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Lyme Wars: Detection and Treatment

May is Lyme awareness month, with good reason.

For the most part, the summer of 2010 proved to be hot and dry, not conducive weather for the tick population. Then in the later part of summer, the weather changed with significant amounts of rainfall and the ticks were back in full force.

In the spring and throughout July, a pilot program had started at Danbury Hospital, aimed at studying Lyme disease.

Amber Butler, who works for the Laura and Dale Kutnick Lyme Disease Research Center along with physicians’ assistants at the emergency room, is part of a research team. The research team “recruits” patients coming in to the E.R. with Lyme disease to participate in a study to help create a database.

Butler said those patients with a confirmed diagnosis willing to participate are asked to “fill out intake forms, with questions as to where exposure took place."

"Say for example, someone took a vacation to Martha’s Vineyard or received a bite while hiking or in their own back yard," Butler suggested. "Then patients would follow up six months later and fill out forms to see if their diagnosis has improved or whether they need more care.”

Due to the drier weather, there were not many people coming to the E.R. with symptoms of Lyme, so the program was put on hold until 2011.

The program should prove to be invaluable in the future as the debate over diagnosing symptoms of Lyme, treating the disease and the chronic symptoms, continues between heath care professionals and patients.

Last year, the Center for Disease Control (CDC) reported 30,000 cases of Lyme in the United States. In order for cases of Lyme to be reported, patient’s symptoms must reflect the list of symptoms that correspond with the CDC criteria.

Often Lyme disease goes undetected for a variety of reasons.

There are over 100 different tick diseases and only three specific Lyme tests; which sometimes prove to be inaccurate depending on what stage the disease is in or whether a medical professional read the test correctly.

Sometimes a person can be co-infected with two different types of tick diseases. And frequently Lyme disease goes on undetected for quite awhile

Yet another issue rests with extended care: insurance companies are not always willing to pay for extended treatments for patients with chronic Lyme disease.

‘Lyme Wars’ essentially exist among physicians when labeling patients with chronic or “post-chronic Lyme disease,” or PCLD, which is now the preferred label.

According to the documentary Under Our Skin, there is a political attachment between physicians who are in charge of setting the CDC criteria for Lyme disease.

The CDC has since written a “disclaimer” for its 2011 Case Definition of "Exposure" stating: Exposure is defined as having been less than or equal to 30 days before onset of EM, (erythema migrans, the initial skin lesion) in a wooded, brushy or grassy areas (i.e., potential tick habitants) in a country which Lyme is endemic.

A previous history of a tick bite is not required.

The CDC website further states, "Lyme disease reports will not be considered cases if the medical provider specifically states this is not a case of Lyme disease, or the only symptom listed is 'tick bite' or 'insect bite.'”

Too often, patients with PCLD are told their symptoms are in their head or their symptoms are really some other type of disease such as arthritis, lupus or muscular sclerosis.

The reason for this may lay with how the Lyme Borreliosis Burgdorferi spirocetes are shaped. The spirocetes (spy-ro-keets) are cork-screw in shape, like syphilis spirocetes, and both easily penetrate into the collagen tissue layer.

Spirochetes can easily adapt in their new environment as they have the ability to change their gene structure. Spirocetes can also hide from antibiotics, making ticks themselves and spirocetes the perfect storm.

In his book Healing Lyme, Stephen Harold Buhner writes, “What makes the tick so successful is its own chemical makeup.”

In the spring, ticks will lay their eggs and in one month larvae appear. Newly-hatched larvae will latch onto hosts that are low to the ground, such as mice.

If for example, a mouse is previously infected with Lyme, the existing spirochetes act like a magnet and are immediately drawn to the new larvae to infect them.

Budner also notes that someone with an already low immune system would be more susceptible to the chemical components in the tick saliva. The spirochetes quickly learn and adapt their protein bodies to a particular host system. Spirochetes do this by changing information in their DNA structure.

Spirochetes can move more quickly in the tissues of the body than they can within the blood. This may be part of the reason why patients are initially misdiagnosed with diseases such as lupus.

Brookfield resident Monica Bolesta has suffered for the last six years from the effects of what she calls a “trifecta” consisting of Lyme, Bartonella and Babesia J all at once.

In 2009, Bolesta was given The Courage Award from Turn the Corner, an organization that is dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne illnesses.

In June of 2009, then-Gov. M. Jodi Rell signed a bill allowing doctors to prescribe long-term antibiotics to their patients suffering with post-chronic Lyme disease.

The bill’s provision will ensure doctors are not singled out or endure repercussions from state regulations in Connecticut.

Some doctors have received fines and have had to close their offices for ignoring the standardized insurance regulations over the long-term needs of their patients.

Dr. Charles Ray Jones, a pediatrician who has a practice in Connecticut, is one such physician. Allegations were made to the Department of Public Health (DPH) and $20,000 in fines were imposed by the Connecticut Medical Board.

There will be a special seminar to kick off Lyme Disease Awareness Month at Western Connecticut University on Tuesday, May 3, from 6 p.m. to 9 p.m. at the Westside Student Campus Center. The event is free to the public.

andychausse April 26, 2011 at 10:46 AM
You guys should stop complaining because, one the health care we have now isnt as good as it was supposed to be. also the law has just been signed so give it some time. so if u want to say u have the right to choose tell that to ur congress men or state official. If you do not have insurance and need one You can find full medical coverage at the lowest price search online for "Penny Health Insurance" If you have health insurance and do not care about cost just be happy about it and trust me you are not going to loose anything!
Steven DeVaux April 26, 2011 at 11:24 AM
I thought I read the Jerry Murphy Task Force on Ticks solved this problem two years ago. At least that's what it appeared like in the Housatonic Times.
Amy Landisman April 26, 2011 at 11:51 AM
This is an excellent explanation of "Lyme Wars." Thank you for explaining it so thoroughly and helping people understand. I was infected with Lyme 6years ago and was misdiagnosed. In December I was diagnosed with a different tick borne illness (erlichiosis) and my doctor refused to treat me for Lyme, based on one type of blood test...a different test (Western Blot) confirmed that I did, in fact, have Lyme. I am slowly getting better and hope to be symptom free soon. It is very difficult for patients to navigate the system, which makes treatment difficult.
Robert Rogan April 26, 2011 at 01:37 PM
As a hunter I know the prevalence of deer ticks in and around the Brookfield area. Every time I go in the woods, I must thoroughly inspect my body for ticks when I leave the woods. Unfortunately, more times than not, I find a tick or three on my clothing/body. Not checking yourself after enjoying the outdoors can be detrimental. It was for me when I contracted Lyme disease in November. It took almost a month for the doctors to determine what was wrong and after a 10 day treatment I was back to my normal self. The illness takes a toll, my symptoms were fatigue, high spiking fevers, grogginess and irritability. Definitely not my normal self. I never developed the bulls eye rash familiar with many tick bites, but sure enough, it was Lyme disease. If any landowners have an issue with deer, feel free to contact me at robert.rogan@gmail.com or (203) 885-2194. I would be glad to eliminate your deer during the hunting season and the majority of the animals will be donated to Hunt to Feed which supports the Connecticut Food bank. Best wishes! Rob
LymeAdvocate April 26, 2011 at 03:29 PM
An unusually good article on Lyme. It looks as if you actually researched it before you wrote it! The lyme wars have been documented in great detail in audio interviews from both sides on the LDRD - http://www.lyme-disease-research-database.com/
Matt Dewkett April 26, 2011 at 04:27 PM
Just as an FYI, I am doing a viewfinder this week on the hiking trail behind Kid's Kingdom at the town hall. I pulled 12 ticks off of my dog once we got back to the car. Luckily only one made it to the skin and bit. So if anyone is out there checking out the trail, load up on DEET and wear long pants.
Sammi April 26, 2011 at 11:16 PM
Getting bitten by a tick doesn't mean you will definitely get lyme disease but that doesn't mean that you shouldn't be cautious. One way to avoid getting lyme disease is to stop the ticks from biting, and we all know ticks can't bite if they aren't alive. A product called Diatomaceous Earth is very effective in eradicating ticks and other unwanted pests around your home or garden. Food grade Diatomaceous Earth is completely safe for human use and really makes a difference. Check out the supply at http://www.gardenharvestsupply.com/ProductCart/pc/Diatomaceous-Earth-Food-Grade-p39.htm
Mona Engvig April 26, 2011 at 11:39 PM
Thanks for sharing this helpful information, and good luck with the work that is needed. I have three friends with various types of Lyme disease, and with two of them, it took years to get diagnosed. In Norway, where I'm from originally, Lyme Disease is not as "politiziced" as it is here, and it seems like people get help faster. There we have high quality universal health care, which of course takes the politics that you describe in the article out of the equation. Doctors and other medical professionals can focus on helping people, not adhering to for-profit health insurance companies.
Anna B May 10, 2011 at 09:02 PM
My puppy has lyme disease and he is in so much pain. The Vet in my research stated that if the tick is taken off withing a few minutes one is less likely to get the disease as it takes 48 hours for the lyme spirokete to be regurgitated once the tick is embedded into the skin. Interesting. Though, the smallist tick is the most dangerous. I am looking for natural abatement of this problem. Any town who would intentionally poisen the water supply deserves the resulting law suits from those who contract Cancer or other problems associated with the chemicals.
Anna B May 10, 2011 at 09:05 PM
Thanks Robert R. Interesting that hunters donate their "kill". I understand, though, that the tick aren't from deer deer, but the deer mice as they can go most places that the deer cannot.
Anna B May 10, 2011 at 09:08 PM
Thanks Sammi, I had heard diatomaceous earth is effective, too. better for the environment and less side effects for animals and humans.
Cyd Sellars May 23, 2011 at 03:01 PM
I agree! Debra did a lot of research before publishing!
Steven DeVaux June 22, 2011 at 12:26 AM
Go to http://www.newstimes.com/news/article/Kids-at-particular-risk-for-Lyme-disease-1433964.php and read about the risk kids take every day at Huckleberry Hill in the nature walks. Serious stuff.

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