posted
This is a sister of the thread in the Medical forum: What about if we all sue all at once
The purpose of this topic is:
1.) To find lawyers with chronic Lyme disease--who would understand the "Lyme world" and Lyme patients--for a possible class action lawsuit. Of course, no one expects an attorney to help, who is still too ill. I wish lawyers and their families the very best in healing from Lyme disease.
2.) For we, headed by a lawyer(s), to determine: Against what organization could we file?
3.) To figure-out what would be our united purpose.
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Daise, I don't know any lawyers with Lyme..... but I do have a couple of thoughts on this....
Senator Chuck Schumer from NY was bitten early in the summer, and treated for Lyme Disease. He seems to be an advocate for Lyme legislation, and he graduated from Harvard Law School. He sits on a couple of important committees in the Senate. http://www.senate.gov/~schumer/SchumerWebsite/about_chuck/ac-bio_chuck.html
I just wonder if he might be of any help. I doubt if anyone with Lyme has actually approached him asking about a class-action lawsuit, and if not, maybe somebody should!
There were a number of threads here at LymeNet about Senator Schumer earlier this year, so you might do a search of the word ``Schumer'' if you want to read more about his tick bite episode.
My other thought is....... it is possible that some of the ILADS docs out there that have been threatened or prosecuted may have some `contacts' in the legal profession that would be willing to give this some thought. Lord knows, the two Dr. J's have had to deal with lawyers just to try to save their own practices!
Okay, that's all I can think of .....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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daise
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posted
Truthfinder,
I've called lawyers familiar with Lyme who defend or would like to defend LLMD's. None have called back.
What do the rest of you think about contacting Chuck Schumer?
100% in favor of tracy's outstanding suggestion! why not?
we should try to find out WHAT MEMBERS ON THIS BOARD ACTUALLY "LIVE" IN HIS CONGRESSSIONAL AREA?
they pay attention to THEIR CONSTITUENTS vs. nationwide ones with an agenda!!
i like him; i listen to him alot on cspan; i respect the man!
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Truthfinder
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posted
I actually like Schumer, too, Betty (except for his stance on gun control... hey, nobody's perfect.)
Wasn't Tincup working on this issue at one time?
The problem with trying to find an attorney to talk to about this is that we don't know who to sue!
Is this a `civil rights/ civil liberties' lawsuit? (Well, the ACLU has been a big defender of discrimination and denial of health care for AIDS/HIV patients.... perhaps they would get involved with the Lyme dilemma.)
Is it a ``health freedom'' issue? (Well, normally, those cases are about `alternative' treatments and vitamins and such, but perhaps that applies in this case since we are fighting for our right to choose which standard of care we want, and the only `alternative' to IDSA-style treatment is an unconventional approach with long-term abx...... If so, the nation's leading health freedom attorney is Jonathan Emord.)
Would this be a class-action, `personal injury' case?
Is this an `antitrust' issue? (As Blumenthal's investigation is trying to figure out - whether the IDSA guidelines are in violation of antitrust laws. Boy, if Blumenthal finds the IDSA is in violation, this could open up a whole new avenue for lawsuits, IMHO.)
I think any lawsuit will have to be against the IDSA, but also name every, single doctor or entity that uses the IDSA guidelines - from the Mayo Clinics on down to each ID duck or hospital who refused to test, diagnose, or treat..... and finally to every insurance company that has denied treatment. The list of defendants could be longer than the list of Plaintiffs.
Anyway, here are a couple of contacts that I have in my files. If nothing else, they may be able to recommend an attorney that will listen.
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There was a class action suit filed in Pennsylvania against SmithKline regarding the Lyme vaccine..... the lawsuit was file by Sheller, Lugwig & Badey of Philadelphia. http://www.sheller.com/
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(This is the attorney who represents alternative practitioners like Hulda Clark; has defended several clients against the Quackwatch guy):
quote:.........Carlos F. Negrete of San Juan Capistrano, California, is known for his defense of physicians, chiropractors, dentists, clinics and natural heath providers who practice what is known as complimentary & alternative medicine and holistic healthcare. Negrete has also handled groundbreaking cases against HMOs in California and has represented many celebrities and politicians.
