Topic: PROTEST! WEDNESDAY, JUNE 27- ATLANTIC CITY, NJ
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The Council of State and Territorial Epidemiologists has found a way to stop the Lyme Epidemic,
By further RESTRICTING REPORTED CASES!
The Council of State and Territorial Epidemiologists (CSTE) will be discussing and voting on an amendment to the national Lyme disease reporting criteria authored by one of its members, Matthew Cartter MD, MPH (CT Department of Public Health) at its national conference.
It will submit recommendations to the Centers for Disease Control and Prevention (CDC) for endorsement. Adoption of this amendment by the CSTE will make case numbers appear to drop, and further hinder diagnosis in areas where Lyme is newly emerging.
LYME RIGHTS is staging a protest to raise awareness about the problems associated with this proposal and to urge CSTE members to vote NO to this surveillance amendment.
PLEASE JOIN US!!
Wednesday, June 27th ~ 12:30PM - 5:30PM
Atlantic City Convention Center, New Jersey
Check in at 11:30 AM
The CSTE Proposed reporting Criteria Amendment will:
Eliminate EM rash as diagnostic in non Lyme endemic areas.
Further restrict current Surveillance criteria and increase under reporting.
Hinder prevention efforts by giving a false sense of security with inaccurate numbers to evaluate true risks in an area.
Result in more undiagnosed cases, more severe chronic infections & LESS funding.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Be there or be square!
More information:
We would like to address some issues that have been circulating on the internet.
As we stated in our letter to the CDC and CSTE, we wish to review our concerns with proposed revisions to the National Surveillance Case Definition for Lyme disease. Matthew L. Cartter, MD, MPH, Epidemiology Program Coordinator Connecticut Department of Public Health will propose revisions to National Surveillance Case Definition for Lyme disease on June 27, 2007.
Strengths of the proposed revisions:
The proposed revisions have incorporated the much-needed probable and suspected case definitions.
The proposed revision expands the laboratory testing criteria to include ``a single-tier IgG immunoblot seropositivity interpreted using established criteria''.
Weaknesses of the proposed revisions:
1. Currently all EM rashes are considered to be Lyme disease. Under the CSTE proposal, EM cases with known exposure will count. But EM cases with no known exposure will require a positive test.
Endemic is defined as at least two confirmed cases which have been previously acquired or in which established populations of a known tick vector are infected with B. burgdorferi. How will this effect counting and patients if the CDC adopts this definition for EM rashes?
a) EM cases in non-endemic counties will no longer be counted as reportable cases by the CDC unless they are confirmed with a positive test. Many counties have not been classified as endemic.
Therefore, people in those counties who develop an EM rash without a positive test might not be treated and would not be counted.
b) If a doctor decides to treat an EM in a non-endemic county, the treatment may prevent the development of a positive blood test which is required for the case to be counted, therefore the case will not be counted.
c) Furthermore, late manifestations defined as Bell's palsy, arthritis, lymphocytic meningitis, and high grade heart block will not be reported to the CDC without strict laboratory confirmation in both endemic and non-endemic counties.
In any scenario we are losing case numbers (state numbers will decrease as well as national numbers), preventing the establishment of the disease in non-endemic areas, patients may not receive treatment and insurance companies will have another tool to refuse payment.
The definition of a probable case of Lyme disease is too restrictive. It precludes any other case of physician diagnosed Lyme without evidence of laboratory infection. The numbers of physician diagnosed cases of Lyme disease including neurologic and psychiatric manifestations cannot be estimated if they cannot be confirmed using strict laboratory criteria.
The suspected cases category undermines the value of mandatory laboratory reporting. States could easily comply their mandatory laboratory requirement without ever contacting a physician merely by reporting all such cases as suspected.
Previously State DPH had to check with physicians to qualify positive cases before reporting them to the CDC. There is no provision for reporting suspected cases nor releasing the data for suspected cases unless a data sharing agreement is signed.
Instead, the revisions explicitly state that ``states and territories will send CDC case data for all confirmed and probable cases. Only fully deidentified case data will be released by CDC to the general public. Other releases require signed data sharing agreements using a format pre-approved by the state/territorial health agency.''
Consequences of the proposed revisions:
The surveillance system for Lyme disease varies for each county and state.
