Archive for the ‘Activism’ Category

Hope for Canada

canada_flag

http://www.cbc.ca/news/canada/ottawa/lyme-disease-canada-conference-ottawa-1.3582872

A three-day conference in Ottawa with politicians, patients and scientists will attempt to determine a national framework for how Lyme Disease is dealt with in Canada.  So far patients have been excluded from discussions about how the disease should be handled, but this topic will be discussed at the conference.

Currently, many Canadians with Lyme Disease have to travel to the U.S. to get proper treatment.

For some excellent expert interviews with Dr. McShane, Dr. Horowitz, Dr. Donta, Dr. Chan, and Dr. Barthhold, go here:  http://www.cbc.ca/natureofthings/features/video-expert-interviews

 

Category:

Activism, Lyme, Uncategorized

Buy One Documentary – Get One Free!

UNDER OUR SKIN BUY-ONE-GET-ONE FREE DVD SALE!

https://player.vimeo.com/video/96124533?title=0&byline=0&portrait=0 <p><a href=”https://vimeo.com/96124533″>Under Our Skin (Directors Cut)</a> from <a href=”https://vimeo.com/openeyepictures”>Open Eye Pictures</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>”>http://

<p><a href=”https://vimeo.com/96124533″>Under Our Skin (Directors Cut)</a> from <a href=”https://vimeo.com/openeyepictures”>Open Eye Pictures</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

Under Our Skin Trailer

https://player.vimeo.com/video/105289249?color=ffffff&title=0&byline=0&portrait=0 <p><a href=”https://vimeo.com/105289249″>Under Our Skin 2: Emergence &ndash; Trailer</a> from <a href=”https://vimeo.com/openeyepictures”>Open Eye Pictures</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>”>http://

<p><a href=”https://vimeo.com/105289249″>Under Our Skin 2: Emergence &ndash; Trailer</a> from <a href=”https://vimeo.com/openeyepictures”>Open Eye Pictures</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

Emergence – Under Our Skin 2 Trailer

May is Lyme Disease Awareness Month and we’re marking the occasion with a giant DVD sale to help spread awareness about a disease that continues to cause untold suffering worldwide. UNDER OUR SKIN and it’s sequel EMERGENCE have brought unprecedented visibility to the Lyme crisis literally with millions of viewings. From Netflix & Amazon to PBS to Capital Hill to a theater near you, the films have helped change the way the public views the disease and the people suffering from it.

For the month of May, we’re offering a two-for-one BOGO Special: For every Home Use DVD you purchase, we’ll throw-in another for free. Buy one get one free; buy three get three free, and so on. You can use these free DVDs to educate friends, family and physicians – the tab’s on us! Don’t miss out on this opportunity!  http://www.underourskin.com/store  Click here to order.

SCREEN UOS IN YOUR COMMUNITY & (NOW) LOCAL THEATER!

Films are among the best tools for grassroots education and activism. Since it’s release, UNDER OUR SKIN has screened in thousands of communities by individuals like you or organizations like yours. Our Community Use DVD Set includes both UNDER OUR SKIN & EMERGENCE and is licensed for free public screenings of up to 100 people. We also have other licenses available for large scale screenings or fundraisers. For any screening we can provide you with organizational and promotional materials, as well as advertise your event on the UNDER OUR SKIN Facebook page. With almost 37,000 likes, we’re the largest Lyme-related social-media community online! Go to the Screenings page of the UNDER OUR SKIN website and fill out our “Host a Screening” form.
Now, on to some BIG NEWS! We’ve joined forces with Tugg, a web-platform that helps individuals and groups set-up customized movie screenings, to show our films in theaters across the country! This is a fantastic way to raise awareness and bring visibility beyond your Lyme community, where it might attract more movie goers and media attention. These events can also be used as organizational or individual fundraisers, and include panel discussions or even a filmmaker Q&A. Plus, it’s EASY! There are only four steps to hosting a theatrical screening:

1.) Fill out the Event Request Form and select the theater, date, and time.
2.) After theater approval, your Event Page can begin reserving tickets.
3.) Share the event with your network and confirm your screening by selling enough tickets before the deadline.
4.) Sit back and enjoy the show!

