Here be dragons large map

As a pediatrician working in a relatively sCAM-inclined region, it is not uncommon to find myself taking care of patients who are also being followed by so-called alternative medicine practitioners. This often creates a major obstacle to providing appropriate care and establishing an atmosphere of mutual trust in the provider-patient/parent relationship. It usually makes me feel like I’m battling invisible serpents in a sea of sCAM.

While these double-dipping parents utilize a variety of sCAM providers, including naturopaths, homeopaths, chiropractors, and a smattering of “holistic healers”, most are taking their children to one of a few “wellness” centers near my practice where they are seen by actual medical doctors practicing so-called “integrative medicine”. Many of these children have vague, chronic, usually non-specific complaints that are difficult to explain and thus to treat. Some have behavioral and mental health problems, or neurodevelopmental conditions such as autism for which parents are seeking explanations and treatments.

What I find to be a common theme with these patients is that they and their parents are summarily taken advantage of by their alternative care providers when they are given a fictitious diagnosis and treated with a variety of useless potions, elixers, and false hopes. Often, parents bring their children to these providers because they are frustrated by their child’s chronic complaints of fatigue, pain, or other somatic issues that have eluded a satisfactory diagnosis or treatment. Invariably, the diagnosis that has remained so elusive to me is quickly found and treated by these much more “holistic” and open-minded providers. In fact, I have never seen a consultation note from one of these providers indicating any uncertainty as to diagnosis or treatment regimen. Typically a large battery of expensive, inappropriate, and sometimes outright fraudulent lab tests is ordered, often from equally questionable laboratories. Again, there are invariably interesting findings prompting tailored and bizarre treatments. In typical red-flag sCAM fashion, some of these providers have their own supplement store, available online only to their patients, prominently displayed on their website. These providers are perceived as being more holistically informed about health and wellness then “conventional” doctors like myself, as if there are two distinct ways of treating illness and maintaining health…as if there is truly such a thing as alternative medicine.

It can be very difficult to manage patients who are being simultaneously “treated” by such providers. Sometimes the treatments complicate or confuse the picture, but it always indicates a failure of trust in the “conventional” method of practice, which is science and evidence based, and in science itself.

Below are a few examples of patients cared for by my practice and simultaneously followed by alternative medicine practitioners. They provide a good picture of just how problematic these co-practitioners can be. No names or identifying information are revealed.

Case 1: an 8-year-old girl with autistic spectrum disorder, food and pollen allergies, and occasional constipation

AB is an 8-year-old girl with autistic spectrum disorder, food and pollen allergies, and occasional constipation. At a recent health maintenance visit we discovered that she had been taken to an alternative medicine provider twice. As is typical of these sCAM visits, no visit documentation was sent to us, the patient’s primary care providers. This line of communication between health care providers is critical to providing integrated and safe care to shared patients. It is ironic that these self-described holistic practitioners fail to understand this hugely important, holistic aspect of patient care. Once we requested and received copies of these visit notes, it became clear why they may not want us to see them. After a brief review of the patient’s history, including her history of pollen and food allergies and some constipation, the History of Present Illness section of the note states:

Additionally, AB presents with unspecified immune disorder and a history of malabsorption syndrome.

This is unusual for two reasons. First, the history recounted in the note (presumably obtained from the parent, though the historian is not identified), made no mention of any gastrointestinal or immunological issues. It is true that the patient did have a history of some food and environmental allergies, which happen to involve the immune and gastrointestinal systems. However, the patient did not have malabsorption syndrome (an inability to absorb certain nutrients producing abdominal complaints, diarrhea, and sometimes failure to be adequately nourished), nor did she have an immune disorder, unless you consider allergy an immune disorder, which no one does. The note concludes with the diagnoses:

  1. Allergic rhinitis
  2. Unspecified immune disorder
  3. Malabsorption syndrome

Again, though she did have some allergies, the patient did not have these other two conditions. For these non-existent diagnoses, the following battery of lab tests was ordered:

  • IgA, IgE, IgM, IgG, IgG subclasses

These are tests of the different classes of immunoglobulins. Sometimes we order these when we are assessing immune function if an immunodeficiency is suspected (it isn’t in this patient). IgE is measured if there is a real question of whether an allergy is present. This had already been measured in this patient, and we already knew she had allergies.

  • Assays for copper, magnesium, and zinc

Rare deficiencies can exist, and dangerous elevations can occur in other rare disorders. This patient had none of these, nor was there any reason to suspect that she did.

  • Anti-streptolysin O

A test for an antibody against streptococcal bacteria. Usually ordered to follow rising levels of the antibody as an indication of active infection. There was no indication for this test in this patient.

  • Anti-DNAseB

Similar to anti-streptolysin O, it is sometimes ordered when there is a concern about certain complications of strep infections, such as rheumatic fever or glomerulonephritis. There were no such concerns with this patient.

