posted
Alot of patients will definetly,be denied treatment now,,Now that lyme is no longer a clinical diagnosis.And it wont be long before they come down hard on LLMD's.Wormsler wins again,he just put out a papper that stated if your elisa was negative,you did not have lyme.Now it says on the CDC site,near word for word,what he has said.Igenex needs to validate there test to protect lyme patients,and LLMD's.I have seen on two lyme sites that one from Virginia,and Pennsylvania,are already under investigation.This will be the begining of a long list.I sure hope i'm wrong.
Laboratory Testing Several forms of laboratory testing for Lyme disease are available, some of which have not been adequately validated. Most recommended tests are blood tests that measure antibodies made in response to the infection. These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease.
CDC recommends a two-step process when testing blood for evidence of Lyme disease. Both steps can be done using the same blood sample.
1) The first step uses an ELISA or IFA test. These tests are designed to be very “sensitive,” meaning that almost everyone with Lyme disease, and some people who don’t have Lyme disease, will test positive. If the ELISA or IFA is negative, it is highly unlikely that the person has Lyme disease, and no further testing is recommended. If the ELISA or IFA is positive or indeterminate (sometimes called "equivocal"), a second step should be performed to confirm the results.
2) The second step uses a Western blot test. Used appropriately, this test is designed to be “specific,” meaning that it will usually be positive only if a person has been truly infected. If the Western blot is negative, it suggests that the first test was a false positive, which can occur for several reasons. Sometimes two types of Western blot are performed, “IgM” and “IgG.” Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive.
CDC does not recommend testing blood by Western blot without first testing it by ELISA or IFA. Doing so increases the potential for false positive results. Such results may lead to patients being treated for Lyme disease when they don’t have it and not getting appropriate treatment for the true cause of their illness. For detailed recommendations for test performance and interpretation of serologic tests for Lyme disease, click here.
Other Types of Laboratory Testing Some laboratories offer Lyme disease testing 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 general, CDC does not recommend these tests. Click here for more information. 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.
Testing Ticks Patients who have removed a tick often wonder if they should have it tested. In general, the identification and testing of individual ticks is not useful for deciding if a person should get antibiotics following a tick bite. Nevertheless, some state or local health departments offer tick identification and testing as a community service or for research purposes. Check with your health department; the phone number is usually found in the government pages of the telephone book.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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so... the cdc wants me to go get an ELISA even though my western blot was positive?
what would possibly cause you to have a positive western blot but truly not have lyme?
i read the ny times igenex article like 10 times and never figured out what on earth the article was actually about... what are people alleging igenex does?
has the cdc actually said anything against igenx labs itself? wouldn't they loos their license if they were truly fraudlent?
Posts: 12 | From california | Registered: Sep 2005
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posted
The CDC and NY Dept of Health are on a vendetta against the best labs and docs who treat chronic lyme adequately. This is because they have taken the position that the infection does not persist and that any symptoms after any amount of treatment are "post Lyme syndrome."
There are probably good people working on other diseases at the CDC but the ones who are managing Lyme are terrible. Don't know why the gov't health agencies are so determined to define and persecute this disease out of existence. You would think that having diseases to cope with is what a health agency needs for job security, bureaucracies always empire build.
The only thing I can think of is that if you don't have the answers or there are already too many other things you haven't fixed, it might be better for your reputation to shove a few things off your plate. If there isn't any persisting infection, no treatment is needed, and you can put that one in the mission accomplished pile.
Labs that can actually find the disease better than the average lab can throw a kink in the works, cause people to question the performance of the health agencies.
Once they start down that road, it is pretty hard to back up and take the other fork in the road. No gov't agency wants to admit they were wrong. Until they do, a lot more people are going to suffer for their intransigence and incompetence.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by lou: The CDC and NY Dept of Health are on a vendetta against the best labs and docs who treat chronic lyme adequately. This is because they have taken the position that the infection does not persist and that any symptoms after any amount of treatment are "post Lyme syndrome."
