The Chronicles of Yolandia, an Investigation of CLD – Pt VI: The Company You Keep

It’s time for another round of The Chronicles of Yolandia, where I look at Chronic Lyme Disease and delve deeper into the claims made by Yolanda Hadid Foster.

For the curious or new readers, please read from the beginning:

Pt I. || Pt. II || Pt. III || Pt. IV || Pt. V

Continuing on….

Part of the lexicon of Chronic Lyme Disease is this phrase “Lyme literate medical doctors” or LLMDs and they can also be called “Lyme literate doctors” or LLDs. As I mentioned previously, Lyme Disease is a completely real disease that the medical community accepts and has treatment guidelines; Chronic Lyme Disease is a whole other story. Yolanda has mentioned collaborating with a number of these doctors and organizations.

Note: I cite The Lancet a number of times throughout this post and they are located in the UK, so they use alternate spellings (favor/favour, organization/organisation.)

The Company You Keep

Yolanda has mentioned or posed with doctors that are part of these organizations. She has even spoken and received awards from some of them as well for her part as a “Chronic Lyme Disease Advocate”. The organizations include:

• International Lyme And Associated Diseases Society
  • Looks like a legitimate site right? Except it is full of pseudoscience and supports a wide network of quack doctors and practices.
  • Back in 2004, Pediatric Infectious Disease Journal cited them for being an inaccurate source
  • In 2010, the Journal of Medical Ethics also published an article on their anti-scientific information and unethical approaches
• Lyme Research Alliance // now combined to be called Global Lyme Alliance
  • Blatantly states to search for a “Lyme Literate Doctor”, as opposed to a doctor who treats infectious disease
  • They use other celebrities, like Heather Thompson from RHONY and Gretchen Carlson to prop up their image
  • On Global Lyme Alliance‘s frontpage, you can see Yolanda Foster pictured as part of the “star studded gala”
  • Another article about the gala, which notes other celebrities, including her model daughters, that were in attendance
• Lyme Disease Association
  • Right away shares news story about Kenneth Liegner, a proclaimed “LLMD” specializing in Chronic Lyme Disease
  • They have a whole section devoted to government legislation and lobbying
  • This site is a prime example of blurring medical information with pseudoscience. They provide guidelines on removing ticks and being aware of them, yet at the same time collaborate with the above organizations and LLMDs.
• LymeDisease.org
  • They cite ILADS and support Chronic Lyme Disease and LLMDs
  • They also discuss co-infections, something Yolanda is very fond of noting

What do these organizations do?

The organizations mainly hold conferences, fund quack research and doctors, and even sell merchandise. Some of them started off as support groups for people going through Lyme treatment, but devolved into partial lobbying organizations. Lobbying and spreading quackery seems to be their main focus now.

You’re probably asking yourself: why they would even need to lobby?

One of the major reasons they would need to lobby is to get insurance to cover long-term antibiotic treatments or non-standard treatments. Long term antibiotic treatments are bogus and shown not to work. Not only are they are not effective medically, they can also rack up in cost.  I have seen on comments, like on the NYTimes article linked similar statements of being on antibiotics for 8 years. What can be confusing is that antibiotics, as prescribed in treatment of Lyme Disease, does and will combat Lyme Disease particularly in the first month or two of diagnosis but the antibiotic regime is a month or less, not months and months.

From Quackwatch:

The long-term intravenous antibiotic therapy administered to Lyme patients sometimes has disastrous results. During the early 1990s, the CDC described 25 cases of antibiotic-associated biliary complications among persons with suspected disseminated Lyme disease [24]. All patients had received intravenous ceftriaxone for an average of 28 days for suspected Lyme disease. (Ceftriaxone can form precipitates in the presence of bile salts. The resulting “sludge” can block the bile duct.) Twelve patients subsequently developed gallstones. Fourteen underwent cholecystectomy to correct bile blockage. Twenty-two developed catheter-associated bloodstream infections. Yet most of the patients lacked documented evidence of disseminated Lyme disease or even antibodies to B. burgdorferi.In 2000, physicians reported the death of a 30-year-old woman who died from an infected intravenous set-up that had been left in place for more than two years. She was being treated for a case of “chronic Lyme disease” that could not be substantiated [25].

Two years? That is frightening.