Connecticut's decision to abandon mandatory reporting in 2003 is an example of the consequences of a state changing its surveillance system. The number of cases of Lyme disease in Connecticut dropped by 70% merely by changing the state's surveillance system.
In contrast to Connecticut, California Lyme disease cases have quintupled since mandatory lab reporting was instituted in September 2005. Some counties and states may have already chosen not to report Lyme disease cases unless Lyme disease is endemic to the county.
If so, emerging areas for Lyme disease will remain unrecognized. The suggestion that some counties or states may already have restrictive surveillance systems for Lyme disease should not justify the more restrictive revisions in the National Surveillance Case Definition.
The proposed revisions could worsen the problems of underreporting. Additionally, the perceived risk of acquiring Lyme would be diminished for physicians, the public, and the government.
In summary, a proposal of such significance to public health would be more beneficial when implemented after more thorough research and additional discussion.
Daniel Cameron Robert Bransfield Diane Blanchard Nick Harris Lorraine Johnson Phyllis Mervine Pat Smith Raphael Stricker
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And NO.. I am NOT back online. It is your imagination!
I have over 3,000 emails now waiting for me and many I heard were returned to sender cause my boxes got fulled up... so please give me time to work through what I've got before sending more... otay?
TANKS!!!
Hope you all are fine and dandy! I will check back to hear all the details later if you please.. after the protest.
posted
edited/adding -- is this what the endemic counties per state was all about tincup? please reply.
who are these folks? rest of names i know!
Daniel Cameron Robert Bransfield Diane Blanchard
thx tincup for showing more info what this is all about vs. short notice about the protest in all forums!
good luck to you all. 3,000 emails! tincup, i don't know how you put up w/it .... replying to all sending you, and have a HOME LIFE! you don't huh?! take care my ice cream frend!
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posted
Igenex needs to standardize there test.Show the CDC,how they get so many positives.Then we have a standardized test,and then all states have to report.NO more misdiagnosis,and no more protests.Lyme would be a reality.IT's all that simple.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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posted
They cannot shove this under the carpet anymore -- there are just too many of us!! And more and more daily. And more news articles weekly! And TV... This is getting exciting!
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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Drs. Cameron and Bransfield are prominent LLMDS. D. Blanchard is a major Lyme activist and co-founder of Time for Lyme, the group that raised funds for the center at Columbia.
Please, everyone who can get there by tomorrow, be there for this important event!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
In the past 5 years of Lyme work, on several occasions, I have been mislead into action, which led to negative results and experiences. Because of this fact, I always verify personally any request to action, which I encourage all to do not just for this request, but for any requests no matter who asks.
I encourage all to go to the CSTE site http://www.cste.org/position%20statements/searchbyyear2007.asp and click under "Infectious Disease", then click to view 07-1D-11 by Matthew L. Cartter you can read what they are about to discuss and vote on at the CSTE. What is posted there and the reasons we are being requested to rally here are not in-sync.
I went on the CSTE site, read it three times, then I had medical professionals in the Lyme trenches read it, and we all are scratching our heads. We are extremely concerned about this call to action.
I will try to address the concerns from both posts:
The surveillance case definition for Lyme has not changed; it clearly states the case definition is only for reporting and NOT for a clinical diagnosis.
The CSTE wants to broaden the criteria of reporting to include "probable and suspected" cases, which we never had the luxury of in the past. Probable is defined as a positive test with "ANY" symptoms the doctor beleives are related to Lyme. A "known exposure" is not required, which means non-endemic areas are part of the equation now, and will be counted. Having new categories will pick up many new cases, which helps the problem of inaccurate low numbers of Lyme disease being recognized.
No where does it say that the EM rash will not be pathognomonic for Lyme disease. In fact, EM rashes in non-endemic states were never pathoneumonic and were not included in the reported cases to the CDC.
Treatment might make a person seronegative if tested; that has always been the case.
Lab confirmation and an EM rash is "recommended", but NOT required. This means it is left up to the doctors discretion, which is good because they have NOT removed the "clinical diagnosis" component from the CDC quidelines.
I cut and paste this concern written in the letter below: "The proposed revision expands the laboratory testing criteria to include ``a single-tier IgG immunoblot seropositivity interpreted using established criteria''.
I cut and paste this from the CSTE site that they are referring to. It is not exclusive, it says "or". Also, it allows for future assays to be added.
"For the purposes of surveillance, the definition of a qualified laboratory assay is (1) a positive culture for Borrelia burgdorferi, (2) two-tier testing interpreted using established criteria [1], or (3) single-tier IgG immunoblot seropositivity interpreted using established criteria [1-4]. Additional assays may be added based on periodic review of the scientific literature and strong evidence of comparable or better performance than qualifying assays.
Now...after all this...do not take my word for this, or anyone else's word on this...go and read it yourself.
By the way, I tried to find out more about who was running LymeRights, but they are not forthcoming with names, which is another red flag for me.
It is my sincerest hope that if the names signing this letter to the CDC and the CSTE are accurate, that the individuals will go back and reconsider their position. The CSTE amendment is not "Utopia" for us, but it does have some good steps forward.
We must not become Jim Jones "cool aid drinkers". It seems like if a certain individual in the Lyme community requested the followers to jump off a bridge, the followers would step over one another to jump. It scares me that people are willing to rally without carefully reviewing the information. Don't be afraid to ask questions and respectfully disagree when "YOU" disagree. If you have deep concerns then voice them.
As it stands now, this rally request is not warranted, is going to make us look like fools, and can be very detrimental to us by turning away the advantages of it.
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
KLCST said: "The CSTE amendment is not "Utopia" for us, but it does have some good steps forward."
and a million steps backwards................I, for one, am tired of crumbs.
This is from the document:
"Exposure is defined as having been (less than or equal to 30 days before onset of EM) in wooded, brushy, or grassy areas (i.e., potential tick habitats) in a county in which Lyme disease is endemic. A history of tick bite is not required."
So, you have not been exposed unless you have been in an endemic area. These endemic areas are very limited, and we know there are far more endemic areas than currently named. So, no new areas will be named by the CDC surveillance criteria since fewer people will be diagnosed for surveillance purposes because it is not an endemic area. Can you say circular reasoning?
This is not good. And in my opinion, cannot be construed as such. Do not go for the crumbs ........ because if you do that is all you will get.
KLCST also says: "Lab confirmation and an EM rash is "recommended", but NOT required. This means it is left up to the doctors discretion, which is good because they have NOT removed the "clinical diagnosis" component from the CDC quidelines."
Yes, true it has not been removed. However, many and I dare say, most, of us have had the surveillance critera apllied as "diagnostic" criteria ..... most docs use the surveillance criteria to deny treatment.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"In the past 5 years of Lyme work.. on several occasions, I have been mislead into action, which led to negative results and experiences."
This is why it is fantastic to have the generous assistance of dedicated volunteers who have many years of experience in the community ... and who DO understand what is involved... so no one will be misled by others who are NOT keeping the patients best interests at heart and who only support their own selfish agendas.
"Because of this fact, I always verify personally any request to action, which I encourage all to do not just for this request, but for any requests no matter who asks."
Good advise. I always do this before backing any actions.
"What is posted there and the reasons we are being requested to rally here are not in-sync. I went on the CSTE site, read it three times, then I had medical professionals in the Lyme trenches read it, and we all are scratching our heads. We are extremely concerned about this call to action."
Nice to know you read it three times. Good effort!
BUT... You actually have to really dig deep and have a LOT of background experience (not just medical) to understand complicated issues such as this one. I had trouble too at first... much MORE than I'd like to admit... then after discussing it with the top experts in the field... and thinking about it and writing about it in detail.. and using over 20 years of experience to base my decissions on... I have chosen to support this effort.
"I will try to address the concerns from both posts:"
These concerns have all been addressed above... in my second post under this heading. This should clear up any confusion and end the alleged "head scratching" that I believe may be part of an attempt to discredit yet another effort by folks who are working as hard and fast as they can go to help ALL of us.
I kinda figured someone would re-post this negative stuff .. which is old news now and has been dragged here from other sites because it was NOT supported by most of the Lyme Community there either .. so I went ahead and averted the problems we MIGHT have here by sharing the answers to the negative comments in advance.
"By the way, I tried to find out more about who was running LymeRights, but they are not forthcoming with names, which is another red flag for me."
Lyme Rights has been active for a good while now. They were the ones who organized the NY protest against Wormser, et al... and have an excellent reputation in the Lyme community. I don't think a red flag warning is really necessary simply because they are not advertising their personal information all over the place while doing their good deeds and they prefer to actually work rather than socialize.
I can say I personally know all of them... and have met them all in person on a number of ocassions... except maybe for one person... and they all get a BIG thumbs up in my book. Not many better folks out there... VERY dedicated.. and VERY knowledgable about the issues.
"It is my sincerest hope that if the names signing this letter to the CDC and the CSTE are accurate, that the individuals will go back and reconsider their position."
LONG before these types of decissions are made and actions are put into place the details have been hashed through and many people came together to help make decissions concerning what is best for all of us. If I had any doubts... I would NOT support the effort. And if I didn't agree with their reasoning... I would simply move on ... and hopefully not stick around to kick them for their efforts.
"The CSTE amendment is not "Utopia" for us, but it does have some good steps forward."
There are no good steps forward that I can see.
I liken the whole survailance criteria and these proposed amendments to the CSTE trying to put a bandaid on the neck of someone who just had their head chopped off. The whole thing sucked from day one and is why many, if not all of us, are in this situation. It was revised later on and sucked even more... MUCH more... and another revision is proposed now which sucks even more!
"We must not become Jim Jones "cool aid drinkers".
Isn't that spelled ... Kool-Aid? And I agree. But I don't see death in the future because some Lyme folks care to share their views with CSTE people who will be voting on an amendment which will be affecting OUR lives in such a drastic way.
"It seems like if a certain individual in the Lyme community requested the followers to jump off a bridge, the followers would step over one another to jump."
To save a child .. I would jump. Not many would?
But I am dedicated to helping the community and I am NOT going away... and those who I am supporting have a LONG track record for being one of the few people who are getting things done and who are helping to move us forward in spite of the ducks and the sucky people. AND they VOLUNTEER to do it.
However.. that comment is meant to be an ugly one if I am reading it right?
If that be the case... shame on people for thinking Lyme patients don't have enough sense to also check out what is going on and form their own opinion and act accordingly. Insults or slaps in the face like that will not win you any points.
"It scares me that people are willing to rally without carefully reviewing the information."
Again.. assuming folks haven't taken time to review the information is NOT giving them credit. Putting patients down because they chose to support a certain position and do something positive is NOT very polite... nor is it what we do in America.
"Don't be afraid to ask questions and respectfully disagree when "YOU" disagree. If you have deep concerns then voice them."
Certainly do voice your opinion. But I would hope IF you do.. that you would not just kick others who ARE doing the work without having an understanding of the issues and experience to back it up. And also I would hope you don't make a poorly supported negative attitude a way of life.. as others WILL suffer from it.
And before anyone kicks and screams.. YOU should walk a mile in the shoes of those who ARE doing the work involved and that is required.... AND you should have an alternate plan in mind at least ONCE in your lifetime that is an equal to or a better alternative.
Kicking others ideas and opinions without offering a viable solution in its place makes the person kicking look rather shiftless and stupid, in MY opinion.
"As it stands now, this rally request is not warranted, is going to make us look like fools, and can be very detrimental to us by turning away the advantages of it."
I expect about 20 people to be there supporting Lyme patients rights.. all professionally dressed.. all with a quiet tone and respectable attitude. They will be out there in the hot sun for about 6 hours trying to educate about 850 health department workers from across the country who will be voting on this issue.. in an attempt to have them see that the amendments proposed are NOT in the best interest of patients, physicians, or anyone else.
They will be letting them know that the decissions they make this week WILL affect the lives of millions of people and we would hope they would... especially those in states where there are few or no Lyme cases now.. learn more about Lyme and the affects of their votes on ALL of us.
Or... plan B... we can just sit around and whine. THAT will surely do a lot for the cause.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
While reviewing the current criteria and the proposed amendments.. I wrote out (for myself) what I call the "dirty dozen". These were my rough draft "thinking points" as I was working on understanding the whole situation from a broad perspective.
Maybe the notes below will help folks understand WHY the current criteria is bad and the amendments are not good either.
I have NOT edited this stuff.. as it wasn't planned to be used except as talking points.
Hope it will help.
