Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
WOO HOO!! This just came in!
Update on the Urgent Lyme Bill Alert and new info from DC
Dear Lyme Community,
Your support has been overwhelming.
You are taking the time to contact Washington and letting them know you are out there, and you will be heard.
Believe me, if they did not know before, they know now.
We have heard that 200-300 calls/hour were coming in & one office received over 2,000 calls by late Fri. afternoon.
What is DC's response?
I was contacted today by the Energy & Commerce Committee Office and told we have incorrect information on our Urgent flyer, and we need to stop the calls, because it is unfair to committee chairs and E&C─their phone lines are tied up.
I told him if he wanted to know what unfair was, I would tell him.
I did.
I told him about IDSA preventing you from getting a diagnosis with its guidelines,
I told him about your inability to get treatment,
about children being removed form families for the crime of having them treated for Lyme by a licensed physician.
I told him the stranglehold IDSA has on this disease and how they promulgate only the science they have accepted as real and how Congress was choosing to listen to IDSA's voice and not yours.
I said, this is America, a place where diverse views can be expressed everywhere on anything, but not on Lyme disease.
I told him how every other major disease has a patient voice in the process, Lyme does not.
I told them Lyme patients are not ``uneducated'' as some have attempted to portray them.
They are very smart and include people from all walks of life including professionals.
They know their disease, and they are tired of IDSA telling them they are not improving with antibiotic treatment when they know they are.
They know IDSA is trying to take away the only opportunity they have for a voice in their fight to regain control of their lives by defeating this disease.
I said these people do not need me to draw the lines for them and connect the dots.
I told them patients have lost their patience.
They sat by and waited while Congress said war was a priority, while Congress said West Nile was priority,
while Congress said the economy was priority, and ``Martian Fever in Timbuktu'' was a priority.
They've waited 10 years to have their bill heard.
They do not want to wait any more.
And like AIDS was many years ago, Lyme is now─patients are increasing in numbers, yet have few doctors willing to run the political risk of treating them.
Global warming is increasing Lyme disease cases.
People are becoming afraid to venture outdoors in many areas.
And CDC case numbers are only the tip of the iceberg.
If he were content to listen to CDC numbers, he would be sadly misinformed.
Numbers of tick-borne disease cases far surpass that.
Patients were not going away, in fact, their numbers are rising.
Public health is not doing its job concerning Lyme disease, and I said that is why I remain involved, I could not turn my back on these patients.
On the call, I was given no indication or hint of any kind that anything would be done with the bill at all.
When I asked what information on the flyer on our website was incorrect, I was told the part about ``Energy & Commerce is making up a list of the only health bills to be heard NOW.''
He said that is incorrect.
I told him we were told that by someone at the office there. He said that is not true (LDA stands by its source) and that we are not helping the cause by making these phone calls.
When I asked what would help the cause, I got no answer.
He said they got the message.
I disagreed.
If they got the message, I said, they would have the bill scheduled, since we are almost a year and a half into the session and you have nothing on your Health Subcommittee agenda.
No hints or assurances that anything could or would be done were given.
Again he said I should tell patients to stop the calls.
I said I could not do that, patients have heard all over the Hill that E&C refuses to schedule a hearing due to IDSA pressure.
He never responded to that nor made any reference to that as being incorrect on our flyer (Flyer says ``IDSA is dictating public policy and your health. Because of its interference, we cannot get a hearing on the Lyme bill.'')
We had a lengthy discussion.
He said my comments would be relayed back, and I said I would tell everyone what he said about the information on the flyer being incorrect and that I would also say we heard differently, but that I would not tell patients they had to stop calling.
They want action and have been patient for the 10 years bills have been in Congress, and I have no right to tell them they should stop calling because some offices were inconvenienced.
Try living with Lyme for 20 years or caring for a family member with the disease.
Bottom line, for me, a healthy person in the fight for 20 years, I would not tell patients something I did not feel was justified, nor would I desert or mislead Lyme patients fighting for their rights and their lives.
posted
I have no right to tell them they should stop calling because some offices were inconvenienced.
---Pat Smith---
Poor things ... they're "inconvenienced!"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Pat, YOU ROCK!!!!
But I'm confused....isn't this how our government works? Aren't our officials in Washington there to represent us, and isn't it typical procedure for Americans to call them and let then know where we stand on issues?
Isn't that their job? They can tell us NOT to call???
