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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Lyme Bill Blitz: NY & MA 2014

Dear Friends,

The following messages contain information on how you can help bring two very important bills into law. Both bills, one in MA and one in NY, protect treatment options for Lyme patients. The Massachusetts bill will require insurance companies to pay for long-term treatment for Lyme disease. The New York bill will help to protect our LLMDs from unwarranted investigation by the NYS Office of Professional MisConduct.
Together we can make a difference!
Karla
**THE LYME BILL BLITZ**

Huge Victory

& A NEW CALL TO ACTION!

Massachusetts Bill H.4142

The Lyme Disease Patient Protection Bill Needs your Help!

Great News!!! H.4142 has been reported out of the Joint Committee of Healthcare Financing and is currently before the House of Representatives.

You made the difference. YOUR CALLS, E-MAILS, & VISITS have helped push H.4142 through the JCHCF committee and into the House!

We need YOU to continue to CALL, VISIT, and/or E-MAIL! Please contact your local State Representative and ask them to vote in favor of H.4142 including language changes recommended by the MA Lyme Legislative Task Force. 

To find your Representative go tohttps://malegislature.gov/People/FindMyLegislator PLEASE CALL NOW!!!

This is the Homestretch, this is the time when we are all needed. Representatives have told us that they need our Lyme community’s help. We need to keep the pressure on, so they have the political capital to get this passed!

Together we can make a difference!

Thank you,

The Massachusetts Lyme Legislative Task Force
Helen Brown – Whitman
Donna Castle – Groton
Janice Dey – Westport
Susan Fairbank-Pitzer – Danvers
Sharon Hawkes, MLIS – Lenox
Jayme Kulesz – Groton
Trish McCleary – Sturbridge
Sheila Statlender, Ph.D. – Framingham
Michelle Treseler – Newton

NEWS: Getting your Lyme message to Gov. Cuomo
26th June 2014

Share this link with your Facebook friends!

 http://lymedisease.org/news/lyme_disease_views/news-getting-your-lyme-message-to-gov-cuomo.html#sthash.JsNv8mJZ.dpuf

Special link for NY residents to ask Gov. Cuomo to sign Lyme doctor protection bill. Other contact options for those outside of New York.

NY State residents:

Even if you have already contacted or intend to contact Governor Cuomo via phone call or personal letter, we are requesting that all New York State residents use this link (in addition) to contact the Governor and urge him to sign S7854-A7558B. Please add a personal note concerning how Lyme disease has affected you or your friends, family, and neighbors to the beginning of the letter.

https://www.votervoice.net/NYSCOALITION/Campaigns/36501/Respond

Using the votervoice site helps the NYS Coalition for Lyme and Tick-borne Diseases to document how many requests Governor Cuomo has received from NYS residents.
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People who don’t live in New York:


Non-NYS residents can use the contact information below to call or write Governor Cuomo and urge him to sign S7854-A7558B. The votervoice link will not work for non-NYS residents but it does contain a sample letter that users can copy and paste as part of their individual letters.
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The Honorable Andrew M. Cuomo
Governor of New York State
NYS State Capitol Building
Albany, NY 12224
(518) 474-8390
.
http://www.governor.ny.gov/contact/GovernorContactForm.php
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Bill S7854-A7558B – Prohibits the investigation of any claim of medical professional misconduct based solely on treatment that is not universally accepted by the medical profession:
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http://open.nysenate.gov/legislation/bill/S7854-2013
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In addition to this legislation, the NYS Senate’s Lyme Disease Task Force recently released its report. Read more here:
The Press Release and Report by the NYS Senate State Lyme Disease Task Force is astounding in its breath of important initiatives proposed for combating this scourge, including adopting “a resolution calling on the Centers for Disease Control to reevaluate its guidance on Lyme and other tick-borne diseases and for the National Institutes of Health, the Department of Defense, and other federal agencies to provide more funding for these diseases.”  I am posting links to both below.

Our work is just beginning to hold the NYS legislature to its commitment on these important initiatives, including addressing insurance denials and the need to update our physicians on important new research, such as evidence that supports persistence of infection and polymicrobial infection as reason that many patients remain ill after short-term treatment.

