Does Everybody Have Chronic Lyme Disease? Does Anyone?

Borrelia burgdorferi, the Lyme spirochete, the bacteria that causes Lyme disease (but not chronic Lyme disease).

Cohen says:

People often attribute uncomfortable symptoms to aging, stress, or the “aches and pains of daily living,” especially if blood tests and body scans are normal. What if you have Lyme and don’t know it? If you’ve ever been for a walk in the woods, laid in the grass, live in or visited a Lyme-endemic area, or have a pet cat or dog, you may have exposed yourself to Lyme disease and associated co-infections. There is even the possibility of contracting Lyme if you were born to a mother who has been exposed. Tick born infections can also be transmitted from blood transfusions.

That pretty much covers everyone. Who hasn’t been for a walk in the woods, lain down on the lawn, or had a pet? (And incidentally, are there no editors or proofreaders at HuffPo who realize that the past participle of lie is lain and that infections are tick-borne, not tick born?)

Cohen says:

Lyme is a multi-systemic illness, and may affect every part of the body causing fatigue, stiff neck, headaches, light and sound sensitivity, tinnitus (ringing in the ears), anemia, dizziness, joint and muscle pain, brain fog, tingling, numbness and burning sensations of the extremities, memory and concentration problems, difficulties with sleep (both falling asleep and frequent awakening), chest pain and palpitations and/or psychiatric symptoms like depression and anxiety.

That pretty much covers everyone. Who hasn’t experienced one or more of those symptoms? I’ve personally had 10 of them just in the course of the past week, none significant and none requiring a hypothesis like CLD for explanation. If I wanted to identify myself as “sick” and to believe these symptoms were due to a single underlying cause, it wouldn’t be hard to fit them into the CLD framework.

Cohen interviewed Dr. Richard Horowitz, who claims to have treated more than 12,000(!) patients for chronic Lyme disease and has dubbed it “Lyme-MSIDS” for multiple systemic infectious disease syndrome. He claims that most of his patients have a whole host of associated tick-borne illnesses such as Borrelia hermsii (relapsing fever), Babesia, Bartonella, Mycoplasma, Chlamydia, Rocky Mountain spotted fever, Q-fever, Ehrlichia or Anaplasma. He says that MSIDS

…involves not only the bacterial and parasitic infections mentioned above, but also associated viral and fungal infections, immune issues, inflammation, hormonal disorders, mitochondrial dysfunction (the mitochondria are the part of the cells responsible for energy production), sleep disorders, environmental toxins with heavy metals, and detoxification problems.

He says this is why:

… the standard treatment protocol (consisting of 30 days antibiotic therapy) doesn’t offer the cure for most sufferers. You can’t just blow up bugs. Detoxification, hormone balancing, heavy metal removal and ramping up immune function are equally important.

Criticism of “chronic Lyme disease”

Horowitz is one of the self-styled Lyme literate medical doctors (LLMDs), mavericks who have built a whole industry around diagnosing and treating something not recognized by mainstream medical science. A 2011 article in The Lancet exposed LLMDs for scientific misconduct, fraud, disciplinary actions, use of unvalidated laboratory tests, and other unethical activities. It also showed how activists have diverted attention away from evidence-based medicine and it expressed concern that their activities will endanger the public’s health unless responsible parties firmly stand up for an evidence-based approach.

In the Federation of American Societies for Experimental Biology (FASEB) Journal, PJ Baker, the executive director of the American Lyme Disease Foundation, wrote:

There is no better example of a relentless attack on evidence-based biomedical research and the integrity of outstanding scientists than that associated with the treatment of a poorly defined condition called “chronic Lyme disease.” Here, a scientifically naive general population, the lay press, and legislators, who in most instances are unable to evaluate and judge scientific evidence properly, have been misled by patient advocate groups to believe that extended antibiotic therapy is the best and only solution to this condition. This has resulted in the unprecedented intrusion of government and the legal systems into the practice of medicine and scientific research. Because there is no clinical evidence that this condition is due to a persistent infection, advocating extended antibiotic therapy is not justified and has been shown to be harmful and of no benefit.