So perhaps the persistence issue needs to become a research focus before they can even address treatment strategies? Is there currently a sufficient number of scientifically sound studies that provide evidence of persistence with post-mortem evidence?
It is clear that researchers and pathologists need to thoroughly begin documenting the presence of chronic infection on post-mortem examination.
This is the type of research that needs to be done and used to validate, discontinue, or change medical practice. This pathological evidence will provide the theoretical framework we need to develop hypotheses and examine the treatment strategies.
Each piece of lumber that the frame of a house comprises must be connected to another piece, as in the relationship between two variables. The frame must rest squarely on a solid foundation, just as the relationship between two variables rests firmly on a theoretical framework. The "fit" must be precise, or the house will fall. Similarly, the theoretical fit must be precise or the prediction made about the relationship of the variables will in all likelihood not be supported through testing of hypotheses.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
I want to write the CDC a letter-send them copies of my 2 negative ELISAs followed by a CDC positive Western Blot from the local lab just 2 weeks after a negative Elisa.
Also explain how ill I I am because of delayed treatment. And how much this is costing in dollars and emotional trauma. Anyone know where I can send this.
I think I'll send a copy to my federal legislators too.
Any more ideas?
This is absurd.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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These people are total idiots. They have repeatedly stated that the tests are to be used for surveillance purposes and that a diagnosis of lyme disease is a clinical diagnosis. So why all this emphasis on testing.
These serological tests are inadequate to say the least. So here they say that if a patient is ill and tests positive by an IGM but not an IGG after a month then the patient does not have lyme disease. This is total nonsense. Where did these fools come from. In the meantime people are still sick and getting sicker and being denied treatment and being misdiagnosed. Of course we all know that it is in your head.
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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posted
Ok, it is time to get organize and quitly march and protest ourselves..... Like the march of the candles for AIDS on the streets of San Francisco years a go.
Posts: 983 | From The sky | Registered: Feb 2005
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posted
This is so insane - and just further PROOF that, despite how fatigued we are with this damn disease - we must gather our strength & appeal to the only people capable of protecting our rights as patients.
As much as I am disappointed in our federal gov't at this point - we still need to push the current bills introduced in both the Senate & the House through to passage.
If you have not written your federal officials about these bills - please do so. It ain't hard.
Type up a form letter, throw in some scary Lyme facts, throw in part of your story & struggle with it, tell them how much you had to spend on medical BEFORE the Lyme was even diagnosed - thanks to the misleading guidance of the CDC, etc.
Just let them know how important it is for these bills to pass, and that you and your entire family will be monitoring how THEY vote!
They need to hear our voices in the thousands!
Geez! I'm #6777 here at Lymenet - which I am assuming I am the 6,777th person to register here.
I know that >7,000 people do not frequent here regularly - heck, maybe some of them are feeling better and think they no longer have it. But if you go into the new & fabulous directory, I'll bet some of the oldies still have their emails on file...hmmm...are you getting any ideas?
If there is any way we can contact some of the 'oldies' who have moved on, and urge them to help write emails/letters - I think we should.
Most of us have family members that support us and want us to get well. Their voices count too!
I know that some of the oldies around here have become rather jaded with regards to Lyme politics because it is so ridiculous, it doesn't seem worth a person's time - but we just can't give up.
I know the nation & the media are focused on the recent disasters in the South - and rightly so...but as soon as the aftermath of Hurricane Katrina has lost some of its media appeal - I think we DO need to approach the media again and again and again.
There has got to be SOMEONE in the media that would love the chance to write a scathing piece of journalism that takes a big bite out of the CDC's ...as a matter of fact, I have met 3 Lymie journalists within just the last month...I think I shall badger the crap out of them!
Meanwhile, might I suggest that you start working on your letters to the media so when the disaster news start slowing down, you can have your letter ready for them to read.
After what we have seen with regards to our gov't bureacracies INABILITY to operate efficiently, I think that some journalist may feel a little safer in writing such a piece - as they will trust that the American people will no longer be so shocked about it!