One particular interest of mine is the fact that many of the innovative new tests that are available to Lyme patients in all of the other 50 states are denied to NYS residents. As a result of this short-sighted policy, I had to go out-of-state to get many important tests that helped our physicians to properly diagnose and treat the multiple tick-borne illnesses affecting my family members. The Task Force Report recommends that “the Department of Health re-evaluate the tests and facilities it authorizes for Lyme and other Tick-Borne diseases in order to help facilitate earlier diagnoses, and better outcomes, across the State.”

New Task Force Report & Recommendations to Address Lyme and Tick-Borne Diseases
Posted by Majority Press on Wednesday, June 18th, 2014

http://www.nysenate.gov/press-release/senate-releases-task-force-report-recommendations-address-lyme-and-tick-borne-diseases

Report from the Senate Majority Coalition Task Force On Lyme and Tick-Borne Diseases          

http://www.nysenate.gov/files/pdfs/2014_LYME_task_force_report_0.pdf

– See more at: http://lymedisease.org/news/lyme_disease_views/news-getting-your-lyme-message-to-gov-cuomo.html#sthash.JsNv8mJZ.dpuf

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Obama Care – “Nobama?” “Probama?”

Reblogged this on Bloody Lymey and commented:

With election day drawing nearer, I want to reiterate my position on the relevant-to-Lyme topic of healthcare reform. Aside from this, I’m trying to stick to the primary purpose of my blog: Lyme Disease/Chronic Lyme Disease.

Please consider ALL the facts when you’re pulling the lever or penciling in your candidate. There is a LOT at stake this election season. Please choose your candidates carefully.

Additionally? If you are a woman or you love one, there is even more at stake in this election. When we think of “Planned Parenthood,” many of us think of teenagers getting pep-talks prior to abortions. We may even think of a basket-full of condoms in a waiting room with some STD pamphlets and back issues of Us Magazine. However, the program helps low-income women access mammograms and other crucial & lady-centric services. We with Lyme, and those we love, deserve every bit of healthcare we can. If we never need these safety nets, then let’s please remember the multitudes of those who do. Many of us are just one more sick day away from poverty. Many of us are on disability — even if we used to be high-income professionals. Some of us have finished high school and struggled our whole lives as waitresses — and can no longer be on our feet for a whole shift or carry heavy trays of dinners. Please remember everyone and how we’re all in this together.

If you do not share my opinion, then that’s fine please be patient as I’ll return to my primary purpose: Lyme Disease. I respect your opinions – all of them – and don’t want to jam mine down your throat.

**********************************************************************************************************

 

The primary purpose of this blog was originally for me to vent.  Now that I have a following, it is to share information …. AND to vent.  So with that in mind, I typically don’t wish to engage in any controversy or pick a stance with anything here.

However …… to us Americans, Obama Care should be of interest on a grand scale.

Image taken from Salon.com

(Picture from Salon.com)

Let me preface this by saying that I am a Massachusetts resident and Mitt Romney had been my governor.  He implemented this same thing here in Massachusetts.  It was called Massachusetts health care insurance reform law — not Obama Care. Not Romney Care. And when the Supreme Court agreed to the constitutionality of Obama’s healthcare plan, said Justice Ginsberg wrote “Congress followed Massachusetts’ lead.” (Article to read:  http://www.sfgate.com/news/article/For-Mitt-Romney-there-s-no-escaping-health-care-3673075.php)

I am currently a subscriber to Tuft’s Health Plan through my work — as I might have been some years ago before Romney implemented this.  I HAVE to have insurance or else I have to pay a tax penalty.  (Sound familiar?)  I simply have to submit a letter with my tax return, stating I had coverage.  As someone with Lyme Disease, I can say that I’m grateful for this.  Having insurance is something I might have let slip for myself, as a struggling single Mom.   To be truthful, before I had my son, it WAS something I let slip.  I saved $200/month this way – and when you live on the fringes of poverty, this is quite a savings.  I had some emergency room visits, sure, but I ultimately didn’t pay them.  I just couldn’t.

When I was pregnant, I  became eligible for Mass Health and my son was covered under it (At that time, I worked for a company that did not offer insurance– they had a staff of six and were not obliged to cover people).   Sometime after my son was born, Romney put this Healthcare Overhaul into place.  There is a tax penalty to those who are uninsured.

