Category Archives: Lyme Disease

10 Surprising Facts About Lyme Disease

The CDC recently announced it estimates 300,000 cases of Lyme Disease are reported each year in the US. That is a ten-Lyme Disease fold increase over their estimates of just a few years back.  Advocacy work by patients and Lyme Disease support groups is one reason for the increase, as more and more people affected by Lyme Disease are insisting its devastating effects be recognized.

In my practice, I see a wide number of people with Lyme Disease. I never imagined needing to know much about Lyme Disease, but over 10% of my clients have a definitive diagnosis of Lyme Disease, and another 10% suspect they have it but remain undiagnosed. My own research through the years opened my eyes to some shocking facts about Lyme Disease. My goal is to use this post provide education about Lyme Disease that will empower others to make wise choices and seek the correct type of testing and care.

If you suspect you have Lyme Disease, please seek care from a Lyme Literate physician immediately. You can find a list of physicians with special training in Lyme Disease at the Lyme Disease Association Doctor Referral Center

Here are ten surprising facts about Lyme Disease:

  1. Lyme Disease does NOT always cause a “bull’s eye” rash:  The presence of a “bull’s eye” rash always means medical care should be sought immediately. Unfortunately, many people infected with Lyme Disease never develop the classic rash. Some have no skin reaction whatsoever, while others develop lesions or other skin issues which are often not recognized as Lyme Disease. In cases where no bull’s eye rash develops, diagnosis must be confirmed via testing (more on that below) and symptoms. If you become symptomatic, please don’t assume you do not have Lyme Disease simply because you never developed (or saw) a bull’s eye rash. Seek medical care.
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  2. Deer ticks are not the only animal/insect capable of transmitting Lyme Disease:  Multiple other species of insects and even mammals have been identified as carriers capable of transmitting Lyme Disease. Other organisms capable of transmitting Lyme Disease include other species of ticks, some varieties of fleas and flies, and even a few mammals. The belief that only one type of tick can transmit Lyme Disease is comforting, but false.
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  3. Lyme Disease is not limited to a few parts of the US, it’s everywhere:  The CDC insists that people who live in or travel to the northeast region of the US are the only ones at risk for Lyme Disease. Lyme Disease diagnoses exist in every US state, including Hawaii. Most people diagnosed with Lyme Disease who live outside of the northeast region have not traveled to the northeast when they contract Lyme Disease. Geographical location is not a limiting factor in contracting Lyme Disease, although the odds of becoming infected are higher in the northeast region of the US. Lyme Disease exists on every continent except Antarctica.
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  4. The best tests for Lyme Disease are often wrong:  Unfortunately, the best tests we have for the Lyme Disease bacterium are not always correct. Some experts estimate the tests are wrong 50% of the time. This makes it difficult to know for certain if someone should be treated. The common tests include the Western Blot and the ELISA (IgG/IgA) tests. These tests check for antibodies the body creates to fight the Lyme bacterium. Unfortunately, some people’s bodies do not produce many antibodies (due to weak immune systems), causing a negative result even if they are very ill and have high levels of Lyme bacteria in their system.
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    Other tests often used to test for Lyme Disease include the CD-57, Polymerase Chain Reaction (PCR), Immunofluorescent Assay (IFA), and a relatively new test deveoped by Dr. Joseph Burrascano that cultures Lyme bacteria and measures their growth. A major drawback to all of these tests is that it can take 4-6 weeks before results are available. That’s a long time to wait when someone is miserably ill. (Most Lyme Literate MDs start treatment based on symptoms and wait on test results merely to confirm.) For best accuracy, Lyme Literate MDs will usually run a combination of Lyme Disease tests instead of only running a single test. The IGeneX Profile, which consists of 4-6 different tests, is considered the best option. It is an accurate and viable panel.
