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Lyme Disease

Frequently Asked Questions

What is Lyme disease?
What are the Lyme wars about?
Why is the standardized testing for Lyme not always reliable?
What are the possible symptoms of Lyme?
In what states does Lyme disease occur?
Why do Lyme patients need a Lyme literate doctor, and how do they find one?

This information is provided to help you in your understanding of Lyme. It comes from my extensive research and personal experience with the disease. But I am not a doctor. If you think you or someone you know has Lyme, please seek out a Lyme literate doctor.

What is Lyme disease?

Lyme disease is caused by the spiral-shaped bacterium (or spirochete) Borrelia burgdorferi. It is the number one vector-borne illness in the U.S. Humans are infected with Lyme primarily through the bite of a tick carrying the disease. Some of the many possible symptoms are fatigue, muscle weakness, joint pain and inability to concentrate (brain fog). Some patients will see the erythema migrans (or E.M.) skin rash that sometimes, but not always, looks like a bulls-eye. If the E.M. rash is present, it is a strong indicator of Lyme. But absence of the rash does not preclude Lyme, as many patients never see a rash at all. Lyme can affect every system in the body, due to the spirochetes’ ability to burrow deeply into tissue of the joints, heart, and nervous system.

According to the CDC, Lyme is diagnosed through a clinical diagnosis, meaning a thorough examination of the overall picture of how the patient presents—results of testing, symptoms, and possibility of exposure to infected ticks. Therefore a negative test result does not necessarily rule out Lyme. Because of the changeable nature of Borrelia, there are inherent problems with testing for presence of the spirochete, and results sometimes can show up as a false negative.

If caught soon, Lyme is usually easily treated with a few weeks of antibiotics. Unfortunately, many cases are not caught soon enough. Given time the spirochetes burrow deep into body tissue and become difficult to kill through antibiotics. Longer regimens of treatment will then be required. (There are also homeopathic protocols to treat Lyme.)

What are the Lyme wars about?

The so-called “Lyme wars” are being fought over these critical issues: (1) testing for the disease, (2) diagnosis, (3) treatment, and (4) education for doctors in general about Lyme.

The Lyme wars go back a number of decades. It’s a complex war with complex arguments, but simplified it comes down to these two sides: Lyme-literate doctors—working in the trenches with very sick patients— who believe long-term antibiotic treatment for Lyme is often necessary, vs. doctors aligned with such powerful entities as the Centers for Disease Control (CDC) and the Infectious Diseases Society of America (IDSA) who insist that two to four weeks of antibiotics kills all Borrelia in the body, therefore eradicating the disease. The problem is, many patients remain sick after such treatment. This latter group of doctors contend that such patients, regardless of their continuing symptoms, no longer have Lyme. Instead, these doctors say, they suffer from a post-Lyme treatment syndrome—some form of autoimmune disease as yet unknown and undefined. This “syndrome” should only be treated symptomatically, and not with antibiotics.

Unfortunately, Lyme patients caught in these medical wars often suffer from an ironic and heart-wrenching “double whammy.” Early detection of the disease—through proper testing and diagnosis—makes for much easier treatment—typically the two to four weeks of antibiotics recommended by the CDC. But many patients fail to be diagnosed early due to unreliable testing and doctors’ lack of understanding about the disease. These patients often go from doctor to doctor for months, even years, before they’re finally diagnosed with Lyme. But by then they’ll likely require antibiotic treatment for a much longer time than the CDC recommends. And many doctors will deny them that treatment.

Why is the standardized testing for Lyme not always reliable?

First, no test for Lyme is 100% reliable. Borrelia are a very wily foe. They can change their outer protein coat, making them invisible to the body’s immune system, and therefore invisible to tests (since tests look for antibodies to the spirochete).

The CDC criteria for administering and interpreting tests have been controversial since they were approved in 1994. First the CDC insists on a two-tier form of testing, starting with the ELISA test, then proceeding to the western blot only when the ELISA is positive. Unfortunately all too often a negative ELISA is a false negative because of the test’s poor sensitivity. (Although the CDC insists the test is sensitive.) So many patients are lost in this first stage.

Those who do test positive move on to the western blot, which looks for antibodies to Borrelia burgdorferi in the blood that reveal themselves in the form of stripes or “bands.” Each band refers to a certain type of antibody and is indicated on the test results by a given number. Even when the test for Lyme was first developed many doctors protested the inclusion and exclusion of certain bands. One of the biggest arguments was over band 31—an antibody to a protein on Borrelia’s outer surface called OspA that is highly indicative of Lyme. Yet this band was not included as a positive indicator on the test, while other bands that were less important were included. In order to test positive for Lyme, a patient must see a certain number of the included bands indicate positive. Many patients fall short of that required number of positive bands, often due to the fact that Lyme-specific bands that should have been included as significant were not. Overall, as a result of these controversial criteria, patients can see “negative” false results as much as thirty to forty percent of the time.