There is another health plan called Commonwealth Care for people who cannot get insurance through their jobs.  It is a plan, too, for very small business owners who do not make enough money to shell out $1,000/month on a COBRA plan.   Very often the premium is $12.00.    Do you think this MIGHT be good for the economy?  Do you think a free-lancing person might be more apt to hire an assistant or two?  Think of how many people are contractors or wedding photographers or something whose healthcare premiums have now been drastically reduced.  They are not struggling.  They have enough money for an assistant now and can do a better job so they’re hired again and again.  Their business grows.  They hire more people.

I was on Commonwealth Care for a while because I worked for a homeless shelter and my pay was pretty modest.  Because I could prove that I could not afford the $50/week, they allowed me to be on Commonwealth Care.  There were no surprises, no fine print, no enormous bills that puzzled me.  It covered most everything except for a modest copay for my prescriptions.    Many doctors accepted it, so there was no red tape to wade through to find a primary care physician.   I was allowed to see my Lyme Specialist.  I have to get a referral before taking on a specialist, but that’s kind of mainstream.

There are no death panels, Sarah Palin!  Not once have I known anyone wasting away in a hospital bed who was subject to a government body deciding whether or not they would live or die, whether or not they were eligible for Chemotherapy.

Let me reiterate that I have a job now with affordable health insurance and I qualify for it.  I can HAVE Tuft’s.  I can HAVE Blue Cross/Blue Shield — whatever is offered.  NO ONE is going to miss out on what they already have unless they WANT something else.  Obama is giving us OPTIONS. I have noticed that over the years since Romney put this into play, our healthcare industry is growing.  They are always hiring for nurses here – and doctors.  There are even sign-on bonuses.  I remember as a kid the hospital workers were often going on strike, there was often mass lay-offs (and I’m not saying no one ever gets laid off anymore…….)…..  one might easily deduce that hospital bills are being PAID now.  Maybe people are slipping on parts of it, but it must be better by leaps and bounds.  This is good for the economy.

Here is a website that lists projected job growth for Massachusetts:  http://lmi2.detma.org/lmi/pdf/careermoves/CareerMovesJOBoutlook.pdf

Notice that hospitals are mentioned as the industry generating the most jobs.  Notice how many jobs are coming from insurance-paying sources (medical, pharmaceutical, therapeutic).

There are many places hiring for CNA’s that will PAY you to go to school with the condition that you work for them for a year.  THAT is how sought-after many positions are here in Massachusetts.

There have been rumors that this “RomneyCare” has bankrupted Massachusetts.  According to FactCheck.org:

As the 2012 presidential campaign gets under way in just a few months (believe it or not), we expect to see an increasing number of attacks on so-called “RomneyCare.” So as part primer and part preemptive fact-checking, this article is our attempt to set the record straight. We found:

  • The major components of the state and federal law are similar, but details vary. The federal law put a greater emphasis on cost-control measures, for instance. Massachusetts is just now tackling that.
  • The state law was successful on one big goal: A little more than 98 percent of state residents now have insurance.
  • Claims that the law is “bankrupting” the state are greatly exaggerated. Costs rose more quickly than expected in the first few years, but are now in line with what the Massachusetts Taxpayers Foundation had estimated.
  • Small-business owners are perhaps the least happy stakeholders. Cheaper health plans for them through the state exchange haven’t materialized, as they hoped.
  • Despite claims to the contrary, there’s no clear evidence that the law had an adverse effect on waiting times. In fact, 62 percent of physicians say it didn’t.
  • Public support has been high. One poll found that 68.5 percent of nonelderly adults supported the law in 2006; 67 percent still do.
Full article:  http://www.factcheck.org/2011/03/romneycare-facts-and-falsehoods/
Having LIVED RomneyCare, having accepted my insurance through the state (it’s the BEST insurance I’ve had in my life, by the way), having seen it in action and its aftermath, I support “ObamaCare.”  I hope you will keep an open mind.  I hope you won’t listen to people postulating on it being a bad thing.  America has long been behind the times.  Most every First World Country cares for its citizens.  Why can’t we?
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Yale University. Mehhhhhhhh.

I found this post in the Yale Alumni Magazine:

(http://www.yalealumnimagazine.com/blog/?p=15060)

“It’s post-Lyme, not chronic Lyme, new study suggests
“Posted by Carole Bass ’83, ’97MSL on June 25, 2012, 3:59 pm
“In the chronic battles over the existence of chronic Lyme disease, Yale experts have spoken loudly for the medical establishment. There is no such thing as chronic Lyme, they say.

