Earlier this month I wrote about some of the people who claim to be Lyme disease experts, and specifically about an article in the Journal of Medical Ethics, and its author. The article was truly horrid, especially when presented in the context of an ethics journal. My ethicist friend weighed in at the time, and now she informs us that the journal has printed a response.
Lyme disease is a relatively common bacterial infection acquired from the bite of a tick. Many people who are infected develop a characteristic rash, and if they are treated at that point, that's the end of that. If they are not, some go on to develop swollen, painful joints (usually a knee), or some neurological symptoms such as Bell's Palsy. There is a group of folks out there who believe that there is also an entity which they call "chronic Lyme disease" (CLD). This is often treated with long-term antibiotics by self-anointed "Lyme-literate doctors". What are the symptoms of CLD? This list is typical:
The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
# Rash at site of bite
# Rashes on other parts of your body
# Rash basically circular, oval and spreading out (more generalized)
# Raised rash, disappearing and recurring
* Head, Face, Neck
# Unexplained hair loss
# Headache, mild or severe, Seizures
# Pressure in head, white matter lesions in brain (MRI)
# Twitching of facial or other muscles
# Facial paralysis (Bell's Palsy, Horner's syndrome)
# Tingling of nose, (tip of) tongue, cheek or facial flushing
# Stiff or painful neck
# Jaw pain or stiffness
# Dental problems (unexplained)
# Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
# Double or blurry vision
# Increased floating spots
# Pain in eyes, or swelling around eyes
# Oversensitivity to light
# Flashing lights/Peripheral waves/phantom images in corner of eyes
# Decreased hearing in one or both ears, plugged ears
# Buzzing in ears
# Pain in ears, oversensitivity to sounds
# Ringing in one or both ears
* Digestive and Excretory Systems
# Irritable bladder (trouble starting, stopping) or Interstitial cystitis
# Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
* Musculoskeletal System
# Bone pain, joint pain or swelling, carpal tunnel syndrome
# Stiffness of joints, back, neck, tennis elbow
# Muscle pain or cramps, (Fibromyalgia)
* Respiratory and Circulatory Systems
# Shortness of breath, can't get full/satisfying breath, cough
# Chest pain or rib soreness
# Night sweats or unexplained chills
# Heart palpitations or extra beats
# Endocarditis, Heart blockage
* Neurologic System
# Tremors or unexplained shaking
# Burning or stabbing sensations in the body
# Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
# Pressure in the head
# Numbness in body, tingling, pinpricks
# Poor balance, dizziness, difficulty walking
# Increased motion sickness
# Lightheadedness, wooziness
* Psychological well-being
# Mood swings, irritability, bi-polar disorder
# Unusual depression
# Disorientation (getting or feeling lost)
# Feeling as if you are losing your mind
# Over-emotional reactions, crying easily
# Too much sleep, or insomnia
# Difficulty falling or staying asleep
# Narcolepsy, sleep apnea
# Panic attacks, anxiety
* Mental Capability
# Memory loss (short or long term)
# Confusion, difficulty in thinking
# Difficulty with concentration or reading
# Going to the wrong place
# Speech difficulty (slurred or slow)
# Stammering speech
# Forgetting how to perform simple tasks
* Reproduction and Sexuality
# Loss of sex drive
# Sexual dysfunction
# Unexplained menstral pain, irregularity
# Unexplained breast pain, discharge
# Testicular or pelvic pain
* General Well-being
# Phantom smells
# Unexplained weight gain, loss
# Extreme fatigue
# Swollen glands/lymph nodes
# Unexplained fevers (high or low grade)
# Continual infections (sinus, kidney, eye, etc.)
# Symptoms seem to change, come and go
# Pain migrates (moves) to different body parts
# Early on, experienced a "flu-like" illness, after which you have not since felt well.
# Low body temperature
# Allergies/Chemical sensitivities
# Increased effect from alcohol and possible worse hangover
This particular site suggests that twenty "yes"es is a possible case. Now, this kind of "Chinese menu" is not unheard of in medicine, but usually it's been validated in some way rather than having emerged de novo from someone's rectum (which is probably also a sign of CLD).
So what we have is a group of people who are suffering, a group of self-appointed medical experts, a disease whose description can fit anyone, and a lot of yelling.
The "guideline" debate
The Infectious Disease Society of America issues treatment guidelines for, well, infectious diseases. One of these is Lyme disease. This is a source of contention for the CLD folks. Many of these so-called experts give long courses of intravenous antibiotics and other unconventional therapies to the patients whom they've identified as having CLD. This bothers the CLD folks---they say that the guidelines were developed improperly and that they have so much influence on insurers that they effectively prevent people from obtaining treatment. The truth is somewhat different.