  • 25-OH vitamin D

Ordered when vitamin D deficiency is suspected, either because of poor diet, lack of exposure to sunlight, or malabsorption. None of this applied to this patient.

  • Urine organic acids

A test for inborn errors of metabolism in which organic acids can build up in the body and are then found in elevated quantities in the urine. Though these conditions can present with developmental delays, there are other features as well that usually lead to the ordering of this and similar tests. This patient had none of the hallmarks of an inborn error of metabolism. Of note, this test was performed by The Great Plains Laboratory, Inc., which is used widely by sCAM providers to support bogus diagnoses (see below). It comes complete with unsupported interpretations of test results, and suggestions for the corresponding dietary supplements.

  • Fasting plasma amino acids

Used to look for certain endocrine, liver, muscle, neurological, and nutritional disorders. Though this and the urine organic acid test above were probably ordered because of the patient’s ASD diagnosis, these tests are not recommended routinely for everyone with this diagnosis, but much more selectively for children who are suspected for other reasons of having an aminoacidopathy.

  • Comprehensive Parasitology Profile

This is a proprietary test of Genova Diagnostics Laboratory, another darling of the sCAM crowd. Their website describes this test as:

a gastrointestinal stool test which evaluates for presence of parasites. Additionally the stool test evaluates levels of beneficial flora, imbalanced flora, pathogenic bacteria, and yeast. This stool test can help reveal hidden causes behind acute or chronic conditions that develop from parasitic infection or dysbiosis.

This is a bogus test designed specifically for sCAM providers so they can diagnose non-existent conditions that can then be treated with magic pixie dust cures. Though stool is often analyzed for parasites and their eggs when a parasitic intestinal infection is being considered, this was not a concern with this child. Also, testing for beneficial flora and yeast in the stool is not informative and has no real clinical value.

Any thoughtful, evidence-based health care provider reviewing this patient’s medical record would quickly recognize the lack of any medical justification for the tests ordered above, and no rationale for ordering any of these tests was provided in the sCAM provider’s note, though I’m sure to the parents this seemed like a thorough, state-of-the-art evaluation of their child. Most amazingly, other than the diagnosis and lab testing, the visit note contains no discussion of the provider’s assessment or plan, and no discussion of his thoughts on this child’s problems. Despite this, the provider used a time-based billing code for 45 minutes. This is used for visits of “45 minutes spent face-to-face with the patient, over 50% of time spent in face-to-face discussion about the above assessment and plan.” This code denotes a very high level of service, and thus can be billed at a high rate.

The sCAM provider saw the patient again several months later. In the interim, and based on the results of the unwarranted lab testing, she was diagnosed with:

  • “Numerous low or borderline amino acid levels” for which she was placed on a “customized amino acid blend” sold to her through the provider’s own supplement store.
  • “Fungal dybiosis”, based on the finding of “2+” Rhodotorula and Candida species in her stool and an elevated arabinose level in her urine. Of note, even the bogus lab noted that this level of yeast could be found normally in the stool. Also, an elevated level of arabinose in the urine has nothing to do with yeast in the stool, which is an insignificant finding any way. She was prescribed the oral anti-fungal medicine nystatin, and sold a proprietary probiotic blend, again from their own store.

Case 2: A 6-year-old boy with eosinophilic esophagitis

CD is a 6 year old boy with eosinophilic esophagitis, an allergic inflammation of the esophagus. Followed extensively by a multi-disciplinary team that includes gastroenterologists and allergists, he was also followed by several local naturopathic providers. As with the above patient, this child was reported by his sCAM providers to have an “unspecified immune disorder”, “intestinal malabsorption”, and “intestinal dysbiosis” (conditions he didn’t have), in addition to his eosinophilic esophagitis. Again, similar to the above patient, they ordered a barrage of bogus tests from multiple, made-for-sCAM labs. These tests included:

  • Intracellular micronutrient testing from Spectracell. You’ll only see this test and this lab used by sCAM practitioners, and for good reason. Its claims are unsupported by science yet the lab is used extensively by sCAM providers who then use its results to sell useless supplements.
  • 24 hour urine porphyrin testing: a test usually ordered when a patient is suspected of having a condition known as porphyria. This child was not suspected by anyone, including his sCAM doctors, of having this condition.