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Widespread adoption of the proposed CSTE criteria by practitioners, state and local health departments and federal government entities will cause problems by inhibiting officials and health care professionals who otherwise would be free to report and record their findings to be able to determine the number of actual cases that are present in this growing epidemic.
Regarding the CSTE Surveillance Case Definition:
1. The proposed changes are based on previous surveillance criteria which have failed miserably to accurately record the majority of Lyme disease cases during the past seventeen years. The CDC admits for every case that has been reported, at least ten were missed. The proposed ammendments are like putting a band aid on a broken leg and expecting it to get better.
The proposed changes will further reduce the number of actual cases reported. This can give a false impression (Congress, legislators, public) of the severity of the disease and deter acquisition of sorely needed research funding in the future for prevention, tests, studies, treatment, etc.
Some of the normally "reportable" cases will be shifted to two other catagories to save "work" for the health departments. These two catagories figures and totals will NOT be released to the public, to legislators, to anyone... and will remain private in the "system".
This encoutrages those who don't feel like confirming the results.. or those ducks who don't report back when questioned about a submitted report.. or those patients who aren't contacted by the health department to confirm information left off reports to be tossed in a catagory that is NOT counted.
If anything.. those reports that are not complete and that are tossed should be made reportable.. and folks doing the work and responsible for public health should NOT be allowed to toss cases out so easily.
2. The existing surveillance criteria has been inappropriately utilized by health care professionals and researchers over the years to diagnose cases of Lyme disease, determine treatment protocols, create the basis or need for vaccines, determine or expand prevention measures, formulate guidelines and manipulate research funding, often resulting in the delay or refusal of treatment of patients for a serious infectious disease.
The CSTE proposed changes will exacerbate this situation rather than alleviate it.
3. The surveillance criteria has been adopted by the insurance industry as a basis for the denial of actual cases of Lyme disease, chronic Lyme disease and the reimbursement of medical costs related to diagnoses and treatment of both.
4. The criteria changes require a positive lab test result for reporting purposes which necessitates the use of and promotion of unreliable testing methods known to have missed up to 90 percent of people who are infected. It also wastes patients $$ by forcing people to have tests that are known to be inaccurate.. and which also profits individual ducks who have or will have vested interests in the tests.
5. The criteria purposely excludes the use of FDA approved tests currently on the market for reporting purposes (example-Igenex)... yet leaves room to add what I believe to be a new test that has been developed by ducks that is planned to be marketed soon.. and possibly a new vaccine which will use these tests to determine the vaccine results.
This will allow more of a Lymeopoly to develop for the ducks and drug companies... and feed the them MORE big bucks while harming patients in the process.
6. The CSTE criteria requires additional positive lab tests (spinal fluid) for determining cases of neurological disease. These spinal fluid tests have been proven to miss over 90 percent of percent of actual reportable cases.
7. The criteria specifically excludes MANY symptoms which are documented manifestations of Lyme disease, further reducing the number of reportable cases.
8. The changes specify recording cases only from areas previously determined to be ``endemic areas'' and in turn excludes sections of the country (approximately 1/2 of the continental US), which has not been properly researched or defined over the years as being endemic, further reducing the actual numbers.
Before these areas can be considered "endemic" they will need to draft proposals for tick studies.. by people in the health department who actually CARE... fat chance... and will need to budget from the states resouces (tax-payers)funding for the tick study projects for each county and state in the country.
And if ticks are collected that are not infected on any specific day... it will blow the chances and the process will need to be repeated at some point in the distant future. Then the studies will need to be written up, shared, published and sent out to all areas and doctors... and then Lyme disease will need to be legislated to be considered reportable in that state.
This part of the process could literally take YEARS to accomplish... example.. Montana.
In the meantime we would have an abundance of ducks all over the place.. uninformed people all over the place.. and possibly millions of patients being misdiagnosed and suffering... and dying.
9. The criteria dismisses cases of similar "Lyme-like infections" (as described by the CDC) with over 300 known strains of Borrelia (example-STARI).
It also excludes an undetermined number of unknown strains of Borellia... and at least three known spirochetal forms of B. burgdorferi, further reducing total numbers.
