BE YOUR OWN ADVOCATE
What tick-borne diseases teach
us is that we need to become
educated and to be our
own advocates with our health
The Centers for Disease Control (CDC) recently reported that there are an estimated
476,000
new cases of Lyme Disease in the US each year and up to 20%, or
95,200
people do not get better each year with the standard two to four weeks of antibiotic treatment.
There is a controversy surrounding Lyme disease and other tick-borne illnesses within the medical community that is causing many people with active infections to go undiagnosed, resulting in health issues that can become debilitating. It is hard to conceive - until you have lived it - that such a controversy exists around this common health problem. The issue starts with the Infectious Diseases Society of America (IDSA), which authors most of the medical guidelines followed by our doctors and hospitals within the United States. The IDSA does not recognize that Lyme disease can become a chronic infection; they put all of their trust in unreliable laboratory tests; they refuse to recognize many well-constructed scientific studies which prove that the bacteria causing Lyme disease can survive antibiotic therapy; and they fail to acknowledge the many other pathogens (bacterial, viral and parasitic) that a single tick bite may transmit.
Compounding the IDSA's ill-conceived guidelines relating to Lyme disease, the Centers For Disease Control (CDC) repeats much of what the IDSA says about Lyme disease which means that our local health departments - partially funded by the CDC and other Federal sources - simply repeat the same outdated information.
Marilyn's Story.
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"I was diagnosed with Fibromyalgia for 16 years before I found out that all of my symptoms were really caused by tick-borne diseases. When my symptoms first began, I went to several doctors looking for a cause. I found a rheumatologist that diagnosed me with Fibromyalgia and I was so happy to have a diagnosis. I thought my rheumatologist was the smartest man I had met, so when he kept telling me for years that I had Fibromyalgia, I believed him. What I didn't know was that he was very uneducated about Lyme disease and tick-borne illnesses. He was a staunch follower of the IDSA, but I didn't know anything about the controversy surrounding Lyme disease and I didn't know that my doctor was so close-minded when it came to Lyme disease.
Then, I had to take my dog to the vets for her yearly appointment and after examining my dog, my vet said, 'Your dog looks great, but what's the matter with you?' I had been going through a bad time with my Fibromyalgia and I told her I hurt from head to toe. My vet told me to get to someone who understands Lyme disease and I informed her that I had been tested for Lyme disease twice and I didn't have it. The vet insisted that I consider going to a doctor who understands tick-borne diseases, so I did. Turns out I had Lyme disease, Bartonella (another bacteria), Babesia duncani (a parasite), and Mycoplasma (another bacteria). I didn't test positive for Lyme disease until a year into my treatment, which turns out to be common for people who have had the infection for a long time. After two and a half years of treatment, I was completely symptom free.
I think back to the 16 years of being misdiagnosed and the ups and downs and pain, and I wonder how I didn't hear about the controversies surrounding Lyme disease. Now, I tell everyone who will listen."
We hear from many, many people who, like Marilyn in the story above, were misdiagnosed with other diseases or syndromes when they really had an active infection with tick-borne diseases. Also like the story above, when proper diagnosis and treatment occurs, symptoms usually disappear. Unfortunately, in some cases, it can take a few years and there may be some permanent damage.
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Since the bacteria which causes Lyme disease (called Borrelia burgdorferi) and several other tick-borne pathogens are intracellular - meaning they are able to get inside of our cells, including our red blood cells - symptoms of tick-borne diseases can be varied and affect all systems of the body. See a list of possible symptoms on our "Resources" page. How these pathogens affect each of us is dependent upon our own genetic make-up, our lifestyle, our pre-existing health issues, and other yet-to-be-determined components. Some people develop arthritic-type symptoms, including sore joints, fatigue, muscle pain and weakness. Other people develop severe neurological symptoms that can look like Multiple Sclerosis, Parkinsons, seizures, dementia and Alzheimers. And still others may have the onset of psychiatric problems as their only symptom, such as depression, anxiety, panic attacks, schizophrenia, anger issues, a change in personality, and suicidal ideology.
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A common denominator with these undiagnosed infections is a cyclic occurrence of symptoms (good days and bad days), as well as an ever-increasing list of complaints which develop over time. For example, a person infected with tick-borne diseases may feel more tired than normal and have sore knees. As the pathogens continue to reproduce and migrate throughout the body, that same person may develop headaches, sore neck muscles, an irregular heart rhythm, acidic stomach, irritable bowel, numbness in hands and feet, muscle twitches, anxiety and panic attacks, sleep issues, etc. With each new symptom, the undiagnosed person may seek help from several doctors and specialists, receive numerous tests, and may even have multiple surgeries seeking relief from their growing list of health issues.
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Complicating the issue is the fact that laboratory testing for many common tick-borne diseases is not 100% reliable. We think of blood tests as being "right or wrong", "positive or negative", "we have it" or "we don't have it". Period. Unfortunately, it isn't that simple. It turns out that laboratory testing is not as dependable as we would like it to be. There are several reasons why the tests we have today for Lyme disease and other pathogens may not be reliable. One important reason is that some of the tests are looking for antibodies, or our body's reaction to the pathogen. Studies have found that if we took an antibiotic or a steroid (such as prednisone) within a few months of having an antibody test, our immune system may be suppressed by the medication we took and may not develop a measurable amount of antibodies. So we could have a negative test result when we really have an active infection.
Another reason laboratory testing may not be reliable is that we may be looking for the DNA of the pathogen (called a PCR test) in the blood, but the sample that was taken may not have any DNA in it. These pathogens are very mobile and flow in and out of our bloodstream. One study on mice exemplifies this issue. The researchers infected the mice with Borrelia burgdorferi (the bacteria which causes Lyme disease) and then set out to find where the bacteria travelled in the body. They were only able to isolate the bacteria from the blood 13% of the time, yet that is where we commonly look for it in laboratory testing.
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There are many different strains of the different pathogens ticks transmit to humans and animals and laboratory tests are usually limited to a single strain. For example, a test for Lyme disease may only find Borrelia burgdorferi, but the person could be infected with Borrelia miyamotoi or Borrelia afzelii, which are rapidly spreading within the United States. A conventional test for Lyme disease may come back negative when the person is sick with a different type of Borrelia The same goes for the strain of Babesia which is most common in the Mid-Atlantic Region - Babesia duncani. Many doctors know to test for Babesia microti, but if the person is infected with Babesia duncani, the test may come back negative and the person may not receive a proper diagnosis and treatment.
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A doctor or medical practitioner who truly understands tick-borne diseases will often know how to clinically assess a patient to determine which tests to order. Most doctors only test for Lyme disease, Rocky Mountain Spotted Fever, Ehrlichia/Anaplasma, and some times, Babesia microti. Yet there are many more very common tick-borne pathogens which can cause disease in humans and animals. Failing to look for these other pathogens can lead to misdiagnosis and ill health.
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What tick-borne diseases teach us is that we really need to educate ourselves about what these different pathogens are, what symptoms they can cause us to suffer, where we can get help, and what we need to do to get better and return to good health. Ticks and the diseases they carry are only going to continue to develop with new ticks entering the United States and new pathogens being discovered. Prevention and knowledge is the key! Be sure to visit our "Resources" page for information to help you prevent tick bites and to help you expand your knowledge of tick-borne diseases so that you can Be Your Own Advocate with your health.
WHAT PATIENTS TEACH US
MyLymeData is the first large-scale study of chronic Lyme disease. This study is different from all other Lyme disease studies, because it is patient-powered BIG DATA research.
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MyLymeData allows patients to pool their data to determine which treatments work best. This research begins with the patients.
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Since November of 2015, it has entrolled over 12,000 participants and is currently among the top 5% of fully consented, opt-in patient registries in the nation. So what are the patients teaching us about Lyme disease?
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