Facts About Lyme Disease That Even The CDC Doesn’t Know

More than 30 years after being an identifiable and reportable illness, Lyme disease continues to be a hotly debated issue inside and outside of the medical community. There is a wide spectrum of opinions when it comes to how the disease manifests itself and how frequently the medical community believes the disease should be diagnosed.  Are the current tests accurate or inaccurate, how long should treatments last and what should those treatments look like?  Can this disease become chronic? 

The CDC is one of the most respected sources on disease information in the United States. However, when it comes to Lyme disease, they have a history of not reporting all of the facts. With such a powerhouse source relaying so much misinformation, confusion surrounding this debilitating disease remains one of the primary reasons it goes so under and misdiagnosed, as well as untreated.

Origins of Lyme disease:

Lyme disease received its name from Old Lyme, Connecticut, when in 1975 an outbreak of juvenile arthritis occurred. There were 51 cases of both adults and children that were studied, and in 1982, the spirochete bacterium, Borrelia Burgdorferi was discovered as the causative factor of Lyme disease. Although Lyme disease did not become a reportable disease until 1987, there is evidence of the disease being around for thousands of years. One of the most interesting cases is of Ötzi, the ancient body of a man of 5,300 years old discovered in the Alps between Austria and Italy in 1991. Ötzi is believed to be the first known case of Lyme disease, and indicates that this disease has been around for thousands of years and is spread across the world.

30,000 vs. 300,000:

For the past decade, the CDC has reported the Lyme disease diagnosis rate as 30,000 new cases per year. In August 2013, a press release from the CDC amended their previous estimates of 30,000 cases per year to 300,000 new cases of Lyme disease per year. This increases the number of people diagnosed with Lyme disease by ten fold. This is a staggering difference, and makes Lyme disease more common than AIDS and HIV in the United States.

This new statistic also confirms that Lyme disease is the most commonly reported and diagnosed tick-borne illness within the United States. Paul Mead, M.D., M.P.H, who is the chief of epidemiology and surveillance for CDC’s Lyme disease program was quoted as saying “we know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater,” and that “this new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”

Infection, Prevention, and Vaccines:

Infection:

In many reports, it is stated that up to 14-32% of all patients diagnosed with Lyme disease do not recall a tick bite, and according to the International Lyme Disease and Associated Diseases Society, 50% of Lyme positive patients never develop a bulls-eye rash.

Although it is believed to take up to 24-48 hours to become infected by an attached Lyme disease positive nymphal stage deer tick, in order to actually remove a tick, one must feel it first or have another person do a very thorough tick check. Nymphal stage deer ticks can be the size of a mustard seed, and their bite often goes unnoticed.

There is also evidence to suggest that Lyme disease may be transferred during blood transfusions and organ donations. As the CDC states, the bacteria can survive in donated blood, so those infected with the disease and receiving treatment should not donate. If one gets the disease from a transfusion, there will be no bulls-eye rash and no recollection of a tick bite, as neither will have occurred.

Prevention:

To try and prevent becoming infected with Lyme disease, a person should follow certain guidelines.  These guideline however are not foolproof:

  • Wear repellent
  • Do daily tick checks, especially if you have spent any significant time outdoors
  • Do daily tick checks on any outdoor pets, as your cat or dog can bring an infected tick inside your home
  • Shower thoroughly after being outdoors
  • Call your doctor if you notice a rash or begin to experience flu-like symptoms
  • Remove any ticks and have them sent to a lab for Lyme testing

Vaccination:

In 1998, LYMERix was developed and licensed by SmithKline Beecham as a three-dose series vaccine. The vaccine was roughly 78% effective in protecting against Lyme disease once all three doses had been given, and worked by stimulating antibodies to attack the bacteria passed from the tick as it bit and fed on a human host. However, due to side effects that were similar to the disease itself and not a high enough demand, it was withdrawn from the market by 2002. As of today, there are currently no vaccines available for the prevention of Lyme disease.