“For example: ‘The Infectious Diseases Society of America has taken a strong stand against the belief that people are chronically infected with the Lyme disease bacterium,’ Yale epidemiologist Durland Fish said in a recent interview. ‘Unfortunately, a large number of patients have been misled by self-appointed lay experts. … The result is that a large number of people are being treated needlessly for an infection they do not have.’

“Now comes a Yale study that puts a different spin on the debate. It does not find evidence for chronic Lyme, but suggests that symptoms that linger after antibiotic treatment may be a post-Lyme condition caused by detritus from the dead germs.

“Lyme disease—named for the area of eastern Connecticut where it was first discovered—is an infection caused by bacteria called spirochetes and transmitted to human beings by tiny, scarcely detectable deer ticks.

“’Although the disease is responsive to antibiotics, up to 25 percent of patients treated early in the course of infection can experience protracted musculoskeletal symptoms of unclear etiology,’ write the authors this week in the online Journal of Clinical Investigation.

“In other words, patients still hurt, and the doctors don’t know why.

“Led by Linda Bockenstedt, researchers at the Yale School of Medicine examined Lyme-infected mice after treating them with antibiotics. They found that the bacteria—and therefore, the infection—were gone. But proteins from the bacteria persisted in the mice’s joints and near their cartilage. And the animals’ immune systems produced antigens to attack the dead stuff, causing inflammation and potentially arthritis.

“’This study provides the first direct evidence that spirochete proteins can remain long after the bacterium is gone, and in places where people can experience symptoms after treatment for Lyme disease,’ Bockenstedt says in a Yale press release.

“Full disclosure: I’m currently being treated for Lyme disease after lab tests confirmed a recent infection. I plan on a full recovery.”

I love this rebuttal in the comments area:

“Christine Lydon, MD says:
June 27, 2012 at 9:59 pm
Dear Ms. Bockenstedt,

Thank you for affirming that chronic Lyme disease does not exist and insisting that Lyme infection is self-limited and cured by two to four weeks of oral antibiotics; this is of enormous comfort to the 85% of us who never fully recover, and the 40% of us eventually commit suicide.

Thank you for collaborating with insurance companies to create guidelines that preclude coverage of our medication and force doctors to risk their licenses for having the audacity to treat us past the four-week mark.

I just have one question for you: Since this disease is all in my head, why is it that I am prohibited from donating blood? Certainly there is no risk that one could “catch” an illness that, by your own assertion, doesn’t exist. And aside from the crippling symptoms of chronic Lyme disease that manifest solely as a result of my overactive imagination, I am a veritable picture of good health.

To illustrate my gratitude, I ask that you please allow me to donate my blood to a special blood bank for you and your family. I have a very rare blood type– it could prove invaluable the next time one of your children’s survival depends on this gift of life. Thanks to your guidelines, it turns out that I am not actually sick. There are no words to express how much it would mean to me if I could return that favor.

Yours Very Truly,
Christine Lydon, MD (Yale School of Medicine, Class of 1994; currently bedridden and unemployed)”

As for me?  I’m wondering why the F**K the medical community is stuck on semantics and proving that there is or isn’t Chronic Lyme and why aren’t they taking this energy and putting it toward fixing whatever they suppose the freaking problem is? !

People have had the audacity to tell me I’m just “used” to being sick.  Well?  How do you explain my 10-month remission? How do you explain the millions of people with this issue???  There’s the power of positive thinking and most every day I have moved forward in optimism — that’s not something that someone who is “used” to being sick does.  I’m outraged.

Anyone want to start a letter-writing campaign?  At the time I had read this article, it had been published not quite 3 days prior and the comments are already closed (you ought to read some of them!).  I find that to be terribly interesting.

5 Comments »

Is Lyme Disease a Government Conspiracy?

I’m not sure. And I guess it doesn’t matter. I have it and what caused it doesn’t concern me so much as how to get past it or even cure it. I could get stuck in the problem or I could get stuck in the solution. But? For what it’s worth …. I have read many conspiracy theory thingies. People send them to me by email. Maybe they think it’s interesting or maybe they think I need to be more fired up. At least if it would get my adrenal glands going again …. it might be useful! 🙂

What I have read include numerous theories:

1. Lyme Disease was “manufactured” on Plum Island, a small island in Long Island Sound off the coast of Connecticut (remember Connecticut is where it was “discovered” in a town called Old Lyme). It is not to be confused with the Plum Island in nearby Massachusetts (I believe it’s off the North Shore near Ipswich).