Negrete said, ``You can be assured that our legal team will be wherever health freedom advocates and practitioners are being persecuted. The tide is now turning and people are no long accepting that synthetic drugs are the only form of treatment are the only way to address health concerns.
"Every day, consumers are becoming more educated about the benefits of holistic and alternative methods. This is something that the medical establishment obviously fears and wants to crush with false propaganda.'' http://www.canlyme.com/quackwatch.html
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Truthfinder
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posted
I just ran across this today......
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Empire State Lyme Disease Association Partners With US Senator Chuck Schumer
Manorville, NY, October 16 - The Empire State Lyme Disease Association, affiliate of the national Lyme Disease Association, is very pleased to announce the addition to our Board of a staunch advocate and supporter of Lyme patients both here in New York and across the US.
We extend a heartfelt welcome to US Senator Chuck Schumer (NY) who has consented to become an honorary board member of Empire State Lyme Disease Association, Inc. (ESLDA)
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bettyg
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posted
tracy good find; honorary board member schumer!!
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What's the best way to post to find people with Lyme in his state?
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Does anyone know when the Blumenthal action might be determined? I've tried to find out, but I can't "open" some files with this old computer.
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Concerning IDSA, I think the idea of investigating the investigators would be a powerful tool. Inexpensive (compared to a lawsuit) and fast.
And ought to make top IDSA doctors very, very nervous and ought to get the attention of IDSA doctors around the whole country, each and every one of them. Would they then fire their officials in IDSA?
How should that be done?
What would prompt that?
Can or could that be the result of the Blumenthal action?
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Yes, you can sue the government. Veterans sue the VA.
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Other government agencies are sued.
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A New York Times article, from their archives, follows. Please note:
* The date, Oct. 2, 1990.
* It concerns AIDS. "Because the government is using a flawed and outdated definition of the disease."
* "At the heart of the suit is a dispute over the definition of AIDS promulgated by the Federal Centers for Disease Control ..."
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The New York Times
U.S. Is Sued Over AIDS Benefits
JOSH BARBANEL Published: October 2, 1990
LEAD: Hundreds of women, children, drug addicts and homeless people disabled by the AIDS virus are being improperly denied Federal benefits because the Government is using a flawed and outdated definition of the disease, a lawsuit filed yesterday in Federal court in Manhattan charged.
Hundreds of women, children, drug addicts and homeless people disabled by the AIDS virus are being improperly denied Federal benefits because the Government is using a flawed and outdated definition of the disease, a lawsuit filed yesterday in Federal court in Manhattan charged.
According to the suit, the people are being denied benefits even though they have been repeatedly hospitalized for disabling conditions, including gynecological disorders, tuberculosis, heart infections, bacterial pneumonia and kidney failure.
These symptoms are not included in the definition used by the Social Security Administration.
''I've been having strong pains since the last time I have been in the hospital,'' said one plaintiff in the suit, identified in court papers and in an interview only by her intials, S.P.
The Social Security Administration referred calls about the lawsuit to the Justice Department, which said it was unfamiliar with the suit.
At the heart of the suit is a dispute over the definition of AIDS promulgated by the Federal Centers for Disease Control in Atlanta to track the spread of the epidemic.
That definition has been used, the plaintiffs said, to award or deny Government benefits.
The Federal definition lists a number of ''indicator'' diseases, like Kaposi's sarcoma, a skin cancer.
The definition was drawn up after studies of early AIDS victims, often middle-class homosexual men.
Theresa M. McGovern, a lawyer with MFY Legal Services, the lead counsel in the lawsuit, said that so far the Centers for Disease Control had not conducted large studies of the effects of AIDS on women or other groups of patients.
She said it was ''irresponsible'' for the Social Security Administration to rely solely on the centers' definition.
The suit seeks to be recognized as a class action representing thousands of women, children, drug users, homeless people and poor people with AIDS across New York State.
