You have heard, and will hear, it time and time again: “Lyme disease is cured with a few weeks of antibiotics.” If this is the case, why are hundreds of thousands –if not more- suffering for years on end from the disease? According to the CDC, they are not, because chronic Lyme disease does not exist:
“Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme Disease Syndrome. ”
For people suffering from Chronic Lyme, this statement is infuriating because they feel they are being told they are crazy; and also because pain, fatigue, and joint/muscle aches are often the least of their worries. Much more serious health complications arise from Lyme, and it is important that the public is aware of these symptoms. When looking at the bigger picture, the infuriating part is just how dangerous this statement is. If left untreated, Lyme disease can and will be fatal. That is the sad and often ignored truth.
Furthermore, it is estimated that only one out of every ten cases of Lyme disease is actually reported and that numerous individuals are misdiagnosed. In 2010 alone, state health departments reported 22,561 confirmed cases of Lyme disease and 7,597 probable cases to the Centers for Disease Control and Prevention. The actual number is believed to be much higher than the yearly number of cases reported. One reason for this is due to the fact that reporting criteria varies from state to state; and most states take time to report only the minimum amount required. Still, the number of reported cases has increased 25-fold since national surveillance began in 1982 .
Of course it is three years later, but unfortunately 2010 is the most recent year researched. So if the number of reported Lyme cases was only continuing to increase at that time, and since there has been no evidence of a decrease in cases, it can only be assumed that the number of people with Lyme disease is appallingly higher at the present moment. There are so many angles to touch on this topic, so let’s start with the very basics because there are many, many people who do not so much as know what Lyme disease is, much less how you contract it.
What is Lyme disease?
- According to ‘Wikipedia’, “Lyme disease, Lyme borreliosis is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia .”
- In lay terms, Lyme disease is an infection from a tick bite.
- Eloquently put by ‘Tired of Lyme’, “the non-technical term is what can truly depict Lyme disease best. It involves aspects ranging from every angle of the lives of those affected including physical, mental and social. ”
- Bulls-eye rash is a definite positive of Lyme disease. However, only 50% of people with Lyme disease recall having a bulls-eye rash. The rash can also appear in bruise form depending on a person’s pigmentation. For example, a bruise that is blue/black on the outside, with a lighter color circle in the middle is a clear indication of Lyme disease. If you get to the doctor while you still have the rash, you have a better shot of getting treated right away and not having to deal with Chronic Lyme disease. As I will discuss later, testing is not always accurate, so getting to the doctor when you notice a bulls-eye rash is imperative.
- Flu-like symptoms
- Muscle and joint aches/pain
The above symptoms describe the typical initial onset of Lyme disease. But what if you, or someone you know, miss the crucial time period in which those are the only symptoms? Unfortunately, there are over thirty other symptoms, each of which can mimic other diseases. This along with the fact that standard testing is only 30% percent accurate is why it is of the upmost importance for the public to be informed on, at the bare minimum, the basic truths behind Lyme disease.
- Low grade fevers, “hot flashes” or chills
- Night sweat
- Sore throat
- Swollen glands
- Stiff neck
- Migrating arthralgia’s, stiffness and frank arthritis
- Chest pain and palpitations
- Abdominal pain, nausea
- Sleep disturbance
- Poor concentration and memory loss
- Irritability and mood swings
- Back pain
- Blurred vision and eye pain
- Jaw pain
- Testicular/pelvic pain
- Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)
- Head aches
- Mysterious migrating symptoms that seem to come and go
A few blood tests are available for Lyme disease, but none are 100% accurate. The standard test is called an ELISA test. Oddly enough though, the ELISA is not based on the specific Lyme bacteria strain that is most beneficial for diagnostic testing. Therefor, the ELISA has a mere 30% accuracy rate. A negative reading can be meaningless, because false negatives are more common than not. A false positive is basically unheard of, so if you are lucky enough to test positive in the early stages it is a clear indication that you have the infection and need to start treatment right away. I use the term “lucky” here not because you are lucky if you have Lyme, but because you are lucky if you have Lyme and test positive early on. For many, it takes one pain-staking year after another before they are so much as introduced to the idea that they may possibly have Lyme disease. Another available, yet less administered, Lyme test is the Western Blot. While this test is slightly more reliable than the ELISA test, it is still faulty.
Doctors should not rely on test results alone to make a Lyme diagnosis because to date, a reliable test for the diagnosis of Lyme disease ceases to exist. Lyme doctors make a diagnosis based on a patient’s symptoms, medical history, and exposure to ticks –although that last one is not required, since ticks know no boundaries. Contrary to the popular statement that ticks are prevalent only in certain areas, the truth is you can walk outside your own front door and get bit.
If it all possible, it is best to get to a Lyme literate doctor if you believe you may have Lyme disease. This too also proves to be a difficult task, as many do not publicize that they specialize in Lyme disease due to legal reasons. To receive a list of Lyme literate practioners closest to you, email the ‘Tick Borne Disease Alliance’ at firstname.lastname@example.org.