We need to EDUCATE the media AND our government officials - otherwise the bureaucracies like the NIH and the CDC are going to continue until they succeed in cutting us off from adequate testing, & treatment - and then where the hell will we be?
I just think that it is BS like this, that should ANGER us enough to get off our hindquarters and become more VOCAL about it!
We need to let them know that WE WILL NOT SHUT UP UNTIL THIS DISEASE IS TAKEN SERIOUSLY & TREATED SERIOUSLY.
For now, this is Dr. Wiseass, stepping off the ol' soapbox.....but I guarantee you I'll be back on it again on another day because I don't anticipate the CDC or the NIH or the FDA or ANY governmental bureaucracy getting any more intelligent or efficient - any time soon!
Hugs & and God Bless America,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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posted
You will love this.I saw the new CDC site a couple of weeks ago and read how acurate the elisa is so I wrote a letter to the CDC and asked how accurate it was.They replied(and I have the copy here)the elisa in early lyme is 59 percent accurate,straight from the horses mouth,or straight from the other end since we are talking about the CDC
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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posted
BUT,they feel it is highly accurate,in late stage lyme.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
This is insane!
I attended the NC Lyme Disease Foundation fund raising BBQ today and Denise Lang spoke to us. She wrote "Coping With Lyme Disease". She was SO motivating and said we must speak up and do what we can to get the recognition we deserve. I think we have made some progress, then come home and read something like this? It certainly does sound like a conspiracy. And the US government is involved.
The science is there and we will prevail. But it will take lots of persistence on our part. Everyone must get involved!
Posts: 2276 | From NC | Registered: Oct 2000
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I believe this is a conspiracy and that the government is involved...obviously. The word conspiracy has been targeted to sound as if it refers to science fiction but actually all a conspiracy is...is a plan made by certain people to accomplish something secretly. Our world is run on conspiracies.
My thought is that first we need to inform the public as to the nature of this conspiracy...as far as we can define it...and to bring direct attention to the misdiagnoses that are multiplying out of control. Every day there is a new name for an autoimmune disease or chronic condition that supposedly requires a new symptomatic treatment. We need to reach as many people in the mainstream with hard copies of articles which expose the misdiagnosis and the corruption that goes along with it. We need the massive numbers of misdiagnosed people to recognize they may have lyme. The diversion has been to divide up this illness...with it's coinfections...into many nondescript disease labels which have no known definitive tests, causes or cures. We need to wake people up, inform them on a one to one basis...corporation health fairs, town picnics, tables in or outside our local libraries, outside grocery stores, attend M.S walks with literature that shows the possibility that M.S is Lyme, etc. Instead of sending money to conglomerate charities , let's fund our own charities ...handing out accurate lyme info and info which exposes this corruption. When we are one huge strong voice, then the government will have to listen or we will overthrow it. Our founding fathers have strongly advised that when the government gets too big and controlling and no longer serves the people that it is our right and duty to set it straight.
Posts: 1176 | Registered: Oct 2002
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posted
Doesn't public law 107-116 specifically state that Lyme is a clinical diagnosis?
Also, is the new statement applicable for diagnosis, surveillance or both?
would it make sense to broach the issue from the stand point that substandard testing which has a higher fail rate is a misuse of healthcare services?
If the testing is faulty and has a high rate of false negatives, in any other industry it would be recalled and the money spent would be reimbursed.
It would make sense to pay a little bit more up front for prompt and more accurate diagnosis. I would venture to say that whoever recommends the use of substandard testing and faulty testing procedures is participating and condoning the misuse of healthcare services.
Given that Lyme is an infectious disease, there are also significant health policy issues to consider when the inappropriate and or incorrect testing is encouraged and infectious disease is ultimately underdiagnosed.
Posts: 183 | From US | Registered: Feb 2004
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posted
Daystar frequently posts about conspiracies. The facts about lyme are bad enough. But then she takes off into population control schemes, world gov't, and for all I know, believes in this chemtrails business too.
The fastest way to be dismissed as cranks and nut cases is to include all this other x files stuff. STICK TO THE FACTS!!!!!