If NOT addressed now... then southerners and others across the country will have to do the "Lyme waiting game" all over again and wait for the CDC to recognise the "new strains"... recommend treatment... develop tests.. etc.. before folks are able to get help. This results in the Lyme nightmare going on for many more years to come.
10. The criteria exclude the possibility of the majority of late-stage Lyme cases being eligible for reporting purposes. If a patient isn't tested in the early stages and LATER has a positive test .. they are not counted unless they have certain and VERY limited presentations of late stage Lyme as defined by the criteria.
11. The criteria rely heavily on a rash that is known to be non-existent in approximately one-third to one-half of the reported cases to date... and that has been misdiagnosed repeatedly by health care professionals when it does appear.
12. The changes have been proposed in what has been claimed to be an attempt to lessen the ``burden'' of state and local health departments by reducing their work load for this ONE specific emerging infectious disease epidemic (Lyme), while in turn, it is jeopardizing the ability to obtain true and accurate numbers which would benefit the patients who have the disease and those who will contract it in the near future.
Then it is admitted the changes will NOT decrease the work load.. so what the hay?
Welcome back my friend and thank-you for all you do for us, it is very much appreciated up here
Wish I could be there. We are planning a protest in Ottawa on Sept. 14. Will be there with bells on,and maybe some clothes too, yikes that would be a sight for sore eyes now wouldn't it.
I am its late and I'm not playing anymore tonight
Take care your friend Cassie
-------------------- Posts: 564 | From Toronto Ontario Canada | Registered: Jan 2002
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Your condescending response is pathetic and really beneath you. You do not know who I am and what I do for Lyme each day, and what projects I am working on. What arrogance!
People do not need us to tell them when to support issues on Lyme, which is why I encouraged people to go to the site and read for themselves. Upon reading it people may agree to oppose the CSTE or they may agree with me. Let them decide for themselves! I understand all too well that this does not support your censorship and follow the leader postions. Why can't you just type you disagree and point out specifically why? Don't tell me you don't have time; if you have time to attack me in all those paragraphs you have time to better spend it on just disagreeing and stating why. By the way, neither one of us is going to win the spelling bee tonight.
Can you please cut and paste from the CSTE amendment? I went back and read the amendment again and I do not see where your concerns are corresponding to what was written. I am not being negative, I truly want to discuss this with you.
I tried reading your latest response to the content of the CSTE amendment, and I do not see what you are referring to. I will cut and post what I wrote already because it addresses most of the objections out there and answers them.
The objectional issues with the ducks haven't changed for the worse in this amendment, they remain the same, but there are some issues that have leaned in our favor.
Repost:
The surveillance case definition for Lyme has not changed; it clearly states the case definition is only for reporting and NOT for a clinical diagnosis.
The CSTE wants to broaden the criteria of reporting to include "probable and suspected" cases, which we never had the luxury of in the past. Probable is defined as a positive test with "ANY" symptoms the doctor beleives are related to Lyme. A "known exposure" is not required, which means non-endemic areas are part of the equation now, and will be counted. Having new categories will pick up many new cases, which helps the problem of inaccurate low numbers of Lyme disease being recognized.
No where does it say that the EM rash will not be pathognomonic for Lyme disease. In fact, EM rashes in non-endemic states were never pathoneumonic and were not included in the reported cases to the CDC.
Treatment might make a person seronegative if tested; that has always been the case.
Lab confirmation and an EM rash is "recommended", but NOT required. This means it is left up to the doctors discretion, which is good because they have NOT removed the "clinical diagnosis" component from the CDC quidelines.
I cut and paste this concern written in the letter below: "The proposed revision expands the laboratory testing criteria to include ``a single-tier IgG immunoblot seropositivity interpreted using established criteria''.
I cut and paste this from the CSTE site that they are referring to. It is not exclusive, it says "or". Also, it allows for future assays (tests) to be added.
"For the purposes of surveillance, the definition of a qualified laboratory assay is (1) a positive culture for Borrelia burgdorferi, (2) two-tier testing interpreted using established criteria [1], or (3) single-tier IgG immunoblot seropositivity interpreted using established criteria [1-4]. Additional assays may be added based on periodic review of the scientific literature and strong evidence of comparable or better performance than qualifying assays.
