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» LymeNet Flash » Questions and Discussion » Medical Questions » CDC FINALLY responds to my query

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Author Topic: CDC FINALLY responds to my query
paulieinct
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I sent CDC the following email about four times over three weeks before I finally got a response:



-----Original Message-----

From: [email protected]
Sent: 3/27/2012 11:47:49 AM
To: [email protected]
Subject: PLEASE RESPOND

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,


Paulie XXXXXXXX
XX XXXX XXXXX Rd.
XXXXXXXX, CT XXXXX

___________________________________________

____________________________________________

Here is CDC's response:

Thank you for your inquiry to CDC-INFO. In response to your multiple comments on Lyme disease, we can provide you with the following information.

We have forwarded your inquiry to the appropriate CDC program. In the meantime, the following information may be useful.

If you have concerns regarding the physicians in your area, we recommend contacting your state medical board:

Connecticut Medical Examining Board
http://www.ct.gov/dph/cwp/view.asp?a=3143&q=388902

Also, in addition to research projects within CDC, the Lyme disease program of CDC has been funding research at outside institutions aimed at the development of better diagnostic tests. This includes work aimed at:

* Identification of factors that lead to more severe disease,
* Evaluation of proteins that vary as Lyme disease bacteria cycle between ticks and mammals; and
* Evaluation of how human cells respond to infection by Lyme disease bacteria so that new diagnostic tests for active infection may be developed.

As a public health message, the CDC would like to remind you that the best way to prevent Lyme disease, and other tickborne diseases, is to prevent tick bites. You should avoid areas with a lot of ticks and use insect repellent to keep ticks off of your body. Check your body carefully for ticks after spending time outdoors.

If you think you may have been bitten by a tick and develop a fever or rash, talk to your health care provider right away.

For more information about Lyme disease, please visit the CDC website:

Lyme Disease
National Center for Emerging and Zoonotic Infectious Diseases, Division of Vector-Borne Diseases
http://www.cdc.gov/lyme/

Any links provided to non-Federal organizations are provided solely as a service to our users. These links do not constitute an endorsement of these organizations or their programs by CDC or the Federal Government, and none should be inferred. The CDC is not responsible for the content of the individual organization web pages found at these links.

Thank you for contacting CDC-INFO Contact Center. Please do not hesitate to call 1-800-CDC-INFO, e-mail [email protected] or visit http://www.cdc.gov if you have any additional questions.

CDC-INFO is a service of the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR). This service is provided by Vangent, Inc. under contract to CDC and ATSDR.

EI 6854

[THREAD ID:2-1DAV0]

[ 03-30-2012, 09:51 PM: Message edited by: paulieinct ]

--------------------
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
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And here is my response to their response:

Hello:

THANK YOU for your response.

You state, "Any links provided to non-Federal organizations are provided solely as a service to our users. These links do not constitute an endorsement of these organizations or their programs by CDC or the Federal Government, and none should be inferred."

If that is true, why do you not link to ILADS as well as to IDSA??? You would certainly be providing a service, without endorsing the organization. And what would that service be? SAVING LIVES. Patients who find themselves "on the road to nowhere" following IDSA guidelines would at least know that there is an alternative school of thought on the subject of Lyme diagnosis and treatment.

I am sure you must be aware that the emerging science is causing the IDSA position to lose all credibility. It won't be long before the magnitude of this epidemic and the needless suffering caused by IDSA's willfull ignorance become front-page news. How do you think your agency will look when that happens?

PLEASE consider AT LEAST linking to ILADS on the CDC website. PLEASE let people know there is another point of view.

Sincerely,

Paulie XXXXXX
XXX XXXXXXXX Rd.
XXXXX, CT XXXXX

--------------------
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.

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TerryK
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Good Job!! Love your response to them.

I wrote to them several years ago requesting that they link to ILADS. I don't recall ever getting a response addressing my request.

They do NOT want to be confused with the facts!! [cussing]

[ 03-31-2012, 12:50 AM: Message edited by: TerryK ]

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nefferdun
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Good for you! More of us need to speak up. We need to do something. I feel like a lamb being lead to slaughter.

Can lymenet sell bumper stickers? It would make lyme so much more obvious and we would be able to recognize each other.

This will probably be moved to general support.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
nefferdun
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I just wrote them myself. As soon as I pushed send my email locked up!! I can't get it there now. Just coincidence but kind of scary as I was apprehensive about "revealing myself".

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
17hens
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quote:
Originally posted by paulieinct:
it has infected my brain, nervous system, joints and heart

I disagree, Paulie. You've got a sharp brain that you obviously use and a big old heart that doesn't miss a beat.

Outstanding letter!! Thank you for speaking up for us all. Let's pray that someday your voice will be heard.

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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cht girl
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Yes, thank you Paulie. Yes, Nefferdun, we all need to find ways to speak up. Our local support group is getting very organized, and I hope to help with some advocacy issues in the near future. Well done, Paulie!
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Lymedin2010
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Kudos for your endeavors!