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
gosh darn. I guess we should all call AGAIN and apologize for the trouble that IDSA is causing them by blocking the Lyme bills. We can tell them we know exactly how they feel...
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
lol, minoucat - we should all call again - all 3000 of us, or whatever - to apologize for the trouble they're going thru - that comment made my night!
And way to go, Pat!!!
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tracy said..
"Could this have a backlash effect? Can the powers that be get ****ed off by all our calls and deliberately block the bill because of it?"
I thought about that too... and asked about it.
Right now we have NOTHING.
Therefore.. we have nothing to lose.
They are NOT listening to us at all.. and they ARE listening to the IDSA bull.
Soooooooooooooo...
Six of one, half-dozen of the other.
Doing nothing will get us nothing.. that is a for sure. Doing something might get us nothing. It's a possibility.
But doing something MIGHT get us something.. and we won't know till we try.
We've been trying for 10 years to get something.. and nothing else has worked. I don't think we should sit quietly around anymore and rot.
If we go down... let's do so fighting.
I know that isn't much of an answer.. and some may not like it.. but that is all I can offer.
posted
here's what I received from member, NP40, MIKE, on Pat Smith's wonderfully written letter.....
WOW ! Calls were pouring into legislators offices regarding the lyme bill. Unfortunately, no good news to report yet.
Pat Smith from the LDA has an update posted below. I applaud Pat's firm stance and insistence that this bill be given a fair hearing. Just a terrific response from her ! A BIG KUDOS !
Couple of things regarding the response Pat received from the Energy & Commerce Committee.
First of all, the nerve of this bureaucrat ! They work for US, we pay their salary ! The nerve of this bureaucrat to say our calls "weren't helping". We disrupted their little "love fest" with the IDSA/Insurance megalomaniacs. Damn happy to do it, too ! ********************************************
Frankly, I don't give a rat's backside what some bureaucrat or some politician thinks about all of our calls. Last I checked, they're still called "Representatives" which means their opinions, prejudices, back-room dealings, cozy corporate relationships, etc. mean nothing ! Zero, nada, zippo. They are placed there to "represent" their constituents. Their opinion matters not. Period, end of story.
For good measure, just to interrupt their little "tea social" with IDSA blowhards - I plan on faxing the IDSA investigation article to all my state representatives this weekend so first cup of java come Monday morn they'll have something to read besides Rev. Moon's Washington Times.
Oh NO ! Did our phone calls disrupt their day ?!!!! Geez, I sure hope it doesn't put them in a foul mood when they attend their Georgetown cocktail party tonight ! Why, they'll barely be able to focus on the chocolate mousse and truffle bake they'll wolf down while discussing how the "great unwashed" disrupted their day.
I've got an 18 year old son that has to walk around half the time with a cane and I should feel bad because their phone lines were disrupted ? What's the matter ? Their lobbyists couldn't get through to throw some bribe money around ?
I've had a dozen people contact me this week. It's the same story with every single one of them. Symptoms appear, get worse, can't get treatment, can't even get a diagnosis, lyme causes a multitude of problems. Lives spiraling out of control.
The real "lucky" one's lose their jobs due to physical handicap, their health insurance, their homes, go on SSI. But hey, tough luck pally. We can't disrupt their phone lines. ********************************
Bulls### !
I'm up to "here" with this garbage and I want you to be up to "here" with it too. *************************************
We will NOT go away !
We will NOT stop calling !
Our voices WILL be heard !
Lyme patients are GOING to get respectful and adequate treatment !
Fax em' up some IDSA investigation goodies this weekend. Fax em' up the Hartford group's $20,000 reward for anyone that can prove lyme is cured with short-term abx. All of our reps need to hear it !
Then, on Monday let's get back on the phone and call twice as much, fax twice as much. ***************************************
I often quote Gandhi at the end of my e-mails. "First they ignore you, then they laugh at you, then they fight you, then they lose."
They sure ain't laughin' now.
Looks like the third stage to me. We're not far away.
Please read Pat Smith's terrific response below. Thanks Pat, for all your efforts. ************************************
{Busted up the paragraphs for neuro lymies. Thought I'd save Betty the trouble.} -Mike
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
kudos phyllis for ENLIGHTENMENT of what OTHER, critical bills have been submitted to this health committee!!
of all the bills you posted, all are good, and should have a hearing BUT many of them have had previous hearings also ...
so give our LYME BILL A CHANCE ... OUR 1ST HEARING EVER! ***************
phyllis, you made a good point too!
call, fax, or email your HOUSE REPS & SENATORS TO BE "CO-SPONSORS" OF HR 741 AND S 1408!!!
WE NEED THEM NOW TO COMPETE WITH OTHER BILL WITH MORE SPONSORS ABOVE!
we can make a difference! this is the best money i have spent on making my non-free calls since i don't have a cell phone! i'm investing in my FUTURE HEALTH ...QUALITY OF LIFE! Bettyg
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
God Bless You Pat!
I hope they at least note by the number of calls,
The possible voter base they will be losing.
I think sometimes it is just a number game.
AIDs finally got the funding it needed due to mobilization of a large number of voters.
I'm still calling.
Thanks for the update.
It is so enpowering to have someone in your corner who really understands and knows.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
We should all keep calling and re-double our efforts. Ask rep's to call back and let you know what is going on and why a committee member is telling us to stop calling. Are our voices not important? Look at Pat's response and pick a couple of those reasons to highlight.
Put it on your Monday morning to do list.
There is nothing to lose.
They want to SILENCE us. I immediately thought of the slogan adopted by AIDS activists when authorities were trying to disavow the AIDS epidemic: SILENCE=DEATH
If we stop, they win.
Tincup, thanks for passing this along. Here's the link with numbers to call for those who haven't seen it already.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Our lives begin to end the day we become silent about things that matter. - Martin Luther King Jr.
Since the general civilization of mankind, I believe there are more instances of the abridgment of the freedom of the people by gradual and silent encroachments of those in power than by violent and sudden usurpations. - James Madison
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I called my senator's office and had a long chat with them. With election time so close, I used one party against the other.
I let them know this is not the first time that my senator has heard from me. I used politics to bring attention to my crys.
I told them Senator Kennedy & others in the Northeast were the not the only senators that needed to worry about lyme disease & tick borne illnesses.
I repeated again how many people I've met in 9 yrs in the state of KY that have become a burden to the state. All of this citizens were hard working, tax paying citizens that now rely on federal and state tax dollars to get them medical care and a SS check to help pay the bills.
My senator must sign on and help the hundreds of thousands of ill KY citizens now with tax dollars that will help change KY Medicare & Medicaid.
He serves on the Labor, Health and Human Services and Education Appropriation Committee. They fund the CDC & NIH. Where it all needs to start.
What makes KY tick.....labor, health and education. Lyme disease & tick borne illnesses are an economic burden to this state and our American citizens.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Nice job Pam.
-- Mike
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
i think many of these arguments should be sent in emails or FAXES to CONGRESS;
YOUR STATE'S FEDERAL SENATORS/HOUSE REPS where you are asking them to request a hearing for our lyme disease bills
AND ASKING THEM TO BE A CO-SPONSOR OF EACH BILL, S1408 and HR 741 !!
plus EMAILING/FAXING THIS INFO TO 3 VIPS TO DECIDE OUR FATE OF LYME BILL:
KENNEDY, POLOTTO/SP, AND DANGLE; sorry on spellings!*********************************
the below is from a prominent member here who wishes to remain ANONYMOUS, and i'm going to add her comments to my 2nd OPRAH THREAD NOW!
This is a children's disease because they are more prone to going outside to play and be bitten by a tick. In addition, their skin is softer and there is a greater chance for an attachment before the tick is washed off.
They are closer to the ground so the ticks often attach in their ears and on their head so more often they end up devastating neurological symptoms.
It destroys their childhood, no rather it makes life a nightmare for them.
In addition parents that persist in trying to find proper treatment are then threatened with abuse. From your own experience you can understand how it is more difficult when bad things happen to a child, please come forward and take on this cause for the children. Please help the children!
These children (and adults) are abandoned by the medical system and often sent home with pain killers, tranquilizers, anti-inflammatories, and drugs for psychoses to die a slow horrible death as the illness takes over their body and progresses to their brain and they are slowly destroyed by the infections.
The disease which is supposedly cured attacks various organs in the body so eventually one of them gives out and the cause of death is not listed as a tick infection but instead as caused by the organ that fails.
Sometimes they die because of an overdose from the suite of drugs they need to take to relieve their pain.
Those with multiple tick born infections have the hardest time recovering and likely this is the cause of "chronic lyme" symptoms.
60% of ticks carrying Lyme disease that were tested also carried two or more other infections. These other infections are not recognized in the infectious disease society's often cited lyme studies as separate diseases but they must be treated differently than lyme.