I am beginning to believe that we are going to have to agree to disagree on this issue. It has come down to "All my way or the highway" approach to dealing with making changes for Lyme patients. The choice of using this method from the Lyme leadership has produced very little in advances for us. Government does not deal well with "My way or the highway", it just doesn't work that way.
The baby steps in this bill opens the possibilities for all new testing, not just the ducks, and frankly I don't care who introduces the new testing; I just want it to be better than what we have. The amendment opens the door for us living in non-endemic areas,it gives recommendations but doesn't require, broadens the criteria for reporting, a "known exposure" is not required, and they have changed the wording of excluding symptoms to "Any".
If these amendments are adopted it in no way means we can rest; we will take the baby steps and build on them in the following months or year.
Best wishes-Lisa
PS-The question on who the people are behind LymeRights was not answered. It is very alarming to me that they are not forthcoming. Perhaps they will be more successful if they just reveal who they are. There are people out here that are not comfortable and are very cautious to support a group that can't say who they are.
Posts: 134 | Registered: Dec 2002
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bettyg
Unregistered
posted
FFWF; thanks for telling who those 3 people are! i appreciate it!
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Thanks for posting. Your 12 points are certainly eye openers.
Maybe sometime I will be in the right place at the right time and can actually attend a protest.
Just got back from an 1100 mile driving trip to New York City. Only took 6 days to make the trip. Left with a copy of hubby's SPECT scan films and as usual it is not straight forward. I can't find any info on gray areas on the films -- think these are his brain lesions but not sure. Anxiously awaiting the radiology report.
Found a copy of the new journal article from the Worm on Bartonella in my mail when I got home. Absolutely no mention of ticks as a vector of Bartonella.
It just infuriates me how all the severe neuro Lyme and tickborne patients are "overlooked" by the powers that be.
If anyone attends the protest, please let us know how it turns out.
Bea Seibert
P.S. Local car dealer who sold us our "new" used car spent more time talking to hubby about Lyme and tick-borne diseases than about cars. Turns out he had Rocky Mountain Spotted Fever several years ago and it progressed into Guillian-Barre syndrome. Docs initially told him he was having a panic attack when his legs went numb from the waist down !!!
If a hospital can miss something as obvious as Guillian-Barre syndrome because he is not in an endemic area and "there is no Lyme etc. in North Carolina ... " -- he crossed the state line to go to a bigger hospital.
In my opinion they should just remove the phrase "endemic area" from the guidelines totally.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Cassie dear..
NICE to see your pretty face here again. September 14... wish I could be there. Sounds exciting!!!
Got any details for us? Good to see you are being so active! THANK YOU!!!! Really really really... thank you!!!
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Betty G and Fight Fire...
Betty G... sorry I didn't get back at ya. The 1,200 mile trip up here.. then the planning for the protest had me exhauseted and running behind. Good to see someone was paying attention!
Hey Fight Fire...
Thanks for answering BettyG's questions. I was barely on line.. and I'm still not able to get new emails!!! The others haven't finished down loading yet... so it is tuff going for communicating.
Bee...
OH MY goodness!!!!
That WAS a long trip!!! NO doubt!! I just had one kinda like it and it also takes me DAYS to do them... and forever to recover! NOT fun!!! I hope you are "recovering" now? I had to giggle.. 1,100 miles in 6 days. You are running about neck and neck with me. It takes me 4-5 days to make the 1,00 mile trip.. so we are slow pokes on the run.
As the kids use to tell me.. "Run Forest, run!
And soon I do hope you will join us in a protest or educating capacity or conference. It would be nice to see you!
BUT.. it sounds as if your "educating" is an every day occurance... just like the car salesman episode. I HOPE you eventually got your business done!!! And please note I am always pleased to hear of your efforts for your family and in helping SO many others!!!
Keep up the good work! One by one we WILL make a difference.
Oh.. as for the protest!
I will start another post to share some Protest details.
I will address kcls's concerns later because.. believe it or not I AM too busy right now trying to share other things about the results of the protest... and am trying to confirm some stuff that went on... and I am completely exhausted from this 2 day nightmare trip and the incredible heat.. and I don't have the ability OR brain power left to respond to all three posts at this time.
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who are these folks? rest of names i know!![[group hug]](graemlins/grouphug.gif)
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its late and I'm not playing anymore tonight ![[Roll Eyes]](rolleyes.gif)
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