As always, feel free to let us know how we can better partner with you to make the greatest impact together. Speaking of together, below you’ll find some Lyme Awareness Month events across the the country. This May, may we educate, pontificate and activate…!

LYME DISEASE AWARENESS MONTH EVENTS

May 1: Portland, ME
LymeBuddies Kick off of Lyme Disease Awareness Month
Educational presentations: http://www.facebook.com/events/1699376360330187/

May 5: Saratoga Springs, NY
What You NEED to Know About Lyme and Other Tick-Borne Diseases
Holly Ahern, Asst. Professor of Microbiology at SUNY Adirondack: http://www.lymeactionnetwork.org/events.html

May 7: Golden, CO
Lyme and Other Tick-borne Diseases—First Rocky Mountain Forum
Speakers: Dr. Dan Cameron, immediate past president of ILADS; Pat Smith, President of Lyme Disease Association; Dr. David Martz, and others: http://www.facebook.com/events/478948055635887/

May 7: Bar Harbor, ME
Lyme Disease Symposium on Mount Desert Island
Speakers: Beatrice Szantyr, MD; Keelyn Wu, DO; Meryl Nass, MD; Richard Matthews, DC: http://www.mdilyme.org/

May 7: Binghamton, NY
Lyme Disease Conference at Binghamton University
Dr. Baghat Sammakia, PhD, Binghamton University; Dr. Ralph Garruto, PhD, Binghamton University; Ms. Amanda Roome, Binghamton University; Robert Giguere, IGeneX Labs; Dr. Tom Moorcroft, and Dr. Richard Horowitz: http://www.southerntierlymesupport.org/

May 8: Vestal, NY
“The Little Things”
A dramatic reading about 17-year-old Lyme victim Joseph Elone’s family, by Storyhouse Theater. Performance begins at 11:30 a.m. Talk following by Dr. Richard Horowitz. Free admission, but you must register in advance for tickets. More information at: http://www.southerntierlymesupport.org/

May 10: White Bear Lake, MN
Minnesota Ticks and Tick-borne Disease Prevention
Meeting of the Minnesota Lyme Association. Speaker: Dave Neitzel, of the Minnesota Dept. of Health: http://www.mnlyme.org/meetings.html

May 14: Lancaster, PA
Tick-borne Disease Patient Symposium
Keynote speaker: Dr. Daniel Jaller. Breakout session speakers include: Rita Rhoads, CNP, Dr. Martin Mulders, Dr. Norton Fishman, and Dr. Rosalie Greenburg: http://www.eventbrite.com/e/pa-lyme-resource-network-patient-symposium-tickets-21040163696

May 14: Queensbury, NY
Take Back Your Life
Day-long Lyme workshop, sponsored by Lyme Action Network. Stay tuned for details. http://www.lymeactionnetwork.org/events.html

May 15: Ashburn, VA
6th Annual Loudoun Lyme 5K/10K & 1K Fun Run
http://www.natcaplyme.org/events/6th-annual-loudoun-lyme-5k10k-1k-fun-run

May 17: Cambridge, MA
“When Your Child Has Lyme Disease: A Parent’s Survival Guide”
Guest speaker Dorothy Leland speaks about her new book at the bi-monthly meeting of the Lyme support group sponsored by the Dean Center for Tick-borne Diseases: http://www.spauldingrehab.org/assets/spaulding_pdfs/Bi-weekly-Spring-Summer-2016.pdf

May 18-21: Arlington, DC
The MayDay Project Events
The MayDay Project is sponsoring a number of direct actions and educational events during Lyme Awarness Month aimed at policy makers and politicians. For more info: http://www.themaydayproject.org/

