04 August 2010

Unintended consequences: C. diff death after extended Lyme treatment

The ongoing fight over long-term Lyme disease treatment has to be one of the most ferocious in health care. If you don't live in the Northeast or upper Midwest, Lyme disease may not be on your radar, so here's a super-quick version: There are patients and physicians  who say that Lyme disease symptoms persist following the 28 days of antibiotic treatment that is the standard recommendation of the CDC and the Infectious Diseases Society of America, and also say that patients benefit from additional antibiotic regimens — sometimes IV, sometimes oral — that can last months more. The CDC, IDSA and some other medical authorities say there is no evidence to support these regimens. The ongoing bitterness has extended to antitrust charges by the Connecticut Attorney General that forced a re-evaluation of the IDSA guidelines, which physicians follow and insurance companies refer to when authorizing payment. The disagreements have continued into this year.

I've been curious about the long-term Lyme regimens from the antibiotic-resistance POV: whether giving Lyme patients such long courses of antibiotics would encourage the development or spread of resistant organisms. (NB, I don't know of any research that would answer that question, but if anyone does, cites would be welcome.)

Today, though, I spotted a new paper that describes an unintended consequence I hadn't thought of: the death of a Lyme patient from Clostridium difficile or C.diff, an infection that becomes more likely after long courses of antibiotics.

Quick lesson: C. diff (here's the CDC info page) is a toxin-producing bacteria that causes a life-threatening infection of the gut. It's normally resident in the intestines, but can roar out of control when prolonged courses of antibiotics wipe out the gut's complex and very abundant population of bacteria. (Ed Yong's post from a few days ago has excellent detail on the gut microbiome.) C. diff is rising in incidence, becoming drug-resistant, and also is extraordinarily difficult to eradicate from hospital environments — because it is spore-forming and thus protected against the alcohol in the hand gels that hospitals have encouraged in order to balance the need for hand hygiene with the time consumed by hand washing.

The paper, a letter to Clinical Infectious Diseases by representatives of the Minnesota Department of Health (Holzbauer et al., DOI: 10.1086/654808), describes the experience of a 52-year-old woman who had Lyme-like symptoms for about 5 years. She consulted a doctor in June 2009, was tested for Lyme, and was put on 5 weeks of doxycycline. She got better, but then her symptoms returned, and she sought care from a different physician who prescribed an additional 2- to 4-month course of two other antibiotics.
Five weeks after initiating this therapy, the patient developed diarrhea for 3 days and received a diagnosis of C. difficile colitis. ... The patient was started on oral metronidazole therapy but was hospitalized 2 days later with severe abdominal pain secondary to diffuse colitis and abdominal ascites. The next morning, she experienced cardiac arrest twice and succumbed to cardiac arrest during an emergency [removal of her colon].
I've been talking to Lyme patients recently, including some who decided to take long-term antibiotic regimens. Some of them describe themselves as sick enough to take any risk in an attempt to get better. I wonder whether it's made clear to them how substantial the risks might be.


DemFromCT said...

Tough topic to cover. It has a long history, from death threats to researchers (no kidding) to public demonstrations to fierce arguments on blogs.

I'm a firm believer in the IDSA guidelines, because they are evidence based (new evidence always welcome). And I think the creation of alternative realities is not so very different than what the anti-vaccination community has done. That includes those willing to prey on people's fears by selling unproven remedies that can harm you. Infections from indwelling catheters placed for chronic antibiotics, complications form anesthesia and antibiotic allergic reactions need to be added to the list of potential things that can go wrong.

gramstain said...

Hi Maryn,

Glad that you decided to cover this. Another case worth looking at is:

Patel R, Grogg KL, Edwards WD, Wright AJ, Schwenk NM. Death from inappropriate therapy for Lyme disease. Clin Infect Dis. 2000 Oct;31(4):1107-9.


It can be very hard to communicate that prolonged and inappropriate therapy is not risk-free. We always weigh risks and benefits when prescribing any medication. If there is no benefit (as is certainly the case here), the risk, which is always non-zero, predominates.

Elaine Cullen said...

Clearly the threat of antibiotic treatment risk exists for use of antibiotics for all bacterial infections, not just Lyme Disease. What is interesting is that these risks are rarely brought up for antibiotic treatment for other bacterial infections, including long term prescriptions of antibiotics for conditions such as acne. Lyme disease is a bacterial infection and it has an etiology of cure with a short term course of antibiotics for the majority of patients. In some cases, and in cases where Lyme Disease is past it's early period of infection into secondary or tertiary Lyme Disease, a short course doesn't cure it and longer antibiotic treatment is needed. The Lyme bacterial infection affects numerous parts of the body, including joints and the neurological system, both difficult to treat with antibiotics. Lyme disease is not a benign infection and can cause joint complications and in some cases,disability, blindness,neurological problems including meningitis, brain lesions and seizures, heart problems and other serious consequences.
People are routinely treated with long term antibiotics for all sorts of bacterial infections such as ear infections, all based on clinical diagnosis, and Lyme Disease should be no different. It is true that the risks of antibiotic treatment have to be evaluated, but certainly the risks and problems of Lyme Disease as well have to be evaluated in terms of the risk associated with treatment.

Liz Schmitz said...

Treating any disease can be dangerous, whether it's Lyme, Syphilis, Tuberculosis, or HIV. People with all sorts of conditions have died from medical intervention-does that mean we should stop treating everyone with a disease?

The consequences of Lyme can be brutal -losing the ability to walk, drive, work, play, attend school, take care of a family. Many people lose their homes, as they can no longer work and insurance will not cover their treatment.

IDSA guidelines say chronic Lyme does not exist, despite ample evidence published in credible peer-reviewed journals for years that has documented its existence in animals and man. Numerous scientists and physicians, and professional organizations disagree with IDSA's "take" on Lyme.

According to two reports at the IDSA conference this year, the majority of treatment guidelines for all diseases are based on opinion, not evidence. Evidence-based medicine - it may be cost-saving upfront, but what occurs down the line when the taxpayers must support all the patients left permanently disabled because they didn't receive adequate treatment due to guidelines? The public must consider this quickly: Lyme disease is a huge epidemic. How long before we have millions supported by the government because we didn't take note that Lyme treatment recommendations are based on one side of the science?



A large number of patients report getting better after long-term antibiotic therapy. I personally know Lyme patients who were in wheelchairs, who can now walk and have resumed their lives, after extended antibiotic treatment. Since it's accepted that latent syphilis, also caused by a spirochete, may need months to years of antibiotic treatment, where's the big surprise about Lyme patients responding to the same?

Patients should be allowed treatment options, it should be their choice. Acne patients are prescribed antibiotics for years and nobody bats an eye. To deny treatment to patients suffering from Lyme disease- such a serious bacterial infection- is cruel and inhumane.

Liz Schmitz
Georgia Lyme Disease Assoc.