The Asbury Park Press printed a letter 5-21 (click link above for letter) from Dr. Phillip Baker, former NIH Program officer for Lyme and current ALDF Director, in which he purports to feel sorry for Lyme patients and applauds Congressman Pallone's decision to allow the IDSA control over the fate of the Lyme bill.
No where does he mention the IDSA conflicts of interest or that he gave out most of the Lyme research monies to IDSA researchers and now is being paid to direct their organization, American Lyme Disease Foundation, a government mouthpiece whose advisory board consist of many IDSA guidelines panelists.
Call or write the Asbury Park Press now.
Tell them you are outraged that Phil Baker and Frank Pallone support an investigated organization like IDSA, one which is stopping your treatment and your family's treatment.
Tell them the paper should be investigating conflicts of interest in medicine and science that are preventing your treatment. You as a patient want a voice in the process.
Congressman Pallone and Phil Baker are preventing that from happening.
Take one of the following actions
1. Call Managing Editor Gary Schoening 732 922 6000 then dial 1 then 4020
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
My response ...
````````````````````````````````````````````
Phil Baker, don't you DARE say you feel sorry for Lyme patients or act like you care about them now. You were responsible for protecting our children from becoming chronically ill and disabled. In my opinion, you have not done your job.
You continued to fork over taxpayer's money to an organization (Infectious Disease Society of America) which padded their own pockets to the detriment of the public's health.
You continue now to support them after they have been busted for having serious conflicts of interest related to the insurance industry and pharmaceutical companies.
And the results of your actions? Lyme disease cases have increased, the reporting system misses 10 people for each one counted, prevention efforts have failed miserably, Lyme tests still miss 75 percent of those infected, the failed Lyme vaccine prompted multiple law suits before being pulled from the market and people continue to suffer without adequate treatment.
Shame on Congressman Pallone for killing the Lyme disease bill on the advise of the IDSA members responsible for these atrocities; IDSA members who have been stripped of their duties after being investigated by the Attorney General for illegal practices directly related to their Lyme disease guidelines.
posted
Be aware - you will have to register to post a reader comment. I registered, but am waiting for a confirmation e-mail in order to post my comment.
Posts: 81 | From Iowa | Registered: May 2007
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Cheryl
Frequent Contributor (1K+ posts)
Member # 75
posted
The NIH has spent more than $8 million on four different placebo-controlled clinical trials to examine the efficacy of prolonged antibiotic therapy for treating this condition. None of these studies showed such treatment is beneficial.
posted
I just replied - that article made me want to vomit!!!!
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BettyG...
Please do us a favor. And I know it took a LONG time to do it... but...
Copy and paste... then delete that post and put it somewhere that it isn't disrupting the flow of this topic. I am sure if folks want to read a websites thread from another site they can go to the site where it is posted .. or to another heading here where you can place it.
Sorry but this is totally making those who want to follow the original topic... crazy!
Thank you kindly.
PS... You can post just the link here.. without posting all that stuff. MUCH appreciated.
lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
I wrote to the paper:
Dear Editor: I was disgusted by the letter written by Phillip J. Baker, praising the action of Rep. Frank Pallone Jr., D-NJ to delay consideration of HR-741 (Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007). Mr. Baker stated that he had ``great respect and empathy for patients who seek the truth from members of the medical and research communities.'' If this were true, Mr. Baker would be promoting HR-741, because this bill's intent is to seek the truth about the testing, education, and treatment for Lyme Disease.
In his letter, Mr. Baker addresses those physicians who treat their patients who suffer from chronic Lyme disease with prolonged antibiotic therapy. Mr. Baker opposes prolonged antibiotic therapy, stating it can do great harm and has been blamed for at least one death. I would ask Mr. Baker, ``How many deaths have been attributed to complications from undertreated Lyme Disease?''
According to Mr. Baker, the NIH has spent more than $8 million on four different placebo-controlled clinical trials to examine the efficacy of prolonged antibiotic therapy for treating Lyme Disease. He said that none of these studies showed such treatment is beneficial. Perhaps Mr. Baker should have included me in one of his clinical trials, or some of the many people that I know that have treated their Lyme Disease with prolonged antibiotic therapy. If we had been included, the results of his studies would have been more accurate. You see, I am one of thousands of Lyme Disease patients who has benefited from prolonged antibiotic therapy.