For example a common one is a parasite (Babesiosis, which is NOT a spirochete like Lyme disease) which causes symptoms in some ways similar to the parasite malaria.
We don't yet know how to treat it, malaria medicine has been tried, but without much success. Babesia can kill and can be permanently disabling.
Another is a bacteria without a cell wall (up to 4 different variations of mycoplasma) so antibiotics which usually destroy bacteria by weakening the cell wall don't work.
Those are just 2 common ones, the others are all just as different and all difficult to treat.
Veterinary studies indicate that when these infections occur alone in a mammal they are bad enough, but together they kill and are even more difficult to treat and diagnose.
Because of the lyme controversy little work is being done to provide new more reliable test methods.
In addition, new methods that are proposed are dismissed by the infectious disease doctors and insurance companies at best as experimental and usually as quackery.
The test for Lyme disease currently approved by the Center for Disease Control gives false negatives over 60% of the time, but the infectious disease specialists who study lyme diseases repeatedly rely on this test in the clinical trials they publish to prove there is no such thing as chronic lyme and to claim patients are cured.
The CDC approved tests for the other common tick infections that occur with lyme are similarly just as unreliable.
A handful of infectious disease doctors in the United States have a strangle hold on Lyme Disease and other tick born infection research, so little new research is being done on developing new treatment methods and find cures.
This little group reviews grant proposals and articles submitted for publication and reject those that do not come from their "team".
So any research that shows evidence that the results of their published clinical trials are in error cannot get funding or be published.
Their work is wrong because they relied on the inaccurate test methods, because other tick infections are common and were not considered, and because they used restricted symptom criteria.
They have taken their same clinical trial results and publish them over and over in multiple review articles, so when they cite that work it seems as though there is a large body of evidence based on multiple studies supporting their conclusions when in fact there is not. *******************************************
This faulty infectious disease research is so widely and repeatedly published that they use it to indoctrinate other infectious disease doctors that do not specialize in lyme studies and to influence the infectious disease society to stand behind them and their research.
They are also the group designated by the infectious disease society to write up the guidelines that are then repeatedly cited.
Infectious disease doctors insist that after 4 weeks, treatment is completed and antibiotics just give relief from lyme symptoms because they decrease inflammation.
But they do not consider other tick infections. If someone has multiple infections they must be treated with a cascading approach since they each need a different antibiotic.
In addition since the testing is still so inaccurate treatment for one infection relieves some symptoms then the remaining symptoms can be used for a clinical diagnosis of a remaining infection.
Also, having multiple infections that inhibit the immune system (which most tick infections do) also makes treatment take longer.
Most doctors refuse to see patients that say they have lyme disease because they find they cannot cure the patients with the approved treatment methodology and if they treat longer or use other methods the medical boards put them up for review.
Delayed treatment because of they lyme controversy and refusal by doctors to diagnose lyme or even consider other tick infections, results in delayed treatment and once treatment is delayed past the first month, the suffering begins and a cure is nearly impossible.
_____________________________ Betty,
I would also like to suggest we as a group consider not calling it lyme disease, but start referring to ourselves as having "TICK DISEASES" because lyme disease alone is misleading.
After reading the posts here and medical literature now for 6 months, I strongly doubt any of us on here has only lyme disease or just one of the coinfections.
I think in activism we need to push forward this concept of more than one infection, that multiple infections make treatment harder and symptoms worse.
That the other infections are in some cases more disabling but they are often ignored by the infectious disease society and cannot be treated with the same medicines as lyme disease.
I think we might stop call them lyme and coinfections, they are each so disabling enough, difficult to treat, and different enough from lyme disease that they should be treated as separate illnesses.
In addition, many of them are so newly discovered we know even less about how to treat them than lyme disease.
Sorry for the rambling, but I think a new approach like this might help us.
Lyme is almost a dirty word now, you say it to any physician, politician, reporter, friend and their eyes roll and they stop listen assuming they have heard it all before and the person that says they have it is a psychological mess.
If you don't like this and think these are just useless ramblings, just don't use it anywhere I won't be hurt, but thanks for listening. ******************
to our anonymous poster, THANKS FOR A JOB WELL DONE COMING FROM THE HEART OF A LYME PARENT!! I'm showing it all above, and will get in her upper portion comments onto alex's post.
rest i'll put elsewhere on the board!
Again, thanks for taking the time/energy to put into words your thoughts, feelings, and frustrations of lyme disease! Bettyg **********************************
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