END _______________________
The difference for us seems to be that the definition was used to award or deny Social Security. And yes, that's a problem for some with Lyme.
It is the CDC's definition of Lyme that ought be what we want to change, in order to raise awareness, get doctors to take us seriously, to provide for diagnosis and treatment miles sooner and to recognize chronic Lyme and it's many faces.
Plus deliver Social Security Disability faster. If the CDC would define Lyme for what it is, there would be fewer S.S. Disability claims--by a long shot. That ought to concern EVERY citizen.
The CDC can/should qualify the miserably outdated definition, saying that this still doesn't include everyone with Lyme and co-infections because more research needs to be done. But what is known MUST be made known to John and Jane Q. Public
There is the whole big issue of coinfections.
Could the CDC counter a suit with the excuse of lack of funds to determine a better definition?
Would they blame politicians for lack of funds--and get away with it?
Yet, the threat to the health of citizens has been overwhelming and for a long time. CDC officials, even without funding, could go the press--for free--and warn citizens.
Afterall, we hear about Hanta virus, plague and West Nile virus on the 6:00 news. Why not Lyme? News of these other diseases is updated in a timely manner, to warn us and to keep us informed. With Lyme, they have not done that, not to any degree of a sincere effort.
It is a fact that it's a cover up. In that, I say follow the money.
Has the CDC sincerely tried to warn the public? No.
Is their definition reasonable? Not in any way.
Coinfections? Pitiful.
Can ticks read road signs? Not that I know of! They ought to--and do--know better. Ticks travel on mammals and migrating birds .... and human travelers around the world.
For that reason, this ought to concern the United Nations. The US is "looked up to" to provide other governments and people worldwide with infectious disease information. We--our CDC--does not, with regards to Lyme disease and coinfections.
Citizens should have been warned by the CDC--and were not. There's been little PR: I didn't know about it and I have lived in 14 states in the Midwest and West. The CDC allowed the terrible Lyme disease ramifications.
That they didn't / have not / continue to squelch it raises the question of ... why?
I "spaced" between some of The New York Times paragraphs for you, BettyG and others.
posted
AHA! So, it IS possible, in theory, to sue the CDC.
That's good to know... but now... how to get it going? It's one thing to talk about it, another to manifest it... make it really real.
I was also wondering, if we couldn't sue the CDC, how about a class action suit against named individuals? How about a class action suit against the authors of the guidelines themselves? Against the NEJM for allowing them to publish that crap piece about no chronic Lyme...
Seriously, what if we named the authors of the IDSA guidelines in a class action suit?
So... I'm sure all of this has been thought about by the LDA. I'm sure they would tell us to sit tight and let Blumenthal do his work...
But I do think it would be wise to consider a class action, and to seek out and talk to some lawyers about it.
posted
tip for all of you when someone's PM box is FULL!
go to DIRECTORY at top, click on it, and then look on left hand side where you can TYPE IN THEIR NICKNAME IN THAT BOX, hit enter, and it will bring up their MY profile!
now go to LEFT side, VIEW RECENT POSTS.
look for one THAT POSTER BEGAN WHICH SHOWS A "0", type them a note on there that their PM box is full, and to clean house; you want to send them something.
or ask them to PM you back! good luck!
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Truthfinder
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posted
I'll lay you odds that nobody can sue the CDC..... most of these agencies have immunity, which is why they seem to operate with impunity and nothing ever changes.
Besides, the CDC basically lets the IDSA do their thinking for them when it comes to Lyme.... so once again, the majority of problems come from the IDSA guidelines; the CDC relies on them; the Neurological docs rely on them; the insurance companies, your average family duck, etc.
So, BB is right - sue the IDSA authors of the guidelines, individually, and since they are `agents' for the IDSA, sue the IDSA, too.
It would be such a boon if the Blumenthal investigation actually concluded wrongdoing on the part of the IDSA.......
BUT, as others have suggested, nothing should be done without the express consent and cooperation of ILADS or the LDA. We certainly would not want to undermine anything they are trying to do via other channels.
