More and more people are being misdiagnosed with “chronic Lyme disease,” a medically unrecognized condition that encompasses (pdf) “a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection.” A whole industry of chronic Lyme disease treatments have arisen over the past few years to treat this pseudomedical condition.
On the other hand, post-treatment Lyme disease syndrome (PTLDS) describes a set of persistent symptoms that arise after successful treatment of the Lyme disease. The symptoms of “chronic Lyme” are generic and non-specific “symptoms of life.”
Chronic Lyme disease treatments include mostly alternative medicine therapies, especially controversial and harmful long-term antibiotic therapy, particularly intravenous antibiotics. The CDC specifically disputes the effectiveness of long-term use of antibiotics to treat Lyme disease.
A new report from the CDC examined chronic Lyme disease treatments, and found that they are expensive, that they don’t work, and that they can be dangerous. Let’s take a look at that study.
What is Lyme disease?
Lyme disease is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia. Of the three species, Borrelia burgdorferi is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii are more prevalent in Europe. The disease is named after the towns of Lyme and Old Lyme, Connecticut, where a number of cases were initially identified in 1975.
Borrelia is transmitted to humans when bitten by infected ticks belonging to a few species of the genus Ixodes, called “hard bodied” ticks. Although deer ticks, Ixodes scapularis, Ixodes pacificus, or Ixodes ricinus, are commonly considered to be the vectors for Borrelia infection, some of the other species in the Ixodes genus can transmit the disease. Lyme disease is the most common tick-borne disease in the United States, and it appears to be spreading far outside of the northeastern USA.
The initial symptoms of Lyme disease include fever, headache, fatigue, depression, and a circular skin rash called erythema migrans (EM). If the Borrelia infection is not treated quickly, later symptoms may involve the joints, heart, and central nervous system. There is generally only one known treatment for the infection–antibiotics including doxycycline, amoxicillin, and cefuroxime. The symptoms usually disappear after antibiotic treatment.
The recommended treatment is generally a two-to-four-week course of antibiotics. The CDC estimates about 300,000 people are diagnosed with Lyme disease each year, and the incidence of the disease has increased over the years.
The myth of chronic Lyme disease treatments
From this rather straightforward disease and treatment modalities, a whole industry has arisen around chronic Lyme disease treatments – they claim that the Lyme disease is never really killed by antibiotics, and it persists for months or years. Let’s look at the evidence.
The problem with delayed or inadequate treatment of Lyme disease is that it can lead to the more serious symptoms, which can be disabling and difficult to treat. Difficult, but science-based medicine provides sufficient evidence that it can be successfully treated, especially with antibiotics.
And this is where the pseudoscience begins. There is a vocal group, the International Lyme And Associated Diseases Society (ILADS), made up of patients, doctors and other advocates, who are pushing a belief that the Borrelia bacteria can hide out in the body and persist even after treatment, causing a vague list of symptoms, from night sweats and depression to back pain and vertigo. They call this disorder by the catchy name, chronic Lyme disease.
This group, and others who share this belief, vehemently argue that a cure requires not weeks but months or years of strong antibiotics. And they also believe that the disease sometimes just goes into remission, with frequent relapses.
In 2006, a group of highly respected experts in management of infectious diseases was empaneled by the Infectious Diseases Society of America (IDSA) to determine the appropriate guidelines for the treatment of Lyme disease. They did not include chronic Lyme disease treatments, since there was no evidence to establish the existence of the disease, and because long-term usage of antibiotics can be dangerous. The CDC has concurred with this guideline for the last decade.
However, ILADS dismisses the IDSA recommendations because it contradicts the pseudomedicine beliefs of the chronic Lyme disease advocates. In fact, ILADS goes to great lengths to refute the IDSA guidelines by stating that, “different guideline panels reviewing the same evidence can develop disparate recommendations that reflect the underlying values of the panel members, which may result in conflicting guidelines.” There’s one problem with that statement – in fact, the evidence positively affirms that chronic Lyme disease does not exist.
