be some kind of strange alternative medicine practice. Dateline planned two one hour segments but folded mysteriously, finally airing about two minutes on a Sat. morning.

The smaller newspapers and a radio station here or there have done a better job, but don't reach many people.

Usually the media are restricting their coverage to stories of individuals with lyme, not the controversy, and when they do go farther, they hurt us because they get it wrong. Like the NY Times.

Basically the problem is that we are not organized enough, not enough people have been involved, and we are fighting city hall.

It would help if newbies here would support what organizations there are, inform themselves (subscribe to the Lyme Times), read Cheryl's lymeinfo site. I recommend getting back issues of the Lyme Times to find out what has been happening. I suggested writing to senators and congressmen because 60 minutes has either ignored us in the past, or in a recent story, suggested that negative tests meant the guy didn't have lyme. Yes, it would be nice if they covered our story and got it right. But as an immediate first step, letters to Congress about the testing mess and the fact that the CDC has not done their job would at least cause the CDC to realize they were being watched. Mail from congressional sources is always answered, is handled in a tracking system, not like individual letters from citizens to govt agencies. So, if you write to your senators/rep. and they contact CDC on your behalf, a reply is guaranteed. And a bunch of congressionals on this subject will be noticed at CDC.

It is great that some of you want to do things. We really have no choice but to keep on fighting. It has not escaped my attention that people keep on posting other, less vital , topics and reply in much larger numbers on some pretty trivial threads. So, you can see that there are still those who don't understand a crisis when they see one and won't do anything. Hope they figure out that their lives may depend on lyme activism.

Sometimes I think it might be a mistake to tell folks what has happened in activism in the past. They might get discouraged, just when we need them to carry the baton for a while, when the oldtimers get weary. Doing nothing is really not a choice. No matter what has been done in the past, we are not there yet and just have to keep fighting.

My feeling is that doing something is better than doing nothing (usually). Am hoping that someone, like Pat Smith of the LDA, will, come along and give us some marching orders so we will gallop in the same direction.

What I will never understand is how all these disparate entities can all be working together to surpress and ignore the lyme problems, without any apparent organizing. When faced with a choice between incompetence and conspiracy, I always go with incompetence as an explanation. However, it is clear that the Steerites, CDC, etc are definitely organized on this subject.

Wondering if this post will just sink like a stone. Anyone still reading?

If so, here is the info on this CDC notice: it was published on Feb. 11, 2005 in the Morbidity and Mortality Weekly Report, a major CDC publication read everywhere, all around the world too. You can get this from the CDC website by googling MMWR.

[This message has been edited by lou (edited 12 February 2005).]

This is serious and we probably need to respond. Any ideas?

The CDC has said that Lyme is a 'clinical diagnosis', so why are they trying to close down our options in testing...they certainly aren't putting the patients interest first. In my opinion with Lyme it is better to error on the side of having a false positive than to let the diagnosis go until the patient is in the third stage of Lyme disease. I've seen too many cases where lack of a positive test resulted in chronic illness or worse.

(large .doc file)

"Watershed at Dearborn" starts around page 31. Or keyword search "Dearborn".

Good job, Lymeblue!

***http://www.astralgia.com/magazine/bitterfeud.htm

http://www.wildernetwork.org/accurate_test.html

http://www.lymeinfo.net/cdccitations.html

Regarding Advocacy, see:

http://www.lymediseaseassociation.org/Important_Bills.html

See "Health & Human Services Meeting Washington, DC November 2003"

Lyme Advocacy, including event history:
http://www.lymeinfo.net/advocacy.html

Seronegativity File:

http://www.lymeinfo.net/lymefiles.html

Go for it! There is strength in numbers and the more responses the better.
Ann-OH
[quoting myself!]
Re:
MMWR [CDC's Morbidity and Mortality Weekly Report]February 11, 2005/54(05);
Notice to Readers: Caution Regarding Testing for Lyme Disease

You said the FDA shared your concerns, yet you did not cite the FDA Bulletin of 1999 which was based on a study of materials and tests available for Lyme disease, available at http://www.geocities.com/ldbullseye/fda-1.html

It is very thorough and contains vital information on accuracy, timing of tests, and reliability that your "Caution" omits.

If doctors follow your recommendations, many more Lyme disease cases will go undiagnosed and untreated when the unreliable first test comes up negative.