To counteract the CDC’s ineffective criteria for testing, labs such as IGeneX in Palo Alto, California and others have designed their own criteria that include the bands that the CDC’s criteria do not. (IGeneX tests also search for more than one strain of Borrelia, while the most common test kit in other labs looks for only one strain—B31, the original strain found on Long Island.) Lyme-literate doctors often send blood to these types of labs. Meanwhile the CDC and medical community at large do not recognize results from such labs as legitimate.

What are the possible symptoms of Lyme?

The possible symptoms list is long. Since Lyme can attack any system in the body, each patient may present very differently. Here are some of the possible symptoms:

Persistent swollen glands
Sore throat
Sore soles or “burning” feet
Joint pain or swelling
Back pain
Joint stiffness 
Muscle pain or weakness 
Muscle twitching 
Mental confusion
Difficulty with concentration or memory
Difficulty with speaking or reading
Mood swings
irritability, depression, or panic attacks
Tremors or seizures
Light or sound sensitivity
Blurred vision
Ear hum or loss of hearing
Vertigo or poor balance
Dire need to sit or lie down
Tingling, numbness, or burning
Facial paralysis-Bell's Palsy
Dental pain
Neck pain
Extreme fatigue
Trouble sleeping
Excessive need to sleep
Unexplained change in weight
Bladder dysfunction
Stomach problems
Heart palpitations
Sore chest wall
Night sweats
Symptom flares every four weeks

For a complete list of possible symptoms, see this in depth medical abstract by Dr. Joseph Burrascano. The list begins on page 9.

In what states does Lyme disease occur?

According to the CDC Lyme has been verified in all fifty states. Some states have a much higher number of cases than others. These include Connecticut, Delaware, Louisiana, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, and Wisconsin. California also has a significant number of cases.

However, these numbers are low. There’s no doubt that many cases of Lyme go unconfirmed. This is due to such issues as undiagnosed patients; doctors’ failure to report cases; and the stringent, narrowly-focused requirements the CDC insists upon in order to deem a patient sick with Lyme. In August 2013 the CDC issued a press release indicating that the number of Lyme cases is estimated to be ten times higher than reported.

Why do Lyme patients need a Lyme literate doctor, and how do they find one?

Sadly, doctors across the country have been misinformed about Lyme. Old myths still circulate. Some of these are: (1) A patient has to have the E.M. rash to have Lyme, (2) A patient must show a positive test result, (3) A patient must live in a state known to have higher cases of Lyme. Regarding point #3, there have been cases of patients with obvious Lyme symptoms and even positive test results who were told they couldn’t have Lyme because it “doesn’t exist in this state.” Other times doctors refuse to test for Lyme at all, citing the “fact” that it doesn’t occur in the area.

The lack of understanding about Lyme leads to that “double whammy” discussed above. First, Lyme patients are often denied a diagnosis because of ineffective testing and poorly educated doctors. Then, when they get worse as a result, they’re denied the treatment needed to halt the disease.

Often patients don’t just go undiagnosed—they are misdiagnosed with such illnesses as Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Parkinson’s, Rheumatoid Arthritis, even Lou Gehrig’s disease. Either that or the patient’s symptoms are just “all in their head.” (Which some doctors have been known to claim.) The problem with misdiagnosis isn’t just the lack of right treatment, but the introduction of wrong treatment. For example, CFS patients are often given steroids to combat their swollen, painful joints. But steroids suppress the immune system and therefore are never given when a doctor knows a patient has an active infection of any kind. Bacteria are left to thrive in an immune-suppressed body. The Lyme patient invariably gets worse.

Lyme literate doctors—those who have really studied the disease and work with very sick patients on a daily basis—are all too few in number, but they can be found across the country. These doctors use more reliable testing and will treat with long term antibiotics, if they deem that is required. Others treat with homeopathic methods. If you think you have Lyme, finding a Lyme literate doctor is critical. See Helpful Links for how to find a doctor.

Helpful Links

Finding a Lyme Literate Doctor

http://lymediseaseassociation.org – Click on “Dr. Referral”
http://lyme.net – Click on “Flash Discussion” then “Seeking a Doctor”
http://tbdalliance.org – Hover over "Treatment," then click on "Find a Medical Professional"

Advanced Topics in Lyme Disease by Dr. Joseph J. Burrascano: an in depth medical abstract about symptoms and treatment

Under Our Skin, an award-winning documentary that follows the stories of numerous Lyme patients and includes interviews with doctors on both sides of the Lyme wars

Cure Unknown by Pamela Weintraub. A highly researched look into the Lyme wars

Web sites and organizations

This is in no way a complete list, but these organizations will provide you with much helpful information.

Lyme Disease Association 
International Lyme and Associated Diseases Society (ILADS)
Lyme Disease Network 
The Lyme Disease Foundation 
Canadian Lyme Disease Foundation
California Lyme Disease Association (lymedisease.org)
Lyme Disease Research Database 
Lyme Research Alliance