Saturday, June 11, 2011

Guest Blogger- Maude Odgers

Although the summer garden is usually associated with pleasure and fun, there are certain dangers that all gardeners should be aware of.  In this post, my good gardening friend Maude Odgers cautions all of us who spend time outdoors to pay special attention to ticks and the associated threat of Lyme disease. Unfortunately, Maude has first-hand experience with Lyme and has spent the past several years both fighting and researching the disease.  She has made it her mission to raise public awareness with the hope of preventing the further spread of what can potentially be a very debilitating illness.

Maude's first encounters with gardening came in early childhood, when her mother gave her a small patch of earth to care for.  As a result of that experience she has carried a passion for nurturing the earth into adulthood and has been gardening seriously for the past 30 years. She holds a Master Gardener's certificate from UNH and, for over 12 years, has served as a dedicated volunteer with the Peterborough, NH Town Gardens, assisting with both design and maintenance. With the eyes of an artist, and a commitment to create beautiful spaces, she also runs her own garden design business, The Artful Gardener, in Peterborough, New Hampshire.

You can visit Maude's website at www.maudeodgers.com and, as a real treat, also visit her beautiful gardens when they are open through The Garden Conservancy's Open Days Program on August 7th.  Click here for more info on that event.


Hidden Danger- The Trouble With Ticks
by Maude Odgers



Unfortunately, the number of people getting Lyme disease is spreading in epidemic proportions and is a worldwide problem. In the United States it has been most prominent in the mid-Atlantic states, with the preponderance of cases being in Connecticut, New York, Pennsylvania, New Jersey, Massachusetts and New Hampshire, and runs all along the east coast from Maine to Florida. It is also growing quickly in northern California up through Oregon and Washington. But it can be found in almost every state in the nation. Lyme disease has long been a problem in England and Europe first infecting livestock (in Europe, it is called ‘boroleosis’). Because I am neither a scientist nor a doctor I can only share what I have learned through my own journey with the disease from doctors, herbalists, extensive reading and talking to others who share similar and disheartening stories. 


National Lyme Disease Risk
source: www.osha.gov
My Own Story


As a gardener and an avid lover of the outdoors I’ve had many a tick on me, and quite frankly never given it much thought until I became very ill with what seemed to be a mystery illness. This scenario is played out, unfortunately, for most all Lyme sufferers I have met. The highest incidence of Lyme occurs among landscapers and foresters, and those who work in the outdoors. My own story is that I found a deer tick embedded on me and as usual I took it off and went about my life. In a few weeks I came down with what I thought was possibly the flu with a headache, fever, sore joints, especially in my knees and neck, and was unusually tired. Since I work as a gardener I merely suspected I was working too hard and these were symptoms of most gardeners. Two months after the bite occurred (which is atypical) I noticed a circular rash around the site of the bite and called my regular doctor, who put me on doxycycline for ten days (the antibiotic of choice when first bit.) I began to feel a bit better but not totally, yet assuming I was ‘cured.’ I went on to have two more ticks in the next two years, but no rashes. I had since read that only about 30% of people who get Lyme disease have the red bulls-eye rash (known as EM, ‘erythema migrans’ rash). Over the past four years, I have been given four Lyme screening tests (known as the ELISA, which is the test most mainstream doctors use) and all were negative. As the months passed I began having more symptoms and eventually became very ill with a high fever, chills, vomiting, sore joints, unrelenting headache, and exhaustion. I thought it was the flu again, as did others, including my doctor. After over a month of not getting better, other symptoms began. I had an odd electrical buzzing running through my body, night sweats, headaches, dizziness, trouble walking, hearing, thinking and tingling in my extremities. My doctor ran numerous blood tests (including another for Lyme), all of which showed nothing was wrong--yet my symptoms continued to get worse. I went back to the doctor only to be told he could prescribe an anti-anxiety medication and a therapist, if I wanted. This is another scenario I’ve heard from almost every person I know with Lyme. I didn’t know what was wrong, but I knew it was not anxiety.


I talked to a friend with Lyme who felt I should be seen by a “Lyme Literate Medical Doctor” (LLMD), as soon as possible. A LLMD is a doctor who views Lyme as a chronic and persistent infection, which needs to be treated with antibiotics for longer periods of time. I found a Lyme Literate MD in my area, and with a more sensitive test it was clear I did have Lyme, along with several other co-infections. Unfortunately, ticks can carry many other diseases, along with Lyme, and it’s not unusual to contract multiple infections. In essence I was lucky to figure it out. Even though years had passed, I learned many people struggle much longer before getting the correct diagnoses, or finding a LLMD who could help them. There are many reasons the testing for Lyme is difficult. To add to the inaccuracies of the test there remains controversy about the testing which has lead to a political war among researchers, LLMD’s, the CDC (Center for Disease Control), insurance companies and the mainstream medical world. I will not expand on this here, but I highly recommend the book, Cure Unknown, Inside the Lyme Epidemic, by Pamela Weintraub, who has been a science journalist for the past 25 years, is senior editor for “Discover” magazine, consulting editor for “Psychology Today”, and previously Editor in Chief at “OMNI,” and is also a victim of the disease, along with her entire family. Her book explains the history of the disease, shows many examples of people being misdiagnosed (her family included), and the faulty testing. All of this drove her to delve into her own research to unravel some of the myths and inaccuracies about this disease, and to better understand the divide between the medical and scientific world. It is meticulously researched and compelling to read. Of the many books I have read on the subject it is without question the most forthright, honest and informative (you can click on the image of the book to order a copy).

Black-legged Deer Tick
The Common Carrier

The most common carrier of Lyme disease is the black-legged deer tick, although it is known that all ticks carry diseases, including Lyme. They are highly active in the early spring and fall, and are most likely to be found in the woods, woodpiles, seashore grassy areas, (anywhere along the water’s edge), and meadows. They perch themselves on the ends of grass tips or branches and hike onto their host as they pass by. In the spring the young nymphs feed off of deer and mice who are often infected, and then once they attach themselves to a host they begin infecting them. There is some controversy about the length of time a tick has to be embedded to give you Lyme, or any of the co-infections. The CDC says 24 hours, or longer, but LLMD’s believe it can be as little as four hours, or even less. In the spring the nymphs are only the size of a poppy seed and, therefore, very hard to see. In the fall they are the size of a sesame seed. Once they feed and become engorged they can become the size of a regular dog tick so it can be difficult to tell which kind of tick is on you. If you find a tick embedded on you it’s important to get it off as soon as possible. It is recommended that you use tweezers, not your fingers, pulling in the same direction it is attached, as close to the head as possible, trying not to squeeze it. Putting Hydrogen Peroxide on the bite is advisable as Lyme spirochetes are anaerobic. Some doctors now test the ticks themselves. A LLMD will most likely put you on a course of antibiotics (usually doxycycline initially, or amoxicillin) for at least 28 days. This is where more of the controversy arises. Most mainstream doctors will only prescribe a strong dose of doxy for two days, and at most 10 days. In my experience, Lyme Literate doctors do not believe this is long enough to stop the infection. It’s important to get on the antibiotics as soon as you can so the disease does not progress. If caught early it is curable.

The Cause
Spirochete responsible for Lyme

The bacteria that causes Lyme was named ‘Borrelia burgdorferi,’ in the 1980’s, after Willy Burgdorfer, a Swiss microbiologist who worked for the Rocky Mountain Laboratories of the National Institutes of Health in Hamilton, Montana.  But in the early 1960’s many people in Old Lyme, Connecticut, and along the coastline of Connecticut, came down with a vast array of symptoms that confused many doctors. Dr. Allen Steere eventually called it “Lyme Arthritis,” because there were so many cases in the Lyme area. Hence why it’s name became “Lyme Disease.” But Burgdorfer is credited as being the scientist who discovered the microorganisms in the ticks were spirochetes, resembling the same spirochete found in syphilis, which are coiled in corkscrew form. This gives the spirochete the ability to leave the bloodstream and wind its way into the soft tissues including the heart, lungs, stomach and brain. It can also end up in tendons, joints and bones. This also explains why many Lyme sufferers go on to develop so many other symptoms other than inflammation of the joints. Essentially Lyme is an auto-immune disease of the blood, but once it leaves the bloodstream it not only becomes harder to detect, but also begins to mimic other diseases. This is why early treatment is so important. Lyme has been named the ‘Great Imitator’ in that the disease is often misdiagnosed as Lupus, Chronic Fatigue Syndrome, Fibromyalgia, MS, ALS, Parkinson’s and Alzheimer’s. Tick-borne illnesses, of which there are many other than Lyme, can also cause heart and stomach ailments, tremors, seizures, and dementia to name a few. Unfortunately all of these diseases are hard to test for and treat.  


Treatment

The treatment for Lyme is also very controversial. Many LLMD’s have found that long-term antibiotics are the best approach. This is usually done with an assortment of antibiotics and other medications if co-infections are also present. Some believe herbs can effectively be used without antibiotics. My own personal experience is that LLMD’s and herbalists believe a combination of both is often the best approach, especially if the disease was not caught soon enough and has become chronic. To date, there is no cure for Lyme disease, but many people do get better. About 20% continue to have debilitating symptoms throughout their lives. Recovery is, at best, slow. 

photo of Digby by Maude Odgers

















Prevention & Resources

The best defense against Lyme disease, and the co-infections, is to check yourself immediately after you have been outside. Also check your dog(s), especially if they sleep on your bed. There are numerous tick repellents on the market from Deet to more natural approaches, but the best prevention remains checking! 

For further information on Lyme disease and other tick-borne infections, I recommend you click here and read the article by Edie Clark, which she wrote for “Yankee Magazine” in 2007. Her extensive research and own experience make it a valuable piece. She delves into many of the complexities and controversies around the disease. 

Also, by clicking on the image at left, you can check out a copy of the powerful documentary on Lyme called, “Under Our Skin.” It is very worthwhile, albeit alarming. It is often shown in theatres sponsored by Lyme supporters, and has recently been broadcasted on PBS. 


Websites can be dangerous as there is so much misinformation and contradictions. These are sites I like and feel are trustworthy: 


As for my own recovery, a year and half into treatment, four years after being bit, I’m making progress. I feel the most important task at hand is educating others so this does not happen to them. None of us, who love gardening and the out of doors, should live in fear. But we do need to be aware that ticks need to be taken seriously. I was very blasé about them until I became seriously ill. So be aware, enjoy, and be careful. 

4 comments:

  1. Maude, what a thought provoking post! Really drives home the need to be your own healthcare advocate but also to take care in our beautiful woods. I can only hope that academicians and medical professionals can move beyond the bureaucracy and make some progress on treatment and vaccines. Why is it they offer our pets annual tests and vaccines for Lyme but not their owners?

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  2. Thank you Paula. Your question is a good one and one we should all ask our doctors and vets. There was a vaccine for Lyme for people but it was taken off the market. It's all curious and frustrating. Hopefully it will all change with time. We can only hope sooner than later.

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  3. Maude, thank you for sharing what you've gleaned about Lyme disease...our mutual friend Rodney shared your article on his facebook page...very timely for me as I just found out that one of my little sisters was just diagnosed. : ( I will share your article with her and others. Thank you!
    Penny

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  4. Penny, I'm so sorry to hear about your sister. I hope they caught it early. It's such a dreadful disease and each person I know with it is on a different journey. This makes the diagnosis and the duration impossible to predict. If I can be of help in any way, please feel free to contact me. Meanwhile, I hope she recovers quickly. I'm glad you saw the article and I'm grateful to Rodney for putting it up on his facebook page. Good luck!

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Thank you for your comments!

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