Daise asked: ***'' What's the best way to post to find people with Lyme in his state?''***
Well, I don't know about `posting', but as far as information regarding a lawsuit, it might not hurt to contact the Empire State Lyme Disease Association, Inc. (ESLDA). Perhaps they could approach Senator Schumer with some of our questions?
Or post a new topic in General asking if anyone belongs to the Empire State Lyme Disease Association?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bettyg
Unregistered
posted
i just read my weekly immune support newsletter they send; specifically, NOV. LETTER OF MONTH, was written by a CIVIL LITIGATION LAWYER WHO HAD TO give up her practice due to CFS/FM, etc.
i commented on her letter and asked her to come to this site if she could shed any light on a lawsuit like we have been discussiing. we'll see if she comes here or not, but it was worth a try!
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Truthfinder
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Member # 8512
posted
Excellent work, Betty!
Although the article about the lawsuit that Daise posted goes back to 1990, I took note of the lead attorney in the case....
Theresa M. McGovern, a lawyer with MFY Legal Services , the lead counsel in the lawsuit,.....
So, contacting her or that firm could answer some questions......
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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daise
Unregistered
posted
Hi Truthfinder. Yes--Blumenthal.
Does anyone know when that case might be determined? (I can't open some files on my computer.)
Also, Truthfinder: You mentioned contacting Empire State--good idea. But what if we wait for more input from others, first?
And yes, I'll contact Ms. McGovern. That's another great idea. I want to wait until Pat Smith replies.
BettyG: A litigation lawyer with CFS/FM. She would be most welcome. A lawyer!
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Yes, Daise - waiting for more information is a good idea. Not many people have chimed in with ideas at this point.
You know, at the heart of this whole problem may lie the drug companies. After all, most docs now listen to the drug companies telling them what to use to treat most diseases.
Maybe it is the drug companies that are telling the IDSA that there is no SAFE treatment for Lyme - including long-term abx - because the drug companies don't want any more lawsuits.
I'm not saying it is the drug companies that should be sued. But maybe they should be included in the lawsuit if evidence could be produced concerning what I just said.
(I'm just thinking out loud here.)
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
As was mentioned above, governmental agencies do have immunity against personal injury and tortious lawsuits.
The best way to sue a governmental agency (i.e., the CDC, for example) is by filing an administrative lawsuit. There are lawyers who specialize in this very thing. They are administrative lawyers.
The best bet in suing the CDC would be to request that they change their rules, standards and recommendations concerning Lyme.
Administrative law is broken into several interrelated parts. They are: administrative rules, regulations and procedures for government agencies and bodies; the scope of agency authority, in particular individual privacy; and enforcement powers of agencies. In the United States, access to information about government also comes within administrative regulations.
The IDSA is not a governmental agency and so a different legal approach can be used, I believe. But I think again the best cause of action against an organization would be to force a change in their recommendations, rules, standards, etc.
A class action lawsuit would not be applicable against a governmental agency. I'm not sure about one against IDSA. Class actions lawsuits are normally filed against companies, manufacturers, etc. And the cause of action is usually personal injury, harm, or death.
I don't know about this, but does anyone know whether ILADS has filed a suit against CDC or IDSA to request that they change their rules, standards, guidelines?
I could envision something like ILADS, together with various Lyme Disease organizations banning together to do something like that. Try and generate enough noise on the subject and also bring Congress' attention to it.
Bottom line is that millions of people are going undiagnosed either because Lyme Disease is not on a particular doctor's radar, or said doctor is unwilling to go against CDC and IDSA guidelines. Even if the doctor is not a member of IDSA.
Many people go undiagnosed, or once diagnosed have great difficulty finding doctors willing to treat us. And we all know this is due to CDC's position and mostly IDSA's position. And let's not forget the insurance companies! That would be an entire other type of lawsuit perhaps -- who knows?
CDC does say that their standards are not intended for clinical diagnosis . . . that their standards are for disease surveillance alone. That disclaimer might just get them off the hook so to speak. But IDSA, has no excuse.