You should publish an apology, or errata(at the least) and publish the FDA paper.

Lots of people very sick with Lyme disease are very disheartened at the CDC and its attitude and lack of concern for Lyme disease.

Dealing with law makers though is like dealing with brick walls. It is all but impossible to get them to move let alone get the to accomplish anything, and even if you do get them to listen by the time that they get around to doing anything it gets twisted in so many directions, it actually can do more harm than good.

We are a country built on protests. This goes all they back to the days of the Boston Tea Party. Law makers react, that is all they do they are very rarely proactive. While we need them to protect our rights in the long run, right now, they are useless for us.

As sick as we all are, we need to get every little piece of energy we have and get out on the streets, We need visible protests demanding action. We need large numbers to show we mean business.

I agree that the one story here and the one story there is probably doing wery little for our cause, but repeated protests and keeping it in the news is the only way we will get attention. We need to raise money for full page ads in the major nespapers Like the NY Times, LA Times and the Atlanta Journal.

We need PR first, Major public relations. It is very possible we might be up against a major conspiracy, who knows, I would like to think not, but what ever we are up against needs to be exposed. We all need to get around one organization. Preferably one connected to ILADS, sort of like a booster club. We need one platform to speak from, so that we are not all over the place.

We need to create a list of damands, a bill of rights of sort, that people can agree upon, then we need to get it signed by as many people as we can. It is important that we all speak from one voice.

Then with the exposure and our demands we take it to the law makers, make it an issue in the election, cause them to react.

THis is only my opinion, take it for what it is worth. Lou I really appreciate your efforts and alway enjoy reading your posts.

My dream is to see thousands of us on Parliament Hill he in Canada and something similar in the US.

People may start listening. Most of the public has no idea how we suffer. Many dont' even know what lyme is. If it became known nationwide by the media how many of us there actually are, i think moves like this would be jumped on by the media, and they would back off.

Oh - to dream!!!!!!

We are going to have to organize at sometime inorder to get our voices heard. Wish we had a celebrity like AIDS had in Elizabeth Taylor to bring attention to LYME.

SandiB

What is implied by the report is that the various tests they point out have not been peer reviewed. I did a review of the literature and found tests (other than ELISA and WB) that have English language publications (with abstracts) in peer-reviewed journals. Here are a few references.

Don't react with emotion, react with FACTS.

LUAT TEST

Nick S. Harris, PhD, and Boyd G. Stephens, MD. (1995). Detection of Borrelia burgdorferi antigen in urine from patients with Lyme borreliosis. Journal of Spirochetal and Tick-Borne Diseases. Vol. 2, No. 2, pp. 37-41.

Bayer ME, Zhang L, Bayer MH. (1996). Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme disease symptoms. A PCR study of 97 cases. Infection. 1996 Sep-Oct;24(5):347-53.

Hyde FW, Johnson RC, White TJ, Shelburne CE.
Detection of antigens in urine of mice and humans infected with Borrelia burgdorferi, etiologic agent of Lyme disease. J Clin Microbiol. 1989 Jan;27(1):58-61.

C6 ANTIBODY TEST

Fleming, R.V. et al. (2004). Pre-treatment and post-treatment assessment of the C(6) test in patients with persistent symptoms and a history of Lyme borreliosis. Eur J Clin Microbiol Infect Dis. 2004 Aug;23(8):615-8.

Philipp MT, Marques AR, Fawcett PT, Dally LG, Martin DS. (2003). C6 test as an indicator of therapy outcome for patients with localized or disseminated lyme borreliosis. J Clin Microbiol. 2003 Nov;41(11):4955-60.

Jansson C, Carlsson SA, Granlund H, Wahlberg P, Nyman D. (2005). Analysis of Borrelia burgdorferi IgG antibodies with a combination of IgG ELISA and VlsE C6 peptide ELISA. Clin Microbiol Infect. 2005 Feb;11(2):147-50.

Mogilyansky E, Loa CC, Adelson ME, Mordechai E, Tilton RC. (2004). Comparison of Western immunoblotting and the C6 Lyme antibody test for laboratory detection of Lyme disease. Clin Diagn Lab Immunol. 2004 Sep;11(5):924-9.

IMMUNE COMPLEX TESTING

Brunner M, Sigal LH. (2001). Use of serum immune complexes in a new test that accurately confirms early Lyme disease and active infection with Borrelia burgdorferi.
J Clin Microbiol. 2001 Sep;39(9):3213-21.