Unorthodox pseudomedical therapies for chronic Lyme disease include intravenous infusions of hydrogen peroxide, electromagnetic frequency treatments, garlic supplements, heavy metal chelation, and even stem cell transplants. It’s almost like they went to the magical handbook of junk medicine to pull out every treatment used by alternative medicine hawkers.
And despite the lack of evidence that chronic Lyme disease actually exists, the severity and extent of chronic Lyme disease treatments has increased significantly over the past few years. Many of the pseudomedical treatments, including years of intravenous antibiotics, have not shown any evidence of effectiveness. In fact, many studies have shown that these prolonged antibiotic treatments can cause serious harm, even death.
Chronic Lyme disease treatments – the study
A new study published in the Morbidity and Mortality Weekly Report (MMWR), by NS Marzec et al., reviewed five patient cases where typical chronic Lyme disease treatments were employed by practitioners who sell their services in this area. I’m not generally a fan of case studies, but if properly investigated, they can be cautionary tales about the consequences and dangers of improper diagnosis and treatment of “chronic Lyme disease.” Let’s take a look at each of the cases.
A woman in her late 30’s presented with fatigue and joint pain. She received a diagnosis of chronic Lyme disease from her physician. She was given multiple courses of oral antibiotics, but her symptoms worsened. She was then placed on intravenous antibiotic treatment using a peripherally inserted central catheter (PICC). After three weeks of IV antibiotic treatment, the patient’s symptoms worsened and she was hospitalized in an intensive care unit, and eventually died. Her death was attributed to septic shock related to the PICC.
This woman died because of an unnecessary treatment, for a nonexistent disease, which lead to a more serious infection.
An adolescent girl sought treatment for years of muscle and joint pain, backaches, headaches, and lethargy. Her physician diagnosed her with chronic fatigue syndrome, for which her symptoms matched. Unfortunately, she sought a second opinion from an alternative medicine clinic, who told her she had chronic Lyme disease.
The girl was treated with four antibiotics for three months, but it was discontinued because of abnormal liver enzyme tests. Three months later, a PICC was placed for IV antibiotics. After an additional two months without improvement, the antibiotics were discontinued, but, the PICC wasn’t removed.
After the antibiotics were discontinued, the patients symptoms worsened. Another alternative medicine clinic recommended another dose of IV antibiotics, but her condition continued to worsen, She was evaluated in the emergency department of the local hospital and admitted to the intensive care unit. Cultures of her blood showed she had blood and PICC-associated bacterial infections, totally unrelated to the Lyme disease. She was treated appropriately, and eventually recovered after several weeks in the hospital.
Once again, this young girl got dangerously sick as a result of improper and dangerous treatment for a nonexistent disease. She had chronic fatigue syndrome, not the pseudomedical chronic Lyme disease.
A woman in her late 40s received multiple insect bites and developed a flulike illness with pain in her arms, legs and back. One year after her symptoms began, she received a diagnosis of Lyme disease based on the standard laboratory tests for a Borrelia infection.
She was treated with two four-week courses of oral doxycycline, which is recommended for patients with arthritis associated with untreated Lyme infection. She later developed fatigue and cognitive difficulties.
Two years after her initial diagnosis, she was told she had chronic Lyme disease based on results of unvalidated tests. She received multiple courses of oral and intravenous antibiotics via a PICC for more than a year. She eventually developed back pain and shortness of breath, and was hospitalized twice after a catheter-related infection spread to her back and spine. After treatment for that infection, her back pain eventually improved.
One woman in her 50s with progressive weakness, swelling and tingling in her extremities was eventually diagnosed with amyotrophic lateral sclerosis (ALS), an incurable disease which is generally fatal within 2-4 years after diagnosis. The woman sought a second opinion and was told she had chronic Lyme disease by an alternative medicine practitioner.
She then received seven months of intensive antimicrobial treatment, which included anti-fungal drugs that are not recommended for treating Lyme disease. Unfortunately, as a result of her progressive ALS, her weakness worsened. She developed an uncontrollable C. difficile infection, with severe abdominal cramps and diarrhea, that persisted for more than two years.
