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Saturday, June 1, 2013

Worldwide Lyme Protest, May 2013

Photo by Dale Goodvin.

Where have I been? Clouds dance across the Sound and I wonder, where indeed? We’re still in the Aerie above Joe’s Bay in Home, holding up our little patch of sky, standing firm on the land we pay to take care of, “watchin’ the tide roll in…just to watch it roll away again,” as one of my personal top-ten songs of life testifies. I really don’t know how sane I would be at this point, if not for Mama Nature’s kinetic art, movement that so soothes me. Seems normal is a very movable fulcrum, on this little ball that wobbles through space. You don’t go looking for a cause…a cause slaps you, upside the head, as I’ve said in this space before.

My family is in our fifteenth year of a journey with my daughter’s Lyme disease, complicated by co-infections…and a deplorable set of guidelines that perpetuate abuse in our medical system. At first we felt so alone, trying to understand tick-borne infections within a firestorm of political, “yes it is—no it isn’t,” and definitely not understanding why we were told Anna was “cured” of Lyme by a short course of antibiotics, told that it was all in our heads when it was so obviously an ongoing infection, the symptoms of which began to fill more and more pages with each passing year. Slowly we began to meet other patients, families, advocates, and activists. Anna has been interviewed in print and on the radio, as have so many patients (even famous ones like singer Daryl Hall) trying to get the word out about chronic Lyme and the Infectious Disease Society of America’s chronic denial of this very real and growing problem.

Then Connecticut State Attorney General Blumenthal, now a Senator, felt there was enough evidence to move forward with a criminal investigation into the panel that made, and profited from, the Lyme Guidelines. We kept telling anyone who would listen, but a last-minute deal was reached, wherein the panel would review their guidelines. We held our breaths…but the new panel slapped the old ones on the back, and kept the exact same devastating misinformation as fact. Head of the original panel, Dr. Gary Wormser, actually used the term “Lyme-nuts” when speaking of the suffering patients he was supposed to help.

Anna has had a new primary since last July, when Medicaid required doctors to sign contracts with them, in order to pay for treatment, and her Lyme doctor refused.  He had taken her on as primary care physician six years before, promising to see her through her illness.  The change in rules made it easy for him to break his promise to Anna.  Being let go as his patient turned out to be a blessing in disguise though, as this doctor had lost interest in her, and other complicated patients who weren’t responding to basic ILADS (International Lyme and Associated Diseases Society) antibiotic protocol and Naturopathic supplements. He had left ILADS and now seemed more concerned about moving his practice and home to an upscale Seattle neighbourhood. He added “Shaman” to his Medical Degree (after what amounts to two months of weekend ‘study’ at www.shamanism.org over two years) and began charging some $600 to make patients lie on the floor, listening to a CD of drumming, while he “retrieves parts of their broken souls,” as it says in his clinic’s literature.

Yeah.

I worked with a Native American Shaman for seven years, was taught Honour, Respect, Humility, and Love… how to recognize scat when I see it, and name it. Patients looking for doctors would do well to visit www.ratemds.com before making appointments. Problem was, Anna was now bounced to the side of the fulcrum that takes her Medicaid insurance, but full of doctors who have been trained to ignore Lyme. Many refused her because of her chronic illness, and the doctor who did take her states categorically that he is “not interested in learning about Lyme.” Every appointment, for nearly a year now, has been a carousel of ‘first-visit hell’ while the DVD of “Under Our Skin” we gave him sits unopened in his office. He treats her like a drug-seeker when, for six solid months, she had to keep correcting him on her narcotics prescriptions…DOUBLE the amount, on one prescription! When mistakes are made, his office is unreachable, until I ask to speak to the Clinic Manager. Dr. Useless has a pamphlet which states, “I treat patients like family!” Well, I wouldnae want to be in your family, Jocko, as they say in Glasgow!

But there is a difference, here in 2013, from 1998.

Photo by Paul Mall.

Even Dr. Useless keeps Anna on a maintenance dose of IV antibiotics. Slowly, chronic patients, and those who advocate for them, are making some sense to mainstream doctors, albeit precious little. George W. Bush was treated with antibiotics, over the whole last year of his presidency and, when the word got out, common sense trickled just a little from the mountain-top, seemingly. It is not enough…but it is a change I can report to you, here in year fifteen.

Paul Mall, taking part in the Lyme "Die-In"
For a few years now, I’ve been taking action in May by standing at the intersection of SR302 in Purdy with a sign that says, “Lyme Lives Here!” and have been heartened by the waves, honks and best of all, those who stop to ask me what Lyme is. 2013 was different. This year, Lyme patients, families, friends, advocates, and activists from thirty countries around the world (Australia, UK, Romania, Canada, and the USA, to name just a few) banded together for a two-day protest, May 10th and 11th, a Friday and Saturday. Social media like Facebook and Youtube exploded with events, sites for posters, support and just about everything else. Story after story, after story, after story came up, refuting the IDSA Guidelines that denied chronic Lyme.

This year Anna, with more of our family and friends, joined me on the Saturday, at my usual stand in Purdy. We made posters, and tied green ribbons around the posts in front of us. We had a tremendous response from hundreds of good folks. In our hearts, we felt the closeness of every person around the world, standing for the truth at the same time. We couldn’t help but also feel the pain inside the Lyme community, finally reaching numbers that can gather strength for an audible shout. Even though I wrote to every major news station, we were not enough bodies to deserve a story. You get used to the duality, living with Lyme. Let me say here, we’re indebted to Cas Slater and the Key Peninsula News, for her ‘where are they now’ follow-up interview with Anna this year, helping us to get the word out about our worldwide protest.

The State of Washington represented!  Photo by Dale Goodvin.


Anna has been wiped-out, ever since—me too! Think I’ve aged thirty years, inside this fifteen. Still, we managed to get information into doctors’ offices, pharmacies, and online throughout the month. Saturday, May 25th saw a larger than usual number, rallying for a March to the White House, in Washington DC. If it was not covered well by the mainstream news, it was ALL over that beautiful world wide web! If you only knew what this cost patients to do, physically and financially, after so many have spent hundreds of thousands of dollars, trying to achieve some quality of life, trying to get help with research and healing. Other side of the coin is how this push has fed the spirit of Lyme patients who are having a hard time holding onto hope, while personal worlds crash and burn. Sixty percent of personal bankruptcies are because of medical debt in this country.



Lyme is not going away any time soon. There are quite a number of deadly tick-borne infections present in Washington State actually, like Bartonella, and Babesia. It is a myth that ONLY the black-legged deer tick, riding on white-tail deer, carry these infections. It is fact that Lyme can be passed in-utero. It is a fact that Northern California is endemic for Lyme, and that birds carry ticks on their coastal migrations, north and south. This month some very interesting facts have come to light, about some less-than-transparent dealings between people at the CDC and the IDSA Lyme-Guideline Panel members, in Pulitzer-worthy articles by Mary Beth Pfieffer, for The Poughkeepsie Journal.

 http://www.poughkeepsiejournal.com/

Look to the bottom of the front page for all the Lyme-related articles. There’s a big tick…ewww! And below is a link to the article from Kris Newby, who made the request for emails from the CDC, through the Freedom of Information Act. It’s not supposed to take over five years to have a FOIA request filled. It’s supposed to take no longer than thirty days. A cover-up is no longer speculation.

http://ire.org/blog/transparency-watch/2013/05/20/foia-request-cdc-took-five-years-fulfill/

Yesterday was the last day of May, Lyme-Awareness Month. It was an incredible thirty-one days of advocacy and activism. Clouds still dance across the Sound, on their way to the mountains of Washington, and we look to our next steps. Medicaid is moving Anna to a different system, where we have some hope in clinics that say they are used to having chronic patients, and will spend time listening to them. We’re going to try and get Anna to a good Lyme specialist in Northern California, and hope for more help. Around the world, patients with tick-borne infections hope for help. Those of us who love these patients, and have witnessed their private anguish, ask you to join us in the fight to see them cared for with respect and compassion. The IDSA Lyme Guidelines would be a joke at this point—if they were not still so damn deadly.





5 comments:

Lisa Hilton said...

Thanks for sharing your story Lorraine! You are right, Lyme is not going away. Neither are we, so they might as well face this problem head on and help us. We need research and proper treatment. The medical community needs proper training. I hope you're family get the help they need and you all recover from going soon. Thanks for spreading the word!

Lorraine Hart said...

Thank you so much Lisa Hilton, for being the USA co-ordinator for the worldwide Lyme protest, and for being in Washington to represent so many of us who couldn't go.

Lisa Hilton, Angele Rice, Paul Mall, Bambi Albert, Sharon and Jeff Rainey, are just a few of the names to spotlight and thank...but we thank the thousands of patients and advocates who have worked so diligently, not just in May, but every month. Anna and I would so like to join you next year, in Washington.

Kerry Johnson said...

I live in Bellingham, Washington, and I have Lyme.

"Health" to all.

Fernwoman said...

My name is April Dawn and I live in Bellingham, Washington. I have severe disabling chronic lyme disease, and it has almost completely destroyed my life. I have had it over 10 years. I have lost almost everything that makes my life worth living. I would write more but I hurt far too much right now.

Lorraine Hart said...

Thank you so much, Kerry and April Dawn, two more Lyme patients in our state, for taking the time and energy to join us. I really appreciate the effort, and I hope readers will begin to see how devastating these tick-borne infections can be. Readers, how would you feel if writing a short comment was too much for you, your brain in a fog, your body hurting more than anyone who hasn't seen or experienced can know? Folks who have had both Lyme and Cancer say...the Lyme is harder to cope with. In years to come, you are going to remember these blogs.