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.

Chronically Aware Newsfeed:
 

 
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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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ACTION!!! From the Massachusetts Lyme Legislative Task Force, July 12, 2016

Email from Lyme Alliance of the Berkshires:

From the Massachusetts Lyme Legislative Task Force, July 12, 2016:

When the Massachusetts House and Senate sent a Lyme disease insurance mandate to the governor as a budget amendment, it was intended to ensure insurance coverage for Lyme disease treatment beyond 30 days, when prescribed by a licensed physician.

But Governor Baker rewrote that amendment, severely limiting insurance coverage to only those treatments prescribed by infectious disease specialists, rheumatologists, and neurologists. These specialists tend to adhere to the rigid, overly restrictive treatment guidelines established by the infectious Diseases Society of America.  The IDSA guidelines are one of the reasons this mandate was needed in the first place.

Baker’s plan would deny coverage for licensed physicians in family practice, pediatrics, internal medicine and other practice areas, who tend to oversee Lyme disease treatment in the community.  It also would trigger referrals to more expensive specialists and further delay treatment.

In a nutshell, Baker’s recommendations would reinforce the original problem of restricted insurance coverage, not eliminate it.

Fortunately, Governor Baker’s recommendations are NOT binding!  Our state legislators are not done fighting for us. However, they will need the following help from each and every one of us:

The single most important thing you can do right away is to contact your own state legislators and urge them to do the following:

1) Please reject the governor’s damaging recommendations for mandated treatment coverage in the FY’17 Budget!

And:

2) Please restore the language released by the Conference Committee and previously adopted by both the House and the Senate! This is the best language for mandated treatment coverage for Lyme disease.

Contacting your legislators is easy to do with the Voter Voice system. Follow the link it only takes a minute! This bill and the Governor’s changes don’t just effect chronic Lyme patients, it effects all patients, those with acute Lyme and those who will get it in the future. The Governor’s move here also could set a dangerous precedent of government setting limits on what types of doctors could be seen for certain ailments, effectively eliminating patient choice!
We also encourage you to leave a comment on this article, letting your voice be heard about your what Governor Baker has done by altering a open-minded bill into an attack on Lyme patients. Share with everyone you know!
http://m.telegram.com/news/20160712/mass-governor-narrows-mandate-on-lyme-disease-treatment
Thank you for your time,
Lyme Alliance of the Berkshires
http://www.berkshirelyme.blogspot.com
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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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Lyme Disease Panel in Upstate New York

How to Protect Oneself from Contracting Tick-Borne Diseases

Legislator Donna Bolner (R, C, I – LaGrange) announces a free
informational Lyme disease seminar to all Dutchess County residents.
The event will be held on Tuesday, July 17th from 10 AM to noon at the
Town of Union Vale Town Hall located at 249 Duncan Road, LaGrangeville,
New York.

The seminar will provide a forum for attendees to listen and learn from
a panel of local experts on Lyme disease. Topics will include
information on how to avoid and protect against tick bites, education on
the signs and symptoms of tick-borne diseases followed by question and
answer session. Joining Legislator Bolner will be:

Representatives from the New York State Senate and Assembly,
The Dutchess County Legislature’s commissioned Tick Task Force:
Cary Institute of Ecosystem Studies, Dutchess County Department of Health,
and Hudson Valley Lyme Disease Association

“As Chairwoman of the Legislature’s Tick Task Force, I am all too aware
of the prevalence of Lyme disease and other tick-borne diseases here in
Dutchess County. The best way to limit and prevent Lyme disease is
continued education and research to reduce the incidences of the
disease. I hope residents will take advantage of the opportunity to
learn from professionals at the forum on how to protect oneself from
tick bites,” stated Bolner.

For further information and directions call.
For Further Information Contact:
Catherine Durland, (845) 486-2103
cdurland@dutchessny.gov

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Lyme Legislation – In The News Today ……..

This looks like a good start and long overdue. Your thoughts?

Here’s the link to the original article by Michelle R. Smith:
http://www.theday.com/article/20120713/NWS12/307139905/-1/nws

Conn., R.I. lawmakers seek national Lyme disease strategy
By MICHELLE R. SMITH Associated Press Writer

Publication: The Day

Published 07/13/2012 12:00 AMUpdated 07/13/2012 01:10 AM
COMMENTS (0)

Providence – A group of lawmakers is pushing for a national strategy to combat Lyme disease aimed at speeding advances in diagnosis, treatment and prevention of the sometimes serious illness that infects tens of thousands of people every year.

“The tick problem is growing. The Lyme disease problem is growing,” said Sen. Jack Reed, D-R.I., a cosponsor of the bill in the U.S. Senate. “This requires resources.”

The legislation provides for the establishment of an advisory committee made up of researchers, patient advocates and agencies, as well as the coordination of support for developing better diagnostic tests, surveillance, research and other efforts.

“The key with the bill is to get everyone in the room, get all of the best available science and then aggressively attack this hideous disease that has ruined so many lives,” said Rep. Chris Smith, R-N.J., the sponsor in the House who has pushed similar legislation in the past.

Reed and Sen. Richard Blumenthal, D-Conn., who introduced the Senate bill, said they hope to pass a bill this year.

“It is essentially designed to create awareness and understanding in public health agencies about the urgent and immediate need to act more effectively against a disease that truly has reached epidemic proportions,” Blumenthal said.

Lyme disease is the sixth most common reportable disease in the United States, and the second highest (behind chlamydia) in the Northeast, said Dr. Ben Beard, director of vector-borne diseases at the federal Centers for Disease Control and Prevention.

In recent years, Lyme disease cases have increased around the country. Some of that may reflect improved testing and reporting, Beard said. But he said researchers also believe there has been a real growth in cases, possibly because of more deer and the spread of suburbia into previously uninhabited places.

This year, 8,400 cases have already been reported, the CDC said. Lyme experts believe the number of actual cases is likely larger, in part because tests for the disease are unreliable.

Lyme disease is named after Lyme, Conn., where the illness was first discovered in 1975. It’s transmitted through the bites of infected deer ticks, which are about the size of a poppy seed. Those infected often develop a fever, headache and fatigue, and sometimes a tell-tale rash that looks like a bull’s eye centered on the tick bite. Most people recover with antibiotics, although some symptoms can persist. If left untreated, the infection can cause arthritis or spread to the heart and nervous system.

Treatment can be tricky, especially in cases that aren’t caught early.

Reed said the bill would ultimately result in more federal money aimed at Lyme disease, welcomed news to Thomas Mather, a professor and director of the University of Rhode Island’s Center for Vector-Borne Disease, which runs the TickEncounter Resource Center.

A grant from the U.S. Department of Agriculture in 2006 helped start his program, which works to reduce tick-borne illnesses including Lyme disease. Mather said it’s difficult to get the money he needs to keep the work going, and he hopes enacting a federal strategy will make that easier.

“We’re really looking for ways to sustain these activities,” he said. “Mostly what’s needed are more resources.”

The Infectious Diseases Society of America, an influential doctor’s group that sets guidelines for treatment of Lyme disease, has opposed similar legislation in the past. In 2009, it raised concerns about whether such a panel might be slanted and not adequately represent the views of the scientific community.

It has not yet taken a position on the pending legislation.

If the legislation passes, Lyme disease would be the latest in a string of diseases to be targeted with a national strategy, the most recent being Alzheimer’s disease.

Smith has scheduled a Congressional subcommittee hearing on Tuesday about challenges in diagnosing and managing Lyme disease.

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Berkshire Lyme Support Group – Lyme Alliance of the Berkshires

Here’s my newsletter du jour:

Our next support group meeting is July 19th, 2012 featuring special guest speaker Dr. Ronald Stram of the Stram Center for Integrative Medicine, starting at 5 pm at the Adams Free Library, 92 Park Street, Adams, MA.

The support/discussion group will begin at 5 pm and the presentation by Dr. Stram will start around 5:45 pm with a Q & A to follow.

Hope to see you there and spread the word to anyone you know that might be interested!!

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Petition the U.S. Senate (The right to be diagnosed and treated for Lyme and related diseases)

About the petition:

“Every human being has their right to heal from an illness. The right to be given an accurate diagnosis, and to have proper and sustainable treatment and support.

“What if I told you that there is a countless number of people right here in America, who have been denied their right to a proper diagnosis of Lyme and other related infections related to tick bites, and then once properly diagnosed, they struggle to get treatment, to get insurance companies to pay for that treatment, and so on.

“The hardest of all, is these people struggle to find support as they heal from these infections. Most doctors, their families, friends and associates do not believe these people – they doubt them because there is a LACK of knowledge and understanding.

“Most people think that Lyme disease is easily diagnosed & cured… One is told that it is in your head… Why- because there is no reserach and education coming out of the medical community and there is no awareness or advocacy for Lyme Disease and it’s associated diseases in the Public sector.

“Lyme patients want action NOW- we want to take back our right to heal and move on with our lives in peace without fighting a brutal bureaucratic political health care system in America.

“Please sign this petition if you want to take back your right to heal (or if you have a family member, friend or associate that you know who has faced this challenge)!” ~ Bernadette Durham

Since the link function seems to always fail me: https://www.change.org/petitions/the-u-s-senate-the-right-to-be-diagnosed-and-treated-for-lyme-and-related-diseases

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Class Action Lawsuit Part II – Lyme Disease

I posted a blog about a class action lawsuit and declined to give my opinion on how I feel about lawsuits and stated I tend to be on the fence about them. Here’s the original:

(If it fails, copy and paste: https://bloodylymey.wordpress.com/2012/06/03/class-action-lawsuit-lyme-disease-chronic-lyme-disease/)

I received an in depth comment on that entry that I feel compelled to share because …. it’s so compelling! I hope this is alright with her. Since it was not in a private message but posted publicly, I’m posting this with confidence that I am doing the right thing and so that her compelling argument will reach a broader audience (hopefully). Because I don’t want to chance that no one will read it or will miss it, I must share it with you.

Here it is:

“Hi Becky,

I understand your opinion that you are on the fence about the idea of any type of lawsuit. I myself have been on the fence for several years. I have also been completely exhausted from having ‘lyme soup’ (chronic lyme w/ neurological dysfunction, and probably all of the other tick borne illnesses generally associated w/ ticks) and one day, I was talking to my dad (who thinks that all of this is whooey and that I should just walk it off) and I realized that while everyone is busy talking about the politics of lyme (and in my opinion covering their own butts), the patients have been lost in the shuffle.

2012 is already a horrendous tick season and it is only going to get worse as the summer progresses out here on the east end of long island in NY. We are in a location where Lyme is endemic and even have doctors in the area that worked on the original classification of Lyme diesease. We were fortunate enough until a few years ago to have Dr. J Burrascano right here in our back yard. Heck, Long Island even has a Borrelia species specific to our area.

There have been two major reports out in the past year

-1) one stating that the lyme spirochete does go into a cyst form and hides in the lymphatic system of humans and

2) there was a study published in January 2012 that states unequivically that “These results demonstrate that B. burgdorferi can withstand antibiotic treatment, administered post-dissemination, in a primate host. Though B. burgdorferi is not known to possess resistance mechanisms and is susceptible to the standard antibiotics (doxycycline, ceftriaxone) in vitro, it appears to become tolerant post-dissemination in the primate host. ”

I have spent almost 10 years searching for answers to my health problems and have been diagnosed AND TREATED for Lupus, Multiple Sclerosis, Fibromyalgia, Chronic Fatigue and yes, of course, I was told to seek psychological help. Last year, I was told by my neurologist (after I had begun EFFECTIVE treatment for Lyme and Babesia) that there was no way that it was working because chronic lyme DOES NOT EXIST. My local primary care physician told me that a week of doxy should take care of the problem every one of the 6 times that I tested positive for lyme (the first time being in 1982 as a child). I have spent countless hours in waiting rooms seeing every kind of doctor under the sun. I have spent tens of thousands of dollars over the past ten years in co-pays, prescriptions, lost work time etc and I finally spent another $6,500 last year to go out of the country to buy the meds that I need to even begin to get well. I had to sell my business because I physically could not work any more. I have been unable to work for nearly 3 years so our household income has declined drastically . And none of this even touches on the idea of pain and suffering.

I did not change the laws about medical research that now allows researchers to patent their information (even if they use my tax dollars to fund their research) nor did I ignore the fact that Lyme Disease has been in existence and treated in Europe for more than 120 years as of 1992.

I did not claim that ELSA test was accurate.

I did not patent two of the markers that are used on the Western Blot Test (you know the one that is supposed to be definitive) used to identify the lyme antibodies and cause thousands upon thousands of people to told they were not positive for the lyme antibodies when they most likely were.

I did not make money off of the patenting of those two markers for the LymeRX ‘vaccine’. I am not the one who still insists that the Western Blot is the way to confirm Lyme when it has been shown to be incorrect 72% of the time. I am not the one who writes the guidelines (but I am one of the ones who has had to beg to get them to even be reviewed) for the insurance companies.

I am also not a physician who lives and works in an endemic area who has little or no knowledge or training regarding tick borne illnesses. I am also not one of the doctors coming out of the intern/residency program of Southampton Hospital this year who has been trained that Lyme disease is only an acute infection but the ‘locals’ constantly complain about it so, and I quote ‘humor them’.

I did none of these things. I was bitten by an infected tick. I have no idea when my infection truly started because as I mentioned I had my first positive test beck in 1982 and have been treated 6 times in the past 15 years.

I have almost lost everything and I am one of the lucky ones and all of this could have been prevented by a couple hundred dollars of medications at the start. I will never get back back all that I have lost physically, emotionally or financially. I am not even trying to. However, in working towards this class action lawsuit, I hope to hold the people involved somewhat accountable but more importantly, someone has got to make doctors, insurance companies and our government responsible for making sure that the physicians that are licensed by the state are fully qualified and have the ability to treat Lyme and the other generally co-morbid infections properly. All the Best, Joy Ganss-Brady, East End Lyme Disease Awareness Council http://www.lymeliveshere.org

Special thanks to Joy for taking the time to educate me and for helping me see this in a new light – and for writing with passion for the cause and respect for my being on the fence. Best wishes to you.

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