Lyme Patients Launch Campaign to Protest of IDSA Guidelines

Wow. This seems big. A total of 554 thirty-second ads?!  

-Bob

FOR IMMEDIATE RELEASE

 

Lyme Patients Launch Aerial Campaign to Support Boots on the Ground Protest of IDSA Guidelines

 

ARLINGTON, VA, Friday, April 17—The Mayday Project Lyme patient advocacy group announced the launch of a television advertising campaign to support its boots on the ground protest scheduled for April 29 through May 1 at the headquarters of the Infectious Diseases Society of America (IDSA). 

 

The ad raises awareness about the "hidden" epidemic of chronic Lyme and the harm caused by the IDSA Guidelines for diagnosis and treatment of Lyme disease.

 

The campaign includes 554 thirty-second spots that will run throughout the Washington, DC metro area, including Arlington County, VA, where IDSA's headquarters is located. The ads will run on CNN, Fox News, the Discovery Channel, and the Weather Channel through May 3.

 

Click here for full release: http://www.webwire.com/ViewPressRel.asp?aId=197143

Clues to How an Electric Treatment for Parkinson’s Works

In 1998, Dr. Philip A. Starr started putting electrodes in people's brains.

A neurosurgeon at the University of California, San Francisco, Dr. Starr was treating people with Parkinson's disease, which slowly destroys essential bits of brain tissue, robbing people of control of their bodies. At first, drugs had given his patients some relief, but now they needed more help.

After the surgery, Dr. Starr closed up his patients' skulls and switched on the electrodes, releasing a steady buzz of electric pulses in their brains. For many patients, the effect was immediate.

More:

http://nyti.ms/1FYDmz4

or

http://www.nytimes.com/2015/04/16/science/clues-to-how-an-electric-treatment-for-parkinsons-works.html?smid=tw-share&_r=0

Eating Healthy Can Be A Mental Disorder- Orthorexia

I guess anything can be taken too far. Now they have a name for trying to eat too healthy! But as a contributor to the medical listserv from where I received this story, 

"Have no fear- "orthorexia can successfully be treated with a combination of cognitive-behavioral therapy, psychoeducation, and medication."   Or my preference to that really unexciting 'standard of care'- lots of ice cream and cake!

Officials Declare "Eating Healthy" A Mental Disorder

https://www.nationaleatingdisorders.org/orthorexia-nervosa

Neuropsychiatr Dis Treat. 2015 Feb 18;11:385-94. doi: 10.2147/NDT.S61665. eCollection 2015.
The clinical basis of orthorexia nervosa: emerging perspectives.
Koven NS1, Abry AW1.
Author information

1Department of Psychology, Bates College, Lewiston, ME, USA.

Abstract
Orthorexia nervosa describes a pathological obsession with proper nutrition that is characterized by a restrictive diet, ritualized patterns of eating, and rigid avoidance of foods believed to be unhealthy or impure. Although prompted by a desire to achieve optimum health, orthorexia may lead to nutritional deficiencies, medical complications, and poor quality of life. 

Despite its being a distinct behavioral pattern that is frequently observed by clinicians, orthorexia has received very little empirical attention and is not yet formally recognized as a psychiatric disorder. In this review, we synthesize existing research to identify what is known about the symptoms, prevalence, neuropsychological profile, and treatment of orthorexia. 

An examination of diagnostic boundaries reveals important points of symptom overlap between orthorexia and anorexia nervosa, obsessive-compulsive disorder (OCD), obsessive-compulsive personality disorder (OCPD), somatic symptom disorder, illness anxiety disorder, and psychotic spectrum disorders. 

Neuropsychological data suggest that orthorexic symptoms are independently associated with key facets of executive dysfunction for which some of these conditions already overlap. Discussion of cognitive weaknesses in set-shifting, external attention, and working memory highlights the value of continued research to identify intermediate, transdiagnostic endophenotypes for insight into the neuropathogenesis of orthorexia. 

An evaluation of current orthorexia measures indicates a need for further psychometric development to ensure that subsequent research has access to reliable and valid assessment tools. Optimized assessment will not only permit a clearer understanding of prevalence rates, psychosocial risk factors, and comorbid psychopathology but will also be needed to index intervention effectiveness. 

Though the field lacks data on therapeutic outcomes, current best practices suggest that orthorexia can successfully be treated with a combination of cognitive-behavioral therapy, psychoeducation, and medication. 

KEYWORDS: 
diagnosis; endophenotypes; neuropsychology; orthorexia nervosa; psychometrics; treatment
Link to abstract- http://www.ncbi.nlm.nih.gov/pubmed/25733839

Another Powassan Virus article

From CTboom.com

Augh.  Here’s a reason to freak out.  A new virus similar to Lyme disease has been detected in Bridgeport and Branford.  The bad news?  There’s no treatment for it and it may be deadly.  The good news?  No human has contracted it yet in our state.

It’s called “Powassan” and it’s a tick-borne disease.  Unlike Lyme disease where your symptoms show up relatively quickly, this virus can show no signs for up to a month.  Like Lyme disease, if contracted, one may start getting headaches, nausea, and fever.  It can attack the central nervous system and trigger meningitis.

Last year 12 people in the country contracted the disease.  People are being urged to wear plenty of clothing and to cover up skin whenever traveling into wooded areas.  So far we couldn’t figure out where or how they detected the virus in those towns.  In the meantime if you like to freak out over diseases that most likely will never affect you, here’s a super comprehensive YouTube video about the new virus.

Here's the original article link:
http://ctboom.com/a-new-incurable-virus-found-in-bridgeport-and-branford/

Experts warn of potentially deadly tick-borne illness similar to Lyme disease

By Melinda Carstensen

Published April 10, 2015

(C) FoxNews.com

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Every year in the United States, there are at least 20,000 confirmed cases of Lyme disease, a painful but treatable tick-borne illness. But now, experts are warning of a faster-acting, untreatable and potentially fatal sickness called Powassan virus that is most commonly found in the same tick that hosts Lyme disease.

The IDSA and CDC's answer to claims of chronic LD

"Chronic Lyme Disease"

I am posting this for informational purposes, not because I agree with the IDSA's position on chronic Lyme disease. I do not. My journey has been an arduous, painful and expensive one, stretching over ten years at this point, with no clear end in sight.  (I don't want to count the price of treatment in $ terms. It's too depressing and makes me angry.)  If you are dealing with and living with what you suspect may be persistent and chronic Lyme disease, it will certainly be helpful to understand the position the medical establishment takes on the topic. Why? Because it affects virtually all aspects of your treatment protocol, from the very first intake interview with a prospective doctor to what your providers such as HMO, Social Security, SSDI, private disability insurance, (non)coverage, etc. will pay for your treatments, and how long they will pay. Knowing the position of the "other side" empowers us to better self advocacy and, if used wisely,  may even advance the political and scientific agendas around Lyme and associated tick-borne diseases.  -Bob

What is "chronic Lyme disease?

Lyme disease is an infection caused by the bacterium Borrelia burgdorferi. In the majority of cases, it is successfully treated with oral antibiotics. Physicians sometimes describe patients who have non-specific symptoms (like fatigue, pain, and joint and muscle aches) after the treatment of Lyme disease as having post-treatment Lyme disease syndrome (PTLDS) or post Lyme disease syndrome (PLDS).....

Time is short. Express your opinion to the IDSA in our survey now!

Having trouble viewing this email? Click here

Let your voice be heard! 3500+ people have taken our survey. Have you?  The IDSA is reviewing its Lyme guidelines. Its handpicked panel excludes Lyme patients and Lyme-treating doctors. It includes people with financial conflicts-of-interest. Our survey allows you to express your views about Lyme diagnosis and treatment. We'll share results with the IDSA, journalists, politicians, health policy makers, and the public at large. Time is short. Do it now.  Click here to take the survey. The IDSA has a complicated process for public comments. For more information: Part 1--How to submit comments Part 2--What to say  Part 3--Why this survey is important Raise your voice with ours What a real patient representative looks like Video about the survey from Ticked Off Music Fest One patient's comments to the IDSA LymeDisease.org, publisher of The Lyme Times, advocates nationally for people with tick-borne diseases, educates the public, and helps fund medical research. We are the go-to source for news, information, and health policy analysis in the Lyme community. Become a member today.

Thousand-year-old Anglo-Saxon potion kills MRSA superbug

Here's an interesting story about an elaborate concoction that ancient Anglo-Europeans somehow dreamt up. How do they do that?  Even breaks up biofilms, apparently. Check out the story and video here:

http://www.cnn.com/2015/03/31/health/anglo-saxon-potion-mrsa/index.html

Happy Easter

Best Lyme coverage to date?

I received this today from one of the most prolific Lyme activists, Jessica Bernstein. I had just read the article yesterday at the infusion center where I go for treatment. I believe she is right. This is huge coverage for Lyme, and we should leverage it as much as possible to our advantage.

-Bob

As you may know, People magazine just did a cover article about singer Avril Lavigne's battle with Lyme disease. This is probably the best coverage Lyme has received in the history of the disease. People magazine is one of the top 10 most read magazines in the United States. I recommend that we use this opportunity to flood People magazine with letters to the editor to help get our message out there. 

Keep letters short and simple with one main message. First thank them for doing the article about Avril. Then decide what message you want to get across. My focus was on how we need more funding for research and more media attention informing people about this silent pandemic.

Here's the email to send your letter to the editor: Editor@people.com