Initially, I presented to my physician with a bullseye rash. My illness was exasperated when it went untreated after having a false negative Western Blot test. Once I was properly diagnosed, and after over a year of antibiotic therapy, I have gone from being bedridden to working full time, exercising, taking care of my family . . . living. Prolonged antibiotic therapy probably saved my life. Prolonged antibiotic therapy turned me from a person with raging headaches, neuropathy, myalgia and heart issues into a person of health. And there are many other Lyme patients who have transformed from ill to health on prolonged antibiotic therapy. But I am sure this comes as no surprise to Mr. Baker.
Rep. Frank Pallone Jr., as chairman of the House Energy and Commerce Subcommittee on Health, has decided to delay consideration of HR-741 until an Infectious Diseases Society of America review of their current Lyme Disease treatment guidelines has been completed. This is totally irresponsible and completely ignores the needs of current and future Lyme Disease patients. This bill's intent is to develop sensitive and accurate diagnostic tests, increase public education, create a physician education program, and determine the effectiveness of different treatment modalities. The needs addressed by HR-741 are unrelated to any guideline review or politics of any specialized group. Perhaps Rep. Pallone, Mr. Baker and the Infectious Disease Society of America fear what truths will be revealed if HR-741 is passed.
I urge everyone who cares about the health of yourself and your family, to call Congressman Pallone's office ( 202-225-4671) and ask him to schedule the Lyme bill for a hearing today. Let your voice be heard and the truth be known.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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bettyg
Unregistered
posted
/// morning tc,
well, i copied all the above to NEW post, but i tried doing a BLOCK DELETE on my entire post ...
IT WILL NOT WORK DOING BLOCK DELETE!!!! **************************************
i'm NOT going to to delete SPACE BY SPACE; it will take super long time that i'm not willing to spend that way.
so i started a new post as requested w/baker's letter and ALL REPLIES to date...
so here's a workable compromise ok: ***************************************
would you START NEW THREAD, and COPY ALL THE POSTS UP TO MINE ON IT, IGNORE MINE, and then COPY any after yours to me asking me to get rid of it here on yours??
after pasting to a NEW POST you have started,
come back to this one and DELETE ENTIRE POST since your comments/others are on your NEW POST, and i started a new post w/baker's letter of support, and all replies i copied to that point.
to delete your post here after doing the above, *********************************************
click paper/pencil on your 1st post to us go to top left corner CLICK DELETE POST, HIT ENTER, and it's gone !!
i hope this compromise will work for you as well as me!
so sorry ....
i thought i was ADDING to your original thread by posting the letter you referred to but had NOT posted to read........
fyi, the site shows the oldest posts last; that wasn't me who decided that.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My response:
"However, much of the controversy about the treatment of Lyme disease stems from a small minority of physicians who claim their patients suffer from "chronic Lyme disease."
No direct evidence proves this condition is caused by a persistent infection of Borrelia burgdorferi. This small minority of physicians mistakenly advocates prolonged antibiotic therapy of six months or more, which can do great harm and has been blamed for at least one death."
Mr. Baker, are you for real????
Have you checked on the ILADs website and reviewd the hundreds of studies that clearly prove the existence of chronic lyme disease, many authored by the very IDSA members who now say it doesn't exist?
How about the over 100,000 patients who have regained their lives and are getting well on long term anitibiotics?
One death?
How about hundreds of deaths from chronic lyme disease? I'm no mathemetician, but it seems to me in this case the benefit vs risk ratio is pretty clearly in favor of long term anitbiotics.
Doesn't take a rocket scientist to figure that one out.
Who is padding your pockets with cash? Need I ask....Bet it starts with an "I" and ends with an "A."
How do you sleep at night?
The tide is turning, Mr.Baker. There are so many people infected now with Chronic Lyme Disease, and so many more to come, and even more to become aware that what they are suffering from is NOT chronic fatigue syndrome, fibromyalgia, lupus, or arthristis, but actually Lyme Disease.
You better run, mister. Your time is up. You can't fool the masses any longer. Our numbers are becoming way, way too large for your propaganda to hold any credence any longer.
You can't push your ridiculous lies and propaganda much longer. Too many legislators, senators, and physicians are finding their loved ones to be afflicted with this disease.
Do you honestly think they are going to tow the party line when their family members don't get better with four weeks of doxycycline? I dont' think so, Mr. Baker. People will be jumping the IDSA ship so fast it will make your head spin.
I hope you have a Plan B. Because buddy, you are sure going to need one.