In fact, Les Roberts has written a book called “The Poison Plum” (man, this disease is quite the fruit bowl! Limes and plums …) He actually said that if he survived the disease, he would write a book. It was written as a “thriller” instead of as nonfiction.

Is the notion totally unfounded simply because this is written as a thriller? Well….there REALLY is a germ lab there:

And then there was Alabama with the infamous Tuskegee Syphilis Experiment, an experiment where they injected poor African Americans and prisoners with syphilis and withheld treatment to see “what would happen.” These poor men spawned babies who suffered birth defects, etc. in the name of this experiment. (Bill Clinton’s 1997 apology to the 8 survivors: “The United States government did something that was wrong—deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens. . . . clearly racist.”) Read more: The Tuskegee Syphilis Experiment — Infoplease.com http://www.infoplease.com/ipa/A0762136.html#ixzz1nh3KmLzc

If our government is capable of this, then why not Lyme Disease as well?

Many contend that what is happening on Plum Island in a bio-research facility is meant to be a contained and controlled study, but that deer are able to swim the fairly shallow waters there and back (hence deer ticks being the main couriers of this insidious disease). Voila. Instant epidemic, mainly contained in the Northeast of the U.S. More realistically may be that the employees who conduct the studies are the vectors of the bacteria – it is only a short ferry ride to the mainland. However, it is also stated that they study all diseases that are transmitted from animals to humans – and this includes West Nile and Ebola. There was an outbreak of West Nile in NYC which is relatively close to the island – but not as near as Old Lyme’s 13-mile proximity to the island. There’s multitudes of conflicting information about how feasible it is for someone to contract a disease from Plum Island.

2. Another Plum Island theory is that the U.S. was cultivating a deadly germ that would annihilate Soviet livestock during the cold war. It is said that employees kill any wild mammals on site out of fear that they may catch and spread some of the studied diseases here. However, the Audubon Society of NY State has named Plum Island an important site for birds. Birds are allowed to live on the island and their presence is encouraged with boxes and nesting areas.

3. Other theories include agricultural experiments that were meant to kill pests on crops but that the agents they created simply were carried to new hosts: humans.

Some of the people who perpetuate these theories are lyme patients looking for someone to blame, former government workers, people with their Ph.D….. all walks of life. Some sound very sound. Others … paranoid.

Some state it is maliciousness that gave birth to Lyme Disease. Others think it was incompetence.

FACTS about Plum Island:
1. There was a power outage due to a hurricane in 1991. Some online articles mention desperate employees duct-taping doors shut.
2. In 2004 (in response to a Foot-and-Mouth outbreak in the center), then-NY Senator Hillary Clinton and Congressman Tim Bishop wrote a letter to the Dept. of Homeland Security “We urge you to immediately investigate these alarming breaches at the highest levels, and to keep us apprised of all developments.” (quote from the NY Times)
3. U.S. law forbids Foot-and-Mouth to be studied on the mainland, but it permits studying the live bacteria on this island.
4. In Silence of the Lambs, this is the island that they offered to send Hanibal Lecter to – an island he called “Anthrax Island.”
5. Lab 257: this is the title of a conspiracy theory book as well as the number of a building in the animal studies compound
6. Some GOOD intentions for the lab: protecting our agriculture/FOOD, finding vaccines for the diseases that threaten humans
7. Scientists there must endure endless purification systems. No papers leave there; they are faxed. Staff wear plastic clothing and their eye glasses must be soaked. There is no eating, smoking, drinking or chewing gum allowed.
8. Congress approved the lab in the 1950’s amid fears of foot-and-mouth outbreaks in the U.S.; they were already happening in Canada & Mexico
9. A government site: http://www.dhs.gov/files/labs/editorial_0901.shtm
10.Another government site: http://www.dhs.gov/files/labs/editorial_0902.shtm

In the end? I have to wonder why people are investing THIS much energy into the origins of Lyme Disease and not the cure? Do we really need something to be angry about? Or do we need something to be happy about?
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