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Whoever wrote the CDC crap on the website didn't have his/her LOGIC cap on as according to the site:
quote:2) The second step uses a Western blot test. Used appropriately, this test is designed to be ``specific,'' meaning that it will usually be positive only if a person has been truly infected. If the Western blot is negative, it suggests that the first test was a false positive, which can occur for several reasons
AND
quote:CDC does not recommend testing blood by Western blot without first testing it by ELISA or IFA. Doing so increases the potential for false positive results.
Do they think we're total dumbasses?
That first statement seems to indicate they believe the WB IS valid if it shows a positive...but NOT if we just go straight to that test first?
That does not make sense! How does one's blood sample KNOW that it wasn't tested first with an inaccurate test?
It is illogical - and they think we are too screwed up in the head to SEE it.
I understand the word 'conspiracy' is a scary word in that it SCARES people away but for a governmental agency to try to force feed that pile of horse crap down the throats of the American 'sick' people only PROVES to me that at least at the level of the CDC some kind of PLOTTING of a SECRETIVE nautre IS occuring!
HELL! They can't even make up their mind as to HOW to effectively and LOGICALLY make US look like fools - but that's beside the point.
I COMPLETELY agree with Daystar about the NEED to EDUCATE the PUBLIC about this, the #1 EPIDEMIC in the U.S.!
With all due respect, however, I would suggest that we be selective as to how much we actually use the word 'conspiracy' as some people just can not HEAR anything after the word is used.
I would also like to suggest that to keep Lymenet a peaceful place where we can come together, share our ideas, and hopefully WORK TOGETHER towards some kind of political reform - that we do our best to keep from attacking EACH OTHER.
Notice we have a new Private Messaging feature, and wouldn't it be better for us collectively - and especially for any NEWBIES that come around here to use that medium as a means to spit our negative opinions at one another in PRIVATE?
Hugs &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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posted
The CDC said, "The first step uses an ELISA or IFA test. These tests are designed to be very ``sensitive,'' meaning that almost everyone with Lyme disease, and some people who don't have Lyme disease, will test positive."
And chainsaw Joe said, "I wrote a letter to the CDC and asked how accurate it was.They replied(and I have the copy here)the elisa in early lyme is 59 percent accurate,straight from the horses mouth,or straight from the other end since we are talking about the CDC."
So which is it, CDC?? "almost everyone" who has Lyme will test positive on the ELISA, or 59% of them??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
After all of my research there's little doubt that the government and their "point men" on lyme have been running a deliberate campaign of misinformation.
They must adhere to the line that lyme is easily cured, really no big deal, in order to keep researchers off of the trail of experimenting with Bb at Plum Island. Intentionally, skewing testing for lyme lowers the number of people with a diagnosis to downplay it's prevalence.
If you want to know how it works, look no further than the law recently passed where it will be mandatory for all school-age children to have a "mental health" exam. As if having 8 million schoolchildren already on dangerous psychotropic drugs like prozac, ritalin, etc. isn't dangerous enough, now they'll be able to place millions more on big Pharma's dole.
N.O.'s is hit with a natural disaster the likes of which we've rarely seen. The Army Corps of Engineers warned for years that the levee's would break in a large storm, yet, funding was cut and reappropriated for Iraq. All politician's share in the blame.
Think people in the next disaster want federal help ? Roving bands of "goon squads" from FEMA, etc. evicting people from their homes at gunpoint, confiscating their firearms. FEMA has turned away aid from multiple sources as they don't want anything interfering with their "martial Law" operation.
People need water, food, evacuation, medical supplies, shelter, and the feds send Body armored troops with guns "locked and loaded". It's a disgrace.
Our elected leaders are turning this country into a Police state-banana republic right before our very eyes, all under the guise of "terrorism".
Over 400 families of WTC are suing the Bush administration because of their prior knowledge and actual complicity in 9/11. Don't believe me ? Zogby did a poll of New Yorkers and 49% believe the Bush admninistration was complicite in 9/11. Why ? Probably, because tens of thousands of New Yorkers witnessed, felt and heard two explosions when the towers came down.
