Controversial Diagnosis #6: Chronic Lyme Disease

Since no one argues about the existence of Lyme disease, right up front you should know that the controversy here centers on the word “chronic.” In my view, the arguments among physicians about whether or not such an entity exists are becoming a bit ridiculous.

First, let’s briefly cover acute Lyme disease. Although certain states have more cases than others, acute Lyme disease has been reported throughout the continental US and around the world. The average age of becoming infected is 11 and pediatricians are especially alert for the commonest signs and symptoms.

You know the story, for children and adults alike: tick bite, possible (but not always) bull’s-eye rash, flulike illness, antibiotics to treat, and you or your kid get well. This should be the end of it, but it’s not.

The Centers for Disease Control (CDC) acknowledges that it vastly underestimated the number of new cases of Lyme. For years, the CDC was convinced there were about 30,000 new cases annually. Now it’s 300,000 annually–a ten-fold increase. Despite this enormous increase, keep in mind that these are merely the cases that get diagnosed, treated correctly, and reported to the local health department by the physician.

What happens to all the people who become ill with what seems like a crummy summer flu, don’t remember having a tick bite or a rash, and either self-treat symptoms or see a doctor who doesn’t even think of Lyme? What happens to those who are correctly diagnosed but inadequately treated?

Chilling stats from ILADS
Here are a few statistics, from a top-notch, easy-to-understand website with a mouthful of a name, the International Lyme and Associated Diseases Society (ILADS).

–Fewer than 50% of people who ultimately get a Lyme diagnosis remember either a tick bite or a rash.

–40% of patients who get diagnosed with acute Lyme disease experience long-term health problems because of inadequate treatment.

–Up to 50% of ticks in Lyme-prevalent areas are infected. Locally this includes Wisconsin, Michigan, and Illinois but, significantly, Lyme-carrying tick populations are on the rise in nearly half of all counties in the US, according to the CDC.

Common sense would tell you that patients who receive inadequate treatment or those whose diagnosis of acute Lyme disease was missed altogether would likely remain ill. The most reasonable term for this would be “chronic Lyme disease” because the spiral-shaped bacteria (spirochete) known as Borrelia burgdorferi, which causes Lyme disease, remains in their bodies.

However, because a truly excellent diagnostic blood test has not yet been developed, the majority of physicians (including, for years, the CDC) took the stance that if there were no positive test results then there was no such thing as chronic Lyme. Period.

A vocal minority of physicians, with the full support of Lyme disease patients, have created support networks and associations of Lyme-literate physicians. At WholeHealth Chicago, Casey Kelley, MD, and nurse practitioner Katie McManigal focus their practices on chronic Lyme and related issues. ILADS holds meetings worldwide, with one coming up in Chicago November 1-4, 2018.

Symptoms of chronic Lyme
Recently (and it’s about time), the CDC changed its stance on Lyme. Although it still won’t  acknowledge the term “chronic Lyme disease,” its web page does list the symptoms of untreated Lyme disease. Let them call it what they want.

This is the CDC symptom list (click here for details):
–Severe headaches and neck stiffness.
–Red rashes that come and go anywhere on the body.
–Arthritis and joint pain, especially in the knees and other large joints.
–Loss of muscle tone or droop on one side of the face.
–Intermittent pain in muscles, tendons, and bones.
–Heart palpitations or irregular heart beat.
–Episodes of dizziness or shortness of breath.
–Inflammation of the brain and spinal cord.
–Nerve pain.
–Shooting pains, numbness, tingling in the hands and feet.
–Problems with short-term memory.

Importantly, the CDC acknowledges that both acute and untreated Lyme disease are clinical diagnoses, meaning the diagnosis is based on signs, symptoms, and a history of possible exposure to an infected tick. It adds that “laboratory tests are helpful if used correctly.” They advise not to perform Lyme tests on perfectly healthy people in case a false-positive result leads to unnecessary treatment.

Still, the majority of physicians do not believe chronic Lyme exists and usually have no opinion about untreated Lyme disease. The Wikipedia article on chronic Lyme is quite negative and has all the signs of having been written by Stephen Barrett, MD, of quackwatch.org. The Mayo Clinic website does offer a short description of untreated Lyme. However, a patient recently relayed that, when she called Mayo for an appointment, she was told they were not accepting patients with chronic Lyme disease. Go figure.

Prevention key
Like so many conditions, prevention is key here. If you’re tromping the wilds this summer, pay close attention to preventive strategies before you set out. Most important is keeping ticks from coming in contact with your skin in the first place. You can accomplish this by wearing long-sleeved shirts and long pants, ideally tucked into socks.

The CDC has quite a detailed page on preventing tick bites, including which pesticides to apply to your clothing.

If you need a refresher on how exactly a deer tick causes Lyme disease, click here for a Health Tip that explains it.

And if you’re interested in further reading, the book Lyme: The First Epidemic of Climate Change, by Mary Beth Pfeiffer, looks promising.

Be well,
David Edelberg, MD

7 comments on “Controversial Diagnosis #6: Chronic Lyme Disease
  1. Pat Haase says:

    I am sure I had lyme disease. I had the bull’s eye rashes, etc. I had a test which came out negative. But my doctor did not know anything about it. About 9 months later, I was diagnosed with lymphoma and had to undergo 6 chemo treatments and quit my job. I feel the lyme caused the lymphoma. My body was fighting it. I guess the chemo killed everything, so maybe I should be grateful.

  2. Laura Burns says:

    Good start to this topic. However, what is missing is the fact that Lyme and its coinfections can spread from mother to baby in the womb, and from partner to partner. Plus, any biting insects – even horse flies and mosquitoes can carry these diseases.

  3. Deb S says:

    I recently learned of another way to prevent tick bites – wear pantyhose. Apparently ticks cannot latch on through the fabric. This information is not widely known so I’d like to spread the work. I found it on a hunting forum and learned that the military wears pantyhose (!) for this purpose as well.

    I note that the CDC list did not mention chronic fatigue as a symptom of chronic Lyme Disease but it is right up there, given the hormonal imbalance caused by the disease.

  4. Zella Audubon says:

    Unfortunately, your clinic grossly mishandled Lyme diagnosis and treatment. The company I was directed to use—and spent many hundreds of dollars on testing—uses a polymerase chain reaction technology that is vastly outdated and proven completely ineffective by every single modern aperture of science. The company has published no peer-reviews research showing the actual efficacy of their testing, and many case studies trying to duplicate their results using the same technology have failed. The company is question—DNA Connexions—stands to gain tens of millions of dollars from their overpriced, pseudoscientific testing. As a scientist myself, I was completely dismayed that your clinic relies on this company for diagnosis. Every search on every online forum offers the same insights: the company asks patients to contact them with any questions, and no one—through email or phone—ever hears back. This is a major oversight issue and malpractice on your end.

    One bit of advice from someone whose struggled with chronic illness:

    As a doctor, I can guarantee you don’t know as much as you think you do. Humility is the gateway to wisdom, not knowledge.

  5. Sharon Pritikin says:

    I was also turned away from Mayo Clinic for Chronic Lyme. They said that I could be treated locally.

  6. Dr. Kelley says:

    Zella. Lyme is a clinical diagnosis (even the CDC states this on their website) meaning that no tests are needed to diagnosis the illness. Labs are there to help direct treatment. We use many different labs to help us determine the underlying cause of illnesses in our patients. They are tools to help guide and direct our treatment. Most importantly, we treat the patient, not the lab.

  7. Carter Stan says:

    BEST HEALTH

    I was battling with Lyme Disease for 6 years. I recently found a herbal treatments to be taken along with antibiotics. It’s a very horrible disease and you need to fight it using all the possible help available. Best Health Herbal have the most powerful Lyme disease herbal Formula. I only used the Lyme disease herbal formula for 8 weeks, all the arthritis symptoms and the joint pain disappeared. i just confirmed last week that am now Lyme disease free. During this period i ate Lots of yogurt and Also exercise everyday.

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