World and Country Wide:

Another widely perpetuated myth is that Lyme disease only occurs in about 14 states within the United States. The CDC states that 95% of confirmed cases occur within these 14 states, located in the Northeast and upper Midwest. With a yearly diagnosis rate being off by 10 fold, it is clear this is a highly under-diagnosed disease of which researches have yet to fully grasp. According to the American Lyme disease Foundation, in 2008, every state had reported cases of Lyme disease. Lyme disease is found world wide, and is prevalent across the United States, as a tick has no boundaries and can travel on a variety of hosts.

Testing for Lyme disease:

Lyme disease can often go undiagnosed because it is not something that is commonly tested for. Only 50% of patients see a bull’s-eye rash, and for many, symptoms do not begin to show up until 30 days after being bitten. The symptoms are incredibly non-specific and mimic many other diseases and illnesses. If you do not live in one of the “14 endemic” states identified by the CDC, chances are slim a physician will even consider Lyme disease as a viable diagnosis.

What makes the disease even more difficult to diagnosis, is that often times, the tick can infect a person with multiple diseases and parasites at the same time, adding to the number of non-specific symptoms a patient may experience.

On top of that, ELISA testing, the test that is first used to determine if a patient has Lyme disease is not considered effective or reliable until at least 3 weeks after an infection. This means that if a patient starts showing symptoms just days after an infection is transmitted, their test may come back negative and Lyme disease is essentially “ruled out.” This causes many people to go years without proper diagnosis. An ELISA test needs to be positive according to the CDC for a Western Blot test to even be run. With an estimated sensitivity rate of up to 80% at the best labs, it is possible for the Western Blot to come back false negative. 

Lyme disease Symptoms:

The vast symptomology of Lyme disease, both early and late stage, is one of the reasons the diagnosis, treatment and management of the disease remains so difficult and complex. Often times, the “classic” bull’s-eye rash doesn’t appear, or if it does, it may not resemble a bull’s-eye whatsoever, often being obscured by ones hairline or just not forming the perfect circle physicians are looking for.

Symptoms for the disease may occur a few days after being bit, or in some cases, it may take up to 30 days or significantly longer. These symptoms often times resemble the flu, and may be dismissed as such, especially if one does not live in a Lyme endemic area. As Lyme disease is a multisystem infection and can cause such a vast number of troubling symptoms, it is often called the “New Great Imitator,” as it mimics hundreds of other illnesses. The other troubling hallmark of Lyme disease is that its symptoms come in waves. A patient may experience flu like symptoms 30 days after first being bit, and then seem to make a recovery, only to begin experiencing a plethora of other symptoms months or years later.

Symptoms can include, but are not limited to headache, facial paralysis, sore throat, swollen glands, heightened allergic sensitivities, twitching, upset stomach, nausea, loss of appetite, unexplained weight loss or gain, difficulty breathing, night sweats, heart palpitations, double or blurry vision, red eyes, ringing in ears, anxiety, depression, sleeplessness, fatigue, joint and muscle pain, and much more. Many of these symptoms can occur immediately after the initial infections and some develop once the disease has progressed into late-stage or neurological Lyme disease, meaning it is now affecting the central nervous system.

Chronic Lyme disease:

One of the most challenging parts of Lyme disease treatment comes from the ongoing debate as to whether or not “Chronic Lyme Disease” exists, or if it is merely “Post Treatment Lyme disease syndrome.” The two sides of this debate have yet to find any common ground, aside from both sides acknowledging that symptoms of the illness can persist for years. However, the cause of these symptoms is what continues to be a complex issue for patients and their treating physicians. If the disease does persist and become a chronic disease, then the treatment would need to be ongoing.

There is also the ongoing debate as to what is a full-course of treatment? For some physicians, this is 2-4 weeks of antibiotics, for other physicians, this is 2-4+ years of antibiotics and various other treatments, medications and supplements. In states such as Virginia and New York, the state government allows physicians to treat patients with long-term antibiotics without fear of losing their medical licenses. These States acknowledge that Chronic Lyme Disease is a real issue. 

In most states, especially those considered non-endemic, long-term antibiotics can cost a physician their career. This only adds to the debate and misunderstanding of Chronic Lyme Disease. The CDC acknowledges that 10-20% of patients still have symptoms following the standard 2-4 week treatment course. Although they cannot say what causes this to occur, they refuse to acknowledge that studies have shown that the bacteria can in fact persist following antibiotics.