Brunner M. (2001). New method for detection of Borrelia burgdorferi antigen complexed to antibody in seronegative Lyme disease.
J Immunol Methods. 2001 Mar 1;249(1-2):185-90.

Schutzer SE, Coyle PK, Reid P, Holland B. (1999). Borrelia burgdorferi-specific immune complexes in acute Lyme disease. JAMA. 1999 Nov 24;282(20):1942-6.

Coyle PK, Schutzer SE, Belman AL, Krupp LB, Golightly MG. (1990). Cerebrospinal fluid immune complexes in patients exposed to Borrelia burgdorferi: detection of Borrelia-specific and -nonspecific complexes. Ann Neurol. 1990 Dec;28(6):739-44.

PCR (serum, blood, CSF, urine, etc).

Exner MM, Lewinski MA. (2003). Isolation and detection of Borrelia burgdorferi DNA from cerebral spinal fluid, synovial fluid, blood, urine, and ticks using the Roche MagNA Pure system and real-time PCR. Diagn Microbiol Infect Dis. 2003 Aug;46(4):235-40.

Pleyer U et al. (2001). Detection of Borrelia burgdorferi DNA in urine of patients with ocular Lyme borreliosis. Br J Ophthalmol. 2001 May;85(5):552-5.

Lunemann JD et al. (2001). Rapid typing of Borrelia burgdorferi sensu lato species in specimens from patients with different manifestations of Lyme borreliosis. J Clin Microbiol. 2001 Mar;39(3):1130-3.

Mercier G, Burckel A, Lucotte G. (1997). Detection of Borrelia burgdorferi DNA by polymerase chain reaction in urine specimens of patients with erythema migrans lesions. Mol Cell Probes. 1997 Apr;11(2):89-94.

Priem S, Rittig MG, Kamradt T, Burmester GR, Krause A. (1997). An optimized PCR leads to rapid and highly sensitive detection of Borrelia burgdorferi in patients with Lyme borreliosis. J Clin Microbiol. 1997 Mar;35(3):685-90.

Phillips SE, Mattman LH, Hulinska D, Moayad H. (1998). A proposal for the reliable culture of Borrelia burgdorferi from patients with chronic Lyme disease, even from those previously aggressively treated. Infection. 1998 Nov-Dec;26(6):364-7.

Whitaker, J.A., Mattman, L.H., Marlowe, S. (1999)
In a preliminary study 25 patients with a diagnosis of primary Fibromyalgia (FM) were found to have positive blood cultures for Borrelia burgdorferi (Spirochete), (Bb), the causative agent for Lyme disease. Association of Rheumatology Health Professionals [Abstract]

Whitaker, J.A., Fort, E.G., Dopson, M.H., Mattman, L.H., Marlowe, S.M. The
New Great Imitator: Lyme Disease (LD). Biotecnologia Habana 99, Havana, Cuba, December 1, 1999. [Abstract].

Participated: Lyme & Other Tick-borne Diseases: Focus on Children & Adolescents. Presented by the Lyme Disease Association, Inc. Princeton, New Jersey, November 4, 2000.
Whitaker, J.A., Fort, E., Mattman, L, Hockstra, P. (2001) A New Whole Blood
Method to Identify Borrelia burgdorferi, the causative agent of Lyme disease. Manuscript presented for Publication: Laboratory Medicine.

quote:

---

Originally posted by Alexbabets:
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.

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.

---

Does anyone know if there is any truth to these statements above from the CDC and FDA?

They only mention that "some" labs are conducting improper testing and only "some" labs did not publish in peer reviewed journals.

Does anyone know which labs they are talking about?

If at one hand the CDC says that LD is a clinical diagnosis, it seems weird that it would purposely discredit otherwise credible Lyme labs.

So could there be some truth behind this?

And even more importantly, don't we Lymies want these tests to be properly conducted, and therefore shouldn't we be equally concerned about the accuracy about these tests as we are concerned about the labs credibility being tarnished?

Is this indeed the reason why labs such as Quest and Labcorp have a hard time generating positive WBs?

Alex

Letters to the editor on an ongoing basis.

Do you have an alternative newspaper in your town ? Get some lyme info in there.

I'm assisting a lyme support group rep, in setting up a live radio interview.

Call local talk radio stations, and request to get on. Call Christian radio stations, as they do shows on holistic or biblical based medicine all the time. Request on air interviews.

I e-mailed Dr. Ward at the CDC, for all the good it will do. Will I make a difference ? No. Will 100,000 of us ? Yes !

The greatest campaign ever launched to defeat legislation in Washington was initiated by who ? Pharmaceuticals ? AMA ? Oil companies ? NO !!!!!!

Home schoolers !

About six years ago Rep. George Miller [CA.] introduced a bill to make sure that anyone who taught children academics were licensed properly. This would have effectively shut down home schooling. There's a million and a half HSers in this country. About the same number of lyme victims. Home school mom's flooded D.C. with phone calls and literally shut down the Capitol Hill switchboard for 3 days ! Guess what the final passage tally was on Miller's bill ? Yep, you guessed it.
434 No's, 1 yes. LOL

Home schooler's are organized, listen to the same talk radio stations, same newsletter, networks, web sites.

Do you know of a lyme yougster with a success story ? Get them on TV or a newspaper article published. You need to keep the politics of this disease in front of the public. Repetition !

You know why they keep running the same ads over and over again ? It works ! People are 50% more likely to act on something after they've seen it for the 4th time ! This is proven marketing strategy.

Think dove soap is any better than the stuff Grandma bought ?

quote:

---

Originally posted by Alexbabets:
Michael,
I think the whole statement you refer to is arbitrary. Sounds like they are trying to discredit all Lyme test except the one the CDC put together with Dr. Steere in Atlanta a couple of years ago when they knocked out several bands on the Western Blot known to indicated a Bb infection. The truth is they don't want it to be known how prevalent Lyme is in the US. However, I don't know how they can keep the truth from coming out. Hundreds are being tested and diagnosed with Lyme everyday.

---

Alex,

Yes, this is what is so peculiar wrt CDC.

At one hand they acknowledge that some ~25,000 people got infected with Lyme this year but that they believe the real number if more like ~250,000.

This proves, to some extent, that they accept the scale and pervasiveness of the disease.

Secondly, they acknowledge that Lyme must be diagnosed clinically.

Thirdly, they acknowledge that Lyme may become chronic if not treated early on.

Then on the other hand they have the stupid WB criteria, which is beyond my belief why that still rules.

I don't think the CDC is as much of an enemy as we might think it is.

I think there are both friends and enemies of Lyme in the CDC.

We know where Steere belongs. And if he still has some influence on CDC and the WB criteria, then that may expain why the WB is still so archaic.

They are only recommending two test Enzyme immunoassay (EIA) or immunofluorescent assay (IFA)...if either on of these is negative you stop testing ....however if one is positive then you move on to the second test the standardized Western Immunoblot assay with the specific bands they recognize for a positive test.
There is more:
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".

The above statement clearly points out the the 'clinical' presentation is only considered after the use of validated laboratory test that they previously stated.

Do you follow this? The CDC is saying only those who fit this narrow proof of a positive in testing should be diagnosed with Lyme.

Am I wrong in this interpretation? Please correct me here, if I am? This is crazy!

i brought this up once before, but no one responded....perhaps for reasons I'm not aware of.

Hasn't there ever been any class action suits to try to contain the damage that continues to be unleashed on the lyme community?

The gov't, the CDC, the insurance companies, the ducks -- they absolutely know what is going on. Why can't we push back? I believe we have the intelligence and I believe we have the sheer numbers that we need to do so.

Perhaps, I come across as naive. I don't want to come across as this naive, uneducated newcomer. Neither do want to sound upappreciative of all of the work that the advocacy groups have done to date. I am grateful for the efforts that have been poured into this cause.

As I have said before...the CDC knows everyone of us who was tagged by them in the 80's or later as having lyme disease. They know who is still sick. Others are aware as well. How do we play hardball?

This has gone on far too long. I believe we have a significant powerbase right here in front of us (give or take a few who choose to undermine lymenut).

As I have read the posts over the past few months I have come to appreciate the intelligence, the compassion, the knowledge regarding LD, the shared experiences and frustrations, and the commradary.

Our power base is in our numbers, the intelligence of this group, the education of this group regarding this topic, and especially the passion regarding this topic because of the level of humilation and suffering that we have been regularly exposed to. And, we know that people are dying from lyme.

