People with Chronic Lyme don’t want people they love – or anyone else –  to get Lyme and that is why I’m writing this post.  I would like you to know all the things I didn’t know, to protect you from this horrible and preventable disease.

I have been a reluctant member of the Lyme community for the past 13 months and have learned far more about this disease than I ever thought I would know.  Lyme Disease is a bacterial infection caused by the Borrelia Burgdorferi bacteria and is usually transmitted by the bite of an infected tick. When caught early it is highly treatable, if it isn’t people can become severely ill and it can even result in death in the most serious cases.

Like Lyme Disease itself, the topic of prevention is far more complex than you might imagine. Lyme Disease is one of the most misunderstood diseases of our time and what makes it exponentially more complicated is that it is embroiled in a furious battle of politics which has left an unimaginable wake of suffering patients in its path (including me) with the politics directly causing a rapid raise in the numbers of children and adults with Chronic Lyme in the US and spreading around the world.  You don’t need me to tell you that mixing politics with medicine is a recipe for disaster. Trust me, though I have met incredibly courageous and compassionate people in the Lyme community, it is a community you do not want to join – ever.

If you haven’t ready my story, I contracted Lyme from three tick bites on a camping trip. I was misdiagnosed on my first trip into the doctor’s office and then under-treated on my second visit and then over the course of a year developed a number of mysterious symptoms. By sheer good luck I consulted a Naturopath who happens to be one of the experts in treating Lyme in my state who caught my case before it got even worse. Many others aren’t so lucky.  You can read my story here.

The Ixodes Scapularis or deer tick is very small and hard to see especially when it is in the nymph phase in the spring when it is the size of a poppyseed. The bite is painless. Fewer than 50% of patients who culture positive for Lyme recall being bit by a tick. There is evidence that ticks can transmit Borrelia when attached for less than 24 hours especially during the nymph phase. (I did not see the tick(s) that bit me but instead noticed a series of 3 bites on the back of my shoulder when I developed a purple rash as a reaction to the tick saliva).

From my perspective there are two critical levels of prevention.  Obviously the best thing is primary prevention by avoiding a tick bite – read how here. But because it is impossible to prevent all bites, it is critically important to make sure people are treated properly as soon as possible to prevent acute Lyme from becoming  Chronic Lyme which can be physically, mentally and financially debilitating.  (Search Lyme Disease in You Tube – here’s Daryl Hall’s story for starters –  and you will quickly see how devastating this illness can be.)

What you need to know to protect yourself:

First, be aware that you might need to know more than your doctor. The average patient sees 5 doctors over 2 years before getting a diagnosis and 40% end up with long-term health problems.

The commonly used ELISA and Western Blot diagnostic tests, which measure your body’s production of antibodies not the bacteria itself, misses 44 out of 100 cases of Lyme. Why? Partly because the tests are not sensitive enough, partly because they weren’t created from enough strains of Borrelia and partly because Lyme can shut down your immune response stopping you from creating antibodies in the first place.

This is called a Erythema Migrans rash. If you get this especially after a known tick bite it is a de facto diagnosis of Lyme and you should be treated. However, fewer than 50% of people will develop an EM rash

Lyme often starts out with deep flu-like symptoms including fever, headache, joint aches, fatigue, nausea and chills. In my case I avoided the early symptoms due to the short-course of antibiotics and instead over time had soaking night sweats, increasing memory-loss, burning/tingling in my toes & fingers and trouble with word recall. The symptoms vary because people’s immune systems vary and the bacteria will migrate to all systems in the body and especially likes to live in the brain, joints, heart and nervous system. Here’s a checklist of Lyme symptoms.

Like it’s cousin Syphilis, Lyme disease is known as the great imitator and can look similar to MS, ALS, chronic fatigue, ADHD, Aspergers Syndrome, etc. Classic Lyme symptoms are pain that migrates around the body and symptoms that change over time. If you are having symptoms that look like Lyme and are getting shuttled from doctor to doctor with no answers, get thyself to a Lyme literate doctor pronto who has enough training and clinical experience to truly evaluate whether you have Lyme or not. You can find a doctor here.  It is strongly recommended that you have your labs done by IGENEX and if you haven’t recently been on antibiotics a urine PCR test can be a great diagnostic tool.  (That is how my Lyme was diagnosed.)  Essentially one challenges the body with antibiotics and if you pee out Lyme, you have Lyme.

There is great controversy about what the length of treatment should be for Lyme Disease. Short-term antibiotics fail 25-50% of the time depending on how long the person has been ill and the strength of his/her immune system. I had antibiotics for 2-weeks and had no idea it was possible for them to fail.  It is critical to know this.  It is interesting to note that for acute Lyme, people are generally prescribed 2-3 weeks of antibiotics while dogs are given 4 weeks. I was given two weeks of Amoxicillian about 3-weeks after my bite.  Also if you have pre-existing autoimmune diseases or other immune system issues it is likely you will need a longer course of antibiotics than someone with a healthy immune system.

Lyme is not the only infection you can get from ticks. Babesia and Bartonella cases are rising even faster than the rate of Lyme and are even harder to diagnosis due to lack of good testing. In fact Babesia is showing up in the blood supply and there is currently no way to keep it out.

There is increasing evidence that you can contract Lyme in other ways besides tick bites. They know for sure that it can be passed in breast milk and in utero. It has been found in mosquitoes. There is a question about whether it can be passed by sexual transmission.  There is little doubt it is spreading around the globe as people and animals travel from place to place.

What I wish I could do differently – I wish I had advocated more firmly for myself when I first noticed the bite marks with the purple rash right after my camping trip. I knew 100% for sure that it wasn’t a mosquito or black fly bite. And looking back, what harm would 2-3 weeks of antibiotics have done prophylactically.   It could have saved me from nearly 2 years of suffering and thousands of dollars in medical bills. I understand it is a bad thing to overuse antibiotics but in this case when looking at the cost vs. benefits erring on the side of caution seems the humane thing to do.

To understand more about the politics and controversy of this disease as well as the debilitating effects on misdiagnosed and under-treated patients I highly recommend  Under our Skin on Netflix or Hulu as well as this must watch video by Dr. Joseph Jemsek below.  Also, if you need more info about Lyme, here is my Lyme Resources Page.  And, here is Amy Tan’s article on the same topic as this one though probably more artfully written.  But this is the composting words blog and I get to have my version.  🙂