May 24, 2022

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Opinion | Seeking Cures for Chronic Illness

To the Editor:

Re “How I Became a Sick Person” (column, Oct. 24), “How I Became a Science Experiment” (Oct. 31) and “How I Became Extremely Open-Minded” (Nov. 7):

As a physician who treats Lyme disease, I would like to both commend and challenge Ross Douthat on his three columns dealing with his own alleged chronic Lyme disease.

I would commend him on his articulate observations of people with chronic, poorly understood illnesses, and the accompanying frustrations in dealing with mainstream medicine.

On the other hand, he is treading on thin ice by describing and implicitly endorsing some potentially dangerous practices without scientific backing. He admits to testing negative for Lyme disease. Does he even have Lyme disease? In my work, I encountered many patients with other illnesses, such as fibromyalgia, chronic fatigue syndrome and various inflammatory disorders who were convinced that they had Lyme disease.

The danger there is that these patients were not taking effective medication for their real disorder, and were exposed to unnecessary interventions that carried some risk. Some people can die from prolonged use of antibiotics, especially intravenous antibiotics.

That said, Mr. Douthat raises the real concern that people with vague chronic complaints are often dismissed by the medical establishment. This notion is, fortunately, changing, as we strive to treat symptoms and support individuals who do not neatly fit into one diagnostic box.

Lawrence Zemel
Bloomfield, Conn.

To the Editor:

Ross Douthat’s columns resonated with my own experience.

In 2004, I descended into a world of physical pain that I never knew existed when I was diagnosed with an autoimmune disease. Pain made sleep impossible, which took a toll. I began to seriously fail at a fulfilling and demanding job.

I quit my job, changed doctors and became open-minded. A combination of prescribed medication and additional therapies allowed me to resume a productive and relatively pain-free life.

I once told a doctor that I felt fortunate that my chronic disease was treatable — after all, I did not have cancer. Her reply shocked me: “Chronic disease is worse than cancer. At least with cancer, you will heal or die. But chronic disease means you have no control; you’ll face uncertainty, pain and disability until the day you die.”

Mr. Douthat is correct: There are “a lot of strange surprises lurking deep below the not-entirely-solid earth.”

Patty Cook
Prairie Village, Kan.

To the Editor:

Understanding the scientific method and how evidence-based medicine works is important. The fact that Ross Douthat tried the Rife machine (which emits electromagnetic waves) and it worked is correlation, not causation.

A great example is back pain. Many people experience back pain and will report that one treatment or another was successful (if any were at all). The data to date is not great for surgery, and many patients get better with therapy or just with the passage of time. Whatever they were doing when it finally resolved is then observed to be the “cure” — whether chiropractic, acupuncture or other treatments.

Unfortunately, I view Mr. Douthat’s story to be one of “how I became desperate,” not open-minded. If Mr. Douthat is convinced his treatment helped him, he should use the bully pulpit he has to push for a trial at a reputable center where others are suffering as he had. That would settle the question.

David J. Melvin
Chester, N.J.
The writer is a strategist and market research expert consulting with pharmaceutical companies.

To the Editor:

Ross Douthat contrasts his therapeutic experiments with the “empirical” science-based approach of conventional medicine. He need not be so apologetic. While we benefit from rigorous F.D.A. and C.D.C. studies of drugs and protocols, the dirty secret of much medical practice today is how often patients are essentially experimented on when doctors evaluate and prescribe for them. There’s a good deal more “let’s try this and see if it works” than the medical establishment admits to.

As for diagnosis, one has only to read Dr. Lisa Sanders’s “Diagnosis” columns in The Times Magazine to see how often patients are ferried through an essentially speculative odyssey combining guesswork and experimentation, often receiving the right treatment only as a matter of chance that someone on the team happened to have seen the condition somewhere once. Not to mention that about 20 percent of diagnoses of serious diseases are flat-out wrong and may initiate therapies that do harm.

The medical establishment should be more willing to admit that Mr. Douthat’s slow recognition of patterns in his case is not that far off from its own frequent serial experimentation.

Mary Robertson
Shelburne Falls, Mass.

To the Editor:

Ross Douthat’s essays on his health struggles are inspiring and brave. It is unfortunate that he had such difficulty finding help. Many physicians are open-minded about alternative therapies even while supporting traditional treatments. Several medical schools integrate complementary and alternative medicine into their curriculums. Even the experts recognize that we do not understand the disease process in every patient.

The National Institutes of Health supports research into complementary health and also serves as a source of information: The N.I.H. has an Undiagnosed Diseases Program that focuses on people with chronic diseases that have eluded diagnosis. Help is available for patients suffering from unusual and chronic diseases.

Daniel Remick
The writer is a professor of pathology and lab medicine at the Boston University School of Medicine.

To the Editor:

The series of Opinion articles by Ross Douthat are just that: opinion. His assertion of chronic illness and of becoming a “science experiment” based on self-diagnosed Lyme disease is pure anecdote and is not supported by any scientific evidence. His claim of having Lyme disease is not consistent with either his clinical manifestations or his laboratory test results. While we are happy that his unexplained illness has resolved, it clearly was not due to Lyme disease.

We are concerned about readers who might accept his story and pursue a similar course of potentially harmful (and expensive) regimens to treat nonexistent Lyme disease.

There is a reason there are controls in science experiments: In clinical trials 40 percent of patients with complaints similar to Mr. Douthat’s who received long-term IV antibiotics improved … but so did 36 percent of patients who received a saline placebo. Unnecessary antibiotic use can promote resistant bacteria, potentially affecting the health of everyone.

Lyme disease should not be the default diagnosis for patients with medically unexplained symptoms. Dismissing scientific evidence can have disastrous public health consequences, as we have seen during the Covid pandemic.

Eugene D. Shapiro
Durland Fish
New Haven, Conn.
Dr. Shapiro is a professor of pediatrics and of epidemiology and Dr. Fish is a professor emeritus of epidemiology at the Yale School of Public Health and the Yale School of Medicine.

To the Editor:

I can only hope that Ross Douthat’s way-too-long battle with what he believes is Lyme disease is at bay. For my own part, having just ended another 21-day regimen of antibiotics requiring an empty stomach two hours before and after ingesting, I have just enjoyed my first breakfast in a month.

My test results don’t even confirm “real Lyme,” as they don’t quite meet the numbers required for the current agreed-upon definition of this syndrome. Yet, I feel awful. Mr. Douthat, your understanding of the complexities of diagnosing and treating this tick-borne pest was most helpful. Even better, your encouragement to think out of the “medical box” will spur me to do the same.

Virginia Decker
Newport, R.I.

To the Editor:

I am troubled by Ross Douthat’s series about his terrible illness on many levels. Foremost is sadness for the suffering he has endured, and the unfortunate limits of Western medicine to help him.

In my career as a family doctor, I encountered many patients with poorly understood chronic illnesses. It is a great shock to patients, and a huge frustration to providers, when the limits of medical knowledge are encountered.

As providers, we wish to treat as much as possible with evidence-based treatments. These are determined by employing carefully designed studies using an adequate number of patients and statistical analyses that can point to treatments that are effective beyond chance alone. Mr. Douthat’s attempts at self “research” and treatment are simply an uncontrolled experiment.

Especially with chronic diseases marked by fluctuating symptoms and perhaps gradual resolution, it may be impossible to know what may have helped or hurt. In the end, Mr. Douthat might have recovered without any of his self-administered treatments — we’ll never know.

In subjecting himself to the prolonged use of antibiotics, he surely disrupted his microbiome, put himself at risk for a serious infection with C. difficile, and exposed himself to possible harmful risks of antibiotics such as liver or kidney damage. He might have also contributed to the societal harm of promoting antibiotic-resistant bacteria.

Yes, it is important for patients to take an active role in their treatments and recoveries; to seek information about their disease through legitimate sources; to bring to their provider’s attention information possibly unknown to the provider; and to seek referral to specialists when appropriate. But “reckless” treatment of oneself: no.

Carol Klein
Chapel Hill, N.C.