Ultimately, I believe that I will die from a lyme complication. I am not a pessimistimic person. I am a realist. There has been major damage done to my body in the past 20+ years with lyme disease running loose in my organs. However, having said that, I do not want my experience and eventual death to be in vain.

Until then, I have a lot of work to do. I will move on with the next round of antibiotics and will go through the equivalent of a 3-4 year battle of a chemo-like experience and that I will have better health than I do today.

The threats that we continue to endure really get me going. I don't want to take the intolerance, the injustices, the cruelty, the neglect anymore...and yet I don't know what to do from here. The only thing I have at the moment are my words. And, I'm not sure I can even count on these. Do they make sense? I am confused some days. Other days I am lucid. Somedays I am overly emotionally, other days I am calm and accepting. I may not like the terms, but I am dealing with them (some days).

Then on days like this I am almost speechless. The kind of threat from the CDC is incomprehensible. I am a fighter. But who is the enemy? Once we narrrow this down, do we have a shot at a fair fight? I'm not sure our civil letters, phone calls and emails are working.

We need to fight. Again, I am asking, because I don't know the answer. Has anyone persued a class action type of suit against ANY of the agents that continue to threaten us? If not, why not? We are getting pummeled. Our children are innocent bystanders. I am not just sick. I am sick to death of being treated so poorly by the entire system. Our numbers are large enough to do something legally. I would like to try something more peaceful, however I can't march on capital hill and I believe that time is running out for me. Thanks for hearing me out.

If anyone has any legal experience what-so-ever, please help us to understand what our rights (if any) are in defending ourselves from any further attack.

Paisley

I know that this post will most likely come across as one of the most rambling that I have written, however, tonight I can't rework the words as I do at other times. I need to let the emotions pour forth.

I believe that somewhere, buried, there is some kind of wisdom that will guide us toward the defense we need to fight for our lives.

There are opportunities. I believe there is a Civil Rights Claim against them. I have spent the past 5 months researching all aspects with several leading attorneys.

They truly are negligent, so many of their documents are contradictory and they use outdated data in thei communications. Maybe this occurs because size of the organization is to big, maybe it is incompotence, or maybe it is sinister behavior, who really knows.

I have said as well as many others on here that we need to get out there an educate the public. When the public understands and gets angry changes will take place. We need to reach some critical mass.

I know I have been acting pretty much on my own. I do stay in touch with some leading people, but it has been hard for me anyways to get into a group.

The point being I think we all want to be the one to make the major breakthrough. I really wish we could come up with a better way to do this. We really do need some debate and that is real hard to do when you can not meet face to face.

quote:

---

Originally posted by hwlatin:
I have always said the CDC is where we need to start. They are the ones that have the power to make changes. They refuse to act for what ever reason.

Paisley: I agree. As I have said before, they are the Center for Disease Control. As their own title suggests - they are missing something because by not educating the public better, and actually now working against us, they are not controling disease as their organizational title implies. Actually, what's the opposite of disease control, because that is what they seem to be doing. Why are they not doing their job? Aren't they the agency that should be looking out for the publics' interest? If so, they are not doing this.

I believe that they are COMPLETELY aware of what they believe to be the "true estimates" of lyme disease. Are they not being accountable because we are not really on the radar screen? I don't think so. I think they are evading the issue because it is complex; they are hiding behind someone else's skirt; and no one that I am aware of has put up a really big stinck yet. I could be wrong about this last point. If so, please inform me.

There are several reasons that I think that they are much more aware of what is going on 1.) about 7 yrs. ago I received a letter from the CDC informing me that there may have been a chance that I contracted Hep. C because of a blood transfusion. If they were to error on the side of caution - they should be taking the same approach towards lyme disease. Anyone who has received any transfusions should be warned or informed and then tested (properly for lyme) and there should be a public awareness campaign by the CDC regarding the possibility of receiving lyme via blood transfusions and organ donor programs. 2.) I believe this agency has lost the essence of its true purpose. For example, a friend of mine had a baby. The baby was not thriving properly after two years so one of the relatives got very involved in taking the baby to the best drs. to find out what was wrong (the parents were not as proactive because they were also not thriving). As it turned out the baby and parents had HIV. I learned that when the baby was born, there was a special test performed to find out if the baby had HIV and then this info. was sent to the CDC. Guess what ? No one ever contacted the parents to let them know tha the baby was ill. Two years were wasted which could have been spent on treatment for the baby. Tragically, two years were also wasted in treating the mother who had passed this on to the child, without knowing - she had no idea she had HIV.

