The Science of Sustainability

Under Our Skin—A Look at Lyme Disease

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Lyme disease, carried by ticks, has become a politically and medically controversial disease. Image source:

In early September, I received an email from one of my friends, with the following message:

Let's pack the theaters!! I'll be volunteering there all weekend!

Under our Skin is finally hitting the big screen right here in our city 9/18-9/24.  You won't be disappointed… This is a film that everyone needs to see.  It says more than I could in a lifetime, and way more eloquently. The number of people diagnosed has gone up 77% from 2006-2008.

It's not about me, it's about opening your eyes to the complexity and horrid reality of chronic Lyme and how you can prevent it! You will be glad you took the 104 minutes to see this film! It could save your life or of a person you love. Turn the Corner (TTC) is the official Outreach Partner for the documentary Under Our Skin and will receive proceeds from the film. 

Please respond …  and invite everyone you know!

The message was from my friend Gayle who is living with chronic Lyme disease.  It was a call to arms to all her friends to see Under Our Skin at the Kabuki Theater.

Lyme disease has become a politically and medically controversial disease. Antibiotics are used in the early stages of treatment and usually cure early localized infection.  However, fewer than half the people that contract Lyme recall a tick bite and of those fewer than 50% get the bulls eye rash.  Many cases go untreated for months or years.  In more than half of the cases that go untreated, antibiotics will no longer cure the disease.  It is one of the fastest growing infectious diseases in the United State making it more prevalent than AIDS, yet is it also one of the most widely misdiagnosed.   Those suffering from Lyme disease are often misdiagnosed with maladies ranging from chronic fatigue syndrome to multiple sclerosis to Lou Gehrig's Disease.

Most often those with Lyme are mistreated and still suffer.  This documentary goes into the nuances of Lyme; how devastating it has been to those suffering it and how our healthcare system has only put on a bandaid on a severely debilitating disease.  A recent article in the San Francisco Chronicle features the film’s director and revives the discussion about Lyme Disease.

Many people only learn more about diseases when it touches someone they love.  My friend Gayle, has been a light and an inspiration in this sense to family and friends.  Her symptoms for a long time have been misdiagnosed. She was bit once when she was in her early teens.  Her doctor and her believe her disease worsened when she was bit again a few years ago while camping in California and suffered co-infection. This past year, she was finally diagnosed correctly and has been undergoing intensive treatment.  Her background is as an RN, and true to form she has been using her own experience to advocate and treat others.  Most people with chronic Lyme show little improvement with a course of antibiotics.  However, in the past few years, Hyperbaric Oxygen Therapy (HBOT) has been showing steady improvement in many chronic cases.  She now works at a Hyperbaric clinic in the city.  Most days, she gets up, receives her treatment and then spends the rest of the day treating others.

So for Gayle, this is my attempt to pack the theaters.  The proceeds from this movie will go to The Corner Foundation for grants and research to support those suffering this disease and prevent more from doing so.  It is a worthy cause worth writing about and a movie I will be attending.

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Cat

About the Author ()

Cathleen (Cat) is the former Special Projects Manager at California Academy of Sciences and worked in the public programs division. Before working at the Academy, Cat got her start as an intern at Lindsay Wildlife Museum for four years and worked with animals ranging from snakes and hawks to foxes and bobcats. She has a deep curiosity about the natural world and native California wildlife.
  • Pingback: Under Our Skin – " A Look at Lyme Disease | Drugs Reviews | Dugs News

  • Anne

    Chronic Lyme disease does not respond to short-term antibiotics, but it often responds to long-term antibiotics. I am also a registered nurse who is dealing with chronic Lyme disease and a few other infections that often accompany Lyme disease. I have found the most help from continuous antibiotics for over 5 years (when I stop, I rapidly lose the ability to walk and talk), supplements of herbs, vitamins, and minerals recommended by physicians who practice integrative medicine, and a healthy, dairy-free, gluten-free vegetarian diet. I also reach out to help others who are struggling with this infection, helping to raise awareness among the general public and the medical community in my area. I have seen the documentary "Under Our Skin" and highly recommend it. My personal research on Lyme disease while writing research papers for school (completed my BSN and MSN, working on PhD) supports the findings put forth in this documentary. This is a "MUST SEE" movie for everyone.

  • Thistle

    Thanks for talking about Lyme disease! I'm so glad you're going to see the movie. I would like to point out that tick bites are not the only way that Lyme disease is transmitted — blood transfusions and sexual transmission are also ways to contract it. Babies can get it in utero and be born with it.

    Also, please note that your statement "Most people with chronic Lyme show little improvement with a course of antibiotics." This is not true. It IS true that the conventional short course of antibiotics show little improvement. Indeed, such "treatment" does little but drive the infection deep into the nervous system, including the brain). Doctors who choose to ignore the facts about the behavior of the spirochete destroy lives every day by failing to treat correctly.

    Patients DO show much improvement with long-term antibiotic treatment. Sometimes this requires years, especially when a patient has sought correct diagnosis and appropriate treatment for years, but it DOES happen!

  • Jen RN

    Incredible film. Went missed dx for many years. Never had a tick bite that I was aware of. Dx with POTS/syncope and cardiac arrest. Test were negative initially. Started on abx and within 3 weeks was very positive for active and chronic lyme markers. 9mo if abx were needed. Long term affects- hair loss, sleep apnea and memory loss. I have helped so many people already with getting tested. Thanks you for supporting the continued awareness of lyme related illnesses.

  • http://www.lymedisease.org Phyllis Mervine, CALDA

    The film is awesome and speaks not only to people with Lyme disease, but to anyone who has experienced our broken health care system. A California Lyme Disease Association survey showed the average patient waited over 4 years for a diagnosis, and saw multiple doctors. Many were first diagnosed with something else – like MS, chronic fatigue, fibromyalgia, lupus, even mental illness. Oh yes, and hypochondria.

    Check the CALDA website if YOU want to keep up on this rapidly spreading disease that affects more people than AIDS.

  • cindy

    My husband may have lyme disease. If he does, it is probable, stage 3. We need a great doctor. Where should we look.

  • http://www.calacademy.org Cat

    Hi Cindy

    Thank you for your question! I am contacting my friend to see what she can recommend and will post what I find out.

    Best,
    Cat

  • http://www.calacademy.org Cat

    Hi Cindy

    In response, these two sites should be helpful…

    Lyme-Literate Doctor Referral Database:

    http://www.lymediseaseassociation.org/Doctor_Referrals.html

    CALDA is a great site for all kinds of information, and the yahoo group blog is wonderful

    http://www.lymedisease.org/

  • Karie

    This film is now being released to show in full to PBS viewers. Will you include it in upcoming lineup?

  • ME Champion

    Please show this film on KQED to Northern California, very important.

  • Jacqueline M Wilde

    Many PBS stations are showing the film this spring. Please add it to your list. It's an important film about a controversial disease that may be reaching epidemic proportions.
    Thank you. J Wilde

  • Danielle Flanagan

    Please show the documentary Under Our Skin in Humboldt, Tn. 38343

  • Bonnie

    I just watched this on PBS. As I sat there crying, knowing my mother did NOT die from Parkinson's but instead died of Lyme, I knew I had to find a site for the show. I insisted to anyone who would listen that she had Lyme. Unfortunately she had faith in her medical team and let them treat her for Parkinson's. How does a woman dance the jitterbug at her 60th birthday party die from Parkinson's two weeks after her 65th birthday? I now have the answer and know that I am NOT crazy. Thank you.

  • http://www.scienceinmedicine.org LindaRosaRN

    This is a science blog? Really?

    I urge you to take a look at a paper that has recently been published in The Lancet (Sept 2011) on the "chronic Lyme disease" movement:

    "Antiscience and ethical concerns associated with advocacy
    of Lyme disease" by Paul G Auwaerter, et al.

    "Abstract: Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health."

    Of particular note for any science blogger is this comment in the conclusions:

    "As with other antiscience groups, many Lyme disease activists are well funded and often connected to influential political and media sources. Treatment of Lyme disease with long-term antibiotics is profitable for LLMDs and can be falsely reassuring to patients, who believe that they have a debilitating chronic infection and thus do not seek diagnosis and treatment for other disorders. There is no deficiency of either new patients or activists. The medical anthropologist Sharon Kaufman wrote that “Information technology has transformed the way trust and knowledge are produced”. Most people now find medical information on the internet, and the websites of LLMDs and activists are often viewed as legitimate and reliable sources of information, which they may not be."

  • Elizabeth

    Has anyone here tried the herbal treatment Teasel Root? I've heard it's effective in treating Lyme.

  • brightsmiles

    an excellent documentary, not just Lyme Disease, but the prevalence of auto immune diseases. The increase in number of cases of Alzheimers and possible relationship to the bacteria carried by ticks. Very well made and very interesting to watch. Could not pull ourselves away.