Bloody Lymey

A Blog About Living with Lyme Disease

Lyme Event – August 12, 2017 – Western Massachusetts

I received this email today from Kenneth Mercure of the Lyme Alliance in the Berkshires (if you are happening upon this from a search engine, we are in Western MA):

 

Inside the Lyme Epidemic: Past, Present and Future with Pamela Weintraub

Saturday, August 12th, 2017 from 1:30 to 4:30 PM

Berkshire Athenaeum, Auditorium, 1 Wendell Avenue, Pittsfield, MA 01201

 

Lyme disease is at epidemic levels in Berkshire County! What should be an easily treated and manageable infection is being left to become a serious and evening life-threatening public health crisis. Lyme disease is under-reported, often misdiagnosed as something else and frequently suggested to be “all in your head”. There is a great disparity between the reality and seriousness of tick-borne infections and what is being touted as the ultimate truth about Lyme and its related diseases.

However, there is work being done to help bridge this gap. The Lyme Alliance of the Berkshires, a Pittsfield based organization started in 2011, tirelessly works to help educate the public and to help provide support for individuals who are currently suffering with tick-borne disease. As part of this work we routinely invite speakers and host educational events to help make the public more aware of this issue.

Continuing on this path of education and awareness the Lyme Alliance is hosting “Inside the Lyme Epidemic: Past, Present and Future” with Pamela Weintraub, author of the book Cure Unknown.

Nearly a decade after her beloved book was originally published, author Pamela Weintraub will tell her story and discuss what has changed in the world of Lyme since 2008 and what still needs to be done to help end the Lyme epidemic. Pamela will speak and then will interact with attendees and answer questions. We will have a door prize raffle as part of this event and refreshments will be available.

The event will be taking place in the Berkshire Athenaeum auditorium on 1 Wendell Avenue in Pittsfield, MA on Saturday, August 12th, 2017 from 1:30 to 4:30 PM.
 
Contact Person: Kenneth Mercure
Contact: berkshirelyme@yahoo.com

Website: http://www.berkshirelyme.blogspot.com

Facebook Event Page: https://www.facebook.com/events/1865028457078390
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Lyme Alliance of the Berkshires May 2017 Email

 

For those of us in Western Massachusetts/Berkshire County area , I’m relaying my email from the Lyme Alliance of the Berkshires:

The Lyme Alliance of the Berkshires is back! We hope the beginning to your year has been good so far. We have an amazing year planned!
 
*Note*: Some emails, given the amount we have in our address book, may have accidentally been sent an email. If you do not want to be on this email list or don’t remember signing up, send us a quick email saying “Remove from list.”. If you would like to remain, do nothing.
 

2017 sees the Lyme Alliance launching “Stemming the Tide” our tick-borne disease speaker series, with our

second meeting being on Saturday May 13th, 2017 at the Berkshire Athenaeum at 1 Wendell Ave in Pittsfield, MA starting at 1:30 PM.
Meetings take place in the ground floor auditorium.
Our meeting this month is “The Informed Patient: Navigating Healthcare with Lyme Disease”
 
A workshop based around creating an atmosphere of patient empowerment and self-confidence that will help those suffering from tick-borne disease navigate through the difficulties and chaos of the healthcare system and meant as a mechanism to provide a template to follow for those at risk.
 
Being an informed patient is a vital aspect to getting well when you are battling tick-borne disease. A patient must feel empowered and be knowledgeable about their illness for proper communication to take place between them and their medical practitioner. This communication facilitates an honest and open relationship and can even work to change an uneducated medical professional’s stance on Lyme disease. All patients regardless of illness should be able to feel confident and empowered when seeking and receiving medical care.
 
In April, we launched our first ever printed newsletter and the first Lyme-related newsletter in Berkshire County.
 
We have also been invited to do a segment on a local public access show that is shown throughout Berkshire County and will be speaking about inclusiveness in healthcare advocacy on the program New England Pride TV, that has an audience of 1,000,000 an episode, in June of 2017.
 
We hope to see numerous stories being published through the local media this year and will continue to fight for coverage of this heavily underreported issue and have made it a goal of 2017 to create a connected relationship between the Lyme Alliance of the Berkshires and local governments.
 
Last but certainly not least, we are launching a South County Lyme disease awareness meeting in Great Barrington. The meetings will be facilitated by local volunteer Barbara Wells. More details will be listed below.
 
Lyme Alliance of the Berkshires, North County:

All North County meetings will include a door prize raffle
as part of the meeting. Attendees will receive a ticket and
a drawing will be done at the end of the meeting.
 