It seems the main goal should be to bring awareness, a change in guidelines and testing standards, as well as a change in treatment guidelines. We don't want such a large portion of the medical population to blindly (and stupidly) believe what the IDSA says. They have ignored valid evidence.
It'd be a mighty fight though. Look how terrible medical care has gotten because of doctors bowing and kissing to the medical insurance companies. We're moving fast towards socialized medicine in this country and alot of people aren't aware of it. Medical insurance companies and consequently the doctors who seem willing to allow an insurance company to "play doctor" with its customers, are practicing rationing, plain and simple. Medical care is being rationed just like it is in countries with socialized medicine.
So I guess my point is, doctors are frightening. They seem willing to let a private company (i.e., insurance company) dictate to them how to practice medicine. They also allow pharmaceutical companies to dictate to them how to treat disease. The "Art of Medicine" is no longer an art. True medical diagnosticians are hard to come by!
If the docs are so willing to cowtow to insurance and pharma companies, no wonder they are willing to let places like the CDC and IDSA tell them how to think as well.
Just my sorry old 2 cents.
Fuzzy (No I'm not a lawyer)
p.s. I love the angle that Blumenthal is taking!
Posts: 503 | From Maryland | Registered: Oct 2007
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daise
Unregistered
posted
Truthfinder,
Yes, some of the drug companies. I'm glad you brought them up.
Patients with Lyme, MS, Lou Gehrig's, fibromyalgia, chronic fatigue, Lupus, rheumatoid arthritis and so on are targeted by the painkiller, statin and antidepressant markets. These are superindustries.
If people with Lyme and other patients with related diseases were cured--or nearly cured, that would be bad news for these superindustries' bottom lines. It cuts profits in a big way.
I say, follow the money ... and we'll find the real culprits. Yet, these same money people would know how to insulate themselves against lawsuits.
Yet, again, what are Lyme patients typically prescribed? Painkillers, statins and antidepressants. And no Lyme diagnosis.
Who is the main driver? IDSA is at the center. Are they doing the bidding of both insurance companies and certain drug companies? OK. How do we affect change?
Maybe that is our question. Who is the main driver(s) and how do we affect change? What is the weakest link in this chain? I'm thinking IDSA, because they've been "bought and sold."
Thanks for all the good information: an administrative lawsuit to force change. That might be a way. It would exert pressure to change.
To start, what about a petition to the CDC? We could announce it on various websites and to support groups.
~ For example, it could say that the CDC's policies and procedures are hurting millions of people and list the reasons.
~ That most don't know that what's torn-up their life is called Lyme disease and list all the reasons why it is devastating.
~ That about half of these patients are children--who can't develop normally emotionally, physically and mentally without treatment and will have premanent, painful disability--that this is true to an extent, even with those children are treated, due to time off of school and interuption of their social activities with friends.
~ That early detection of Lyme disease would save children, adults, and their families a lot of pain and grief. It would save the government money in terms of Social Security Disability, foodstamps, it would SAVE health insurance company dollars.
~ That the health of the nation is a stake in a very big way.
~ And the health of people throughout the world: doesn't the CDC have an unwritten obligation to the United Nations, as a leader? And we could inform the United Nations about the petition.
~ That some insurance company interests could be individual--some executives. Some drug companies tend to profit immeasurably, directly due to the CDC's position. Not the antibiotic copmpanies, but rather the painkiller, statin and antidepressant industries who would profit every month for life--and on drugs that do nothing to try to CURE.
~ That this is something that can not be put off. They must act now. There is much suffering physically, emotionally, mentally and financially.
~ That the CDC's information comes from IDSA, yet IDSA has shown itself to be not trustworthy in their guidelines--and why: Blumenthal, medical papers, etc.
With enough signatures, maybe it would make the press!
It could make a big stew. It would threaten executives to be rational and compassionate.
Could it be followed up by threat of an administrative lawsuit? Would this be the best way to force change? I think the public might take this petition more seriously if it is aimed at the CDC, rather than IDSA.
However, the effect on IDSA is what I would most hope for: the CDC blaming IDSA. Would the dominoes fall?