The visit notes from these providers were sketchy and offered absolutely no rationale for their lab testing or treatment recommendations. They prescribed multiple dubious products including:

  • Nystatin for “intestinal dybiosis”
  • A myriad of probiotics
  • OncoPlex Xymogen which, according to the company’s website, “can only be purchased from a registered XYMOGEN practitioner.”
  • Slippery elm
  • Transdermal magnesium
  • Flax oil
  • Cod liver oil
  • Calendula tincture
  • Fruit and vegetable powder
  • Multiple amino acids, vitamins, and minerals

Case 3: a 17-year-old male with a long history of intermittent fatigue and non-specific aches and pains

EF is a 17-year-old male with a long history of intermittent fatigue and non-specific aches and pains. Despite multiple laboratory evaluations in the past, all of which were negative, he was taken to a local integrative medical practice where he underwent extensive, unnecessary lab testing. Despite these findings being negative as well, including tests for multiple tick-borne diseases, he was immediately diagnosed with chronic fatigue syndrome due to Lyme disease and Epstein-Barr virus (EBV) infection, even though these tests were negative. He was treated with the following cocktail:

  • 3 months of doxycycline for his non-existent chronic Lyme disease, an excessive course of treatment, even for real Lyme disease
  • Valcyclovir for his non-existent EBV infection; this is not even a treatment for this infection
  • Tinidazole (an anti-parasitic drug) and low-dose naltrexone (used to block the effect of opioids); this is apparently part of their anti-science chronic fatigue syndrome protocol
  • Biofilm defense to “kill his biofilm”

The predictable pablum of the sCAM provider

Unfortunately I could continue this litany of sCAMed patients, but the story quickly becomes repetitive and predictable. The playbook reads like this:

  1. The patient is labeled with fictitious and typically multiple diagnoses. Some of these may be real conditions, though the patient does not usually have any of them. Others may be pulled from the sCAMer’s grab-bag of fake, alternative diseases.
  2. A multitude of lab tests are ordered. With a stretch of the imagination some of these tests may make sense based on the patient’s complaints, though they are often repeats of tests already performed by the patient’s real health care provider. Usually the tests ordered are completely unwarranted, and are performed with what we call a “shot-gun” approach. That is, the provider blindly orders tests in the hope that something will come up abnormal. This is a dangerous approach that is sure to turn up out-of-range values with no clinical significance, leading the provider to order more tests and possibly make erroneous diagnostic conclusions. The manner in which these providers order lab tests demonstrates a complete lack of clinical insight at best. At worst, it is fraud.
  3. The laboratories used are typically geared toward, and often used exclusively by, sCAM providers. Typically these labs sell their own proprietary laboratory-developed tests (LDTs). Though these tests may provide valid results for a given specimen of blood, urine, saliva, or hair, the results are not necessarily, or even usually, clinically valid. As exemplified in the cases above, the finding of yeast elements in a stool sample or a slightly elevated arabinose level in a random urine sample has absolutely no clinical significance. Nevertheless, the sCAM providers who order these tests are quick to misinterpret the clinically meaningless results to generate false diagnoses and offer up useless and potentially dangerous treatment recommendations. Some of these labs make recommendations for dietary supplements based on the test results, and even sell their own products through their website or through the provider who ordered them. Typing the names of these labs into Google will bring up a barrage of woo-laden web sites, and sites for naturopaths, chiropractors, and other integrative medicine providers. Fortunately there are science-based takedowns as well (here and here). Try it:
  4. Unnecessary or potentially dangerous treatment recommendations are made (see above). Invariably, some form of pseudoscience-based treatment regimen is foisted upon the credulous sCAM patient or their parent. This often comes in the form of a dietary supplement – either an herbal, homeopathic, vitamin, mineral, or biologic (amino acid, neurotransmitter) product. Sometimes the product is a proprietary concoction, obtainable only through that office. Either way, many sCAM providers have an on-site or web-based store through which their patients can purchase the recommended treatments.

Though regular readers of SBM will have come across most if not all of these features of sCAM practice, my purpose behind this post was to give you a providers’-eye view of just what we’re up against as we battle serpents in the sea of sCAM.

 

 

Posted by John Snyder

John Snyder, MD, FAAP, is an Assistant Professor of Pediatrics at Tufts University School of Medicine, and a practicing pediatrician at Amherst Pediatrics in Amherst, Massachusetts. Previously, he was Medical Director of the teaching clinic at Baystate Children's Hospital, and before that he was Chief of the Section of General Pediatrics and Medical Director of Pediatric Ambulatory Care at Saint Vincent's Hospital in New York City. Since 1994, Dr Snyder has been active in pediatric resident and medical student education with a particular interest in evidence-based pediatrics. His main area of interest is medical myth and the ways in which parents utilize information in making medical decisions for their children. One area of focus has been the vaccine myth, and he lectures frequently on this subject in both academic and community settings. His other activities have included: contributor to the Gotham Skeptic blog, member of the New York City Skeptics' board of advisors, and expert for BeWell.com ("A New Social Network on Health Founded by America's Top Doctors"). Dr Snyder graduated from Mount Sinai School of Medicine, completing his residency training in pediatrics at The Mount Sinai Hospital in New York City. He is board certified in pediatrics, and is a Fellow of The American Academy of Pediatrics. Dr. Snyder has no ties to industry, and no conflicts of interest regarding any of his writings. Dr. Snyder’s posts for Science-Based Medicine are archived here.

Loading...