The Informed Patient: Navigating
the Healthcare System with Lyme Disease
with Kenneth Mercure
 
Saturday, May 13th, 2017
Starting at 1:30 PM
 
Chronic Stress: Its Impact on Chronic
Illness and How to Cope
with Heather Juby
 
Saturday, June 10th, 2017
Starting a 1:30 PM
 
The Language of Healing
with Noelle Janka
 
Saturday, July 8th, 2017
Starting a 1:30 PM
 
BIG ANNOUNCEMENT!!!!
 
Inside the Lyme Epidemic: Past, Present and Future 
with Pamela Weintraub,
author of well-known Lyme book “Cure Unknown”
 
Saturday August 12th, 2017
Starting at 1:30 PM
 
All meetings take place at:
 
Berkshire Athenaeum
Ground Floor Auditorium
1 Wendell Avenue
Pittsfield, MA 01201
 
South County Lyme Disease Awareness Meeting (S.C.L.A.M.)
Facilitated by Barbara Wells
 
Saturday, May 20th, 2017
12:30 to 2:30 PM
 
Lyme Disease Prevention Workshop @ S.C.L.A.M.
with Kenneth Mercure, facilitated by Barbara Wells
 
Saturday, July 22nd, 2017
12:30 to 2:30 PM
 
Mason Library’s fiscal year ends in June, so this date is subject to change.
July 22nd is currently set aside for us on their books, but is not scheduled yet.
 
All meetings take place at:
 
Mason Library
231 Main Street
Great Barrington, MA 01230
 
In the community room.

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The Lyme Alliance of the Berkshires is a patient support and community education not-for-profit organization that is dedicated to spreading awareness about tick-borne diseases in Berkshire County and the surrounding area and to providing services to help patients in navigating through the healthcare system, as well in learning skills to help cope with the difficulties of living with tick-borne disease.

The Lyme Alliance of the Berkshires is based around a philosophy of
intersectional advocacy, striving to be inclusive of all communities and their unique needs.

 

Visit us at our website for access to 

an extensive archive of information.

 

Feel free to forward this email newsletter to anyone you know

who might benefit from our programming and services.

For those of you seeking to find herbs for the Buhner protocol, see:

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Berkshire Lyme Events

An email I received today that may be good for people in Western, Massachusetts or abutting counties in NY or VT:

The Lyme Alliance of the Berkshires will be screening the Lyme documentary Under Our Skin 2: Emergence at the Devonshire Estates Senior Living Facility at 329 Pittsfield Road in Lenox, MA at 3 PM tomorrow (May 18, 2016). The film is 60 minutes and will be followed by a Q & A. It is open to the public. If you know of anyone interested please share this event info!
We will also be holding our next awareness meeting on Thursday, May 26th at the Berkshire Athenaeum in Pittsfield, MA at 1 Wendell Avenue. Meeting starts at 6 PM in the ground floor auditorium. The entire meeting will be dedicated to answering questions.
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Set This Tick Myth on Fire

On Facebook there is an image circulating:

 

tick eggs

The caption implores readers to set this on fire – it’s a tick nest!  It seems very credible. I mean, why wouldn’t these be tick eggs?!

Well, according to Snopes it is unproven:

http://www.snopes.com/critters/lurkers/tickeggs.asp

If one goes to google images and searches for "tick eggs," the image consistently 
looks akin to this: 

tick eggs 2
Notice it's much smaller and redder? 

Just so you're aware of this and not spreading more rumors.  

Take care and remember to take precautions!  If you've never had Lyme Disease, 
remember that you DON'T want it!  And if you have, then kindly remind your 
family that they don't want it! 


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Lyme Alliance of the Berkshires to Screen Under Our Skin I&II

I received this announcement via email today and it looks like a good one:

“The Lyme Alliance of the Berkshires will be screening the award-winning Lyme disease documentary Under Skin on Tuesday February 16th, 2016 at 6 pm. We will be screening its sequel Under Our Skin 2: Emergence on Thursday February 25th, 2016 at 6 pm. Both dates will take place in the Pittsfield Library auditorium (from main entrance walk to elevator, choose ground floor) located at 1 Wendell Ave in Pittsfield, MA 01201. Each screening will be followed by a Q & A session. Attendees are welcome to arrive as early as 5:45 pm. Refreshments will be provided.”

lymefilm

If you haven’t seen the movie yet, here’s the link to the film’s website for info:

http://www.underourskin.com/film/

Best wishes, my friends.

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My Lyme Data: Helping Find a Cure

Did you know that Lymedisease.org is beginning a database for us to enter information about our experiences with Lyme Disease?