The CDC never thought it was important enough to inform this family of the disease that they were aware... the point of the blood test at birth is for statisticical tracking only. That is a disgrace.

And similarily that is what is happening to Lyme disease. As I said, they know who has it. Even if we don't. When I was diagnosed back in the '80s, I did some follow up and was able to speak with someone at the CDC - they actually remembered my name because I was one of the first cases that came in from my state and, the presentation had been so unusual. I am in their system. They know that their is chronic lyme, but since they were part of the "system" that seems to have started policy regarding early lyme they know that lyme has been ravaging my body for all these years.

True it is up to me to take care of myself. But this is just about impossible to do when I have traversed the country seeking specialists who all pointed in the same direction - out their door with a medication for psychiatric symptoms if I thought that might help. Drs. won't treat me because of the criteria that the CDC sends out to the medical establishment; heck, they won't even test me properly.

It seems as though they have us in a holding pattern until they can figure out what to do with us. I guess it is going to get easier when we all have lyme and completely burden and already burdened system.

There are opportunities. I believe there is a Civil Rights Claim against them. I have spent the past 5 months researching all aspects with several leading attorneys.

Paisley: Please, how do I get involved with this. Again, in numbers we will have a bigger voice.

They truly are negligent, so many of their documents are contradictory and they use outdated data in thei communications. Maybe this occurs because size of the organization is to big, maybe it is incompotence, or maybe it is sinister behavior, who really knows.

Paisley: Bottom line is that this agency is not holding up to their responsibilites. Someone (this entity) is accountable. And if it is not working then it needs to be overhauled. Someone in the gov't has to have the guts to set this in motion. Someone in office or an up-and-comer who has the courage to take this on and truly believes that this is an issue of epidemic proportions.

I have said as well as many others on here that we need to get out there an educate the public. When the public understands and gets angry changes will take place. We need to reach some critical mass.

Paisley: I agree with you except for two minor points. We have been trying to educate the public. The bigger media groups are not really getting the story right or are not giving it enough emphasis.

They too are not aware - perhaps because not enough have been to the ER with a meningitis type illness to scare them into real story-telling versus fluff pieces. Most likely it will have to be tackled by an independent.

Secondly, we are the public, we are mad, adn I believe we are that critical mass. Now what?

I know I have been acting pretty much on my own. I do stay in touch with some leading people, but it has been hard for me anyways to get into a group.

Paisley: I agree, no one person can do this on their own. How do we organize as a group to do something?

The point being I think we all want to be the one to make the major breakthrough. I really wish we could come up with a better way to do this. We really do need some debate and that is real hard to do when you can not meet face to face.

Paisley: Since you have research that you have been doing regarding civili rights what can I do to contribute?

---

"CDC 'Ticked' At Lyme Disease Rise
FORT COLLINS, Colo., May 17, 2004

Lyme disease has climbed to its highest level on record in the United States, in part because more and more homes are being built in the woods, the government reported Thursday.

During 2002, a total of 23,763 cases were reported to the Centers for Disease Control and Prevention -- up 40 percent from the previous year.

"It is the highest number that we've had so far," Dr. Erin Staples, a CDC researcher, told CBS Radio News, calling the rise alarming.

Lyme disease bacteria are transmitted to humans by ticks that are carried by deer. The CDC attributed the rise to "better reporting, better recognition by physicians, people are spreading into tick habitats ... some increase in the deer population that carries the tick, as well as you're getting some spread of the ticks themselves," Staples said.

Lyme disease was named in 1977 when a cluster was identified in Lyme, Conn. The 2002 cases were mainly in the Northeast, mid-Atlantic and north-central states. Only Hawaii, Montana and Oklahoma reported no cases in 2002.

There are simple things that you can do" to lower your risk, "like using insect repellent containing Deet," said Staples. "We recommend daily tick checks. If you're able to get it off within 24 hours of it first biting you, you seriously decrease your risk of getting Lyme disease."

The disease is often identified by an expanding "bulls-eye" rash that develops days to weeks after a tick bite. ``Often when you have this rash, there are symptoms that accompany it,'' reports The Early Show medical correspondent Dr. Emily Senay. ``They can be fatigue, muscle ache joint pain, and fever. Now, if it goes untreated, this can become a much more serious disease with neurological symptoms that can be severe. Treating it early on is key.''