Maybe lawyers would be contacting us with ideas on how to force legal change through administrative law--with the will to represent us. That is, if they are impressed with a high number of signatures.
Ultimately, maybe that would put it on IDSA's head: CDC excutives would bounce the ball back to IDSA. We'd have IDSA taking heat. Once IDSA is discredited with Blumenthal's legal action coming to fruition, insurance interests and drug profits would have to find another puppet. (Who?)
I don't know if ILADS filed suit against the CDC or IDSA, to prompt change. I tend to think it would have been publicized.
I have to imagine some LLMD's have written letters, in the past. We could back them up with a petition. The CDC has to be very much aware of the controversy. Executives must be nervous.
I think Blumenthal's legal action is the best thing going. A petition to the CDC may very well ratchet-up the pressure.
The petition, noted in the press, could also advertize to those who didn't know they have Lyme disease--until the petition raised awareness.
You wrote: "I could envision something like ILADS, together with various Lyme Disease organizations banning together to do something like that. Try and generate enough noise on the subject and also bring Congress' attention to it."
I think we have to do this, apart from ILADS. If a petition were noted in the press, politicians would take notice.
Especially because of the emotional impact.
You mentioned that most docs are frightening--yes! When I was in the midst of Bells' palsy, in severe headpain and severe muscle pain with a brain that didn't work very well, what truly frightened me was the doctors! It was like the twilight zone.
I remember being alarmed for the human race, the doctors were so cruel.
They didn't believe my signs and symptoms. What is that? I think the public could relate to that.
Rather than using other medical organizations for legitimate medical information, most docs have turned their brains and souls over to organizations that threaten their paycheck.
What do you all think of the strategy of making a petition to the CDC?
posted
I am an attorney with lyme. I have two kids with lyme, one with babeosis. I do not practice in administrative law or class action litigation, but . . . I have been thinking about ways to get action.
One idea I had was to sue the federal government on behalf of a minor (or numerous minors)infected with debilitating lyme with a tuskeegee-type argument such as lyme was deliberately cultivated at plum island and leaked in one grand bio-experiment. I think it would get people talking, although it would likely be dismissed.
Another idea that has more promise is to partner with antibiotic pharmaceutical manufacturers to get them to 1) help pay legal expenses for persecuted llmds and 2) challenge the IDSA guidelines.
What do folks think?
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I too think if we coul dget the drug companies behind us we just might make headway.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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daise
Unregistered
posted
A lawyer--yes! Lyme has hit terribly with your family. Thank you for responsing.
More good ideas! More good ideas! More good ideas!
Keep them coming everybody!
This thread is for a gathering of ideas--and then we'll take action.
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Daise, the CT AG is pursuing the civil investigation of the IDSA and the case has huge implications, not just for Lyme but for other diseases where you have a small group of people with vested interests determining medical policy and using state medical boards and insurance companies as enforcers. Whoever said we should see how this plays out was right. It may give us more avenues to sue or whatever after this case is resolved. No, I don't know how long it will take. What do they say? The wheels of the gods grind slowly, but they grind exceeding sure?
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
phyllis, i understand what you saying about waiting for the OFFICAL WORD from AG BLUMENTHAL ON ANTI TRUST AGAINST IDSA.
but should it not go our way, i'm with daisy on just brainstorming NOW bringing up ideas to pursue.
you don't have to spend a lot of time brainstorming, but as another lymie said to me, it gives my brain a good workout on things that i used to do without thinking about it.
so daisy, keep doing what you are doing; just don't spend a lot of time on it!
everyday i expect CONN AG to have an official announcement, but no luck yet! but look at ALL THE EVIDENCE THEY ARE GATHERING AGAINNST IDSA !! you rock AG Blumenthal!
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posted
Everyone is making very good points. There was a law signed by President Bush about lyme and I want to know why the doctors or CDC aren't paying any attention to it.
Also, pharmaceutical co and CDC took out at least band 31 after the lyme vaccine made people sick. Someone patented this band. Who are they? If you have band 31 show up in your blood and never had the vaccine, I still say that makes whoever patented it responsible for you. I never saw the tick on my daughter or a bullseye rash, but she has been +++31 positive since the beginning, but they won't count it and that one band not being counted keeps her from being CDC positive.
Posts: 41 | From Warfordsburg,PA | Registered: May 2007
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
bsigel, the "law" you refer to was language buried in an appropriations bill and didn't require anyone to do anything, so it's really no use to us.
I don't think you are going to get any court to assign guilt to any patent holder because someone tests positive for ospA (31kD) but your daughter should be able to get treated based on her positive anti-ospA antibody, even if her case is not counted by the CDC.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
I'm just having a hard time understanding how they can patent it for their own use, but not count it or have any responsibility. Makes no sense to me, but nothing about this disease does.
We are getting our daughter treated. She's been on orals since Jan. 07 and has been on the PICC line for 4 months.
I pray someone figures out a way to go after whoever it is that is responsible for all of this.
Posts: 41 | From Warfordsburg,PA | Registered: May 2007
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The House & Senate Committee Report said Congress was "greatly distressed" that persons with LD could be excluded from Medicare coverage due to "very poor" testing. The Report attended but was not in Public Law 107-116. The CR told the HHS Secretary to remedy flaws in Medicare's LD approach.
This may be significant if a Federal Court will recognize it as the will of Congress and hold the HHS to it. Otherwise it is window dressing.
Years ago a case called Grijalva argued that Medicare's appeal system unfairly used small print and lacked instructions. The plaintiff prevailed through the 9th Circuit but the Supreme Court remanded. Out of court (in a smoke filled back room?) the powers that were hammered out new appeals guidelines and now instructions (in 8-point font or larger) explain how to appeal denied Medicare benefits.
In his ruling the D.C. judge raved that the deck was stacked in Medicare's appeal process. His words have no force of law. If Congress passed a law demanding the HHS clean up its act and the president backed, we might see change. How likely? I suspect the matter will require much more suffering and sacrifice plus favorable media exposure and public outcry.
In such a setting, courts make equitable rulings and Congress acts. Until then the band plays on.
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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daise
Unregistered
posted
Hi Neil,
Thanks for the new angle.
Also, maybe you could start a new thread to inform people! An informational thread. And use the information that you pm'd me about. And mention the name of your friend, who died.
It could turn out to be a collection of information by you and others concerning HHS.
posted
I realize that this is an old post but I am an attroney who has been battling Lyme for some time now. I believe that I may have come up with an idea for a class action suit and I am currently vetting it with some medical/legal teams. I don't want to get too excited yet because I am a long way from launching it. I am hopeful that I will know one way or another within the next 60 days. I will keep you posted should it come to fruition! Susan
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bettyg
Unregistered
posted
welcome SUSAN! WOW, you're a blessing to join and share that news that has kept us all discussing/CUSSING this very thing!
so glad you decided to join us and share.
HAVE YOU SIGNED THE OPRAH BOARD ACTIVISM going on? she's deciding this week whether to do a show on LD and with UNDER OUR SKIN lyme documentary too.
ALSO, SEE TINCUP'S POST ON FEDERAL LYME BILL... HR 1179 i believe is new no. please email your STATE'S FEDERAL HOUSE REPS; senate version no. coming later.
there are other activism things going on now too; all at once ...
oh yes, IDSA new panel of 14 people NO CHRONIC LLMDS ON IT; also here in activism.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. ******************************************* rachel, my heartfelt sympathies to you on the loss of your beloved jenny that i read about below!! how awful. i'm going to try to post a link here with info on SUCCESSFUL LAWSUITS WON ON LYME DISEASE from www.lymenet.org site! if you would like to join FREE www.lymenet.org i would be happy to try to help you find this again!! there were many examples, and look on LEFT side :legal resources" !! all WINNERS! cathy, glad you are doing better now. later my friend. Bettyg Iowa lyme activist
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posted
Welcome to lymenet, Susan, and thanks for being willing to think this situation through for possible action! Am p'ming you.
Posts: 13116 | From San Francisco | Registered: May 2006
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