Bloody Lymey

A Blog About Living with Lyme Disease

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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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.

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Letters for Lyme: The Whole World is Watching

This is stolen from my Lyme Alliance of the Berkshires newsletter:

Letters for Lyme: The Whole World is Watching:
A National Letter-Writing Campaign,
Spreading Awareness About Chronic Lyme Disease

Starting in the fall of 2010, Letters for Lyme was born from the imaginations of Lyme advocates Bambi Albert and Kenneth Mercure in response to a noticeable need for self-empowerment and an “activism for all” approach to enacting change. We wanted to provide everyone a chance to stand up and let their voice be counted, with little to no energy expenditure, something anyone suffering from a chronic illness knows is not often an available resource.

Since it’s inception there have been three campaigns, two major and one smaller localized campaign, the two most recent with specific themes: Physician Awareness and Science Isn’t Spelled With A $, which was launched in response to an inflammatory article written by the IDSA referring to Lyme advocates as “anti-science zealots” among other insults. The event was also planned to be done adjacent to the IDSA Annual Conference Protest which took place in Boston, MA on October 22nd, 2011.

With Lyme Disease Awareness Month just around the corner (starting May 1st) it is time for us to start building support for our next campaign and work towards making this the biggest we’ve ever done- period!

Letters for Lyme functions on a very simple structure. As a participant you are provided two different form letters, one for traditional mailing and another for use online, for text-limited email/submission forms. By May 1st there is also likely to be a third letter, specifically written to promote federal Lyme legislation currently working it’s way through Washington.

You are also provided an extensive list of contacts where you can send your letters, varying from government officials, health organizations, the media and press, celebrities and charitable organizations, all with complete contact information, both for online and snail-mail.

Participants may take part throughout the month of May, from the beginning to the end of the month.

For more information, please go to:
http://lettersforlymeproject.blogspot.com

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Malpractice Suits Lyme Disease

Well. Does it really “suit” Lyme Disease? Or is it just that there is so much conflicting information, no real consensus, and therefore inadequately educated physicians? How many of us have been told we have:

1. Depression
2. Chronic Fatigue Syndrome
3. Fibromyalgia
4. Hypothyroid
5. Rheumatoid Arthritis
6. Anxiety
7. MS
8. ADD/ADHD or a Learning Disability (more likely in children)
9. Autism (more likely in children)
10. Early onset Alzheimer’s

I know for ME, myself …. this is the cycle of diagnoses I went through with
Doctor 1:
1. Hypothyroidism (he was RIGHT and I responded to treatment initially, but he was reluctant to pursue anything beyond this …. and I later found out Lyme CAUSED the thyroid issues)
2. MS (he kept saying he faxed paperwork to the neurologist – I never heard anything. This talk of MS went on for over a month)
3. some type of anemia ? A vitamin B deficiency …. he tested me for it and suggested I take B vitamins anyway
4. Chronic Fatigue ….. he made it clear there was no treatment for it. I cried and sobbed, unintelligibly begging him to listen to me and that I know my body ….. here he said:
5. DEPRESSION.

Here I fired him.
Doctor 2:
1. He smiled politely, ordered some blood work and …. gave me a ‘script for Ativan. I know Ativan is an anxiety med. He didn’t SAY it was in my head, but I got the message.

Here I fired him.
Doctor 3 :
1. Treated me for RA even though my test was negative to rule out my possibly falsely testing negative
2. Lyme Disease. Test was negative, but I responded to treatment and she referred me out to a specialist. Specialist administered yet another test and it was very much positive.

This all spanned about a year. My symptoms progressed and got worse and worse. And it’s not just me. Sometimes I wonder …. I foolishly wonder …. what if they caught this quicker? Where would I be today? What kind of shape would I be in? Would I still be the athletic type who climbed mountains and rode my bike? Would I still be in the yard with my son from after dinner til dark every day instead of laying on the couch and trying to keep my eyes open? But it’s not just me. And my situation is not the worst – not by leaps and bounds.

In 1999 a teenage boy was awarded more than a million dollars in Canada. When he was healthy, his IQ was measured at 115. After becoming ill and not being diagnosed, he was tested twice. One result measured it to be an astounding 86 while another reflected an IQ of 103. Can you imagine?

Yeah. Maybe you can.

Here’s an article about him:
http://www.canlyme.com/cecilaward.html

The Infectious Disease Society of America (IDSA) does not believe in the validity of Chronic Lyme Disease and they seem to set the bar for the CDC whose cues physicians tend to follow. IDSA tends to recognize Post Lyme Syndrome, but it seems to be in the context of psychosomatic conditions. (And how many of us have had friends that have said we’re just “used” to being sick? Or it’s “in” our “heads?”)

An article in the New England Medical Journal argues the validity of the term “chronic” Lyme Disease. (Let me make a quick distinction: “Chronic Lyme Disease” implies that there is an active infection in the body that will always be there. Dr. Feder refers to the continuation of symptoms after treatment “Post Lyme Syndrome.” He acknowledges that symptoms persist, refuting the claim that the infection itself continues to exist – and this follows with what IDSA maintains).

Dr. Feder is reputed to serve as a medical witness in malpractice suits – and he does not believe in “chronic lyme disease.” And … this article he has written pisses me off. What interested me the most was his section called “Treatment of Post Lyme Disease Symptoms.” He discusses placebo effects, etc. Well? It’s to be expected. Dr. Feder describes the difficulty in finding enough people with these symptoms! Is he serious? I know countless people! Granted, this was written in 2007 …. and people suffering and struggling are on the rise each year. BUT!!! He seems to have a tone. A tonnnnnne.

Here’s a link to the dryly worded article: http://www.nejm.org/doi/full/10.1056/NEJMra072023#t=article

The problem with malpractice suits in general is that the doctors can prove that they have conducted the “appropriate” tests (which often turn up with false negatives). A case in Connecticut involves a lady who attempted to sue a doctor who diagnosed her with MS. She obtained a second opinion from a neurologist who concurred with the original diagnosis of MS. The case cost the doctor $350,000 and he WON. But did he win? That’s a costly ‘win,’ isn’t it? She pursued him in court because after the second opinion, she found an internist who administered yet another test and she tested positive. Her health continued to deteriorate.

(See “Medical Misadventure”: http://journals.lww.com/neurotodayonline/Fulltext/2010/02180/The_Ordeal_of_Medical_Malpractice_Lawsuits__Even.12.aspx)

So is a malpractice suit worth pursuing? I would say no. From what I’ve read, it sounds like there are a lot of balls to be hit back in court and it will be a costly and exhausting experience that will result in nothing.

However …. if it happens enough then perhaps enough physicians will be shaken up and they might be less complacent.

Thinking back to my doctor #1….. I don’t want to take him to court and never did. But wow, I wish he would wake up. It’s exhausting to have Lyme Disease and to just …. BREATHE. Never mind having to advocate for more to be done on our behalf! I think the best thing to do is have a FRIEND you trust to go with you to an appointment and to help you get a different doctor or a second opinion or a third opinion – whatever it takes.

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