Bloody Lymey

A Blog About Living with Lyme Disease

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.”


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

Best wishes, my friends.

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More Lyme Legislature! Massachusetts House Ways and Means Committee

Dear Friends,

Thanks to your help, the Massachusetts Bill H.4259, An Act Relative to Lyme Disease Treatment Coverage, that would require insurance companies to pay for long-term antibiotic treatment of Lyme disease was referred earlier this week to the MA House Ways and Means Committee! We have had good information that this bill will be considered by the Committee this Thursday, July 17, and that it can still get through and be voted on before this session ends, if we keep the interest high.
Do you think that the decision for treatment should NOT be up to your insurance company, and instead be left to you and your physician?



There are very few  weekdays left in this legislative session. We need to push this bill forward! Please CALL, WRITE, E-MAIL or VISIT your representative. Many MA Lyme advocates are also contacting the members the House Ways and Means Committee.
If you are from Southern Berkshire County, Representative Smitty Pignatelli from Lenox, represents you, has co-sponsored H.4259, and sits on the MA House Ways and Means Committee.
Find your MA legislators’ contact info at:
Please reach out to family, friends, and neighbors and ask that they also CALL, WRITE, E-MAIL or VISIT! This legislation, if passed, would let people focus on the fight for their lives and not the fight with their insurance companies.
You are making a difference in the future of Lyme disease treatment. 
Thank you!


1) Where in Massachusetts you are from. They most want to hear from people in their district.
2) I vote, and I am in favor of the Lyme Disease Patient Protection Bill, H.4259,

with the edits of the Mass Lyme Disease Legislative Task Force. Please vote in favor of this bill.

3) Why H.4259 is important to you (e.g., I can get the treatment that I need so I can get back to work)

4) Remind your rep that the financial impact study of this bill predicted LITTLE TO NO INCREASE in insurance premiums for the general public.

5) This specific legislation was recommended by the Governor’s Special Commission to Conduct an Investigation and Study of the Incidence and Impacts of Lyme Disease in 2013.

Sample E-mail 
(Please add your own personal note about how Lyme disease has effected you and your loved ones to the beginning of this message)
(Just Copy, Paste, and Insert the Rep’s name & your name)
Subject: Support H.4259, An Act Relative to Lyme Disease Treatment Coverage & the MA Lyme Legislative Task Force’s Edits
Dear <Insert Rep on House Ways and Means>,
As one of the thousands of Massachusetts citizens affected by the burgeoning epidemic of Lyme disease, I support the intent of H.4259, An Act Relative to Lyme Disease Treatment Coverage which is currently before your committee. I respectfully request your assistance with H. 4259, as the current wording contains various loopholes that insurance companies could use to deny care to people with Lyme disease.
As the intent of the bill is to protect patients’ access to care, it is my hope that you may be able to assist us with implementing the Massachusetts Lyme Legislative Task Force’s essential edits to H. 4259, which serve to tighten up the legal wording.  Without these essential edits, the bill may harm people like me, the very people it is supposed to protect; I need your help. 
H. 4259 builds on the Massachusetts Physician Protection Act.  It also fulfills the Massachusetts Special Commission to Conduct an Investigation and Study of the Incidence and Impact of Lyme Disease recommendation for “mandatory Lyme disease insurance coverage to be enacted in Massachusetts.” Importantly, the recent Center for Health and Information Analysis (CHIA) report found that there would be little to no ($0.0) impact on the cost of insurance.
Please implement the suggested edits from the Massachusetts Lyme Legislative Task Force and vote favorably on H.4259.  Thank you for your time and consideration. 
<insert your NAME and ADDRESS here>

Sample Facebook post or e-mail to family/friends:
I support H.4259 and the MA Lyme Legislative Task Force Edits. Do you? If
yes, then call 617-722-2990 and let Brian Dempsey, the House Chair of Ways
and Means know!
This note could be used when you share the following link to a recently published article, which talks about why this bill is so important. “Massachusetts face to face with Lyme disease patient protection bill:”
MA House Ways & Means Committee Members
If you are from Southern Berkshire County, Representative Smitty Pignatelli from Lenox, represents you, has co-sponsored H.4259, and sits on the MA House Ways and Means Committee.
Brian Dempsey, House Chair 617-722-2990
Stephen Kulik, House Vice Chair 617-722-2380
Matthew Beaton 617-722-2488
Michael Brady 617-722-2230
Linda Campbell 617-722-2305
Christine Canavan 617-722-2575
Nick Collins 617-722-2080
Viriato deMacedo 617-722-2100
Angelo D’Emilia 617-722-2488
Geoff Diehl 617-722-2810
Carolyn Dykema 617-722-2210
Lori Ehrlich 617-722-2014
Robert Fennell (co-sponsor) 617-722-2575
Gloria Fox 617-722-2810
Sean Garballey (co-sponsor) 617-722-2090
Robert Koczera 617-722-2582
Timothy Madden (co-sponsor) 617-722-2810
Paul McMurtry 617-722-2015
Kevin Murphy no # listed.
Rhonda Nyman 617-722-2210
Thomas Petrolati 617-722-2255
Smitty Pignatelli (co-sponsor) 617-722-2017
Angelo Scaccia 617-722-2060
Thomas Stanley (co-sponsor) 617-722-2230
Walter Timilty 617-722-2230
Cleon Turner 617-722-2090
David Vieira 617-722-2230
Donald Wong 617-722-2488
House Ways and Means Committee Members email list
It is better to send a separate individually addressed email to each Committee member, but if that is too hard for you the entire list is below:,Angelo.Scaccia@mahouse.govThomas.Petrolati@mahouse.govChristine.Canavan@ma,Gloria.Fox@mahouse.govRobert.Koczera@mahouse.govRobert.Fennell@mahouse.govWalter.Timilty@mahouse.govSmitty.Pignatelli@mahouse.govLinda.Campbell@mahouse.govLori.Ehrlich@mahouse.govMichael.Brady@mahouse.govTimothy.Madden@mahouse.govRhonda.Nyman@mahouse.govAngelo.D’
Yes, Smitty is a member of the House Ways and Means Committee. He is also a co-sponsor of this bill, and has been helpful with information and advice. He is one of the good guys on this bill! Yes, contact him, and be sure to THANK HIM.