An article in Environmental Health Perspectives said:

Lyme disease is a relatively well-described infectious disease with multisystem manifestations. Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, “chronic Lyme disease,” has become established. Chronic Lyme disease is the most recent in a continuing series of “medically unexplained symptoms” syndromes. These syndromes, such as fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity, meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings. We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate and articulate their health concerns and to deal adequately with their medical needs, a state of disorganization termed aporia.

That article is worth reading in its entirely; the link is to the full text. It provides a lot of insight into how the CLD diagnosis evolved, why patients with medically unexplained symptoms welcomed it, how a science-based multidisciplinary approach might more effectively help these sufferers, and why most can be expected to reject that approach in favor of the simplistic understandings and false promises of the “LLMD” approach.

Two randomized trials published in The New England Journal of Medicine concluded that long-term antibiotics were no better than placebo.

Fallon et al. in the Open Neurology Journal have reinterpreted the existing human studies as showing a benefit of antibiotics. You can read their article and judge for yourself.

A 2007 article in The New England Journal of Medicine, “A Critical Appraisal of ‘Chronic Lyme Disease”, concluded that CLD was a misnomer, that it is only the latest in a series of many labels that have attempted to attribute medically unexplained symptoms to infections, and that antibiotic treatment is not warranted. The CDC agrees that so-called Post-Treatment Lyme Disease Syndrome should not be treated with long-term antibiotics.

Chronic Lyme disease has been addressed on SBM several times: here, here, here, here, and here.

Testing for Lyme

Cohen recommends testing for Lyme disease with IgM and IgG Western blot tests, and she specifically recommends IgeneX lab in California, a questionable lab that has been investigated because it reports positive results for Lyme disease that can’t be confirmed by other labs.

The CDC says:

…you should only have an immunoblot (such as an FDA-approved Western Blot or striped blot) test done if your blood has already been tested and found reactive with an EIA or IFA.

Second, the IgM Western Blot test result is only meaningful during the first 4 weeks of illness. If you have been infected for longer than 4-6 weeks and the IgG Western Blot is still negative, it is highly likely that the IgM result is incorrect (e.g., a false positive). This does not mean that you are not ill, but it does suggest that the cause of illness is something other than the Lyme disease bacterium.

Who is Cohen?

Suzy Cohen bills herself as “America’s Pharmacist”. She has a syndicated column and has written several books. She is “passionate about natural medicine” and promotes a number of nonsensical treatments, from Bach flower remedies to coffee enemas to acupuncture for tinnitus. An example of her spurious reasoning:

Antibiotics are actually derived from mold/fungus so it’s recommended that you avoid antibiotics if you have any fungal infection or various immune system disorders.

You are known by the company you keep. The usual suspects believe in CLD, including Joseph Mercola, Mike Adams, and Dr. Oz. Dr. Oz is a very agreeable man. He agrees with promoters of psychic surgery. He agrees with every new purveyor of snake oil who comes down the pike, with every new miracle solution for effortless weight loss. And predictably, he agrees with Cohen. He assumes Chronic Lyme Disease exists and is “either a chronic condition or an autoimmune response” or both. He quotes a scientist who says there is no scientific evidence for CLD; but he chooses to disregard him and believe Horowitz instead. Oz supports certain supplements to strengthen the body’s ability to repair itself: vitamin B12, coenzyme Q10, chromium, folate, omega-3 fatty acids, and herbs such as Rhodiola rosea.

There is even a Hollywood movie and proposed legislation targeting the evil establishment that is allegedly suppressing these new discoveries.

Conclusion: Chronic Lyme probably doesn’t exist

The belief that chronic Lyme disease exists is not supported by the evidence. It is a disservice to patients with unexplained symptoms to paste that label on them and treat them with potentially harmful long-term antibiotics. They are suffering, and they deserve our compassion and the best that science-based medicine has to offer, not bogus treatments by charlatans or well-meaning but misguided LLMDs.