Why ? Gave them the reason for invading Iraq and seizing their oil, establishing American military bases in the middle east, and passing draconian laws [Patriot Act] that can stifle dissent.
Remember the "Maine" got us in the Spanish-American war. The ship was never attacked, but had a coal fire explosion. The Maine was the rallying cry to initiate war.
Gulf of Tonkin ? Never happened, but Johnson used it to start a war with Vietnam.
Reichstag Fire ? Hitler's own brown shirts set the fire, blamed it on "terrorists" and assumed dictatorial powers.
Hitler had his own troops shot upon at the Polish border, to justify the invasion of Poland.
History and evidence has shown that Roosevelt had prior knowledge of Pearl Harbor, and allowed it to happen to drag us into WW2. These are all researched/documented facts.
So yes, conspiracy theories are a reality. George Bush's first term assistant economic advisor, has stated, on public record, that she believes the Bush administration was involved in 9/11. A member of Bush's own cabinet !
Does it really seem like such a stretch that the CDC is covering for "germ warfare" researcher's who manipulated Bb ?
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Many interesting things said here. What I'm wondering is, what can we/should we do about it?
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
The CDC's stance seems to be a major contradiction of the public law 107-116. I think this law should be referenced in any correspondance with the CDC and in the case of the PA and VA LLMDs who are under attack. From http://www.lyme.org/legislative/publaw107116.html
This is the wording that was passed by the Senate (11/06/01, 12/20/2001) and House (10/11/01, 12/19/01) and included as part of the final bill was signed into Public Law by President George Bush on January 10, 2002.
Centers for Disease Control and Prevention Lyme Disease
The 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 ensure that all adverse event reports are thoroughly and expeditiously investigated to ensure public safety as the vaccine is being distributed. Investigators 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. The vaccine clinical trial has documented that more that one third (36 percent) of the people with Lyme disease did not test positive on the most sophisticated tests available. The ramifications of this deficit in terms of unnecessary pain, suffering and cost is staggering. The Committee directs CDC to work closely with the Food and Drug Administration to develop an unequivocal test for Lyme disease.
The 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 healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases. The CDC is encouraged to aggressively pursue and correct the misuse of this definition. This 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. Currently there is just one definition (`confirmed case') of seven possible categories. By developing other categories while leaving the current category intact, the 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.
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
National Institutes of Health - Office of the Director Lyme Disease The Committee recommends that the NIH improve its communication across Institutes in order to better coordinate Lyme disease research and outreach to public and private scientists with the goal of stimulating research interest in this field. The Committee encourages the Office of the Director to involve NIAID, NHLBI, NINDS, NEI, NIMH, and NCCAM in promising areas of research. The Committee urges NIH officials to identify appropriate NIH advisory committees for Lyme disease representation and ensure the appointment of qualified persons. The NIH is encouraged to include a broad range of scientific viewpoints in the process of planning and executing these efforts, including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates.
Social Security Administration The Committee understands that some patients with Lyme disease and other tick-borne disorders have encountered some difficulty when applying for assistance through SSA offices, due to SSA employees' unfamiliarity with these illnesses. SSA is encouraged to work on developing educational materials for SSA employees to facilitate a better understanding of the potential debilitating effects of these disorders. The Committee suggests that SSA collaborate with clinicians who have expertise on the multi-system chronic effects of Lyme, as well as patient and voluntary communities, to accomplish this goal."
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
I beg your pardon, but I was not attacking daystar, just giving some background about her previous posts. Be careful about who you defend without having all the facts.
I don't really have time to go back and find quotes from her material, but if you look you will find her saying that diseases like lyme were deliberately spread as a world population control measure, that somehow lyme is involved in trying to institute a world gov't, and such like.
If we stick just to the obvious kinds of malfeasance, such as the idiocy represented by what they write about lyme testing, we would be on firmer ground. I get very downhearted when people gallop off on these missions, that can so easily be brushed off because they include a lot of charges the general public would consider disqualifying for serious attention.
Posts: 8430 | From Not available | Registered: Oct 2000
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Thankyou for posting the link to that article Lou but this link is the full version. The other one had some of the lines cut out
posted
Well, I am just thrilled to be able to read more of Daystar's writing!
I think it takes courage to research & report ideas that area seemingly 'forbidden'.
I think that we, as Americans, have been trained to believe whatever we are told by the media, by advertising, and by our own government.
I think it takes great courage to STAND UP and say, "Excuse me - but NO!"
Daystar may have opinions that others do not hold - but I think her courage, dedication, and talent should be acknowledged.
And it will take people like Daystar to STAND UP and say, "Excuse me - but NO - Lyme IS a chronic infection and WE the people EXPECT our government to FESS UP and STRAIGHTEN UP!" if we are ever going to get all of our needs met with regards to this disease!
And until more people start doing that - we will just continue to have these dialogues here at Lymenet, and other boards - where we bemoan what the government is doing - or NOT doing on our behalf - yet it will just continue, and we will only get sicker, and our numbers will only continue to GROW!
I understand that the thought of 'conspiracy' is scary, and yes, I agree, that word alone will scare the bejeezus out of many.
But we all have our own approaches - and what Daystar is doing with her writing is far more courageous than what we do here - where we just p*ss and moan about our problems and our anger at the bureaucrats at the CDC & NIH, etc.
I understand that this dialogue has now somewhat changed from the intent of the thread - so I will therefore stop.
In closing, I would just like to say:
Daystar, you conspiracy theorist, you - I applaud you! BRAVO!
Now let's all and make up, otherwise, divided we.... and that's not very productive!
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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posted
"Daystar frequently posts about conspiracies." I believe that Daystar seems to have researched her material and opens the door to new ideas. I would hope that I am open-minded enough to entertain any new information presented and should that information not check out, I believe I am intelligent enough to choose not to read anything further. I would hope that this group of people here are the same and as long as it is not against the rules, the authors be allowed to post what they have read, heard, learned, or thought -- without rude and derogatory comments.
"The facts about lyme are bad enough. But then she takes off into population control schemes, world gov't, and for all I know, believes in this chemtrails business too." That is so inflammatory. It is a fact that you do not know whether Daystar believes in chemtrails. Does it matter? It is a fact that there are things none of us know, but will only learn by listening and researching. Therefore, if we are not presenting research, perhaps we would fair better to listen. Again, we are free to believe what we like, ask questions when in doubt, and ignore what we feel is not worthy of our time. However, your comments seemed to be a way of trying to discredit Daystar in order to sway others into believing what? You? Your ideas? Your research? If so, please present your ideas and research so that we may make our own assumptions and comments, but unlike, I hope, the type you felt compelled to do openly regarding Daystar. Perhaps you have research or other information that might be presented here that would make me feel sure that you are knowledgeable about chemtrails, conspiracies, etc. As I stated, I am open-minded enough to entertain what others write.
"The fastest way to be dismissed as cranks and nut cases is to include all this other x files stuff. STICK TO THE FACTS!!!!!" Gosh, the punctuation you have choosen feels hostile. Is there any reason that capital letters were necessary? I believe that is considered screaming, in computer language. So, screaming is okay, but presentations, if they differ from say your ideas, is unacceptable? I don't believe that this was stated in the rules. Did I miss that part? Perhaps if we behave like adults and allow each person their freedom of speech within the guidelines of this site, we would find that we are all on the same side -- finding information, no matter how far-fetched, about Lyme disease and the co-infections. Conspiratorial or otherwise.
Posts: 3 | From North Carolina | Registered: Sep 2005
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posted
Yes, we need to stay united, but must stick to facts & data or we lose credibility. Sadly, anecdotal accounts are dismissed as irrelevant. We have all seen this.
It is looking like we will need to fund our own research with double blind studies, or we will continue to spin our wheels with mainstream medicine.