We are asking right now that only constituents contact their reps on House Ways and Means. If Smitty is not your rep, please hold off on contacting right now. In a couple of days, we will have additional alerts, to make sure that no stone is unturned in getting support for this bill.



MA Lyme Legislative Task Force



Stephen Kulik, House Vice Chair 617-722-2380<>

Matthew Beaton 617-722-2488<>

Michael Brady 617-722-2230<>

Linda Campbell 617-722-2305<>

Christine Canavan 617-722-2575<>

Nick Collins 617-722-2080<>

Viriato deMacedo 617-722-2100<>

Angelo D’Emilia 617-722-2488

Geoff Diehl 617-722-2810<>

Carolyn Dykema 617-722-2210<>

Lori Ehrlich 617-722-2014<>

Robert Fennell (co-sponsor) 617-722-2575<>

Gloria Fox 617-722-2810<>

Sean Garballey (co-sponsor) 617-722-2090<>

Robert Koczera 617-722-2582<>

Timothy Madden (co-sponsor) 617-722-2810<>

Paul McMurtry 617-722-2015<>

Kevin Murphy no # listed.<>

Rhonda Nyman 617-722-2210<>

Thomas Petrolati 617-722-2255<>

Smitty Pignatelli (co-sponsor) 617-722-2017<>

Angelo Scaccia 617-722-2060<>

Thomas Stanley (co-sponsor) 617-722-2230<>

Walter Timilty 617-722-2230<>

Cleon Turner 617-722-2090<>

David Vieira 617-722-2230<>

Donald Wong 617-722-2488<>

House Ways and Means Committee Members email list

It is better to send a separate individually addressed email to each Committee member, but if that is too hard for you the entire list is below:<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>,<>, Angelo.D’<mailto:Angelo.D’>,<>,<>

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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

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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Massachusetts Bill H.989, A Patient Protection Bill Needs Your Help!


Massachusetts Bill H.989, A Patient Protection Bill Needs Your Help!

H.989, An Act Relative to Lyme Disease Treatment Coverage, a bill that will require insurance companies to cover physician-prescribed antibiotic treatment for Lyme disease, is currently in the Joint Committee on Financial Services. After the successful hearing in the fall, many representatives are now waiting for a report on how the law may impact the economy. We want them to push it forward regardless, because insurers who deny coverage for care are costing Massachusetts families and the Massachusetts economy. Don’t let some insurance companies push the costs onto Massachusetts residents, employers, and the economy.

Our representatives need to be reminded that H.989 is extremely important to us and that we are counting on them to support it.


Find your legislators’ contact info at


Where in Massachusetts you are from.

Why H.989 is important to you (e.g., I can get the treatment that I need so I can get back to work)

Remind your reps that Rhode Island passed a very similar bill in 2004 and the sky did not fall. People were able to receive their physician-prescribed care.

This specific legislation was recommended by the Governor’s Special Commission to Conduct an Investigation and Study of the Incidence and Impacts of Lyme Disease in October 2012.

If you want more talking points, and/or are visiting the representative’s office, then please find attached the packet for legislators.

Please note that it can also be found in the Files section of the MassachusettsLyme Yahoo! Group website at:

“I vote, and I am in favor of the Lyme Disease Patient Protection bill H.989. Are You?

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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

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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:

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

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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Another Reason Why We Should Use Human-Sized Hamster Exercise Balls for Jaunts in the Woods ….

I felt GREAT a couple of weeks ago and went for a jaunt in the woods with a friend.  The place has  2 ponds, a stream, woods, fields …….. any outdoorsy thing you could want except mountains.  But with all that water and marshiness I was eaten ALIVE by mosquitoes.  My arms were teaming with itchy pink welts.

Fast forward one week.  I felt weak.  Tired.  Joint pain – a different joint pain.   I also felt depressed about it and I cried — and this in itself was unusual.   The fatigue wasn’t worse than usual and the joint pain no more severe.