The woman eventually died from complications related to ALS.
A woman in her 60s with a low white blood cell count and degenerative arthritis received intravenous immunoglobulin, or antibodies, every three weeks for more than 10 years. She developed an antibiotic-resistant staph infection in her back that turned into an abscess next to her spine that required surgery to drain.
Let’s be clear. Chronic Lyme disease treatments are dangerous, even deadly. Worse yet, these are “treatments” for a disease that simply does not exist, except in the minds of some individuals who have built a cottage industry making money off of convincing these patients that it does exist.
These cases represent precisely what is wrong with alternative medicine – provide hope for a nonexistent disease with expensive and useless treatments. People died because of this pseudomedicine.
- Baker PJ. Chronic Lyme disease: in defense of the scientific enterprise. FASEB J. 2010 Nov;24(11):4175-7. doi: 10.1096/fj.10-167247. Epub 2010 Jul 14. PubMed PMID: 20631327.
- Bratton RL, Whiteside JW, Hovan MJ, Engle RL, Edwards FD. Diagnosis and treatment of Lyme disease. Mayo Clin Proc. 2008 May;83(5):566-71. doi: 10.4065/83.5.566. Review. PubMed PMID: 18452688.
- Feder HM Jr, Johnson BJ, O’Connell S, Shapiro ED, Steere AC, Wormser GP; Ad Hoc International Lyme Disease Group., Agger WA, Artsob H, Auwaerter P, Dumler JS, Bakken JS, Bockenstedt LK, Green J, Dattwyler RJ, Munoz J, Nadelman RB, Schwartz I, Draper T, McSweegan E, Halperin JJ, Klempner MS, Krause PJ, Mead P, Morshed M, Porwancher R, Radolf JD, Smith RP Jr, Sood S, Weinstein A, Wong SJ, Zemel L. A critical appraisal of “chronic Lyme disease”. N Engl J Med. 2007 Oct 4;357(14):1422-30. Review. Erratum in: N Engl J Med. 2008 Mar 6;358(10):1084. Agger, WA [added]; Artsob, H [added]; Auwaerter, P [added]; Dumler, JS [added]; Bakken, JS [added]; Bockenstedt, LK [added]; Green, J [added]; Dattwyler, RJ [added]; Munoz, J [added]; Nadelman, RB [added]; Schwartz, I [added]; Draper, T [added]; McSweegan, E [added]; Halperin, JJ [added]; Klempner, MS [added]; Krause, PJ [added]; Mead, P[added]; Morshed, M [added]; Porwancher, R [added]; Radolf, JD [added]; Smith RP Jr [added]; Sood, S [added]; Weinstein, A [added]; Wong, SJ [added]; Zemel, L [added]. PubMed PMID: 17914043.
- Lantos PM, Shapiro ED, Auwaerter PG, Baker PJ, Halperin JJ, McSweegan E, Wormser GP. Unorthodox alternative therapies marketed to treat Lyme disease. Clin Infect Dis. 2015 Jun 15;60(12):1776-82. doi: 10.1093/cid/civ186. Epub 2015 Apr 6. Review. PubMed PMID: 25852124; PubMed Central PMCID: PMC4490322.
- Marzec NS, Nelson C, Waldron PR, Blackburn BG, Hosain S, Greenhow T, Green GM, Lomen-Hoerth C, Golden M, Mead PS. Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease – United States.MMWR Morb Mortal Wkly Rep. 2017 Jun 16;66(23):607-609. doi: 10.15585/mmwr.mm6623a3. PubMed PMID: 28617768.
- Wormser GP, Dattwyler RJ, Shapiro ED, Halperin JJ, Steere AC, Klempner MS, Krause PJ, Bakken JS, Strle F, Stanek G, Bockenstedt L, Fish D, Dumler JS, Nadelman RB. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006 Nov 1;43(9):1089-134. Epub 2006 Oct 2. Erratum in: Clin Infect Dis. 2007 Oct 1;45(7):941. PubMed PMID: 17029130.
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