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Posted by Tincup (Member # 5829) on :
 
Johns Hopkins & Health Departments nationwide actually KNOW and admit Lyme can be chronic, severe, and not easy to treat.


Public Health. 2014 Sep 8. pii: S0033-3506(14)00144-9. doi: 10.1016/j.puhe.2014.06.016. [Epub ahead of print]

Lyme disease and post-treatment Lyme disease syndrome: the neglected disease in our own backyard.

Crowder LA1, Yedlin VA2, Weinstein ER3, Kortte KB4, Aucott JN5.

Author information
1Lyme Disease Research Foundation, Inc., Lutherville, MD 21093, USA. Electronic address: [email protected].
2Lyme Disease Research Foundation, Inc., Lutherville, MD 21093, USA. Electronic address: [email protected].
3Lyme Disease Research Foundation, Inc., Lutherville, MD 21093, USA. Electronic address: [email protected].
4The Johns Hopkins School of Medicine, Baltimore, MD 21287, USA. Electronic address: [email protected].
5The Johns Hopkins School of Medicine, Baltimore, MD 21287, USA. Electronic address: [email protected].

Abstract

OBJECTIVES:

A survey was developed to assess experience and opinions about Lyme disease and post-treatment Lyme disease syndrome (PTLDS) among faculties in public health. No previous surveys of public health faculties have been found in the literature.

STUDY DESIGN:
This is a cross sectional study of public health school faculty members designed to measure knowledge and experience with Lyme disease and PTLDS using an internet survey instrument.

METHODS:
Participants were recruited using all the publicly available e-mail addresses of faculty members in all the 50 accredited Schools of Public Health in the United States.

RESULTS:
A 15% response rate was seen for the survey. 50% of respondents were from Lyme endemic states. Less than 5% of faculty members consider themselves expert in Lyme or PTLDS. Many faculty members had known someone with Lyme disease or PTLDS, but few had been diagnosed themselves.

Most believe that PTLDS can be severe and chronic, is not easy to treat, and does not resolve on its own, but were uncertain about its aetiology. Most respondents also felt that the incidence of Lyme disease will increase and that more education is needed.

CONCLUSIONS:
The need for further understanding and communication presents an opportunity for public health research and education in Lyme disease and the sequelae of PTLDS.
 
Posted by Tincup (Member # 5829) on :
 
You'd think Hopkins and Wormser, et al. would be trying to educate their own rather than wasting time and our tax-payer dollars trying to shut us up.

???????????????????
 
Posted by lymie_in_md (Member # 14197) on :
 
I'm not sure TC but I think Wormser is either the emperor or darth vader as he working the dark side of the force. He is still politically correct however, at least for his cancer awareness, as he has a pink light saber with a pink cancer ribbon. [lol]
 
Posted by Keebler (Member # 12673) on :
 
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They are not acknowledging chronic lyme here at all, but denying it by the term, POST. They want to educate on the POST nature of it, and that always denies persistent infection involvement.

They want to be sure any "nonsense" of patients wanting treatment is cut to the core. They want all their doctors "trained" to just deny treatment -- while appeasing patients that "yes, we know you are still in pain, still FEEL ill, but . . . it's just POST lyme." is what this really says.
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Posted by Tincup (Member # 5829) on :
 
Lymie,

Just got a letter from Darth Vader. He is highly insulted his name has been associated with Wormser. He said to tell you, "There is a disturbance in the Force when Wormser is around."

[lol]

Keebler,

Typically that is true. In this situation they use the "Post" reference to keep the study's objectives and wording "acceptable" for the IDiots. I don't like it at all, one bit, but at least the underlying message is quiet clear.

[Big Grin]
 
Posted by 'Kete-tracker (Member # 17189) on :
 
"You're all better. It's just post-Lyme syndrome."

Oh yeah? I'd give anything to even have a research program (Gov't &/or privately-funded) investigate why many of us still have daily "issues" that keep us from feeling/ believing we're actually healthy again.

My localized muscle spasms, brain zings/ tinnitus & [sometimes spreading] morning periphrial neuropathy, which all swell & ebb in intensity... ain't no "auto-immune disorder", I can tell ya *that*!

MUCH more likely the body is still dealing with *some* form of borelia Burgdorferi that's spread throughout certain areas of the body, in my opinion.

Or, scary as it sounds, it could be a morphed form of Lyme that is made up of 1/2 Burgdorferi & 1/2 "us"!
(Does anyone recall the late Dr. M's comments- in the original U.O.S. film release- of a DNA structural combination he found in the brain? More than just a "plaque"!)
 
Posted by lymie_in_md (Member # 14197) on :
 
So while stealing darth vader light saber I got an interesting thought. Sorry TC I made him unhappy twice, my bad.

I believe we as community could do our own research, but we've been doing it. And we do on this site all the time, between herbals, diet, rife, photons, energetic testing, homeopathy and detoxification mind over matter (I'll call it MOM -- [lol] ). We research all the time, we study ourselves all the time. It might just be, that we have to get better at it.

One thought is lyme will be given to more scientists and they will have self interest to help us.

The LLMDs learn from us all the time.

So my question: is how do we best do research ? Have the government do it (does anyone trust that) or find a way to do it better ourselves.
 


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