I recently read an article on the Medford Mail Tribune website (also serving the readership of my community, Ashland, OR), “Lyme Warriors Fight Back,” that compels me to share my reaction.
Raising awareness of Lyme disease is important, especially the need for prevention of tick bites and for early treatment. But while my heart goes out to people suffering with crippling symptoms that aren’t easily explained or treatable by the medical establishment, I found this Tribune article (and other similar ones I discovered later) to be so one-sided and lacking in scrutiny and investigation that I fear it is potentially harmful to the public.
I got the impression that the reporter may not realize that there is a big difference between what is understood about “Lyme disease” (LD) by mainstream experts and what is often referred to as “CHRONIC Lyme Disease” (CLD).
“Lyme disease” is a diagnostic term, widely recognized by the scientific and medical community, that describes a multi-stage, tick-borne illness. It is usually successfully treated with about 2-4 weeks of oral antibiotics if caught early, weeks longer and sometimes intravenously if late stage. The CDC and other expert organizations say the disease can result in some serious long-lasting symptoms and damage with inadequate or delayed antibiotic treatment (usually resolving within months, once treated) and that “Post Treatment Lyme Diseases Syndrome” is NOT likely caused by hidden remaining active infection.
On the other hand, the concept of “CHRONIC Lyme disease” is generally regarded by mainstream experts and organizations as largely speculative and scientifically unsupported. Proponents purport that a very wide variety (hundreds!) of relentless and reoccurring, usually nonspecific symptoms (E.G. chronic fatigue, severe headaches, muscle and joint pain/disability, cognitive deficits, jerking, numbness, paralysis, etc.) are caused by hidden, persistent, active tick-borne infections and co-infections.
They say these infections cannot always be detected by current FDA approved/cleared laboratory tests, so they turn to unapproved/uncleared specialty labs. The reporter mentions someone awaiting results of an 18-week culture test but without exploring the controversy surrounding culture tests; the CDC and FDA issued a warning.
Advocates insist that CLD requires large, extended doses of antibiotics — sometimes for many years, often intravenously. The reporter mentions only in passing that the use of prolonged antibiotics is “controversial” for LD as the risks may outweigh the harm; she then quickly dismisses the risks with a parent’s testimonial that it relieved 85% of her son’s symptom. Testimonials are not evidence of effectiveness or safety.
She neglected to report that several quality scientific studies found no benefit of extended antibiotic use for this condition when compared to a placebo, while it increases serious adverse effects and raises concerns of antibiotic resistance due to overuse.
But what about the recommended treatments for CLD symptoms, besides the highly controversial antibiotic use? Unfortunately, desperation for a clear diagnosis and relief from debilitating symptoms has (as with many other poorly understood or hard to treat conditions) opened the door to a myriad of unsubstantiated, non FDA approved/cleared diagnostic tests and non evidence-based (“alternative”) treatments.
The reporter mentions a German clinic that alleges a 99% treatment success rate treating LD (I’m sure she meant CLD). Really? That’s incredible! (by which I mean: not very credible). Did the reporter attempt to discover the validity of this clinic’s diagnostic methods and the safety/efficacy of their treatments, clinical trials published in peer-reviewed journals? Any data at all? A website? How about a name?
A commenter gave the location and some Google searching revealed the likely clinic and other popular German Lyme clinics. I feel confident saying they are by no means offering advanced evidence-based methods that the US just hasn’t yet recognized or approved due to our experts’ lack of Lyme literacy, as the article makes it sound.
In fact, I see some very questionable, unscientific (“alternative”) diagnostic and treatment practices for Lyme disease: Biophoton device therapy, “Biotensor,” (a dowsing/divining contraption that made me laugh hearing about it), oxygen/ozone therapy, hyperthermia therapy, homeopathy, high dose vitamin C infusion, chelation, and on and on.
The article reinforces the belief that mainstream infectious disease experts and doctors, or anyone who disagrees with the CLD notion, are closed-minded or just plain ignorant — not “Lyme literate.” Wow, I find that very insulting to all the caring and bright experts and medical doctors who are quite literate about Lyme disease but perhaps don’t buy into the unsubstantiated CLD notion and don’t want to misdirect their patients.
I hope the Medford Mail Tribune will publish evidence-based articles on Lyme disease soon and stop promoting the dubious CLD movement as if it is more knowledgeable and cutting edge. This is especially important considering that it’s diagnostics and treatments often involves children, huge expense, and collecting donations.
Here are just a few links to learn about the issue and controversy: