Lyme Disease. "Healthy Fear"-the wise know when to have it. That would be now.

/

I am asking you to read this blog in its entirety.  Just this once.  Please.

A 14-year-old went to a park six years ago to play with friends. The next day she had flu-like symptoms.  After the flu-like symptoms dissipated she felt joint pain, had double vision, brain fog and extreme fatigue.  She went to doctors, she had blood tests. There is nothing wrong with her right?  Nine months later she was diagnosed with Lyme Disease. Only now she is way past early recognition of the disease. It’s too late to take 30 days of doxycycline and call it a day. Now the grinding battle with Lyme disease starts.  Make no mistake, it is a battle.  She is now 20 years old, fighting for her life with debilitating chronic Neuro Lyme disease. She is my friend Jenn's daughter. I see the battle daily through her.

 “We and the world, my children, will always be at war.  Retreat is impossible.  Arm yourselves.”

  -Leif Enger, Peace Like A River

My cousin now in her mid-sixties got Lyme disease in her forties.  “I was 40-something when I got the tick bite but it took 5.5 years to figure out what happened and why I felt so awful every day.  The big thing I remember is waking up in the morning and crying because I felt so bad and didn't know how I'd get through the day.  But I just kept pushing myself and I always did get through.”  She is an animal lover and her dog and cats depended on her.

She kept slogging through the Lyme.

While she has some success in reducing symptoms of Lyme, her journey continues to keep it at bay.  It is by being her own advocate and through her own vigilance that she is functioning well.

Let’s get real because this is some nasty stuff.  In a recent autopsy of a mummy from 5,300 years ago they found the same bacteria that is Lyme today. Borrelia burgdorferi.   Yep.  In the early 70’s in Lyme, Connecticut a bunch of children were suffering from some weird health issues.  That’s when it started to be noticed.

My focus is on awareness and prevention.  I was with my colleague this week traveling the Boston to BWI route again.  We stopped to eat in CT. I didn’t even want to get out of the car.  Seriously the idyllic lakes, beautiful trees, quaint towns were all around us and all I saw in my mind’s eye were ticks.    Probably because I was almost done writing this blog. I even googled how close we were to Lyme, CT. 

Here is what you need to know:

-Lyme is everywhere.  Everywhere there is a tick there is possible Lyme.  50% of all ticks now carry one or more of the Lyme disease bacteria.  50%.   In highly infectious areas like the North Eastern US 70% of ticks carry the bacteria.  It’s not just deer ticks, its ticks period.  Ticks hosts include deer, white tailed mice, squirrels, racoons, opossums, chipmunks, song birds, lizards and anything else from whom a tick can feed.  The hosts are legion.  So get the thought out of your head its only deer ticks.  It’s just a fact that deer ticks are very small and hard to see, so we miss them.

-Ticks are not just in Lyme, CT and the NE. They are everywhere.  In 60 countries in the world. In every state with the exception of Hawaii in the US.  Ticks can travel on birds, animals, dogs, people anything that can feed them and they do. 

This link below shows the map of county concentrations of Lyme. You will see most of it in the NE. That being said, Lyme is everywhere. In all 50 states.  That is a fact. Telling yourself otherwise would be untrue.  You are not safe unless you take precautions.  Below are the seriously dangerous areas.

 

But then again, we people in the south—we have the lone star tick.  Here is map from 2010. In fact, the SE has more species of Lyme than any other region. We have less cases, but more species. Like I said if you think it’s not everywhere think again.

New Research Finds More

Lyme Borrelia Species in

  the Southeastern U.S.

 than in Any Other Region

“Lyme Disease Doesn’t Exist in the South” Myth Crumbles

-There is conversation around reducing the deer population. Why?  The thought process is you get rid of the deer, you get rid of the ticks. Not true. You take away the ecosystem, they will come after your dog, your cat, the birds you like to watch at your feeder.  The more animal hosts we have in the ecosystem the less likely they are going to use you as a host.

-Two years ago, that would be 2014, the CDC said there were 30,000 cases per year of Lyme in the US. Guess what?  Now they say, gee sorry we underestimated it.  In fact, there are 300,000 cases per year in the US alone.  Really more like 327,000 per year.  That is 34 cases per hour, 822 cases per day, 5,770 cases per week, 25,000 cases per month.

-Lyme is the fastest growing VECTOR borne, infectious disease in the United States.  Let me define Vector—simply means Carrier disease.  Meaning there is a carrier, the tick. However, a recent study in Europe shows that Lyme is being transmitted through Mosquitos. Afraid yet?  I am.  Let’s rename afraid-and call it “healthy fear”.  Being aware and just a little bit afraid is a good thing.  Fearful and smart enough to use protection is the better part of wisdom.

-Fewer than 50% of people ever remember being bitten by a tick. 

-20% of the tick bites result in the known “bulls-eye” bite mark or rash. Less than 20%.  The other tick bites go undetected. The illness just starts. The war begins.

-Lyme mimics other diseases. By the time they find it, it has entered the central nervous system and is hard to control because frankly there is no cure for Lyme disease. MS, Lupus, Chronic Fatigue, Fibromyalgia, heart issues called Carditis-all could really in fact be Lyme.

-The current blood test Elisa and Western Blot, are from the CDC guidelines that doctors follow.  However, these test miss 35% of culture proven Lyme disease. 50% of people tested receive false negatives, when in fact the insidious disease is already propagating.   This is a major problem.

-Lyme is usually treatable soon after an infectious bite with at LEAST a month of antibiotics.  However, if not properly diagnosed it can become chronic.  Many patients are not thought to have Lyme; by the time they diagnose it—the person has really spiraled.

-Late symptoms of Lyme include disabling neurological manifestations like facial palsy, loss of cognitive abilities, sleep disturbances and heart abnormalities.

-Most cases of chronic Lyme require an extended course of antibiotic therapy to achieve symptomatic relief.  I am talking months of oral and/or intravenous antibiotics.  Unfortunately, the knowledge of Lyme by the mainstream medical community is so limited that many doctors do not recognize this.  Furthermore, the insurance companies will not pay for treatment beyond the basics because they don’t believe Lyme needs extensive treatment.  Really?   Wow.  Lyme takes months and years to put into remission in many cases.   This ignorant positon taken by Doctors and Insurance companies results in families that cannot afford treatment so their loved one gets sicker or they go broke trying.   Not a position I envy.

-Many times Lyme goes dormant once treated.  Relapses occur and retreatment is necessary.  There are no tests currently available to prove the organism is eradicated or that the patient is cured.

-It used to be thought a tick needed to be attached for 48 hours in order to transmit the Lyme bacteria to you.  That too has been “debunked” and now it’s a mere 15 minutes. Yes.  I said 15 minutes.

What is interesting is that more cases of Lyme are diagnosed per year than breast cancer in the US.  327,000 cases of Lyme and 246,660 cases of breast cancer. Breast cancer being one of the most highly funded and researched diseases that exist today.  Yet research money, doctor’s knowledge and insurance paying for the proper and needed treatment is almost virtually non-existent for Lyme. How does this happen in an industrialized nation such as ours?

This link below says it all. You must read it.   Hey, it’s just Lyme…at least it isn’t cancer.  There are no words.

This is a disservice to the Lyme community.  Many Lyme doctors are “underground” so to speak so they don’t lose their medical license trying to help people.   We call these “Lyme literate doctors”.

Let’s get to prevention.  In the case of Lyme my friends, Ignorance is not bliss.  Ignorance about Lyme disease and how it can affect a human being is just plain unacceptable.  I am telling you it is very serious illness so you have been forewarned if you read this blog.

 When you walk in the woods, or in tall grass wear long pants and high white socks. Tuck your pants into your socks.  This way you can see if a tick adheres to your clothing. Spray your clothing (before you put them on) with something like “Ben’s” Insect treatment.  It contains Permethrin.  Permethrin is a synthetic form of the naturally occurring insecticide, pyrethrum, which comes from Chrysanthemums. It repels ticks and mosquitos.  I have Mosquito Authority spray my yard every three weeks. They spray Permethrin –they tell me as well it is from the Chrysanthemum flower. Ever since Zika came to the US I have my yard sprayed. It also keeps ticks off of Effie and other animals.   Permethrin is the tick repellent the military uses and it is ONLY applied to your clothing. I am not saying it is "Safe".  I am saying it is the best tick repellent out there.

I went on a healthy fear based insecticide hunt the other weekend. I went to see my guy down at Do it yourself Pest Control.   We talked Permethrin. He told me the CDC in Atlanta buys it by the gallons and soaks the clothes in it prior to sending their people to countries that are tick and mosquito infested.  Please go out and buy some Ben’s and start using it prior to a woods outing. You spray it on your clothing and wait until it dries. (2-4 hours) Wear long pants, be smart about your life and mitigate your risks if at all possible.

 If you do find an engorged tick on you, if you are lucky enough to see It-Call your Doctor ASAP. Ask for 30 days of the antibiotic doxycycline. That should take care of it if in fact you were exposed.  Don’t take NO for an answer!  It’s when you don’t realize it and begin to get ill that it propagates itself and then you are at war. Many Doctors will say "let me know if you start feeling sick" by then it could be too late for the 30 day treatment.

Other relevant information you should consider.   Here is new data.

Lyme can be passed in Utero.   A mother can pass it to an unborn child.  They are currently studying whether it can be sexually transmitted.  Many children today that are ADD or ADHD may be that way as a result of undiagnosed Lyme disease.  Especially children who RAGE. Get a Lyme test.  Even if they are unreliable at least it’s a shot. Don’t miss your shot at treatment.   The suicide rate of Lyme patients is unknown but I have read numbers like 1 in 3 and 1 in 8.  It is very high.  It is the highest suicide rate of any disease.

If you have read this far you must open this link, they are facts and stories.  Life is told in stories and this will clarify any questions you may have left.

I want to end by sharing words from my friend Jenn whose daughter has Lyme.  She tells me that one of the biggest hurdles is not physical (seriously physical would be enough) but mental. Lyme is the illness that people don’t see and don’t recognize.  You don’t look sick.  You can look like a normal person, fake a smile and yet no one asks how you feel, no one asks if today is a good day or a bad one.  Lyme patients suffer in isolation. I believe that one of most hurtful things in life is to “not be seen” to “feel invisible”.  People suffering from chronic illness feel invisible they don’t want to burden others with their illness.  Lesson for all of us -If you know someone with a chronic illness, someone with Lyme disease ask how they are, show compassion and be kind.  What’s it going to take?  Five minutes of your day?  I know I am willing to step up.  Let’s do it together.