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  5. The average patient with untreated Lyme Disease suffers more than three years before getting a correct diagnosis:  This is because the symptoms of Lyme Disease vary greatly, testing is inaccurate and unreliable, and most doctors have not received adequate training on how to spot Lyme Disease and how to treat it. Change is occurring, but it’s a slow process. In the meantime, many Lyme patients wind up on disability because their physical symptoms are so severe. It is also very common for people infected with undiagnosed Lyme Disease to be referred for psychological treatment because the medical community believes their illness is imagined. As more doctors become aware of Lyme Disease, hopefully the time required for diagnosis will dramatically decrease. Many patient advocacy groups are working to create greater awareness in the public and the medical community.
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  6. Symptoms of Lyme Disease are incredibly varied:  The symptoms of Lyme Disease are so varied Lyme is often misdiagnosed as other illnesses, including Multiple Sclerosis, Fibromyalgia and even Amyotrophic Lateral Sclerosis. Symptoms can include, but are not limited to:  neck stiffness or pain; fatigue; skin lesions – with or without the classic bull’s eye rash; joint aches that sometimes worsen to the point of causing disability; jaw discomfort; cognitive impairment; swollen glands; vision problems; tremors – some severe; headaches; blood pressure fluctuations; digestive issues; and more. The Lyme bacteria customize their attack to the person’s weaknesses, so symptoms manifest many different ways.
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  7. If caught early, Lyme Disease is relatively easy to eliminate, but may still require long-term antibiotic treatment:  I am strongly opposed to the over-use of antibiotics, but feel very strongly that antibiotics are a necessity in the treatment of Lyme Disease. The traditional treatment of two weeks of Doxycycline is rarely enough. Physicians who are familiar with Lyme Disease will typically recommend a regimen of low-dose, long-term antibiotics which are rotated every few months to prevent the Lyme bacteria from developing resistance. Treatment may last anywhere from six months to two years. Yes, that’s a long time to be on antibiotics, but the benefits of launching an early and prolonged attack on the Lyme bacteria is worth any temporary effects from antibiotics. (Ongoing countermeasures are usually used alongside the antibiotics to prevent negative consequences.) There are also natural techniques which can be used to combat the Lyme bacteria, which can be used alongside antibiotics if desired.
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  8. If allowed to continue untreated, Lyme Disease can be very difficult to eliminate:  If Lyme Disease is allowed to proliferate without any form of restraint, the bacteria will multiply rapidly and will potentially invade every body system. They increase in number and strength, making treatment more difficult. During this time, the person with Lyme suffers increasingly worse symptoms. The Lyme bacteria have a tendency to protect themselves with a complex wall of protection called a “biofilm,” so approaches to addressing Lyme Disease also need to include a protocol used to eliminate biofilms.
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  9. Tick-borne Lyme Disease requires a tick to be attached for a minimum of 24 hours, but other forms of Lyme Disease can be transmitted in a much shorter time span:  The CDC insists a tick must be attached for 36 hours before Lyme Disease can be transmitted, but multiple studies proved this belief is false. It often takes far less time for the bacteria to be transmitted. Some of the bacteria associated with Lyme Disease are known to be transmitted in less than a minute by infected fleas or flies. This doesn’t mean we all need to be fearful of Lyme Disease, it simply means we need to remain aware and to act quickly if we suspect an infection.
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  10. Although true Lyme Disease is one bacteria, there are multiple others associated with Lyme Disease: Borrelia burgdorferi is the bacteria associated with true Lyme Disease. There are multiple others often transmitted by infected ticks (and other insects) which are also now thought to be part of Lyme Disease. When discussing Lyme Disease, you’ll often hear a reference to the “3 B’s” of Lyme. This references the three most common bacteria found in Lyme infections. The bacteria include Borrelia, Babesia and Bartonella. These bacteria frequently occur together instead of individually. Treatment for each is very similar.

If you suspect Lyme Disease may be the cause of your health concerns, please contact a Lyme Literate MD immediately. Education is key!

Have you been affected by Lyme Disease? Please share your story in the comments as an encouragement and inspiration to others!

 

References:  

CDC Press Release, August 19, 2013

Lyme Disease, Laura Torrentera

Ten Facts About Lyme Disease, LymeLight Foundation