The Lyme tick
As the saying goes, when you do not have the facts, argue the law. This tried and (?) true approach was successful in New York where a law was passed protecting those who are, shall we say, creative in treating patients with Lyme and ‘chronic’ Lyme.
The bill protects those from investigation of misconduct:
based solely on treatment that is not universally accepted by the medical profession.
The major bone of contention has been extended courses of IV antibiotics for ‘chronic’ Lyme, but there are a wide variety of treatments that may be used by so called “Lyme literate” doctors.
The number of therapies divorced from reality that are offered to Lyme patients is remarkable. I do not know if chronic Lyme patients have greater use of pseudo-medical therapies than other pseudo-diagnoses, but I am impressed by the offerings in a recent review:
Results. More than 30 alternative treatments were identified, which fell into several broad categories: these included oxygen and reactive oxygen therapy; energy and radiation-based therapies; nutritional therapy; chelation and heavy metal therapy; and biological and pharmacological therapies ranging from certain medications without recognized therapeutic effects on Borrelia burgdorgeri to stem cell transplantation. Review of the medical literature did not substantiate efficacy or, in most cases, any rationale for the advertised treatments.
Conclusions. Providers of alternative therapies commonly target patients who believe they have Lyme disease. The efficacy of these unconventional treatments for Lyme disease is not supported by scientific evidence, and in many cases they are potentially harmful.
It’s that time of year when every day I can expect to see at least one patient with a concern about Lyme disease. In Lyme-endemic regions such as Western Massachusetts, where I practice pediatrics, summer brings a steady stream of children to my office with either the classic Lyme rash (erythema chronicum migrans, or ECM), an embedded tick, a history of a tick bite, or non-specific signs or symptoms that may or may not be due to Lyme disease. Sometimes the diagnosis is relatively straightforward. A child is brought in after a parent has pulled off an engorged deer tick, and there is a classic, enlarging ECM rash at the site of the bite. More often the presentation is less clear, requiring detective work and science-based reasoning to make an informed decision and a diagnostic and therapeutic plan based on the best available evidence. Depending on the story, the plan may include immediate treatment without any testing (as in the straightforward case described above), immediate testing without treatment pending test results, or waiting as we watch and see how a rash progresses before doing anything. An example of this latter course of action would be when a patient comes in with a pink swelling at the site of a new tick bite. In this case, it may not be clear if the swelling is a Lyme rash or simply a local reaction to the bite, a much more common occurrence. The classic ECM rash (an enlarging, red, circular, bull’s-eye rash at or near a tick bite) typically develops 1-2 weeks after a tick bite, but can occur anywhere from 3-30 days later. It then expands and darkens over another 1-3 weeks before fading. This classic rash is not the most common rash of Lyme disease, however, as it occurs in only about 30% of cases. Instead, the rash may be uniformly pink or red (or even darker in the center) without the target-like appearance, or may be a linear rash, expanding outward from the tick bite site. In the case of a patient who comes in with a vague, pink swelling within a day few days of a tick bite, we will typically wait and see what happens to the rash. If it is a local reaction, it will likely resolve within another few days. With Lyme disease, the rash will continue to enlarge and declare itself as an ECM rash. Another unclear and not uncommon situation is when a patient comes in with non-specific symptoms such as fatigue, musculoskeletal pains, and headache. If warranted by the history and the physical exam, we may in this case order Lyme testing. This may not give us an answer even if the patient has Lyme disease, because results are often negative in the first few weeks of the disease. In this case, if symptoms persist or evolve, we will repeat the testing in another few weeks at which point true Lyme disease will test positive and can then be treated. The good news is that the treatment of Lyme disease, particularly in the early, localized phase of the disease, is extremely safe and effective with a 14-day course of antibiotics. The testing is also relatively straightforward, with very good sensitivity and specificity when performed correctly. And this is where the bad news comes… (more…)
A deplorable article by Suzy Cohen on Huffington Post is titled “Feel Bad? It Could Be Lyme Unless Proven Otherwise.” It consists of irresponsible fear-mongering about a nonexistent disease. A science-based article would be titled “Feel Bad? It Couldn’t Be Chronic Lyme Disease Because CLD Is Nonexistent Until Proven Otherwise.”
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?) (more…)
Chronic Lyme disease almost certainly does not exist, but a growing number of doctors are diagnosing and treating it with long-term antibiotics and other remedies. They are known as LLMDs (“Lyme Literate” medical doctors). This subject has been covered repeatedly on Science-Based Medicine, here, here, here, here, and elsewhere.
I have a correspondent who joined a Yahoo group for Lyme disease (Northern VA Lyme). She shared with me a message to that group that listed the LLMDs in their area. On that list was Patricia Slusher, ND, CN (naturopath, certified nutritionist). Other messages confirmed that Slusher is treating patients for “chronic Lyme disease.” One message specifically described the treatments prescribed by Patricia Slusher:
For the first 3 weeks my Lyme protocol consist of taking 3 supplements from Percision [sic] Herbs, LLC; LYX, Spirex and Puricell and spending 30 minutes 2X a week getting a Quad Zapper treatment. After the 3 weeks, my test for Lyme was negative. But bartonella was still positive. She has changed my supplements to taking Drainage-tone and Amoeba-chord by energetix and 15 minutes 1x a week of the Quad Zapper to fight the bartonella. I have doing [sic] this protocol for approx. 3 weeks. Along with this protocol I am on several other homeopathic supplements to address some of my symptoms, swollen lymph nodes, nerve pain (feels like someone is stabbing me with an ice pick or bugs crawling on me), numbness, inflammation, low vitamin D, etc. Also, supplements to raise the functioning level of my adrenals and kidneys. [Note: the Quad Zapper is a version of one of the infamous Hulda Clark’s phony devices.]
This sounded like quackery above and beyond what most LLMDs and even most naturopaths would offer, so I did some research. I learned some things. (more…)