What do you do when you are bitten by a tick?
A patient pulled a tick off a thigh 10 months ago. He watched for a rash or other symptoms. Nothing happened and the incident was quickly of sight, out of his mind. Three to four months later he started to generally feel crummy, tired and achy. He thought he was just run down, probably just stress at work and at home. He was confident things would soon clear. But they didn’t. The fatigue turned into bone crushing exhaustion. He found he was losing his mental edge. This former marathon runner was finding it hard to get out of bed; his ability to think clearly and his short term memory were increasingly impaired. He scheduled a routine physical with his family doctor and requested a Lyme test. His doctor informed him that everything looked good except the Lyme test which was positive. The GP ordered 3 weeks of doxycycline. The treatment did not help at all. He returned to his family doc who said he was not surprised the treatment failed but there was nothing more he could do. The doc said that the 3-week therapy was all the CDC would allow. After cajoling, the primary care physician agreed to prescribe an additional 2-week course of doxy but warned it would not help. The prediction came true.
I saw the patient a couple of weeks ago as he weakly limped into my office having trouble getting onto the examination table. He admitted to increasing confusion and bouts of disorientation.
Where did the notion that the CDC only allows 3 weeks of doxycycline come from? How did the prescient physician know another 2 weeks of doxy was not going to help?
The CDC links with its strategic partner, the IDSA. The IDSA wrote guidelines 10 years ago which it still apparently clings to. Let’s see – the spirochete responsible for Lyme disease was discovered in 1982: for all intents and purposes the disease we know is 34 years old. Therefore, guidelines written 10 years ago were penned without the benefit of knowledge garnered during the entire last third of the disease’s life.
The guidelines include “facts” which we now know to be clearly incorrect. For example, the documents states there is no scientific plausibility for the notion that post-Lyme syndrome is due to persistence of organisms. The last NIH sponsored study by Fallon which suggests organisms persist was not published until 2007. The lead author believes in persistence. Animal studies in mice, dogs and primates support persistence. Test tube studies support persistence. Even a xenodiagnoses study recently showed that pristine ticks can acquire Lyme infection from humans with early Lyme previously treated by CDC guidelines. Most of this evidence was not available in 2006.
The IDSA guidelines do not discuss a clinical scenario like the one discussed in the patient’s history. The guidelines strangely discuss acrodermatitis and lymphocytoma, rare conditions known only to exist in Europe caused by species of Borrelia not found in North America. The guidelines, written with a didactic, professorial flare, were out of touch will the realities of clinical Lyme disease in America at the time they were written.
The guidelines do make a distinction between early Lyme and late stage Lyme, especially when it involves the central nervous system.
The patient’s clinical course most closely resembles the late stage, central nervous system involvement type. The guidelines recommend that 3-4 weeks of intravenous Rocephin be considered (along with a spinal tap). The 21 days of doxycycline is not what the guidelines recommended for the patient. The family doctor was confused. (who wouldn’t be?) The guidelines state that only partial resolution of symptoms should be expected and that the impulse to prescribe longer courses of therapy be stifled. This reasoning should be questioned in the face of clear and convincing evidence of Lyme persistence.
To summarize: The family doctor mistakenly thought that the CDC would only allow a 3-week course of doxycycline and the doctor knew that treatment was destined to fail, even when extended by a couple of weeks. I assume this understanding was the result of years of clinical experience. (The CDC does not have the authority to control a doctor's prescriptions). The IDSA guidelines, linked to the CDC, probably recommended a course of intravenous therapy for this patient, not the 3 weeks of doxycycline. What is clear is that the obsolete documented warned doctors the therapy would not work (only be partially effective).
Actually the IDSA guidelines were deleted from the United States DHHS guidelines clearinghouse because they are more than 10 years old. The only listed, vetted and currently active guidelines are those written by ILADS.
Unfortunately, the CDC, IDSA and the institutions of American Medicine do not recognize ILADS.
From the perspective of mainstream medicine these guidelines do not exist. In the absence of guidelines, the system tells us answers must come from the appropriate vetted experts: Board Certified Infectious disease specialist.
Doctors call LLMDs do not exist according to mainstream medicine.
The Lyme paradigm war has been raging for decades and shows few signs of letting up any time soon.
This patient in fact saw an Infectious Diseases expert before seeing me. The expert said the patient never had Lyme disease in the first place because the test results showed IgM antibodies not IgG antibodies. This misconception is discussed elsewhere in my blogs, somewhat exhaustively. The patient disagreed with the assessment, as do I.
The system predictably got it wrong for a number of reasons, not within the scope of this discussion.
A recent book written by Afrin implores us to “Never Bet Against Occam.” The theorem informs us that the solution (correct hypothesis) to a problem is generally the simplest one: the one requiring the fewest number of assumptions.
The expert made a bad bet.
The patient was bitten by a tick and got sick. Occam informs us the patient has Lyme disease or something that looks and acts a whole lot like it.
This brings us back to the original question. What do you do if you are bitten by a tick?
The answer has to be to take antibiotics for some duration, in hopes of preventing something like the disaster that befell this patient. The correct regimen is unknown and is a matter of discussion and opinion. But, the correct answer to the question is NOT: do nothing and wait to see if a rash appears.
A long, difficult journey likely awaits the unfortunate patient who, largely based on widely disseminated misinformation, made the wrong choice.