Their FAQ Site:  https://www.lymedisease.org/how-will-mylymedata-be-used/

Perhaps the most salient points in the FAQ page read as :

“Your data, without your name or other identifiers, will be combined with the data of other patients and analyzed to help begin to answer important questions about the course of illness and factors that affect whether patients remain ill or become well.

“The LymeDisease.org study team will analyze this data on its own and in partnership with researchers and clinicians who are interested in patient-centered research. Independent researchers working on patient-centered research projects approved by LymeDisease.org. may also analyze de-identified patient data.”

I entered mine.  The questions are mainly regarding symptoms, what the course of being diagnosed looked like/how long it took, what we were misdiagnosed with, how much Lyme is interfering with life today post treatment, how effective treatment was, current treatment, etc.

People prefer not to participate in surveys such as this for a multitude of reasons and I respect those.  I’m not saying people should or should not. I simply wanted to let people know that this is being done and maybe our experience could benefit others.

If you choose to participate, you may find the survey through the FAQ link above.  It’s good to read up on it before deciding.  Also, it appears that they will keep in touch with us and track us for some time after.

Take care, friends.

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Facebook/The Lyme Disease Challenge – March 2015

I happened upon a “take a bite out of Lyme” challenge in the works for March 2015.  Similar to the Ice Bucket Challenge, one is “challenged” to either bite a lime or pay a fine.  Similar to the Ice Bucket Challenge, too, it is geared toward raising awareness.  They take it a step further, however, tasking us with including one or two brief facts about Lyme and co-infections.  Nice, huh?

Here is what the Facebook page says:

Based upon poll results/administrator input, the “Take a Bite Out of Lyme Disease” Challenge will kick off on March 1, 2015 and will continue until it naturally ends.

Participants will be encouraged to accept the Challenge and/or donate to the designated recipient organization to be announced soon (which will act as a repository to direct funds designated recipients). To accept the challenge, participants should:

(1) Post either a short video or still photo of the participant biting a lime; (2) Include one or two brief facts about Lyme Disease and co-infections; and (3) Challenge a total of 3 other people to accept the Challenge.

While our primary goal is to spread awareness, through our combined efforts, we recognize that we may also have a unique opportunity to raise funds. To the extent that we raise funds, we hope to support a variety of Lyme disease causes, including grants to: international/national 501c3 non-profit groups; promising researchers as identified by the group; and financial assistance programs for Lyme patients.

We are working hard to put together well-branded, professional graphics and theming to be used across a variety of social media including Instagram, Twitter, Pinterest as well as Facebook! Please be sure to like, follow, share, pin and retweet!

Facebook Planning Group (nearly 3,000 and growing; for those who want to participate in the planning discussion):https://www.facebook.com/groups/939046886111392/

Instagram: http://instagram.com/lymediseasechallenge/

Twitter: https://twitter.com/LymeChallenge

Pinterest: https://www.pinterest.com/LymeChallenge/

Please be sure to use ‪#‎LymeDiseaseChallenge‬ ‪#‎Lyme‬ ‪#‎LymeDisease‬and other designated hashtags for posts as we move forward.

Read all about it here:  https://www.facebook.com/LymeDiseaseChallenge

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Lyme Disease Talk – New Lebanon, NY Tues. June 24, 2014

Dear Friends,

I want to invite you to a talk on Lyme Disease Treatment and Prevention with Jennifer Baer Enos, NP and Carolyn Sanford DMV.

7:00 pm
Tuesday, June 24th
New Lebanon Library
550 State Route 20
New Lebanon, NY 12125
Phone: 518-794-8844
Email: leb@taconic.net

Integrative health care professional Jennifer Baer Enos and veterinarian Carolyn Sanford will speak on Lyme Disease Treatment and Prevention. New York State is a hot bed of tick-borne disease, and Columbia County is among the highest areas in the nation with the problem. The speakers will discuss new developments in Lyme and other tick-borne diseases, and also be open to general questions from the audience.

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Boston – Rally for Lyme Awareness – May 10, 2013

Rally for Lyme Awareness
an educational event to help spread
awareness about Lyme, America’s
fastest growing infectious disease.
Bring your family, friends
and neighbors, united together
to help educate the community!!
Friday, May 10th, 2013
11am to 3pm
Brewer Fountain @ Boston Common
Tremont Street
Boston, Massachusetts
Brewer Fountain is located at the corner of Park
and Tremont Streets by the Parker Street Station.
For more information:
To learn how you can help
or for any questions, email:
This event is being held in conjunction with the
Worldwide Lyme Disease Awareness campaign and
International Lyme Disease Month.
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Lyme and the Mind Video ……..

Another amazing video.  Thanks, Jarryd!

 

 

While it seems like the prognosis is simplified in this video, I think it is a great illustration of the many possible ways it affects us all.

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