Top 14 Myths and Misconceptions about Lyme Disease

1. Lyme Disease is Difficult to Get and Easy to Treat

There is nothing difficult to catch about this disease. Anyone living in heavily populated tick country (northeast and upper Midwest) or anyone with a love for outdoors knows how easy it is to pick up ticks during this season. When treated early further complications of the disease can be avoided. However, once it has been allowed to proliferate through the body it can take months or even years to recover. Treatment can also be very expensive, so getting better often relies on what a patient is able to afford. Costs can range from a few hundred dollars to tens of thousands of dollars a month and are not always covered by insurance. Coverage is often denied by insurance companies, citing the guidelines for the diagnosis and treatment of Lyme written by the Infectious Diseases Society of America (IDSA) as proof that long-term treatment is unnecessary and/or experimental.  In addition, the combination of medications needed to combat Lyme Disease and prevent it from morphing into a cyst form is more intricate than the standard treatment.

 

2. A tick must be attached for a certain period of time for disease transmission to occur

This is a hotly debated issue as some experts say it needs to be at least 24 hours or more and others say there is no set time. Couple this with the fact that many individuals either don’t remember how long the tick was on them or simply never saw one at all and it only further makes figuring out how long a tick has to have blood to blood contact before transmitting disease that much more difficult. One fact that is known for sure is that the longer a tick is on you the higher your risk for infection becomes.

 

 

3. Everyone with Lyme gets a Bulls-Eye Rash

Often thought of as the most definitive early symptom of Lyme Disease, the Bull’s-Eye rash is not as common as people think it is. Experts suggest that the rash is seen in as little as 30% of cases, with rashes also going unnoticed due to body hair and unusual placement on the body.  The deer ticks most commonly known for transmitting the disease are often the size of a pin head! Impossible to find these in your hair (or many places) unless they are already engorged with your blood and actively transmitting infection.

 

4. Lyme Disease is Rare

The Centers for Disease Control and Prevention (CDC) reports around 28,000 new cases annually, but admit that the actual number is likely ten times that, totaling 300,000+ new infections per year. That would mean that since the year 2000 there have been 3,600,000 new infections. The numbers say it all- Lyme Disease is not rare!

 

5. A negative test means you don’t have Lyme Disease

The laboratory tests used to diagnose Lyme Disease are extremely inaccurate and have remained unchanged in over 30 years. Positive cases are missed up to 50% of the time due to these inaccurate tests and the very strict CDC criteria, actually intended for reporting not diagnosing, which only further enables patients to be left without a diagnosis or misdiagnosed. Diagnosis of Lyme and its associated diseases is largely a clinical diagnosis.

 

6. Lyme infection is similar to having the flu and/or predominately involves the joints

While “flu-like” symptoms are a common complaint, especially at the onset of infection, this is by no means the only manifestation of the disease. As for Lyme arthritis, not all patients suffer joint involvement, particularly arthritis of the knee, a commonly referenced symptom of Lyme. Symptoms can range from cardiac, dermatological, musculoskeletal, neurological to psychiatric. Every person’s experience is different.

 

7. All doctors are educated about Lyme Disease

In fact, the opposite of this statement is true. The majority of mainstream doctors are not educated about Lyme and/or base their professional opinion of the disease and its diagnosis and treatment off of the IDSA guidelines, which are outdated and inaccurate. Patients often end up having to work with a Lyme-Literate doctor (LLMD) in order to receive proper treatment.

 

Most all doctors follow the IDSA guidelines but their guidelines and flawed testing make sure many people fly under the radar for years, decades, giving the bacteria (and co-infections) a chance to do serious damage to every body system. By the time they receive a diagnosis their immune system is tanked and every organ is struggling, which requires massive amounts of carefully planned treatments. The ILADS guidelines are tailored to each patient. They recognize long term abx are necessary in some cases, and also can introduce supportive nutrient therapy from herbs and diet and lifestyle changes. These Lyme literate doctors are not sprinkled all over the place, especially in states where the CDC suggest Lyme doesn’t exist. In fact, many of these LLMDs struggle to keep their license, therefore not being able to submit their services to their patients insurance, making them rather unaffordable, pushing many to file for assistance or disability did which most Lyme patients will be denied for because they can’t possibly be that sick from Lyme).

 

8. Ticks only carry Lyme Disease

Some ticks only carry Lyme Disease, yes, this is the true, but this is the exception not the rule. Commonly referred to as “nature’s dirty needles” ticks often are harboring more than one pathogen. Some patients have been infected with as many as five co-infections along with Lyme Disease. These can include Babesia (multiple strains), Bartonella (multiple strains, Ehrlichiosis, Mycoplasma, Colorado Tick Fever, Powassan encephalitis, Relapsing Fever, Rocky Mountain Spotted Fever, Q Fever, Tick Paralysis and Tularemia among others.

 

9. Chronic Lyme Disease does not exist

Despite ravenous denials by the CDC, IDSA. and National Institutes of Health (NIH), there is plenty of evidence that Lyme Disease can become a chronic persistent infection, including the Barthold mouse study and the Ember monkey study. Those who deny the existence of Chronic Lyme continually ignore this new research and largely quote themselves and their fellows in the current Lyme Disease diagnosis and treatment guidelines written by the IDSA.

 

10. Risk of Lyme infection is isolated to certain areas

The idea that Lyme Disease is limited to specific geographical areas is completely false. Often described as a regional infection, Lyme Disease is now found throughout the United States, Canada, Europe and elsewhere globally. Other tick-borne infections such as Babesia duncani, which was originally named WA-1 for having been discovered in the state of Washington, are also now being seen throughout the country.

 

11. Only Deer Ticks carry Lyme Disease

Actually multiple species of ticks carry Lyme Disease. Along with many aspects of Lyme Disease this subject is also one rife with controversy and disagreement. Being cautious of all species of tick and enacting proper prevention methods is the best way not to become infected.

 

12. Lyme is an outdoorsman’s disease

While those who spend a lot of time outdoors have a significantly higher chance of infection, anywhere you are exposed to tick-friendly environment is not without risk. Your backyard is no more safe than taking a hike in the woods and even if you spend more time indoors than out, we all have factors in our lives that can lead to ticks getting into our homes. One of the most common ways a person can become infected without having to go outside is via pets. Many families allow their cats and dogs to roam outside and by doing so provide ticks with the perfect host. Once in our homes our pets often will lay on furniture, carpets etc. and ticks can find their way to us. 

 

13. All Tests are Created EqualThe Elisa test (first line of testing used in Lyme) is 50% inaccurate. IF you manage to test positive on an Elisa, you may get treatment, or some doctors may then enforce a western blot to prove or disprove you have Lyme. You must get 5 of 10 positive bands to even suggest you have Lyme to validate treatment. China requires 1 Lyme specific band out of 10. The diagnostic testing for Lyme is flawed and there is not enough research being done to improve the test sensitivity. Again, these tests only cover one infection. Lyme is often accompanied by more infections which are all too often over looked. The CDC refuses to alter their criteria to allow for more people to obtain a diagnosis for treatment. Many of the sickest patients won’t test positive on a western blot because the test measures resistance and antibodies against the Lyme bacteria (borrelia burgdorferi). If their immune system isn’t producing the antibodies it doesn’t mean the infection isn’t there (not always). It might mean that the body can’t fight! Leaving the patient deathly ill. 

 

14. Lyme Disease is inexpensive to treat

Maybe if all you need is doxycycline in a fresh infection! Chronic Lymies pay twice as much out of pocket than HIV Patients.  

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