Under Our Skin / Lyme Disease

[Dan.Linehan]

Nick and I developed the website for a new documentary out now about Lyme disease: Under Our Skin.

Thousands of people have chronic Lyme disease symptoms in America. Unfortunately these people are not recognized as having a "real disease" by the medical community. They are frequently refused treatment, and their symptoms can grow more and more debilitating with time. Eventually, when left untreated, patients can die from suffocation from convulsions and seizures, lose all their mobility, experience deterioration of their spine and bones, and/or get dementia or brain damage. In late stages, patients frequently get diagnosed with the wrong condition, such as early onset Alzheimer's, Parkinson's or MS and never receive the treatment they need.

The politics associated with Lyme disease are absolutely surreal. The film follows several doctors who treat the disease as it needs to be treated - these doctors get reported to medical boards by insurance companies because the treatments are so expensive. Insurance companies don't want to pay. The doctors risk losing their medical licenses, and can then can also be sued by insurance companies. All for simply keeping their patients alive with proper treatment rather than letting them die slowly.

There were 30,000 newly reported cases of Lyme disease in 2007. The number goes up every year. Most cases go unreported, so the numbers are likely to be much higher than you see on the chart. Recent climate changes seem to be making the disease more and more common as time goes on. When Lyme disease is not treated properly right away it can turn into a chronic, debilitating, life long struggle for someone who gets it. Getting proper treatment right away is absolutely crucial.

I'd highly recommend seeing the film to learn about the disease, and to see a up-close look at how our health care system treats patients who have chronic Lyme disease.

The film will hopefully be put into wide release in early 2009. Until then, you can see if there is a screening near you, or you can host one yourself.

Hope you enjoy the film and website!

[Dan.Linehan]

Latest comment on the Trailer:

In June of 2003 I was bitten by a tic in the ear. In May of 2004 I was diagnosed with Lyme Disease. My case was reported to the CDC. The ID specialist of Stonybrook Hospital NY prescribed 48 hrs of IV antibiotics; treatment plan to follow. Upon admitting a Neurologist I did not know said I didnt have Lyme and to me go home. My X-Husband used the reprehensible Child Protective Service of Suffolk County NY, decided my disease was delusional. August 14 2007 my children were taken without notice.

[Dan.Linehan]

Leslie Wermers, a prominent figure in the Lyme community, passed away last week in her sleep at the age of 41, after fighting with Lyme disease for more than a decade.

UNDER OUR SKIN Blog » Lyme community loses a hero and friend


Meanwhile, people continue to sign the site's guestbook almost daily. There were three new posts just on 11-11.

Under Our Skin - View Feedback

[funchy]

Thanks for posting this and sharing this important info with others!!! I enjoyed watching the video clip. I hope at some point they put the entire movie on YouTube; this information needs to be shared.

I knew a local guy who was diagnosed with Lymes, but not until a lot of time had passed. He was on IV antibiotics for awhile. He now shuffles with a cane and is permanently unable to work. He's only maybe early 40s in age.

I have to say tha I am not yet convinced there is an intentional conspiracy against treating it. In the video clip the doctor who was losing his license was said to have prescribed drugs to people he did not meet; this would be criteria for any doctor to risk their license. Treatment, when applied right away, is as cheap as a bottle or two of antibiotics; it would be cheaper for insurance to pay $40 now than hundreds to thousands in later tests, treatments, specialists, and care. What do you think is their reason for not addressing it? And if it's a matter of just getting a $40 bottle of pills, why do we need to deal with the insurance company? (Most people can pay the $40 out of pocket). Is it an education issue where doctors aren't getting the info they need to diagnose it?

The reason my friend had a hard time getting diagnosed right away has to do with the flaws in testing. Until more reliable methods are developed, from what I understand all of the tests for human Lymes, can give a high rate of incorrect results.

I know of Lyme's firsthand because of my work with the horse rescue. In horses, Lymes is believed to cause intermittent lameness, general grumpiness, achiness, sometimes muscle atrophy (from the neurological component), and hating to be touched. The problem is that many horses (and dogs) seem to be exposed [test positive] and only some seem to show symptoms. In horses, it's easier to deal with: most respond to several weeks of really high doses of antibiotics (sometimes 80-90 Doxycycline pills/day). There are some vets who feel that Lymes exposure doesn't cause the disease (at least in horses). I do know from firsthand experience that I've had a few horses who had issues and after Doxy treatment were clearly and objectively much better.

Hopefully there will be more money invested in Lymes research in the near future.

[ns123]

I have a really hard time believing that so many people can be complicit in watching another person's pain.

The doctors that turn away people, I have a hard time believing they do that because they don't care. The insurance companies that don't insure people for certain treatments, I have a hard time believing that there is no other way to pay except for using insurance. Doctors who don't diagnose it early, there may be a different reason why it's mis-diagnosed, instead of uncaring or incompetent doctors.

When I see movies like this, it brings about the mentality of "blame the system." I see the system is us, it is made of people, people like you and me, and when we blame the system, we really blame ourselves. We should really be mad at ourselves, because we, as human beings, as individuals, created this.

I'm not saying I don't believe what you claim, but I'm saying, I'm having a really hard time seeing so many people be so complicit and ugly to other people who are suffering. And it certainly does not resonate with my personal experience.

[lovelyn]

Thanks for posting that trailer. I think it's important for people to see it.

When I was 14, I went on a camping trip and was bitten by a tick. When I started getting ill my mother took me to the doctor. After doing a some tests the doctored determined that there was nothing wrong with me and told me to stop faking and go back to school. Angered, my mother took me to a second doctor. Upon examination, the doctored noticed a fading bulls eye shaped rash on my ankle and said that I may have lyme disease. She had me tested for the disease and put me on antibiotics right away. She said that wasting anymore time before treating me would be very bad. I went on antibiotics and my symptoms went away. When the doctor got the test results, it turned out I did have lyme disease. I'm very lucky that I had a doctor who knew about the disease and paid close attention to my symptoms. So many people suffer needlessly. Early treatment makes all the difference.