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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daise
Unregistered
posted
Bad boys, bad boys, whatcha gonna do? Whatcha gonna do when they come for you.
tincup, my mind is now working again; was completely brain dead after 4 hours of doing what i did originally copying baker's letter here and copy/pasting/editing all replies.
mind finally worked; so i did what i tell everybody and couldn't think of myself....
i edited, and went to top left corner; click DELETE POST, and it went bye bye!
you asked me to move it; i made a copy of it and STARTED IT'S OWN THREAD as you requested.
i went to remove it using block delete from THIS thread, but it would NOT work, and told you about the compromise i promised since i couldn't delete it.
remember i was brain dead from 4 hrs. on this project.**************************************
so i asked YOU to start a new thread, copy your comments and ALL REPLIES EXCEPT MINE, then you do a delete post of ENTIRE REPLIES.
you didn't recoginize my efforts at compromise...
but i did inform you i was NOT going to delete CHARACTER BY CHARACTER. i was NOT going to waste my time/ENERGY that way.
now you have what you wanted to begin with...
so i didn't say no to you; there were just complications.
This letter is extremely offensive and biased! I have been suffereing with lymes disease for 15 yrs. now, and am currently in a wheelchair as a result.
No where does he mention the IDSA conflicts of interest or that he gave out most of the Lyme research monies to IDSA researchers and now is being paid to direct their organization, American Lyme Disease Foundation, a government mouthpiece whose advisory board consist of many IDSA guidelines panelists.
This is the AIDs epidemic for this generation. It's their actions that are preventing legitmate victims of this disease from getting the treatment they deperately need. While they are bean counting and debating, people are suffering and dying.
While they are politicing more and more people are contracting this disease, and it's spreading like a wildfire. We are not a statistic, we are not just numbers on a page, we are LIVING BREATHING, people who are suffering a hell I wouldn't wish on my worst enemy.
Delaying this bill, putting it in hands of people who do not have the patients intrest at heart, but dollar signs, is KILLING them, is causing suffering on a mass scale.
In times past journalists were springboards for the truth, and change, I urge you, urge you, to show what good investigative journalism can do, and be the catalist that will get the truth out, be the paper that can let the world know of our suffering before it's to late.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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daise
Unregistered
posted
Hi Nicholas,
I need to ask you something. Your post is very hard--even painful--for many to read with chronic Lyme disease as it affects our eyes. Large blocks of type are painful--formidable--in the heads of many here.
Could you please edit your post? (Click the icon at the top of your post, to the right of your name--way over on the right.) Simply break it into paragraphs of 1, 2, 3 or 4 lines.
posted
Sorry about that Daise, I totally understand, same prob. I just copied and pasted from my email, didn't think to break it up.
Posts: 86 | From Upstate New York | Registered: Jun 2007
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daise
Unregistered
posted
Hey Nicholas,
That's OK. Really. It happens! Thank you.
I read your letter and it's great! I especially like this: "This is the AIDs epidemic for this generation."
Oh yes! I agree. The people with aids had (have) a superstar with a heart as big as planet Earth, Liz Taylor, to draw attention to what was happening. She was dead-on passionate about people with aids and the horror they lived.
She grabbed us by the throat and made us listen. Good 'Ol Liz!
Amy Tan has done a lot, bless her heart!
Apparently Mary McDonnell, who was spokesperson for the LDA, is no longer interested.
But I think we need a superstar, someone who commands attention. Someone who is unscathingly talented to be able to reach inside The People and tell them about Lyme disease--so they believe it!
posted
I agree, that is why I've emailed Micheal Moore and asked for his help. This is something that is right up his alley.
I think he'd be perfect, the man's a bulldog.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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daise
Unregistered
posted
Hey Nicholas,
Yes, Michael Moore--the bulldog of what is happening. He commands attention.
thanks, I can't find the post, can you possibly put a link up for it?
Tincup
Thanks, I'll be around as long as I can
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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posted
OK nm I found it, 'cept there's nowhere I can find to give him kudos. I agree with the one thing he says about this being a war, it is, unfortunately.
Personally I think we need to all camp outside the Senate and house of Reps until they pass this bill. Let them see the face of Lyme, and what it's doing. Don't know what kind of permit we'd need for that though.
Let them know we don't want the IDSA's thoughts on this, but the gov't we elected, that's what they're there for, that's what our founding fathers intended it for.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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bettyg
Unregistered
posted
...
slappy, forgot to tell you; i love your CDC meaning!!!!
here's the link for you/others about steere's graduation speech about lyme and US!
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