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Lyme Disease Is Spreading Nationwide: Misdiagnosis Is More Common Than You Think

It’s tick season.

The days are getting longer. Many of us are spending more time outdoors, enjoying the early summer months. Now, more than ever, is a good time to be on the lookout for ticks.

Lyme disease is four times more common than HIV infection in the United States, yet very few people know about it, and worse - very few doctors know how to manage a case of Lyme disease.

Deer ticks, otherwise known as the blacklegged tick, are one of the main vectors for Lyme disease. During the summer, they are at their maturity in their lifecycle and looking for large mammals to feed on - this includes human hosts.

An infected tick carrying Lyme disease could be no larger than a poppy seed and cause flu-like symptoms that are difficult to treat. As a result, Lyme disease is often misdiagnosed as arthritis, fibromyalgia, or psychiatric disorders like depression!

According to Dr. Richard S. Ostfeld of the Cary Institute of Ecosystem Studies, many more ticks than usual will be carrying Lyme disease this summer season. (1)

Lyme disease is caused by an infection with the bacteria, Borrelia burgdorferi. Borrelia is known to survive specifically in deer ticks.

As Dr. Ostfeld explained during the International Conference of Emerging Infectious Diseases (ICEID), 2011 saw a population explosion of white-footed mice. This just happens to coincide with the two-year lifecycle of ticks that can possibly transmit Lyme disease.

This means in that in 2012 the northeastern United States faces possibly the worst season yet for Lyme disease. Because Lyme disease is spreading throughout the United States and showing up as far west as California, Lyme awareness is essential.

Some ticks are no larger than a poppy seed.

Deer ticks can be tough to spot. They go through three cycles of feeding during their two-year lifespan. In the second stage of their life, an infectious tick is no larger than a poppy seed.

Even if you know how to spot a tick or a tick bite, many people never know they have been bitten.

Classic signs of a bite and symptoms of Lyme disease include:

  • A large “bull’s-eye” rash surrounding the area of the bite. This rash is typically warm to the touch, surrounded by a red ring, and has a clear center.
  • Flu-like symptoms such as fever, chills, swollen lymph nodes, fatigue, and headache.
  • Symptoms appear within 7-10 days following an infected tick’s bite.

Why Lyme Disease Is Commonly Misdiagnosed

When it comes to Lyme disease, those who are infected with Borrelia burgdorferi are commonly diagnosed as having another chronic health condition.

This is true even in the northeastern United States, where Lyme is common. To make matters worse, many times those infected with Lyme have no recollection of a tick bite or a rash.

Lyme disease affects each person differently. Those with Lyme will commonly suffer from severe musculoskeletal pain and from neurological symptoms. Examples of common misdiagnoses are:

  • Fibromyalgia
  • Chronic Fatigue Syndrome (CFS)
  • Arthritis (rheumatoid, reactive, infectious, juvenile, or osteoarthritis)
  • Autoimmune conditions, such as Lupus and Multiple Sclerosis (MS)
  • Guillian-Barré syndrome (GBs)
  • Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis (ALS)
  • Ménière’s syndrome
  • Early Alzheimer’s or early Parkinson’s disease
  • Psychiatric disorders (like bipolar or depression)

The problem with a misdiagnosis is that the infection never receives proper treatment. Slowly, an individual’s health can deteriorate.

While there are tests that look for evidence of Lyme disease, these tests come with their own set of challenges. All too often, the tests that screen for Lyme disease will give a false negative. A false negative means that the infection is there, even though it does not show up in a blood test.

The Challenge of Treating Lyme Disease

Once Lyme disease is diagnosed, the treatment itself has a number of challenges.

The active form of the bacteria is a spirochete, or a spiral shaped bug. In this form, Borrelia reproduces and grows. Unfortunately, this is the only form of Borrelia that is susceptible to antibiotic therapy. In its other forms, which number an estimated 9 to 30 different forms, the bacteria are able to evade antibiotic therapy. (2)

The CDC recommends a short course of antibiotic therapy, roughly about 3 weeks long. While a short course of antibiotics can be extremely effective during the initial stages of an infection, many times treatment requires more time. This is especially true when Lyme disease is missed or if the bacteria go into hiding by assuming another form.  For this reason, many Lyme disease patients only feel an improvement with long-term antibiotic use.

Managing Chronic Lyme Disease

The protocol recommended by the CDC and used by most physicians is a short course of antibiotics. Unfortunately, this is often ineffective, and long-term treatment is necessary.

Diet is important. Food can either weaken or overburden the immune system. When fighting Lyme disease, the last thing that the body needs is more work.

The Body Ecology Diet supports the body in getting rid of an overgrowth of Candida and by balancing the inner ecology of the gut.

Do your best to build your immune system with fermented foods and probiotic beverages like CocoBiotic and Coconut Water Kefir.

Remember: These same steps apply to any situation where the body requires all the immune force that it can muster, including the systemic infection we see in Lyme disease.

Find a Lyme literate doctor in your area for more help:

What to Remember Most About This Article:

Many of us don't realize that Lyme disease is four times more common than an HIV infection in the US! Even worse, there is very little awareness about the disease, and few doctors know how to treat it effectively.

Lyme disease is spreading from coast-to-coast, and infected ticks may be as small as a poppy seed. Symptoms of Lyme disease can appear as the common flu, including fatigue, fever, chills, and a headache. It’s no wonder that Lyme disease is commonly misdiagnosed and confused with a wide range of serious disorders, like fibromyalgia, arthritis, and even early Alzheimer’s disease.

When Lyme disease is misdiagnosed, it’s difficult to receive proper treatment. Many doctors may recommend antibiotic therapy, which may not work at first so that long-term treatment is necessary.

To protect yourself from the everyday dangers of Lyme disease, it’s more important than ever to boost your immune health with fermented foods and probiotic beverages! When fighting Lyme disease, you can support your health with a beneficial diet that won’t overburden your immune system.

Product Recommendations:

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    Unlike yogurt, kefir can actually colonize the intestinal tract and is simple and fun to make at home. To make kefir: Mix one packet with 1 quart of warm milk, cover and set at room temperature for 18-24 hours. Refrigerate and enjoy!

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    • Digest fats, proteins and carbohydrates
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    • An absolute must after antibiotic use


  1. Osterfeld R. “Ecological Drivers of Tickborne Diseases in North America.” 8th International Conference on Emerging Infectious Diseases, Atlanta, Ga. March 13, 2012.
  2. Sapi, Eva. Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi. Infection and Drug Resistance. May 2011; 4 (1): 97 – 113.

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  • Erin

    Donna, would you recommend taking antibiotics in a lyme disease case?

  • Wendy

    To answer an early question...there are a number of tests that can be done in order to confirm a lyme diagnosis. Check out The CDC says that the Elisa and Western Blot tests are the gold medal standard, but most folks test negative on these two tests in Canada and the US. My partner only triggered a positive diagnosis using the C6 Elisa AFTER 5 months of antibiotics. They even found the DNA of the bacteria in his blood and we are still fighting our local infectious disease specialist. Don't be discouraged! Start taking notes and attend your appointments with a friend/relative. You really need someone on your side to help you battle this horrible bacteria.

  • http://body Ecology Deboreth

    I to had no signs of lyme ,but thank god I had a doctor who know I wasn't one to complain and force the issue to get me tested . Place on anticbotic for 21days also but still have a lot of the same problems but they say the test still come back negative so i don't know who to believe any more some it goes away other say it stay in the body please help in the understanding of this terrible diease thank you

  • Chris

    How does one get "tested" for this disease, especially if there is no "tick" seen or bullseye rash seen?

  • Christina

    Thank you for the information. If there is no sign of a tick, or a bulls eye, what are the other diagnostic criteria for Lyme's? Thank you for any heop.

  • jerry leonard

    Lyme Disease: A Contrived Epidemic Proliferating Out of Control


    The magnitude of the epidemic at the national level has been summarized in one article as follows:

    “We're in the midst of a terrifying epidemic, although you wouldn't know it to talk to most doctors and health specialists. The disease is growing at a rate faster than AIDS. From 2006 to 2008 alone, the number of cases jumped a whopping 77 percent. …If any other disease had stricken so many people, the medical community would be scurrying for knowledge, scrambling for cures or rushing to warn patients (think swine flu). But that's not the case with Lyme disease -- a disease carried by ticks.” [xvi]

    “Our practice is restricted by higher authorities, like the CDC.”

    --Dr. Muddasar Chaudr

    Lyme Doctors Eradicated
    Although Lyme disease cases have doubled in the past five years, the number of doctors willing to treat them has dwindled. Medpage today reports that at ground-zero of the Lyme Epidemic, only 2% of doctors in the state of Connecticut are willing to treat it:

    “Only a very small number of physicians in Connecticut -- the epicenter of Lyme disease -- diagnose and treat patients with the controversial chronic form of this tick-borne infection, a survey found. Among 285 primary care physicians surveyed, only about 2% treat chronic Lyme disease…”[xvii]

    As the authors of the award-winning Lyme disease documentary Under Our Skin recently reported in their blog:

    “So, with Connecticut Lyme cases skyrocketing up 118% from 2006 to 2008, and the state desperately needing every Lyme specialist it can get, the children of Connecticut are the ones receiving a potential life sentence of suffering, if they acquire one or more tick-borne diseases.” [xviii]

    The human consequences of this reality are hard to fathom for those not directly affected.

