Critique of Medford Tribune “news” article on Lyme Disease

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:

SkepticalRaptor blog – “CHRONIC LYME DISEASE MYTH – REVIEWING THE EVIDENCE”

The National Institute of Allergy and Infectious Diseases (NIAID) – Chronic Lyme Disease

Medscape – New CDC/FDA Warning Against Unapproved Lyme Culture Test”

CDC – Notice to Readers: Caution Regarding Testing for Lyme Disease

CDC – Concerns Regarding a New Culture Method for Borrelia burgdorferi Not Approved for the Diagnosis of Lyme Disease

The Infectious Diseases Society of America (IDSA) –  Videos about Lyme and Chronic Lyme

CDC – Post-Treatment Lyme Disease Syndrome

The Daily Beast – “Predator Doctors Take Advantage of Patients With ‘Chronic Lyme’ Scam

Science Based Medicine – “Does Everybody Have Chronic Lyme Disease? Does Anyone?”

Science Based Medicine – “Lemons and Lyme: Bogus tests and dangerous treatments of the Lyme-literati”

Quackwatch – “Lyme Disease: Questionable Diagnosis and Treatment”

Respectful Insolence article by “Orac” (Dr. Gorski) – “Deaths and Complications Due to Treating the Fake Disease Known as Chronic Lyme Disease

Science Based Medicne – “Chronic Lyme Disease – Another Negative Study”

Advertisements
This entry was posted in Chronic Lyme Disease and tagged , . Bookmark the permalink.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s