What is and isn't recommended
In their guidelines, the IDSA does, in fact, recommend antibiotics for some of the late manifestations of Lyme disease, for example:
Late neurologic Lyme disease: Adult patients with late neurologic disease affecting the central or peripheral nervous system should be treated with intravenous ceftriaxone for 2 to 4 weeks (B‐II). Cefotaxime or penicillin G administered intravenously is an alternative (B‐II). Response to treatment is usually slow and may be incomplete. Re‐treatment is not recommended unless relapse is shown by reliable objective measures. Ceftriaxone is also recommended for children with late neurologic Lyme disease (B‐II). Cefotaxime or penicillin G administered intravenously is an alternative (B‐III). See the recommendations above on the treatment of Lyme meningitis for suggested doses of each of these antimicrobials.
But they do not give carte blanche:
There is no well‐accepted definition of post-Lyme disease syndrome. This has contributed to confusion and controversy and to a lack of firm data on its incidence, prevalence, and pathogenesis. In an attempt to provide a framework for future research on this subject and to reduce diagnostic ambiguity in study populations, a definition for post-Lyme disease syndrome is proposed in these guidelines. Whatever definition is eventually adopted, having once had objective evidence of B. burgdorferi infection must be a condition sine qua non. Furthermore, when laboratory testing is done to support the original diagnosis of Lyme disease, it is essential that it be performed by well‐qualified and reputable laboratories that use recommended and appropriately validated testing methods and interpretive criteria. Unvalidated test methods (such as urine antigen tests or blood microscopy for Borrelia species) should not be used.
There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (6 months) subjective symptoms after recommended treatment regimens for Lyme disease (E‐I).
The "E-I" refers to the quality of the recommendation. "E" means "strongly against", and "I" means the evidence is from more than one properly randomized, controlled trial.
According to the unethical paper in the Journal of Medical Ethics referenced earlier:
One group of doctors, the Infectious Diseases Society of America (IDSA), issued Lyme treatment guidelines in 2000 that promoted a narrow definition of the disease. These guidelines excluded most Lyme patients and denied them treatment for their illness.
This is either ignorance or mendacity. What makes the definition "narrow"? How does it "exclude" people from treatment?
Doctors can treat people however they wish; in fact, even blatant quackery is rarely illegal. If I were to hang out a shingle and start giving IV antibiotics for "chronic Lyme disease", no police would knock on my door, no medical board would yank my license. My conscience, however, would ache. In fact, what the IDSA does is define the disease based on the available science, and give treatment guidelines (which are not binding) based on the available evidence. They do recommend antibiotics in people with the disease, but explicitly exclude people in whom the disease has been diagnosed by strictly subjective means or by means of illegitimate laboratories.
So what are the CLD people whining about?
When the available evidence doesn't support your conclusions, but you are certain you are right, then you have limited choices: either admit that you may be wrong, or find reasons that the evidence as presented is wrong. The CLD folks point out a couple of things. First, they are concerned that the IDSA guidelines are tainted by conflicts of interest (COIs). They have made a very unconvincing case for this. For a conflict of interest to have a deleterious effect it must be significant, and the party with the conflict must be able to benefit from abusing the conflict. No such situation exists. The tortured logic of the CLD advocates is pained, to say the least. They claim that the IDSA ignored evidence, and had COIs that would drive them to create the current guidelines. To quote ethicist Dr. Janet Stemwedel in relation to the JME article:
Here, there is no substantiation of the claim that the IDSA denied these requests for participation. Nor is evidence presented that the panel was designed to include only researchers "known to have a bias against the diagnosis and treatment of Lyme disease" (presumably on the basis of Johnson and Stricker's preferred definition of Lyme disease rather than the definition from the 2000 IDSA guidelines). Nor, for that matter, do Johnson and Stricker cite the papers that present the "evidence of persistent infection or clinical improvement in patients with persistent symptoms of the disease" that the 2006 IDSA panel purportedly ignored.
I don't think there's much disagreement that medical and scientific decisions should not be driven by commercial conflicts of interest. It's a harder question whether we can tell if someone who has commercial interests that create a potential conflict is in fact driven by those interests (and if so, to what extent).
Since the COI arguments are invalid, they need other goalposts to move. One is laboratory tests. CLD doctors work backwards---they make the diagnosis and then dig around for a test to confirm it. In the case of Lyme disease, when they do not get the result they want, they go to other, more "compliant" labs, or they re-interpret traditional test ranges. This is patently dishonest, and is also just bad medicine.
You lack compassion, Doctor
Those of us who speak out against medical "movements" such as CLD or morgellons syndrome are often accused of lacking compassion (and of far, far worse things). This is a straw man argument meant to distract from the real debate. The real question is not whether or not I or anyone else cares about someone's suffering; it's what we do about it. If we respond to someone's suffering and uncertainty by hitching them to a fake diagnosis using all sorts of byzantine chicanery, that is not compassion. Compassion is acknowledging suffering, giving people accurate information even if it isn't what they want to hear, and staying involved with their care.
Uncertainty is part of medicine, part of being human in fact. So is suffering. Both can be mitigated, but neither should be treated with lies.