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The Silent Epidemic

Living in a rural Vermont town and having been personally effected I would be remiss in not sharing information with my neighbors about this topic. My experience has been that most people I talk to don't realize the seriousness of Lyme Disease in Vt. For starters Vermont ranks #2 in the United States per capita for cases of Lyme Disease.

This time of year you are at greater risk as the deer tick that transmits Lyme Disease is in the nymph (smallest) stage. For comparison purposes it is about the size of the tip of a pen. As a result most people don't see them and don't realize that they have been bitten. The incidence of developing a rash ( bulls-eye or other ) is maybe 50 percent.

The best thing is prevention which means thoroughly checking yourself and family members ( don't forget the furry ones ) after being outdoors. You should wear light colored clothing pants tucked in to socks and long sleeve shirts. You can spray clothing with permethrin which is said to repel ticks.

Tick removal

PREVENTION: I received an e-mail after my last post asking about natural repellants. After speaking to a friend who is more knowledgeable about natural remedies she suggested a product : CEDARCIDE I.R.S. I understand that it is safe for children and pets and available via Amazon.

If you find a TICK attached to you the correct way to remove the TICK is by using a fine point tweezers and grab the tick by the head usually closest to the skin and pull out. There are also commercially available TICK removal kits available. Follow directions for that particular kit. I am told that the kit that looks like a small spoon works well. " DO NOT SQUEEZE THE BODY OF THE TICK " as this will cause the blood mixed with lyme and other tick borne diseases to enter your body." BE SURE TO REMOVE THE ENTIRE TICK " If unable to remove entirely speak with your physician for direction. As the next step has different opinions about what is the best action I suggest that you contact your physician.

Diagnosis

Diagnosis can be difficult if you don't find a tick attached or don't get the classic "bull's eye rash" which may not look like a bull's eye but can be red, circular or irregular in shape. ( it is most likely not a spider bite as i have heard people are told by their physicians ) Symptoms of acute lyme may include headache,neck pain, muscle aches and generally flu-like in nature.

The current blood testing is inaccurate and unreliable-often referred to as two tier testing (Elisa if positive then Western Blot ) problem is the Elisa is about 45% accurate and the Western Blot that most physicians use in this area is about 60-70% accurate. In the early 1990's they had developed a lyme vaccine using bands 31 & 34 as markers as they were the most specific to lyme disease. The CDC then removed both these bands from the Western Blot test to prevent false positive results from people who had the vaccine. After the vaccine failed and was removed from the market the CDC did not put these bands back into the Western Blot test. Only certain labs include them. Some physicians refer to these labs as "boutique labs".

The current testing is so... Inaccurate & unreliable that the state of Virginia recently passed a law requiring physicians to inform their patients that a negative test result does not mean you do not have lyme disease.

Controversy continues with testing and diagnosis. I think it is safe to say that diagnosis should be reached by history, symptoms & clinical judgement. The blood tests mentioned above were not designed to diagnose.

Please do not allow your physician to tell you that there is no lyme disease in vermont !! It is here to stay !!
Reminder to do tick checks !

What is Lyme Disease? & How Do People Get It?

 Lyme disease is an infection caused by a spirochete (say “SPY-ROH-KEET”) that humans can get from the bite of an infected deer tick. The spirochete's scientific name is Borrelia burgdorferi. Lyme disease is called “The Great Imitator” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.

People usually get Lyme disease from ticks infected with Lyme spirochetes. Most human cases are caused by the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because their bite is painless, many people do not realize they have been bitten.

Ticks may remain attached for several days while they feed. The longer they remain attached, the greater the risk that they will pass the Lyme bacteria into your bloodstream, where they will start spreading throughout your body. The amount of time the tick needs to be attached before passing on Lyme Disease or other Tick Borne Diseases varies with the source of the information from immediately to 24 - 36 hrs.

If pregnant women are infected, they sometimes pass Lyme disease to their unborn children. Some doctors believe other types of human-to-human transmission are possible but little is known for certain.

BE TICK SMART & SAFE

Chronic Lyme : Personal Stories from VT Farmers

I want to thank Lisa Pawlik for posting that the film " Under our Skin " focuses predominantly on Chronic Lyme vs Acute Lyme. I feel that people need information from sources outside the CDC as well in order to make an informed decision.

Here are some other links that have different points of view than the CDC: www.lymedisease.org
www.ilads.org

 Below is a link to an article and video from the Burlington Free Press on 6/16/13 about real people that are farmers in VT and their experience with Chronic Lyme Disease:
http://www.vermontlyme.com/burlington-free-press-covers-lyme-in-vermont/

I would like to address some information that I have found to be incorrect as a researched this topic.

Only about 50% of people get a rash not 80 % as stated in the article.
Also to my knowledge there are no definitive tests for Lyme Disease no matter what point in the disease cycle it is taken.

BE TICK SAFE 

 

Lyme Disease Prevention: Additional Info

  .   As I have said in a previous post protecting yourself and doing daily tick checks is the best way to prevent getting Lyme Disease or Other Tick Borne Diseases (to be discussed at a later date). I need to say that no repellent is 100 % effective.

Ways to Protect yourself:
Wear long pants tucked in to socks or boots and long sleeves preferably light colored clothing.
Avoid wooded and high grass and leafy ground areas
If need to be in these type of areas leave clothing outside the house ie: porch,mudroom.
You can put them in a hot dryer for 1 Hr.to kill any ticks that may be on them .

Permetherin: Repellant used only on clothing and has been shown to be quite effective. It can last thru washings as well.

Deet: Per Vt. Dept. of Health page they recommend product with 30% Deet. This is for use on your skin. Not sure if it is the same percentage for children. I would advise you to ask your child's pyhsician. This is a poison and you should wash it off when done with your outdoor activity. From what I have read Deet works well for mosquitoes and other insects but not very effective against ticks.

Cedarcide I.R.S.:  A botanical tick repellant that can be purchased on-line.

Lyme Guard: Also a botanical tick repellant that can be purchased on-line.

Daily Tick Checks: Ticks like warm moist areas ie: behind the ears, under arms, groin area to name a few. You can have the person stand on a white sheet to more easily see the ticks when they fall off.

BE TICK SAFE

 

Lyme Disease : My Personal Journey

I hope that after reading my testimony given April 3rd 2013 in front of the joint House and Senate Health Committees that you will understand the seriousness of Lyme Disease in Vermont and issues in the medical community that further complicates this issue. I also hope you can understand my passion to educate the public. I want to prevent others from having to experience a similar journey with Lyme Disease.

My name is Pam Griffin-Tierney. I live in Underhill with my husband and have three adult children. I was working for the VNA as a Certified Mental Health Nurse for 10 years.

Thank you for holding this hearing. You have no idea how it gives me hope that you may help bring relief to people like me.

Lyme Disease found me in the spring of 1989 in the Hudson River Valley area of New York State, which is considered a high endemic area for Lyme Disease. Approximately 4-6 weeks after I removed a tick from between my toes, I developed the classic symptoms of Acute Lyme Disease. I was treated by my primary care physician with the designated antibiotic protocol at that time.

Who would have thought that something as small as the tip of a pen would drastically impact my life on so many levels.  My battle with Lyme Disease has been long and arduous; fraught with anger, frustration, discouragement and at times despair.

I had three courses of antibiotic treatment over an 8 month period of time and my presenting symptoms became more neurological.

Shortly after my third course of antibiotic treatment, my family and I relocated to Vermont to improve our quality of life. My primary care physician instructed me to follow up with a physician in Vermont. I didn’t realize how frustrating and difficult that would become.

For 17 years I was misdiagnosed and treated for illnesses I did not have. I was subjected to a multitude of unnecessary costly tests. Despite my history I was repeatedly told that this was not Lyme Disease related and that all my tests were normal.

I think it is important to mention that I never had a bull’s eye rash and have never tested positive on the ELISA or Western Blot during the course of my disease.  In 2003 the stress of medically necessary surgery created the prime environment for the spirochetes to proliferate, creating a downhill spiral in my health and a worsening of symptoms.

After seeing 14 physicians at an out of pocket expense of approximately $30,000, I was diagnosed with Late Stage or Persistent Lyme Disease by a physician in Vermont who is no longer practicing . Over an 18 month period I was treated with multiple oral antibiotics singularly, and in combination, with no improvement in symptoms.  I had to travel three hours each time I saw this physician.  I then saw a Lyme Disease specialist six hours away in New York and did a short course of oral antibiotics followed by Bicillin injections twice a week for two months. This treatment was ineffective as well, and IV antibiotics were recommended. 

I discovered my Medicare Health Plan would pay for the insertion of the central line and the medication, but would not cover the supplies needed for the maintenance of the central line. In conversation with vendors I was informed that it would cost me $50 - $100 per day out of pocket thus making it cost prohibitive to do at home. 

I contacted two local hospitals and was told by one that they weren’t set up to administer IV antibiotics on an outpatient basis and the other was willing to accommodate my needs but wanted a physician in Vermont to oversee the treatment in conjunction with my Lyme Disease specialist. I was unable to find a physician willing to do this.

Time passed and in May 2010 I was able to locate a different Lyme Specialist in New York who was also six hours away from my home. Fortunately, this specialist was close to where I could stay with relatives.  I began going to the physician’s office daily to receive the IV antibiotic without the need for a central line. After 10-12 weeks my symptoms improved about 80%. I was back again, the “real“ me . I felt as if I was granted a miracle.

I have remained at the same level of functioning since August of 2010.

During the 17 years without treatment my symptoms progressively increased and worsened in severity. I had difficulty with fine motor coordination; short and long term memory impairment; word finding difficulty; transposition of words and numbers and thinking one word and then I would say the opposite word.

The fatigue was so debilitating that even talking on the telephone was too much and going upstairs once a day felt like I was climbing Mount Kilimanjaro. My entire body was in severe, constant pain and at times didn’t think I could go on.

I was on narcotic pain medication for 8 years when I should have been receiving treatment for Persistent Lyme Disease. This became the focus of my treatment rather than finding the cause of the pain. I wasted time and money seeing multiple specialists for each new symptom and no one was looking at the whole picture. My care was compartmentalized.

One of the tenets in the practice of medicine is to “do no harm.” In the case of Lyme Disease, this means doctors need more education about the symptoms, there needs to be more research, and doctors need the freedom to treat the disease as they see fit. I am still angry that it took me so long to find a doctor who not only understood, but was willing to do what was needed to help me heal.

This disease is devastating in so many ways. I was at a pivotal point in my nursing career and I lost a job that a loved.  As a result of loss of income my house went into foreclosure; had to file for bankruptcy and needed to go on disability. I lost independence; relationships; my marriage was strained and my quality of life was marginal. I would have survived much better if insurance covered my treatment.

I credit my success to perseverance;  a compelling desire to return to a state of wellness; the support of spouse; family; friends and fellow “lymies,“ and finally finding a Lyme Specialist who listened and understood. I wish I had access to care and effective treatment without having to go out of state. I am afraid of what I will have to go through if I relapse.

I think there is a need for early diagnosis, but as my experience shows, that is not enough. Vermont needs physicians open minded enough to entertain the idea that there is more than one way to treat Acute and Late Stage Lyme Disease. 

Thank you for taking the time to read this extra long post.
BE TICK SAFE

Lyme Disease : " Lyme Wars "

Below find a link to an article recently published by The New Yorker magazine about the various issues and controversies surrounding Lyme Disease:

http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter?currentPage=all   

 NYT August 2013


 

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