Ernie
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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posted
Someone ask them the same question I did and lets see if you get the same reply.I would like to post the reply so you could see the 59 percent accuracy in early lyme(what a contradiction).I dont have it in my old mail as it only holds a few days old,anyway to go back farther in my old mail and then post it?Heres what I wrote them word for word so someone try and lets see if you get the 59 percent early lyme reply.To the CDC"Hello,I was reading under the CDC labratory testing for lyme and it says the Elisa test is very sensative and that almost everyone who has lyme will test positive,could you please tell me how accurate it is?I would appreciate it very much".I could type the reply but its a page long and that would take me a day(but I could).I would rather post it so you could see its from the CDC.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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posted
In 1997, the military already believed that a negative Elisa deemed it unnecessary to proceed with a Western blot. A positive Elisa result gave you only 10-days antibiotic treatment with a side of no compassion. It was termed a chronic illness by the military, but there seems to still be some controversy about this in the civilian world. No one appears to be on the same sheet of music.
Posts: 3 | From North Carolina | Registered: Sep 2005
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posted
Hi all. This is getting very scary. If we don't do something about all this, we can't expect our llmds to stick their necks and lives out for us.
1. Let's try to stay positive and remember that we got the NY bill passed that will no longer allow harrassment of docs treating lyme. A similar one year bill was passed in Rhode Island.
2. Could we have some info from the patients of the llmds in PA and VA who are being harrassed so that we can direct letters to the Medical Commisions, which can then be forwarded to the appropriate representatives in these states.
3. Could someone who knows how please look up which representatives are on the appropriate committees in these states so we can begin to bombard them with calls and letters.
4. It seems to me that when you get to the federal level, real organization is needed. We already have two organizations: ILADS has the experts; and, hopefully, the Lyme Disease Assn. could work to pull it together. I'm no political scientist, but I think we need to work towards a congressional hearing like the one on stem cell research with as many of us present as possible. BUT, on the way to this, we need to protect our llmds or there will be nobody left to treat us.
We all know this harrassment is coming from the insurance companies. Don't forget there are more insurance lobbyists in D.C. than there are congresspeople.
Let's get started.
tj
-------------------- tj Posts: 296 | From Portland, OR | Registered: Jun 2003
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
SueLymer97,
Is there any documentation you could point me to which supports the comment you just made about the military and they consider Lyme chronic?
I would love to have that on file.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
Thank you, Treepatrol. Let's all get on this one THIS week. If we all do this in the same week it will definitely have an effect.
When I called about the NY bill during each alert, by the time I called during the last alert I didn't even get to finish my sentence on the phone. The aide responded with "I know why you are calling". This does work, but it takes all of us to make it work.
The info on the VA llmd is posted on lymenews, and they are requesting action no later than today, so hope not too many of you are herxing.
Does anyone know who the PA llmd is and any specifics? Can't write in support if I don't have a name.
tj
-------------------- tj Posts: 296 | From Portland, OR | Registered: Jun 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
When I try to click on the PN site I get nothing--can someone just post the phone numbers or emails? I got in on this late today and need to act NOW!!!
Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
In response to the info on the VA and PA bills, state medical bureaus and insurance bureaus etc. are much more responsive when they receive a congressional inquiry-federal level.
Congressional staffers are very busy trying to help people locate Katrina victims, but, it might make sense to write to Senator Rick Santorim (co-sponsor of a Lyme bill) and request a congressional inquiry. Keep it short and simple.
The best way to do it is to write a letter to the state agencies thta you have questions for and forward it along with a brief cover letter requesting response. This makes it easy for the congressional office to help you, and the state offices will jump through hoops to put the 'right' answer in writing.
Government agencies, especially scientific ones, know that congressional staffers are not medical students, so they tend to answer in technical terms because that way, congressional staffers don't understand what they are saying so they can say pretty much anything.
Suggestions for letters:
1. Request answers to questions about PA and VA lyme issues.
2. Request clarification and response from CDC abotu their new Lyme Disease testing-diagnostic web page.
Once again, keep it clear and simple- understandable for the layperson, and have a maximum of 3 issues/questions that you want a response to.
We could even draft the CDC letter online.
Posts: 183 | From US | Registered: Feb 2004
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