May 19: Danbury CT
10th Annual Lyme Connection Program, Western Connecticut State University
Health Fair begins at 5 pm. Program at 7 pm. Free and open to the public. Keynote speaker: Dr Kenneth Liegner; Award to Dr. Charles Ray Jones: http://www.LymeConnection.org/

May 21: Worcester, MA
Central Mass Lyme Disease Conference
Keynote address: Dr. Charles Ray Jones. Other speakers include Dr. Steven Phillips, Dr. Kenneth Bock, Dr. Sheila Statlender, authors Jenny Rush and Dorothy Leland, and more: http://www.centralmasslymeconference.com

For more information or to contact us: UnderOurSkin.com

Category:

Activism, Uncategorized

May – Lyme Disease Awareness Month and meetings

May is Lyme awareness month

There is no one better equipped to spread the word about Lyme Disease than you – a sufferer.  There’s something authentic about relating to people your personal story.

Highlights of what’s important to share:

1.  Lyme Disease is usually a complicated illness for most people as we are infected with far more than borrelia, the causative agent of LD.  All of these pathogens work together to evade the immune system.  Symptoms vary from person to person and can be anything.  If someone is concerned, they should start by filling out some checklists which can be found here:
https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf
symptom-check-list-chart-dr-burrascano-10
https://madisonarealymesupportgroup.wordpress.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/
https://madisonarealymesupportgroup.wordpress.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/
2.  Most general practitioners have been educated that LD is hard to get and easy to treat with 21 days of Doxycycline.  This is far from the truth unless you are lucky enough to see the tick on your arm and have the classic bullseye rash, and even then it’s Russian Roulette.
3.  Testing in a word, sucks.  The two-tiered blood testing the CDC supports (ELISA and Western Blot) is no better than a coin toss, and borrelia don’t like to hang out in the blood but rather in immunopriviledged sites like your brain and the synovial fluid in your joints.  Going to a regular practitioner and taking the standard tests, if you test negatively, will give you a false sense of security while you may very well be infected.  On the other hand, if you test positively, they will treat you with 21 days of Doxy.  If symptoms remain they are more likely to give you an anti-depressant than further treatment – while  hideous infections are allowed to fester and worsen.  While Doxy is a wonderful first-line drug it does not work against Babesia and some other pathogens.
4.  The earlier you jump on this the better.  Research shows that those who get treatment right away are far more likely to kick this than those who wait.  Since many symptoms mimic the aches and pains of age, many chalk up their symptoms to the aging process rather than a disease which can worsen over time and kill – with the ability to enter every organ in the body.
5.  After filling out the checklists above, if you have a preponderance of symptoms, get to a Lyme Literate Doctor (LLMD).  They are specially trained by ILADS (The International Lyme and Associated Diseases Society) and understand the complexity of MSIDS (multi systemic infectious Disease Syndrome – or Lyme with friends).  They typically use a far more sensitive test – that while still a blood test – shows many more elements.  They also will diagnose you clinically  – not just on what a test shows.  
6.  One of the best ways to inform folks is to have them watch the documentary, “Under Our Skin,” which does a superb job of showing the schism in the medical community as well as real people who are suffering due to the politically incorrect position of MSIDS in the medical community.  Nothing quite replaces seeing 30-40 people all saying, “I was diagnosed with MS, Lupus, Chronic Fatigue, and the whole time I had Lyme Disease.”  It is a sad but effective movie that most accurately expresses what MSIDS patients face.  For me it nailed my diagnosis before I had seen one doctor – it’s that good.  I bought 4 copies and dole them out to people.  It’s the best investment in people you could make – besides your time.
7.  Bring people to your local support group.  Being in a room full of people fighting the same battle is something to behold.  Often, this disease isolates folks, even from their own family and friends – as it’s almost impossible to believe unless you are walking the path and have experienced it personally.  The sufferers that bring their spouses and family feel much more supported – but for those that don’t have support – the support group is a great place to feel understood and believed, as well as to learn as we educate each other. Many have been marginalized for so long from supposed “professionals” that they are quite beaten down and low.  Come up along side them and listen – supporting them in any way you are able.  Those actions will do far more than you could ever know.
8.  Feel free to copy these things to keep them in your purse or car.  That way you have some information at your fingertips.  Also, https://www.lymedisease.org/lyme-basics/resources/books-articles-videos-links/ here are some great resources to check out.
9.  Never give up hope.  
10.  Next Madison Lyme Support Group meeting:  May 14 from 2:30-4:30 and May 28 same time with Dr. David Baewer from Coppe Labs in Waukesha.  Bio forthcoming.