Conclusions:

Lyme Disease is the most common vector-borne illness in the United States, causing 300,000+ new diagnoses each year. It can be transmitted via deer tick, or potentially, blood transfusions and organ donations. The disease is a multisystem infection that can begin to show symptoms only a few short days after one is first bit by an infected tick, or it can take up to a month or even years for symptoms to present themselves. The longer a patient goes without treatment or a correct diagnosis due to inaccurate test results and other factors, the harder the disease is to treat and manage.

It is important to stay vigilant when spending time outdoors, to do tick checks on yourself, loved ones and pets. Prevention is the best defense. If you experience many unexplained symptoms, regardless of whether or not you ever remember being bit by a tick or having a bull’s-eye rash, it is important to talk with your physician about receiving ALL Lyme tests available.

 

This post was written by Sarah Sheridan, one of CrowdMed’s first validation patients. It took her own doctors 3 years to diagnose her Lyme Disease, but less than one week for CrowdMed’s approach to reach the same conclusion.  You can read her story here.

Worried you may be suffering from Lyme Disease or some other undiagnosed medical issue?  Submit your case to CrowdMed. We’re here to help.

 

Published by

Sarah Sheridan

Sarah Sheridan

Sarah became involved with CrowdMed as one of their first beta user test cases. After struggling to find a diagnosis for an unknown illness for over 3 years, Sarah was eventually diagnosed with late-stage, neurologic Lyme disease. Amazingly, CrowdMed was able to diagnose Sarah correctly in less than a week. It has now been over 5 ½ years that Sarah has been sick, and she continues to work toward regaining her health through extensive treatments. She remains a huge supporter of the work CrowdMed is doing, as well as being a part-time Medical Detective, most often contributing to patient medical chats. Sarah also works toward helping better educate and advocate for people affected by Lyme disease.

  • http://skeet65.blogspot.com Karen Elmore

    Really enjoyed reading your post. It was well-stated and to the point. Been dealing with Lyme disease since dx’d by the Igenex lab in Nov ’13. Did pull a tick off of me back in ’08 and it had been in my hairline, for a couple of days. It was swollen and I almost puked because I didn’t know that it was there. Flush it down the toilet, but looked at it and it looked like a dog tick. Can I have Lyme from that? Only thought, it had to be a deer tic or something. Been sick for years and bedridden with pain, fatigue and every symptom imaginable. You’re right…you sometimes feel like dying would be easier.

    We don’t have any dogs or animals in our home and didn’t know where the tick had come from. My husband told me that I had probably gotten it, from sitting underneath our Pine trees in the yard. Just wish that I knew which direction to go, to eradicate this Lyme, Bartonella and Babesia from my life. I do use essential oils in every bath and believe that is what has kept me going, so far.

    Thank you and God Bless…Karen

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  • Mary Susan Jesserer-Poore

    Thank you for an informative and historically factual post. So many people are misled by doctors who tell them they “should be better by now”. Would physicians say the same to a person struggling with another kind of serious infection? No-they would try another protocol!! I must state for the record that there are microscopic data proving the spirochete is not only extracellular but becomes intracellular (inside the cell) where the protean agent’s genetic material exists and appears to thrive for years, despite repeated antibiotic treatment, inside the human cell (epithelial and CNS). I have collected studies over the last 25 years from European and US university medical sources documenting this spirochetal activity or biologic pattern of molecular behavior. So-tell me, how is it possible for physicians to state chronic Lyme does not exist, and antibiotics “should” bring a cure. Have they informed themselves of the newest information? Saying prevention is the key, is like telling a cancer patient that prevention “would have been better”, isn’t it? Patients are left wondering “What now”…?? Let’s assume we as consumers have functional intellects…does any of this nonsense make sense, at all? Bravo to all who struggle with chronic Lyme and have found creative ways to back down their infections and immune reactions. And kudos to physicians out there with the courage to act as scientists who practice the art of medicine.

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