It's Imperative To Treat Immediately

Lyme is a complex disease that can be devastating. Though most in New England have heard of Lyme Disease, few seem to be aware of it's debilitating potential. I had been diagnosed with Lyme 1 1/2 years prior to learning that people die from Lyme Disease. It was only when I began noticing heart flutters that I was informed. We really need to be informed.

We're told that Lyme is hard to catch and easy to cure. Neither of these is true. A study of 14 New England towns in 2008 showed that 60% of the tick population carried the spirochete that causes Lyme Disease. Prevention is of utmost importance to protect yourself from the risk of serious permanent damage to your heart, your nervous system, your brain, your joints and more. There are two aspects to prevention: avoiding a tick bite and halting the spread of the disease if you've been bitten.

Because most people know to avoid being bitten in the first place, the one thing I usually try to impress upon people regarding Lyme disease is the importance of demanding a prophylactic course of antibiotics if you know you have been bitten by a tick.

Before going further, I will tell you that I did not take any antibiotics for over 15 years prior to being diagnosed with Lyme Disease. My 9 year old daughter has never had antibiotics. So, for those who know me, it is unfathomable that I am not only suggesting, but insisting that people take antibiotics. Now, let's continue.

Don't wait for tests. Don't wait for a rash. Don't let your doctor talk you out of it. Too many doctors do not understand the risks of delaying treatment. Those risks far outweigh any concerns about taking a course of antibiotics.

Why not wait for tests? The short answer is that the existing tests are simply too flawed. For the longer explanation, I'll try to avoid getting too technical, so bear with me.

1. Many doctors will claim that a patient can only be diagnosed with Lyme Disease if said patient has positive results from a two-tiered laboratory testing protocol. They might even cite this as the CDC standard. However, the CDC has repeatedly stated that the standard they use for epidemiological purposes is not meant to be applied in a "real world" setting:
   

   Reporting of all nationally notifiable diseases, including Lyme disease, is based on standard surveillance case definitions developed by the Council of State and Territorial Epidemiologists (CSTE)and CDC. The usefulness of public health surveillance data depends on its uniformity, simplicity, and timeliness. Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement.

   But the idea of simplicity and timeliness is too tempting for the insurance industry and many doctors, so they insist that this protocol is the only one valid for making a diagnosis. I suppose this would be fine if the tests were reliable.
   
   
2. The initial screening test for Lyme, used quite universally, is called the ELISA. The ELISA is known to be inaccurate up to 55% of the time.(1) That is, it only correctly determines whether Lyme antibodies are present 45% of the time. At least 35% of the patients told that they do not have Lyme Disease because their ELISA test came back negative, actually do have Lyme Disease. This is called a false negative. That is to say, that the ELISA will miss over 1/3 of the cases.
   
   Additionally, our bodies do not produce enough antibodies to register on an ELISA screen for up to eight weeks after the onset of infection. So, to be sure that you have the best chance of an accurate test you must wait 8 weeks.
   
   
3. If you've been infected and you wait 8 weeks to be tested and then another week or two for results, you can experience some very serious symptoms.
   

   If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2^nd or 3^rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain). The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling.

   When Lyme disease first affects the nervous system, one may see symptoms of meningitis, encephalitis, or cranial neuritis.

   Trust me, you do not want to wait for tests.
   

Why be concerned if you don't get a rash? Well, this one is simple. The well-known rash only occurs in up to 50% of people with Lyme. Or, 50% of the patients never develop a rash. Clearly, the lack of a rash cannot rule out Lyme Disease.

What happens if you delay treatment? Lyme is a disease that is best attacked early. If treated early, 95% of patients respond to antibiotic treatment. The other 5% are considered cases of "treatment failure." Treatment failure rates increase to 62% or higher as the length of time before treatment begins expands. Delayed or inadequate treatment can lead to serious chronic problems with your brain, your heart, your joints, your nervous system and more.

As someone who is now living with Dysautonomia (my body no longer properly regulates my heart rate, my breathing, my digestion, my body temperature, etc.) and Chronic Inflammatory Demyelinating Polyradiculoneuropathy, or CIDP, (similar to MS, but the nerve damage is occurring outside of the brain), I can heartily attest that the risks of going untreated far outweigh the risks of a few weeks of antibiotics.

If you know you've been bitten by a tick, don't wait. Demand a prophylactic course of 4 weeks of doxycycline (amoxicillin for children under 8.) It can save your life.


Disclaimer: I am not a doctor. I am not, nor will I ever likely, play a doctor on TV. I'm simply a layperson who has had to learn a lot in order to advocate for her own health. Please do your own research and talk to doctors whom you feel are respecting you as a patient and fellow sentient being in order to make the most informed decisions for yourself or your loved ones.

(1) Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State laboratory of hygiene/College of American Pathologists proficiency testing program. J Clin Microbiol 1997; 35: 537-543.

Welome to BostonLyme

Welcome to BostonLyme. My name is Allison and I live with some very debilitating effects of having contracted Lyme Disease and gone for years without a diagnosis. I live in Boston. Lyme Disease is not a rural or suburban disease. It is everywhere. Yet, when I seek out resources such as caregivers and support groups, I must travel outside of the city. Hence, this effort to engage our urban neighbors. We need to protect ourselves, too. So, Boston, let's educate ourselves!

When I became sick and went to the doctors to find out what was wrong, I had no idea of the difficult journey ahead of me. A journey that includes fighting to get testing, fighting to get acknowledged even after a definitively positive test, and a continuing fight to get needed treatment. As my health declines, my experience has been witnessed by friends and loved ones. At first we thought my case must be an abberation. Eventually, it became evident that tens of thousands of people have the same story. We are so shocked by what we've seen that we're determined to educate others.

We are sponsoring a panel discussion and information-sharing reception after the August 9th showing of Under Our Skin at the MFA. Please join us to discuss how to prevent Lyme Disease, get treatment if you've been bitten, recognize the signs if you are mysteriously ill, and how to support legislation to protect doctors and fund research.

In the posts that follow, I will share news about the details of our Lyme awareness event, along with my experiences and what I've learned about Lyme and our health care industry. Please post questions, information you'd like to share and/or your stories in the comments.

It is my hope to not only have a successful event on August 9th, but to create a venue for ongoing information and support for those in Boston suffering from or caring for someone with Lyme. So, please join us.