If untreated, the disease can cause joint swelling and brain inflammation.

If you have the rash, it is possible that the tick is still present, but Senay notes, ``very often people don't even realize that they've been bit by the tick. And just because you've been bit by a tick does not mean you will get Lyme disease. The actual transmission rate is probably a lot lower than many people think.''

Antibiotics are used to treat Lyme disease."

Unfortunately, attorney's that do class action suits prefer slam dunks or cases that are already in the news. Alot of time and reasearch must be done and they want to recoup their overhead and make a pretty buck, which is fine with me. It is possible that if a topic is in the news they will grab onto it. They like squeaky wheels.
That is why I suggested we tie up the phones at the CDC, Congress, and then contacting key newspapers of what's going on. If we bring this ammo into an attorney's office they would be more inclined to take the case.

Lisa

quote:

---

Originally posted by Paisley:
This was posted in 'general' earlier today and here was my response:� �� ��

i brought this up once before, but no one responded....perhaps for reasons I'm not aware of.

Hasn't there ever been any class action suits to try to contain the damage that continues to be unleashed on the lyme community?

The gov't, the CDC, the insurance companies, the ducks -- they absolutely know what is going on. Why can't we push back? I believe we have the intelligence and I believe we have the sheer numbers that we need to do so.

Perhaps, I come across as naive. I don't want to come across as this naive, uneducated newcomer. Neither do want to sound upappreciative of all of the work that the advocacy groups have done to date. I am grateful for the efforts that have been poured into this cause.

As I have said before...the CDC knows everyone of us who was tagged by them in the 80's or later as having lyme disease. They know who is still sick. Others are aware as well. How do we play hardball?

This has gone on far too long. I believe we have a significant powerbase right here in front of us (give or take a few who choose to undermine lymenut).

As I have read the posts over the past few months I have come to appreciate the intelligence, the compassion, the knowledge regarding LD, the shared experiences and frustrations, and the commradary.

Our power base is in our numbers, the intelligence of this group, the education of this group regarding this topic, and especially the passion regarding this topic because of the level of humilation and suffering that we have been regularly exposed to. And, we know that people are dying from lyme.

Ultimately, I believe that I will die from a lyme complication. I am not a pessimistimic person. I am a realist. There has been major damage done to my body in the past 20+ years with lyme disease running loose in my organs. However, having said that, I do not want my experience and eventual death to be in vain.

Until then, I have a lot of work to do. I will move on with the next round of antibiotics and will go through the equivalent of a 3-4 year battle of a chemo-like experience and that I will have better health than I do today.

The threats that we continue to endure really get me going. I don't want to take the intolerance, the injustices, the cruelty, the neglect anymore...and yet I don't know what to do from here. The only thing I have at the moment are my words. And, I'm not sure I can even count on these. Do they make sense? I am confused some days. Other days I am lucid. Somedays I am overly emotionally, other days I am calm and accepting. I may not like the terms, but I am dealing with them (some days).

Then on days like this I am almost speechless. The kind of threat from the CDC is incomprehensible. I am a fighter. But who is the enemy? Once we narrrow this down, do we have a shot at a fair fight? I'm not sure our civil letters, phone calls and emails are working.

We need to fight. Again, I am asking, because I don't know the answer. Has anyone persued a class action type of suit against ANY of the agents that continue to threaten us? If not, why not? We are getting pummeled. Our children are innocent bystanders. I am not just sick. I am sick to death of being treated so poorly by the entire system. Our numbers are large enough to do something legally. I would like to try something more peaceful, however I can't march on capital hill and I believe that time is running out for me. Thanks for hearing me out.

If anyone has any legal experience what-so-ever, please help us to understand what our rights (if any) are in defending ourselves from any further attack.

Paisley

I know that this post will most likely come across as one of the most rambling that I have written, however, tonight I can't rework the words as I do at other times. I need to let the emotions pour forth.

I believe that somewhere, buried, there is some kind of wisdom that will guide us toward the defense we need to fight for our lives.

---

http://www.lymeinfo.net/marylandlymedisease.html

I also think it would be more effective, if the ENTIRE original posts in bold, were not used, but merely use the POST REPLY at the top or bottom of the page boxes were used.

It makes it harder to read the NEW info vs. stuff we've read over & over .. thanks for your consideration so we can all use our limited time more effectively.