  • John Lynch

    Add MS to the list of potential misdiagnoses. I have someone in the family who had this misdiagnosis at not just one, but two, of America's leading academic medical centers. She's now bed-ridden and has been for years because effective treatment was delayed by these misdiagnoses.

  • Amy

    It's also important to note that the lyme causing bacteria can be sexually transmitted, and women can pass it to their unborn babies.

  • Lenore Beck

    I was misdiagnosed for 20 years & told I had everything from CFS, Fibro, lupus, MS, Parkinson's & then it was just in my head. Nobody tested me for Lyme until I moved from FL. to CA. I had the highest positive that doctor ever saw & was also diagnosed with Babesia, Bartonella &Ehrlichia. I was put on antibiotics & a whole range of other meds for 7 years to no avail. I am now in my 28th year of chronic Lyme; however, I attribute my general good health to treating myself nutritionally.

    The worst part is that this has become a political issue & 'Lymies' have to fight to find a Lyme Literate doctor who is brave enough to take them through the prolonged treatment necessary when found late. Medicare bankrupted my doctor because she was treating Lyme patients well beyond the few weeks the CDC & big pharma say is sufficient. She moved her practice to the local hospital & was told they welcomed her, her patients but not to bring her Lyme patients as she would not be brought on board. I find it interesting that the CDC is steadfast in its narrow view, yet Pres. GWB got the necessary treatment from a LLMD considered extreme by them.

  • Dr. Elle Guastella

    I can't tell you how thrilled I am that Lyme Disease is finally being recognized as the infectious and devastating disease that it truly is. In the past, many patients have been misdiagnosed or told that it's all in their heads, believe it or not! Now it is finally being talked about in the media... at last.

    I have Lyme myself and never had any rash or other "classic" signs of a tick bite. But, be aware that Lyme is carried also by fleas and mosquitos. I went the herbal route and never took the standard antibiotic treatments. I am doing very well. 24

    I use your products religiously. The Body Ecology diet and your products have been a mainstay in my Lyme protocol.

    Keep up the great work! Dr. Elle

  • Jean

    The herb Teasel is very effective against Lyme disease. Check into Teasel tinctures ... here is a good website that sells the tincture, or can direct you to who does.

  • Gary

    Texas Lonestar ticks can cause, Lyme, too. It is a huge misconception that only deer ticks carry it.

    Thanks for spreading the word and helping the cause. This disease goes misdiagnosed way too often. And if folks are put on steroids ( due to misdiagnosis ) it can be catastrophic as steroids make the bacteria go crazy and multiply!

  • Kim

    Thank you for bringing this disease into national awareness. The medical field and insurance companies are horrid in their approach and treatment plans. I have spent over $30,000. out of pocket to stay alive and remain able to function mentally.This is without exaggeration. My medical doctor shook my hand and wished me good luck-
    Keep up the good work.

  • Lisa G

    Thank you for helping to spread the word about lyme disease. I have Chronic Lyme and unless we get more people aware of this disease, we may never find a cure. Probiotic food and drink are a very important factor in keeping anyone healthy no matter what their situation is. I am enjoying a glass of kombucha now, :-) it also helps me with my energy level.

  • Lyme Bites

    Thank you for the article. Many people still believe this is a "rare" disease. My son and I both were infected from coastal ticks (nymph stage for me) in CA. This is not some "east-coast" disease as some believe and it is found in every state in the US along with co-infections like Babesia, Ehrlichia and Bartonella which make the treatment very difficult once it has gone to late-stage lyme.

    Probiotics in pill and food form such as coconut kefir and cultured vegetables have been a lifesaver during the long-term antibiotic use necessary to kill the bacteria/protozoa infections.

    It is worth the money to have the DNA of the tick tested (after removal) to confirm any bacteria or co-infections. See your state lyme disease association for more information on accurate testing and watch "Under Our Skin" online or on Netflix to better understand this complex disease and history.

  • Felicia Zuelsdorf

    Thank you for bringing attention to this issue. I have Chronic Lyme Disease and my Lyme Literate MD brought me to your site as a good source to battle candida with kefir and the Body Ecology Diet.

  • Jennifer

    Great article. However, it's important to note that many lyme victims do not get the bull's eye rash described.

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