The controversy over Lyme Disease update….a gathering storm?

Theres no medicine for someone like you...

There's no medicine for someone like you...

I wanted to thank all of you who wrote responses to my blog entry about contracting Lyme Disease…the more I’ve read about this disease, and it is scary, let me tell you…the more I realize how fortunate I am to have 1. developed a rash, and 2. gotten treatment right away. I was so happy when I recently took my last dose of Doryx!!( And it was expensive…$150 even with prescription coverage..the lady at Giant Pharmacy said “whew” when she rang it up-I soon found out why.) These are just a few comments I’ve received….from Lucy:

Dear Donna,

Thank you for your anticipated upcoming effort to educate others concerning Lyme and tick borne diseases.I am happy to hear you got the rash so it could alert you to the fact you had a problem. I am also happy to hear and that you saw the rash and acted promptly (approximately 50 percent of those infected don’t get the rash in Maryland- and less than 10 percent of children get a rash).I am thankful that your doctor was able to recognise the rash and you were treated promptly. (This isn’t always the case and the rash is often misdiagnosed as a spider bite or ring worm or some other malady.)”

And oddly enough, before I saw my doctor, I thought maybe it was a spider bite too!

And starting this Friday night, July 10th, at The Senator Theatre on York Road, an award winning documentary about Lyme Disease called Under Our Skin-the Untold Story of Lyme Disease will be showing for a week(click here if you want to see the film trailer-wow)….I plan to see the film with my family, and I hope you do too. Being unaware of Lyme Disease and its dangers , is a risky ignorance. I hope you’ll see it. Linda Brace, the mother of a young woman featured in the documentary wrote me this:

Dear Ms. Hamilton:  I am the mother of Mandy Hughes, who is featured in the documentary “Under Our Skin” and frequently the spokesperson at events and screenings related to the documentary.

As a parent, I had/have all the hopes that my vibrant, healthy and intelligent child would grow up and thrive. Going from a dream of working in the profession of her choice, to within a few short years, wheelchair bound and in extreme pain, which you have seen in the documentary, cripples an entire family.

What is not seen are the personal struggles/tolls taken on families both emotionally and financially seeking out treatments that the Healthcare community refuses to acknowledge in hopes that this will all “just go away”. The fact is that it will not go away and neither can we.”

And don’t forget, it’s not just humans who get Lyme Disease…your pets can also be victims…perhaps more easily than you.

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5 Responses

  1. Donna- I hope your recovery is as easy as you said it has been. Bing Bang Boom
    I felt better immediately after I was initially treated-but slowly, insidiously I began to have a series of seemingly unrelated ailments, making the rounds to specialists in gastroenterology, neurology, psychology,urology, rheumatology. Within two years I was on disability and diagnosed with Persistent Lyme Disease.
    Lyme Disease is sneaky. My initial treatment for Lyme Disease, prescribed according to the IDSA guidelines like yours had the effect of killing some of the spirochetes, but sent the rest into hiding.
    I hope your doctor also tested you for co-infections. Ticks may be little buggers, but they pack one heck of a dirty punch.

  2. Hi Donna-

    Thank you for your informative report and for bringing some of these issues to light. As you have found, Lyme disease is a staggeringly controversial and confusing field for patients as well as for physicians.

    I am a study coordinator for the Lyme Disease Research Foundation of Maryland, based at Greenspring Station (lymemd.org) and wanted to bring our work to your attention. We believe that Lyme is an underappreciated and growing problem in our community and that scientifically rigorous, honest research is greatly needed in this field.

    Thanks again and best wishes~

  3. Donna–I’m so glad to hear that you caught it quickly and were treated right away. I had lyme in the mid 90’s and also had a rash, so was able to start the antibiotics immediately. My mistake turned out to be getting the lyme vaccine when it came out on the market. I’m still paying the price for that with almost constant pain from inflammation and joint problems that I never had before. The vaccine was taken off the market in 2002, and the reason given was lack of sales. However, many, many people who had the shots continue to have the same health problems that they would have had if they still had lyme. Thanks for the information on the documentary at the Senator. Sounds like something everyone should see.

  4. Donna, thank you for your talk on Lymes disease. Please keep the info going out. You are one of the lucky ones. I have had it several years and is considered to have “Chronic” lymes. After seeing the film “Under My Skin” you will understand why people are having such a hard time finding a doctor to treat them and to take them serious. Keep the word going.

  5. Thought this might interest you… and your cankles.

    ~smile~

    Press Release- Lyme Disease Education and Support Groups of Maryland

    July 27, 2009 – The Infectious Diseases Society of America (IDSA) Lyme Disease Review Panel will hear testimony from both sides of the Lyme disease debate on Thursday, July 30, 2009, as part of an anti-trust investigation settlement agreement.

    The open hearing will be in Washington, DC and will be aired live over the internet from 7:40 AM (registration) until 5 PM.

    The presentation will be archived for one year on http://www.idsociety.org

    The hearing stems from CT Attorney General Blumenthal’s investigation, which uncovered “serious flaws” in the IDSA’s Lyme Disease Guidelines development process in 2008.

    It was determined the IDSA authors had multiple conflicts of interest and had excluded scientific evidence.

    In spite of the investigation’s conclusions, the IDSA Lyme Disease Treatment Guidelines continue to be used by a dwindling number of doctors, including some at Johns Hopkins (home to several IDSA Guidelines authors, editors and spokesmen).

    They are also heavily relied upon by numerous health insurers as a basis to deny reimbursements.

    Scientific evidence refuting IDSA’s theories has been submitted (over 2,000 pages of analysis and research by ILADS alone) and oral summaries will be presented by both sides the day of the hearing.

    The IDSA adamantly denies persistent infection as a viable reason for the continuing symptoms in chronically ill Lyme patients and states additional antibiotics treatment should not be an option.

    Other than palliative care, they recommend against any and all treatment options (from vitamins to different classes of antibiotics) stating there is no such thing as chronic Lyme.

    The International Lyme and Associated Diseases Society (ILADS), American Association of Physicians and Surgeons (AAPS), German Society of Lyme Borreliosis and the Lyme Disease Action (UK) are a few groups that have publicly opposed the IDSA’s restrictive treatment guidelines.

    The Lyme Disease Education and Support Groups of Maryland and the Harford County Lyme Disease Support Group, Inc submitted written testimony supporting a physician’s right to use clinical judgment and patient’s rights to receive adequate treatment.

    Maryland patients, volunteers and group leaders from across the state have also been active assisting national and state organizations with their ongoing efforts throughout the process.

    Contact person: Lucy Barnes, Director

    AfterTheBite@gmail.com

    Lyme Disease Education and Support Groups of Maryland

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