I feel the same way about the epidemic going out of proportion. I have a few family members with it and there are so many individuals in my neighborhood who have gotten bit. In 6 houses that are literally right next to each other, there are 15 cases.

When I started to prod a little more outside my neighborhood, I was shocked to discover how widespread it really is. One of these days I will gather all my stories and create a post.

I applaud your efforts and support your attempt. If there is anything we can do, let us know.

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nefferdun
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My Letter:


This is to inform you that Lyme Disease is in Montana. I was bitten by a
common wood tick at Lake Como in Ravalli County Montana the end of May
2006.
Every visit to the doctor I was told I could not have lyme disease, because

Montana is not in the "lyme zone". I did not suggest lyme disease because
I
did not know what it was. I just exhibited every symptom of it and always

told the doctors my symptoms began shortly after the tick bite. The first

visit I even had the classic EM rash. I had not been out of the state.

In 2010 I tested CDC positive for Borellia, Babesia Duncani and Ehrlichia.

My treatment costs have been staggering because I have to travel to find a

doctor that knows how to treat it. I tried to get help from several local

doctors, including most recently an internist in Missoula. He said my
blood
work confirmed a chronic infection but because Lyme Disease does not exist

in this state he does not "see it" and therefore does not treat it. How
ignorant is that?

The hospital where I was misdiagnosed 5 times is supposed to be working in

conjunction with Rocky Mt Labs. Although the lab knows about the pathogens

in the wood tick and promptly warns all new employees, the hospital refuses

to warn the public. In fact, you have not even been informed of my
infection although I told the hospital in a letter almost a year ago.

In 2003 the state of Montana collected 345 ticks that had bitten people. 6

of those people developed the EM rash which is conclusive of Lyme Disease.

According to your statistics, only 50% of people that are transmitted Lyme

actually get the rash. Therefore it is likely that 12 of the 34 people
bitten by ticks got lyme disease. This in NOT RARE. In fact, it means one

out of 30 people bitten by a tick in this state contracts Lyme Disease.
Why does no one know about it? Why are doctors and hospitals not
diagnosing
and treating it? What is going on?

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
17hens
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Great letter, neff! You go, Girl!!

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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dbpei
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Wow - what a great thing you both have done! Thank you so much for speaking up. We all need to do this if we want things to change...
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sickofsick
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Great job to both of you! This disease cannot be ignored and we need to be heard.

I live in a state that claims we don't have the statistics to support all the people who claim to have Lyme here??? Sent a letter to the State department health recently, but still awaiting response.

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Lymetoo
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Maybe this is who we should all be writing to.

Thanks paulie and neffer!

--------------------
--Lymetutu--
Opinions, not medical advice!

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paulieinct
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Thanks everybody for your comments and for your own advocacy efforts.

This epidemic is becoming so huge, that I feel it will soon reach a tipping point where the floodgates will burst open. Here in CT, it is EVERYWHERE.

It is SO big, that I believe that if everyone with Lyme were to be diagnosed and treated that our health care system would collapse. It could be this realization that is driving the willful ignorance of the medical establishment and the insurance companies.

Only those who have educated themselves about Lyme and who scream the loudest have any chance of getting treated. The rest will fall by the wayside, their doctors just watching them die, and then putting something else on the death certificate.

I have filed an official complaint with the CT Dept. of Public Health against a local doc who tried to cover-up a Lyme death - never mentioned it on the death certificate. This complaint will be investigated by the same board that brought Dr. J. up on charges and disciplined him (see my other posts on this).

It will be interesting to see how they handle this complaint. I will keep you posted.

Tonight, two neighbors stopped by, a married couple. He was diagnosed and treated for Lyme years ago, was very sick, couldn't work for six years, and they almost went broke.

She supposedly has TBI (traumatic brain injury) from a car accident years ago. The accident itself was not that bad, and her neuro symptoms did not show up until weeks or months later.

I know she has been misdiagnosed, she has LYME, and the accident was the trauma that caused Bb to flare. She has lesions on her brain, episodic speech difficulties, trouble walking, cognitive issues, hyperaccussis, double-vision, etc, etc, etc.

I lent them the dvd Under Our Skin, and they returned it tonight. I am waiting for her to make the connection between her symptoms and what she has now learned about Lyme. So far, NADA. But I know her husband gets it.

Diagnosis here is always A.B.L. - ANYTHING BUT LYME.

Keep writing those letters folks! -Paulie

--------------------
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.

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nonna05
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Problem is , so many of us are so weak and tired ,
For me,just to open my own mail is usually a once a month event.

It literally lays here in bed with me waiting for that short breakthrough to put it together...after that it waits for next spurt to actually do it.

So many are like this, how do we get the masses it will take to get through to the forces that be.

They are Fed, State, City, Different associations
,
on and on..

I really if awful.. Before I was hit so bad ,This would have been a cause to go after, I would have had energy and stamina and a brain that wasn't fogged,


I'm so glad that there are those here fighting, sending letters etc...but we need the masses and so many of us are horizontal all ./most the time.

I just pray to get "me" back and to be able to help...

.I'm not positive , because of how the medical system didn't work, but there's a good chance I've lost two to CLD and or something very similar.

I tried as I was starting to feel it come on and before I was this worn out to ask, look for tie-ins.

Sent on my way each time as if shame on you or some conspiracy thinking

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nefferdun
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Maybe if enough of us wrote the CDC as well as our senators, congressmen and network TV, then they would realize it is bigger than they realize. Maybe it is possible to wake them up if we all scream in one loud voice.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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dbpei
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I have heard that libraries respond very well to someone facilitating a viewing of 'Under Our Skin'. Apparently some versions come with a workbook for discussion afterward for anyone wanting to do this. When I am feeling up to this, I may give it a try. It is a wonderful way to get the word out there.
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paulieinct
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Just got this response from CDC:

"Thank you for your inquiry to CDC-INFO regarding linking to ILADS and the IDSA on the CDC website.

Your comments have been forwarded to the appropriate CDC program for their information. They will contact you directly if they have any additional questions.

Any links provided to non-Federal organizations are provided solely as a service to our users. These links do not constitute an endorsement of these organizations or their programs by CDC or the Federal Government, and none should be inferred. The CDC is not responsible for the content of the individual organization web pages found at these links.

Thank you for contacting CDC-INFO. Please do not hesitate to call 1-800-CDC-INFO, e-mail [email protected], or visit www.cdc.gov if you have any additional questions.

CDC-INFO is a service of the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR). This service is provided by Vangent, Inc. under contract to CDC and ATSDR."

--------------------
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.

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nefferdun
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I got the same form letter. Then I got a response informing me that I am mistaken that Lyme Disease is in Montana and that it is carried by the wood tick. I hope I am not picked up and sent to a re-education camp.

I wrote them back and received another form letter. This time, when I responded, I took the liberty of calling them idiots.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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shazdancer
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dbpei saud, "I have heard that libraries respond very well to someone facilitating a viewing of 'Under Our Skin'."

Let your librarian know that the film was designated one of the top documentaries of 2010 by Video Librarian, and a favorable review in Library Journal (both are publications to the library profession often used in selection). Better still, ask if you can buy and donate a community use version, help them screen it once at their library, then donate it to their collection.

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paulieinct
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nefferdun: How can they deny it's in Montana, when it is known it is in all the States?

--------------------
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.

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nefferdun
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Here is their email. I deleted the end with links.

Thank you for your inquiry to CDC-INFO. In response to your request
for
information on Lyme disease from a wood tick and why are doctors and
hospitals in your area not diagnosing and treating it, we are pleased to
provide you with the following information.

Most physicians rely on the most up to date scientific evidence and recommendations to assist them with making a diagnosis. CDC is working to implement an education plan for all types of healthcare providers,including physicians, physician assistants, and nurse practitioners.

CDC alsoprovides
physician consultation in diagnosis of Lyme disease. If you feel that you were incorrectly diagnosed by a particular physician, please contact your state medical board at: http://www.fsmb.org/directory_smb.html

Lyme disease is spread through the bite of a blacklegged tick (Ixodesscapularis or Ixodes pacificus) that is infected with Borrelia burgdorferi.

In the United States, most infections occur in the following endemic
areas:

Northeast and mid-Atlantic, from northeastern Virginia to Maine
North central states, mostly in Wisconsin and Minnesota
West Coast, particularly northern California
Maps showing the distribution of human cases are based on where people live, which because of travel, is not necessarily where they became
infected.

Cases are sometimes diagnosed and reported from an area where Lyme disease is not expected, but they are almost always travel-related.
This information is found
at:http://www.cdc.gov/lyme/faq/index.html#everywhere
Ticks not known to transmit Lyme disease include Lone star ticks
(Amblyomma americanum), the American dog tick (Dermacentor variabilis), the

Rocky Mountain wood tick (Dermacentor andersoni), and the brown dog tick
(Rhipicephalus sanguineus).
This information is located on the Lyme disease transmission webpage
at:
http://www.cdc.gov/lyme/transmission/index.html

The best way to prevent Lyme disease, and other tickborne diseases, is
to
prevent tick bites. You should avoid areas with a lot of ticks and use
insect repellent to keep ticks off of your body. Check your body carefully for ticks after spending time outdoors.
;
If you think you may have been bitten by a tick and develop a fever or

rash, talk to your healthcare provider right away.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
nefferdun
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Infuriating. Crazy, stupid or a cover up?

They do not know there is lyme disease here because they don't want to know.

Whoever is responsible for this should be charged for crimes against humanity.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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WPinVA
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I would love to do some Lyme advocacy but it is hard when I can barely even get through the day as it is. I know we are all probably in the same boat. Maybe we could start on the local level.

Has anyone had any luck with your local government? I would love to convince my county to enact some tick prevention measures but I don't know where to start. Are there any model programs out there that I could point them to? There must be some towns in Connecticut or somewhere who hav already figured this out. If someone can point those out, maybe I could try to put together a form letter that others on here could use as well.

We all have such little energy that we have to pool our resources! Another area would be education - getting links to ILADS, LLMDs, etc on the County's web page. And education in the schools - maybe go through the school nurses, etc.

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