Bloody Lymey

A Blog About Living with Lyme Disease

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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Lyme Legislation – Massachusetts

Good Day, Friends!  I received this email from my friends at The Lyme Alliance of the Berkshires today and it is pretty important!  Be sure to take action!
A long in the works amendment to the 2017 fiscal year state budget that would mandate that insurance companies in MA cover treatment for Lyme disease for as long a licensed physician saw fit is almost official! The Lyme Alliance of the Berkshires supports this bill as it would allow patients access to care that is currently not widely available and would create an atmosphere that wasn’t overwhelmed by fear. With such a amendment local doctors would face far less opposition if they chose to treat patients with Lyme disease as they saw fit. The Lyme Alliance of the Berkshires testified at Beacon Hill last October in support of this bill.
At this time, the Governor’s signature is required to pass it into law. There has been opposition to this legislation by the Mass Medical Society– legislation which would require insurers to cover long-term antibiotic therapy for a patient with Lyme disease. Let’s ensure the Governor knows you Massachusetts residents are aware of the hardships faced by patients in Mass who develop Lyme and that you want him to sign this legislation into law. See the message from Mass Legislative Task Force below for actions to take.
_____________________________________________________________________________________
FOR DISTRIBUTION TO MASSACHUSETTS RESIDENTS:
Dear Friends,
It’s time to contact the Governor’s office and encourage him to sign this legislation into law!
At this point, it’s sheer numbers that matter, not lengthy explanations, and every one of you can help. If you or your family member was hurt by inadequate antibiotic treatment and/or by a lack of insurance coverage, you may want to include a brief statement about that. Please don’t dwell on the high cost of treatment. Instead, emphasize how important it is to keep people healthy and functioning, as well as free from painful suffering.
Call and/or email today! Ask your family, friends and neighbors in Massachusetts to do the same. The Massachusetts State House will reopen Tuesday morning, and Governor Baker could decide to sign or veto the Lyme amendment at any point. We need to impress him with overwhelming support from his constituents!
______________________________________________________________________________________________________________________________________________________________________________________________________
Three different ways you can take action, pick one and DO IT NOW:
1. Call the Governor’s office 617-725-4005
Tell him that you want him to sign the budget with the Lyme amendment intact
2. Use the form on the Governor Baker’s website to email this message to him http://www.mass.gov/governor/constituent-services/contact-governor-office/  (be sure to scroll down to the bottom to find the form):
3. Fax your message: 617-727-9725
__________________________________________________________________________________________________________________________________________________________________________________________________________
Background information
We want to provide you with some additional information which we hope will increase your comfort level and encourage you to do this right away:
1. Over this past weekend, we’ve been actively conferring with the ILADS board. After reviewing the legislation and connecting them with the attorney who shepherded the Rhode Island bill into law (and who now lives in Massachusetts), ILADS has agreed to write a letter, urging Baker to support the Lyme amendment. This will be delivered to the governor’s office by Tuesday morning.
It is especially important to have ILADS as a medical society endorse the amendment, given the opposition expressed by the Massachusetts Medical Society. http://www.lymediseaseassociation.org/news/1505-ma-lyme-leg-task-force-reply-to-mms-bill-opposition
2. Similarly, after conferring with the attorney and studying the language, the Lyme Disease Association (LDA) is on board, and will fax its letter of support to Governor Baker no later than Tuesday morning. As a major patient advocacy group, the endorsement of the LDA is significant.
3. We also will be providing a letter from the attorney referenced above, describing Rhode Island’s comparable legislation and its striking success over the past decade. There has been no negative impact in the Rhode Island economy in the decade since its passage, and not a single health insurer opposed it at the end of its sunset period.
4. We plan to hand-deliver a packet of information to Governor Baker’s office (in a “Lyme” green folder, of course), Bright and early on Tuesday morning. We had promised his legislative aide that we would provide this material as a follow up to our meeting there last Thursday.
5. Please note that the State House reporter was incorrect when he wrote that the Conference Committee dropped the prohibition against characterizing antibiotic treatment as experimental. That’s not what they did, and that hasn’t been our concern. In fact, they broadened the language to say that even experimental medications can be used off-label as antibiotics, as long as they are FDA approved. We were told that this was done in order to make the current language comparable to the language used for cancer treatment. This could cause confusion, which is why we preferred the simpler, straightforward language in the original bills and in the House amendment.
4. Other questions have pertained to the repetition of the same language in several sections, and to a few restrictions which pertain to a small number of health plans with unusual coverage, like rebates. Representative Linsky’s office asked us to hold off on endorsing the amendment until they could check into the reasons for that language, and to examine it for potential loopholes. They’ve since given us a green light.
5. We’ve been gladly addressing questions and concerns from various other stakeholders all weekend. That way, we will be less vulnerable to having our actions second-guessed later. This did happen after the physician protection bill was passed in 2010, when one disgruntled advocate called for its repeal.
Now we’re ready to hit the ground running as this holiday weekend comes to a close. Let’s act as a truly united front! Thanks for your patience, your thoughtful consideration and above all your support. Don’t forget: we need tons of phone calls and emails to Governor Baker right away!
Happy 4th.
The Massachusetts Lyme Legislative Task Force
Helen Brown – Whitman
Donna Castle – Ayer
Janice Dey – Westport
Susan Fairbank-Pitzer – Danvers
Sharon Hawkes, MLIS – Nahant
Jayme Kulesz – Groton
Robin LeMieux – Lowell
Sheila Statlender, Ph.D. – Framingham
Share with everyone you know! Anyone who has ever known someone with Lyme disease has a stake in this fight! Anyone who lives in a Lyme endemic area (all of MA) has the right to tell Governor Baker that he must support this amendment!
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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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Help! Federal Lyme Bill Stuck in Committee

Lyme Disease.Org Logo
Federal Lyme bill stuck in committee. 
Help us “unstick” it!
capitol dome

The federal Lyme bill – S. 1503 – sponsored by Senator Blumenthal, is stuck in the Senate Health, Education, Labor, and Pensions (HELP) Committee, with only a few days left to “unstick” it.

At this point, our best shot is to get the provisions of this bill put into a bigger health bill the Senate is working on, by adding our language as an amendment.

The key person for making that happen is the committee chair, Sen. Lamar Alexander, of Tennessee.
We’re asking you to phone your OWN senators, requesting them to ask Sen. Alexander to add our language as an amendment to this bill.

LymeDisease.org, publisher of The Lyme Times, is the Lyme community’s leading source of news, information, and health policy analysis. 
Federal Lyme bill stuck in committee. 
Help us “unstick” it!
capitol dome

The federal Lyme bill – S. 1503 – sponsored by Senator Blumenthal, is stuck in the Senate Health, Education, Labor, and Pensions (HELP) Committee, with only a few days left to “unstick” it.

At this point, our best shot is to get the provisions of this bill put into a bigger health bill the Senate is working on, by adding our language as an amendment.

The key person for making that happen is the committee chair, Sen. Lamar Alexander, of Tennessee.
We’re asking you to phone your OWN senators, requesting them to ask Sen. Alexander to add our language as an amendment to this bill.

LymeDisease.org, publisher of The Lyme Times, is the Lyme community’s leading source of news, information, and health policy analysis. 
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Lyme Awareness Meeting, Pittsfield, MA

I received this email from the Lyme Alliance of the Berkshires :
Lyme Awareness Meeting:
1:30 to 4:30 PM
Berkshire Athenaeum
Ground Floor Auditorium
1 Wendell Avenue
Pittsfield, MA 01201
Guest Speaker: Allie Cashel Author of “Suffering the Silence: Chronic Lyme Disease in an Age of Denial”
http://www.sufferingthesilence.com
A 2013 graduate of Bard College’s Written Arts Department, Allie Cashel is a first-time author. Her book began as her senior thesis project at Bard College and was developed into a full-length memoir which details her own experience, and also shares the stories of a number of other chronic Lyme patients from around the world, acting as a living portrait of the disease and its patients’ struggles for recognition and treatment. She is a passionate advocate for increased awareness and Lyme treatment reform. Meeting will begin with Allie speaking about her story, reading from her book and will be followed by open discussion.
(bio edited from http://alliecashel.com/bio/)
contact: berkshirelyme@yahoo.com

 

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Existing

I’ve been going through a medical thing now that doesn’t have to do with Lyme, that I know of, but the fatigue is equally debilitating and oh, so familiar.

(You can skip this part – just boring details about why I feel the way I do ) My thyroid has been off – and I have labs to support this.  My doctor referred me to an endocrinologist which they don’t seem to bother much with for hypothyroidism.    They did an MRI on my pituitary, too.   I’m 44 and I’ve started having premenopausal symptoms – hot flashes, night sweats, erratic monthlies…..

In the end of February I had my appendix out.  It seemed an ordinary but painful situation, exactly as it has been recounted to me through others before me.  Excruciating pain, lower right abdomen.  In I went.  Out it came.

I saw the surgeon for follow-up, expecting him to inspect my incision, smile, pat me on the head and wish me luck.  He sounded expectedly light, asking how I felt and whatnot.  He looked at the incision and nodded, saying it looked like it was healing nicely.  I nodded, too, tugging my shirt back down over my big belly.

He sat down and frowned.  “Let’s talk pathology now.”

That was a strange word.  Pathology.  I heard the c-word and tuned out.  My mouth opened and I was staring.  Cancer.  His lips were still moving and he was nodding emphatically.

“…They removed the cancer along with your appendix and there is no reason to think it had spread……”

I asked about the appendix being “perforated.”  That’s what the report said.  He smiled and shook his head.  “You’re not at risk,” he smiled reassuringly.  “No need to follow up with anything.”

But follow up I did.  My PCP referred me to an oncologist to be sure, adding “I’m very certain it’s all out, but I’d rather hear it from oncology.”  She said the type of tumor I had, a carcinoid, sometimes disrupt endocrine systems and she wondered  if I might start feeling better.  I read more about it.  “Carcinoid syndrome” is what it’s called.  Fatigue.  Bloating.  Erratic BM’s.  Flushing — flushing?!  My God, my face keeps turning beet red, even when I don’t feel hot or like I’m having a flash. People have commented on it , and during those times I would have been none the wiser.  It all made sense.

It’s been over a month and I’m not feeling better.  The oncologist was optimistic, but is going to conduct scans this fall and follow up with me, then track me.  The place is affiliated with Dana Farber in Boston.  Certainly trustworthy .

OK – Back to the fatigue!

I could sleep 10 hours at night and need a nap in the late afternoon/early evening.   Sleeping does not refresh me for the most part; it simply feels like a respite from being tired.

I read something about Chronic Fatigue where sufferers describe how it feels.  One lady wrote something about how it feels like you’re a cell phone on 0% and you plug yourself in overnight to recharge and you’re surprised to wake up and find you’re only up to 9% and can’t get it charged anymore than that.  You spend the day trying to budget this 9%.

Yes.  That’s exactly it.  And it’s a lot like the “spoon theory” that I refer to a lot . If you’re not familiar then here:  spoon theory

I feel as though I’m trying to constantly budget that 9% charge or those 15 spoons.  Lately going to work feels like it is more than 5 spoons, though.  It feels like 12 and I struggle to budget the last three. So …. I buy us takeout instead of grocery shopping or cooking dinner.  Then I lay down.  Sometimes I sleep.  Sometimes I get another spoon or two out of laying still and watching TV.   A phone call from a friend may go unanswered because even if I enjoy talking to them it feels like a spoon is spent and I may need it to run a load of laundry or help my son with a problem he’s having.

I had someone email me if I could attend her baby shower because I didn’t RSVP. I didn’t RSVP because it’s hard to make plans,  and I rationalized that after more time passed from the surgery maybe I would feel better and be able to answer YES with some semblance of certainty.  Of course I complicated this damned thing , but she was very understanding.  I can go and make an appearance.  I can opt out at the last minute if I’m totally debilitated.  I can go and stay if it’s a magical day and sitting at a table doesn’t cost me too many spoons.  I don’t know why I view these invites as obligations, as duties, that I’m either 100% in or I’m 100% out.  I think I should just be honest with people about what’s going on and say “I’ll try.”

spoon theory 2

But it doesn’t help that I don’t look sick.  Not at all.  The flushing gives me a beautiful, healthy glow. People are commending me on my coloring.  I’m gaining weight with all of this. Partly the thyroid.  Partly my bad eating habits due to the debilitating nature of the fatigue (take out several times /week is not healthy ……. high calorie, high fat, high sodium.  Only so many times one can order salad, right?) The fatigue also poses a barrier to exercise. I used to be a fitness freak.  A high-energy fitness freak.  Exercise felt invigorating. Now it is an expense of spoons and could cost me calling out of work or oversleeping and not getting my son to school on time (I’m not exaggerating).  Truth.  And if I was skinny and telling people I couldn’t help it , they wouldn’t doubt me.  But I try not to talk about it.  I don’t want to see the tight, polite smiles and the slow nods.

Today is Saturday, no work. I spent today resting. I went out to lunch and just the drive took a lot out of me.  I don’t feel like I’m living. I feel like I’m existing.  I want to have fun. I want to go out of town. I want to go for a hike.  I want to do so many things.  Going to the grocery store has to be carefully considered.  My house is a mess.  I’m not a clean freak by anyone’s standards, but I like to not feel embarrassed if someone swings by without calling.   I prioritize the cat litter and the dishes – – the smelly stuff.

I had one 5-day stretch where I felt pretty good. One day I felt OUTSTANDING.  I had a high energy day and did as much cleaning as time allowed.  I took my mom for a ride.  Then the next day I fulfilled a bucket list wish:  the St. Patrick’s Day Parade in Holyoke.  It was great.  Driving there, standing, driving back …. I could do it.

Since that stretch I feel less tolerant of, less patient with this fatigue.  I get teary-eyed sometimes.  I have a lot of living to do.  I love doing day trips to Boston or NYC.  I was promising my son one for months, and finally splurged on an overnight because I knew I couldn’t drive there and back in one day and do what we planned to do.  That was in January.  I want to lose weight and don’t have the energy to do anything to help with that.  I want to spend time with my family, quality time, but seem to fall short.

I should also maybe badger my PCP & endocrinologist. I don’t even know how long it takes for one to feel better after having a carcinoid tumor removed. Should I have felt better by now?  Do I need to give it another few weeks or days or months?  But badgering costs spoons.  Some spoons are worth the sacrifice.

I know there’s a life lesson wrapped in all of this.  I’m just feeling impatient and wish I could learn it and move on to learning more about, ohhhhhh…. winning the lottery and traveling the world.

There. I’m done whining.

 

 

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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 Less Live More”

I see an interesting website with what appear to be something like webinars about how to make the most of your life with Lyme.

http://lymelesslivemore.com/

Looks like good stuff.

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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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