Category:

Activism, Babesia, Lyme, Meetings, Treatment, Uncategorized

Support Bill S. 1503

Senator Blumenthal’s bill, S. 1503, Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2015, sets up an Advisory Committee with patients and patient advocates as well as doctors and scientists. It emphasizes that the membership must represent the broad spectrum of viewpoints held within the scientific community.

There is currently NO official representatives to the government’s health agency and NO established mechanism to give input.

Lyme advocates have been trying to pass Lyme legislation since 1998 and now the Senate has less than a month to achieve the nearly impossible. Please add your voice.

https://www.lymedisease.org/get-involved/take-action/support-legislation/

Category:

Activism, Uncategorized

Release of Frankinbugs One Step Closer

http://articles.mercola.com/sites/articles/archive/2016/04/05/gmo-mosquitoes.aspx?utm_source=dnl&utm_medium=email&utm_content=art2&utm_campaign=20160405Z1&et_cid=DM102173&et_rid=1430114341

Despite local opposition in Florida, the FDA has agreed with an environmental assessment submitted by Oxitec3 and stated that GE mosquitoes will not have a significant impact on the environment, bringing Frankinbugs one step closer to being released in Florida.

The mosquitoes have been genetically engineered with protein fragments from the herpes virus, E. coli bacteria, coral and cabbage into the insects, and a “genetic kill switch,” which results in their offspring inheriting the lethal gene.

Pause.

GMO mosquitoes, nature’s dirty needle, have been laced with the herpes virus and E. coli.  

Doesn’t anyone remember Plum Island?

Right now there is a worldwide epidemic of MSIDS (multi systemic infectious disease syndrome or Lyme with friends) that has spread to every state and country except the Antarctica, and give it enough time and it will be found there too.  There have always been ticks – albeit in pocketed areas.   What is different today is we have genetically modified ticks that have been engineered to spread more virulent forms of borrelia and various co-infections that are not natural.  http://www.thedogpress.com/editorials/Plum-island-LymeDisease_Andrews1.asp.

Another interesting fact is that the reason to use these GMO mosquitoes is to fight against mosquito-related tropical diseases like chikungunya, dengue, and Zika. The truth is these diseases pose little risk in Florida.  There hasn’t been a confirmed case of dengue fever since 2010, and the limited cases of Zika and chikungunya were contracted in South America or the Caribbean.

At the town-hall meeting, Florida officials showed the results of a professional face-to-face survey conducted in 2013 to gauge the public’s opinion of GE mosquitoes. The survey showed the general public was opposed to the idea, but the officials state that residents are more informed now than they were then.

Then Chris Creese, Ph.D., Oxitec communications manager, added the point that you don’t need to vote when the government decides to build roads (likening this to releasing GE mosquitoes into the wild), which was met by “boos” from the residents.

Ultimately, if the GE mosquitoes become approved, they could be sought by governments worldwide, making them a major profit center. The Gates Foundation has already spent at least $20 million to fund their development, and the World Health Organization is on board too.  Also, Oxitec, in partnership with the Florida Keys Mosquito Control District, plans to release the GE mosquitoes, which go by the name of OX513A, in Key Haven, Florida, an island of the Florida Keys located about 1 mile east of Key West.

In the future, keep your ears open to disease outbreaks by and around Key West.

For more information on GMO bugs read:  https://madisonarealymesupportgroup.wordpress.com/2015/12/28/frankinbugs/

 

 

Category:

Activism, Uncategorized