Planting seeds with Lyme disease letter writing campaign

Dear WordPress Friends,

I thought you might like to know how you helped to launch a successful letter writing campaign to share some information about Lyme disease in the state of NH. After your positive response to this post Lyme Disease is the perfect enemy and feedback from some friends I shortened and “professionalized” it into something that would be appropriate for a newspaper.   I then sent it out to the Manchester Union Leader, our state-wide paper and 13 community papers. I am extremely grateful that the statewide paper and 7 of the community papers printed the letter and am grateful to my friends who helped to edit my letter and my doctor who fact checked it for me. I was very moved to receive two phone calls at home from strangers who called to thank me for writing the letter, share their stories about their loved one’s struggle with Lyme and offer the resources they had to me. The letter in the statewide paper was picked up by several Lyme patient organizations and made its way onto Facebook and Twitter. Cool!  (See how far your encouragement went!)

(One more community weekly paper promised to print it but hasn’t yet. The week it was supposed to run there was an obituary of a woman who had died from Lyme Disease; maybe he decided to wait.  I’m hopeful the editor will still squeeze it in one of these weeks.)

I then wrote thank you notes to all of the papers that ran it with suggestions for other Lyme disease topics they might wish to cover along with primary sources of information. I’m hoping that these seeds that were planted will help in some way so that someday future patients don’t have to go through what happens today: being called Lyme Loonies by the program office at the National Institute for Health, doctors refusing to test for Lyme, doctors refusing to treat them even when they have a positive test, insurance companies refusing to pay for their treatment, being told it’s all in their head, parents reported to child protection for sick children missing too many days of school, etc.)

Below is the letter I wrote.   If any of my readers are inclined to write their own letters, please feel free to use the parts of this letter that might help you craft your own.

Blessings,

Cyndi

 

What’s the big deal about Lyme Disease? We hear of the seriously ill with problems severe enough to impact work, school and family life and the extreme cases where people are hospitalized, disabled or bed-ridden. But, how do people get so sick? Doesn’t a couple of weeks of antibiotics cure Lyme? And if Lyme is so bad, why don’t I hear more from the government or medical experts about this?

Borrelia Burgdorferi, the bacterium that causes Lyme can become a formidable foe when it is not treated early. It bores through your skin then migrates to your joints, brain, nervous system and heart. As it reproduces it can change its DNA to hide from your immune system. Lyme takes full advantage of immune system weakness such as allergies, auto-immune conditions or weaknesses caused by high-stress lives fueled by coffee, fast food, sugar and not enough sleep. Over time it can cause symptoms that mimic diseases such as Rheumatoid Arthritis, Lupus, MS, ALS, Alzheimer’s or Chronic Fatigue Syndrome making it difficult to diagnose.

We haven’t yet learned the most effective way to test for Lyme or to treat persistent Lyme infections. The official CDC guidelines reflect a very conservative approach to testing and treatment that does not work for everyone. These guidelines recommend a short-course of antibiotics for all patients: new cases, people who have been undiagnosed for some time, and those for whom treatment has failed before. Decisions about testing and treating Lyme Disease are made by a small group of people at the Infectious Disease Society of America.   Most of these panel members have ties to insurance, pharmaceutical, vaccine or research companies that have a big stake in the outcomes of this work. There are experienced Lyme physicians who have been treating hundreds, even thousands of patients and have much to add to what works. However, the Infectious-Diseases panel members have used their position to exclude physician input or research that conflicts with their viewpoints.   Thus the treatment guidelines remain narrowly focused and do not reflect this growing body of knowledge.   This leaves physicians and innocent patients without access to the most recent knowledge. Health insurance companies often deny or cut off treatment based on the CDC guidelines and patients with persistent infections are left to pay for what care they are able to find and can afford. Though the CDC does not recognize the chronic Lyme diagnosis, some NH residents have been rejected for coverage by disability and life insurance companies.

The official CDC position is that treatment cannot fail and they do not track the uncured cases. With the prevalence of Lyme in NH, it wouldn’t take much digging and you would likely find someone in your town that is struggling with persistent Lyme. I have personally been dealing with the disease for nearly three years after a two-week course of antibiotics did not work. Six months and a series of escalating symptoms later, my primary care doctor gave me a referral for Lupus and Rheumatoid Arthritis which turned out to be persistent Lyme.

In Lyme, we may have met the perfect enemy. It has a brilliant delivery system in the deer tick which is so tiny it often goes unseen, and that has a painless bite. It adapts easily to the weaknesses in individual immune systems and can present with such complex and changing symptoms that it is easy to think it is something else. It does not care about disagreements in the medical community or battles with insurance companies.   It just does what bacteria does best, spread and reproduce, something it is doing very effectively here in New Hampshire. The question is, what are we going to do about it?

We don’t have to stand still while waiting for the CDC to act. If you find an attached deer tick, remove it carefully with tweezers and send it to be tested. (No hot matches or Vaseline since it can cause the tick to empty its stomach contents, delivering Borrelia or other infections directly to you.) Testing for the bacterium in ticks is over 99% accurate while testing for antibodies in people can produce many false negatives.   The University of Amherst in Massachusetts is the closest place to send your tick.   If you get a bull’s eye rash from a tick bite that equals a positive diagnosis. Make sure you get treated. NH doctors can train with the International Lyme & Associated Diseases Society.   The State of NH could offer free tick testing and track persistent infection numbers to understand the scope of Lyme’s impact in NH. Finally, the state of NH could press for better national policy and more research. If we focus on public health as a top priority, we will find ways to better prevent and treat this infectious disease.

 

 

 

 

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