The next morning I had epic diarrhea — and it was undigested.  I had tons to do at work and had an intuitive feeling that the diarrhea was a one time thing.  My abdomen hurt when I walked.  Enough to cause me to bite my lip and try to lumber slowly and purposefully, like I didn’t want to rock the boat.  After 2 hours at work, I had to pee.  While attempting to do so, my abdomen (lower right) hurt SO bad I thought I was going to faint.  I saw swirling black dots and everything seemed to be slipping away.  When the clarity returned, I pulled up my pants and was preoccupied with the whole “what if” thing …… particularly what if I fainted with my pants pulled down at work?  Then came the fear.  No one likes the notion of their internal organs rebelling …. or maybe breaking?

I told my boss matter of factly I needed the ER.  He drove me.  Long story short?

1.  Urine sample – No UTI

2.  CAT Scan – No appendicitis & bladder is good

3.  Blood samples –  Everything good (Liver, Kidneys, Electrolytes, etc.)

Doctor asked if I had had a sore throat.  No.  He asked where I was in my menstrual cycle. I told him.

My discharge papers proclaimed me a victim of Mittleschmerz.  Say it aloud. It’s funnnnnnnnn.  And it’s supposedly real. Here’s an article:

Now. It doesn’t explain the diarrhea and it doesn’t explain what happened next.

Next morning?  EPIC diarrhea.  Liquids, solids, everything came shooting through at warp speed.  I developed other symptoms that came and went:

1.  Abdominal rash – raised, very clearly a rash

2. Nausea

3. Exhaustion – different than my usual.  This is more a sleepy feel, like I have been up all day and night and like it should be 4 AM.  Sleep relieves this for a short time but doesn’t sustain me long.  This is unlike my usual fatigue where it feels like sleep is just a respite from feeling tired and I wake up unrefreshed.

4.  Weakness

5.  Sweating (*I sort of stopped sweating for the past couple of years, so this is odd.  Also, I woke up sweating rather profusely*)

6.  Fever ?  (My baseline temp is like 96.5 F and has been since my thyroid diagnosis in 2007.  My temp was up to 99.6F.)

7.  Headache — and my nausea & diarrhea made the notion of taking Motrin or something to be off-putting, to say the least.

There were others, but these were the biggies for a few days.

Then – the headaches got more severe.  Then …. I was getting ready for bed one night and my throat was swollen kind of below my ears and a little forward and it looked like I had a double chin — that was swollen too, and tender to the touch. Then …. confusion.  I went to Cumberland Farms for a coffee.  I have been doing this for some years. It looked unfamiliar to me and for a few seconds I couldn’t figure out where the coffee was.  There were a few similar instances to this.   My knees hurt differently.  The joints.  They felt hot and like they could “pop” particularly when going down stairs.

In follow up with the doctor, she ran some labs.


Sjogren’s Syndrome.

Smooth muscle function.


Now this had gone on for more than a week and is still kind of meddling with me, though my stomach is far better.  I don’t have an aversion to food like some do when they’re nauseated, but I have the “picky eater” thing that those who are queasy often suffer from.

Somewhere in that flub, a friend on Facebook posted a local article about a mosquito testing positive for West Nile here in our humble  hamlet.  I couldn’t remember what the symptoms were, so I looked it up.  You guessed it.  I laughed.  I laughed so hard.  Wouldn’t it be funny if I was a victim of Lyme AND West Nile?

Just keep me the F**K inside.  Ha ha.

Did my doctor test me for it?  Nope. I will tell you WHY.  80% of people are asymptomatic when they have WNV.  The 20% that ARE have the symptoms I reported – usually cleared up in one week with perhaps lingering fatigue (they say even healthy people may be sick for several weeks).  Here’s more info from our favorrrrrrrrrrite government entity, the CDC:

1% will develop BAD WNV – aka:  West Nile Encephalitis.  This is the one that makes the news.  Less than 10% of this 1% die from it.  So that’s an astronomically low number.

I don’t KNOW if I have West Nile and from what I’ve heard from medical peeps and from reading is I probably won’t be tested unless I have an alarming fever and forget my name.  By the way, I did tell my doctor about my confusion episodes.  She stated that people with Sjogren’s sometimes have this.  I may push the issue Monday.  This “rare” stuff scares me.  Chronic Lyme is supposedly rare.  Again.  I’m not saying I “have” it.  Ruling it out might be nice, though.  But I think the government’s criteria and methods get in the way and so do insurance companies.  Why test for something that would resolve itself?  Like … the common cold.

And that bothers me not because I “need” to know – especially since it typically resolves itself – but because the government statistics are grossly inaccurate.  Mosquitoes found.  Low risk to humans.  No human infections.  Yayyyyyyy.

So that’s my 2-cents.  What cha say we all stay inside?  Ticks, mosquitoes, and ……. what else?  What can house flies do to us?  Tee hee. Of course, then being HOME and INSIDE would be unsafe. Maybe I’ll just live my life in one of these: