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» LymeNet Flash » Questions and Discussion » Activism » Time to BOMBARD CDC with emails!!!

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Author Topic: Time to BOMBARD CDC with emails!!!
paulieinct
LymeNet Contributor
Member # 17514

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The email address for CDC is:

[email protected]

I urge everyone to send an email to CDC BLASTING them on their deliberate campaign of misinformation.

Here is what I just sent:

Public Health DISASTER is unfolding‏




To [email protected]
TO: CDC

Hello:

Why does the CDC website continue to contain FALSE information regarding Lyme Disease? The recently released Embers studies show clearly that Borrelia burgdorferi persists as live organisms even after aggressive IV treatment. There is NO SUCH THING as post-treatment syndrome. It is ALL ACTIVE Borrelia INFECTION.

Are you deliberately trying to kill Americans? People are DYING from this disease. My mother was one of them.

Why were the Embers studies hidden for TWELVE YEARS??

Why doesn't your website clearly and EMPHATICALLY state that standard testing has so many false negatives that a coin-toss would be more accurate? There is a mention on your website, buried so well that few will ever see it, that testing is for epidemiological purposes. Why do virtually ALL DOCTORS, even here in Connecticut, not know this? All doctors here believe that standard testing is 100% accurate. Two-tier testing with ELISA as a screen is WORTHLESS.

Why do all doctors here in Connecticut RIDICULE the only doctors (ILADS) who know how to diagnose and treat this disease? Why do all doctors DISMISS IGENEX specialty lab as bogus, when in fact they are proven to have the best and most accurate testing for LYME?

I have learned much about this disease since I was diagnosed 3 1/2 years ago after DECADES of misdiagnosis. I now have multi-system disseminated disease - it has infected my brain, nervous system, joints and heart. I have the spine of a 90 year-old man, even though I am only 63. I have endured eight orthopedic surgeries, including two shoulder replacements, due to spirochete-riddled joints.

An orthopedic practice in this city has eight surgeons making money hand over fist operating on joints that have been ravaged by Borrelia, yet few if any patients get correctly diagnosed. BILLIONS of health care dollars are spent on these surgeries.

My estimate is that half my neighborhood has Lyme, yet most remain misdiagnosed. Most of my family has Lyme, most undiagnosed. The numbers of people presenting with "MS" and "ALS" has SKYROCKETED here in Connecticut. It is all LYME DISEASE and TREATABLE.

I urge you to stop your campaign of misinformation. I object to my tax dollars being spent on policies which are killing people and causing horrific, needless suffering.

Do not be surprised if a groundswell of public outcry over your deliberate campaign of misinformation results in CONGRESSIONAL HEARINGS.

I await your reply in this matter.

Sincerely,


Paul XXXXXXXXX
XXXX XXXXXX Rd.
XXXXXXX, CT XXXXX

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Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

Posts: 765 | From nw ct | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
paulieinct
LymeNet Contributor
Member # 17514

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up

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

Posts: 765 | From nw ct | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
AuntyLynn
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Damned Straight! WELL PUT!
Posts: 1432 | From New Jersey | Registered: Jan 2012  |  IP: Logged | Report this post to a Moderator
hammond
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I second that! What I find particularly offensive is the CDC mission statement with all it's gibberish about "leadership" "integrity" and "honesty."

What a crock. It's all about money. Period.

Posts: 65 | From oregon | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
ellenluba
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I think all this misinformation we're hit with is related. Right now if the IDSA is FORCED to review it's guidelines and involve patient input, we will get honesty in guidelines making it impossible for the CDC to continue it's misinformation. Most CDC docs are ID docs and will support what the IDSA says.

So, at least in my mind, the campaign to get the National Guidelines Clearinghouse to make the IDSA redo their guidelines is essential. PLEASE sign the petition at lymedisease.org to make this happen.
Ellen

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Posts: 819 | From New York, NY | Registered: Oct 2001  |  IP: Logged | Report this post to a Moderator
paulieinct
LymeNet Contributor
Member # 17514

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UP!!!!!!

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

Posts: 765 | From nw ct | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
   

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