Another patient writing on the Internet said he was treated at a Mexican clinic where the doctor admitted that he and his staff knew little about Lyme disease. The patient wrote, “I started on IV Rocephin (two grams a day), and later added oral azithromycin. My symptoms did improved, but I soon hit a treatment plateau. We then tried IV doxycycline, but this made me sick to my stomach.” He went on to describe a long list of other drugs (IV Claforan, Cefobid/Unisyn, Premaxin, a second round of Cefobid/Uisyn, and IV Zithromax), followed by bouts of “severe diarrhea” and phlebitis. Three months and some $25,000 later, DMSO was added to another infusion of Zithromax.

Yet, the drug-seeking behaviors of self-described chronic Lyme patients and the prescribing practices of many “Lyme Literate doctors” remain at odds with published research. Investigators carried out two treatment trials of patients claiming to suffer from chronic Lyme disease. They reported that “treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo” [29]. Additional studies in Europe and the U.S. similarly found that: oral doxycycline is as effective as intravenous ceftriaxone in treating late-stage central nervous system infections [29,30]; and additional antibiotics are not beneficial in improving cognitive function in patients with post-treatment chronic Lyme disease [31].

 

In 2014, Brian Palmer wrote in Slate about a very particular case of lobbying in the state of New York. Essentially, there was a bill that would protect quack doctors and quack practices, specifically, Chronic Lyme Disease and self professed LLMDs and against litigation and investigation.

From the article:

Self-professed “Lyme-literate” doctors have been trying for well over a decade to prove that chronic Lyme exists and that long-term antibiotic treatment works. They have failed to convince the overwhelming majority of the medical community. Mainstream doctors warn patients against “Lyme-literate” physicians, some of whom have built lucrative practices entirely around the unproven disease and its long-term and often cash-only treatments.

Doctors who offer dangerous and ineffective therapies are exactly the doctors the government should be investigating.

Organizations and doctors, yes, but even labs are a concern?

 Pseudoscience is an unbelievable network sometimes:

Lyme specialty laboratories are favoured by some activists and LLMDs because their nonstandard testing methods and interpretation criteria often lead to more positive results than other laboratories that rely on validated methods.⁴⁷ An owner of one such diagnostic company is an ILADS director and an adviser to three Lyme organisations. He was one of the authors of the treatment guidelines by ILADS, although his company affiliation is not disclosed in that document.⁴⁸ This laboratory was investigated by Medicare; in 2001, the US Federal Office of the Inspector General placed it on a list of non-compliant laboratories, resulting in fines totalling $48 000.

Yolanda has been somewhat vague about her actual diagnosis. It isn’t completely clear if she had Lyme Disease or self-diagnosed herself with Lyme Disease then sought treatment from a LLMD (though some quotes seem to suggest the later.) One of the first blogs of the season, she mentions western blot and some other things, but I am not sure if she is referring to valid tests or a number of the clinical diagnostic tests that are not validated, like Urine reverse western blot.

Noted problems with diagnostic test that are or have been advocated by some LLMDs and chronic Lyme disease activists

Lyme urine antigen test

• Unreliable⁴³

CD57 cell count

• No specific association with Borrelia burgdorferi infection⁴⁴

PCR

• Variable sensitivity in the plasma, urine, and CSF; no clinical validation⁴⁵

Flow cytometry

• No clinical validation⁴²

Lymphocyte transformation

• Low specificity; no clinical validation⁴⁶

Immunofluorescence for L-forms of Borrelia

• No clinical validation⁴²

Urine reverse western blot

• No clinical validation⁴²

Urine dot blot

• No clinical validation⁴²

But what’s the harm?

These organizations prop up unethical doctors and/or activities. In an article published in The Lancet, Infectious Diseases, the authors write:

Some LLMDs, advocacy organisations for patients, and certain diagnostic laboratories have interconnections, presenting potential conflicts of interest for these LLMDs in their multiple roles as advisors, personal physicians, and recipients of grants from activist organisations. Many of these physicians are represented by the International Lyme and Associated Diseases Society (ILADS), located in Maryland, USA. Two of the most vocal patient-activist organisations are the Lyme Disease Association (LDA) in New Jersey, and the California Lyme Disease Association (CALDA), USA.

Tl;dr version: it is one big circle jerk [non-scientific term]. The article continues:

Several physician members of ILADS—including current and former officers—have been sanctioned by state medical licensing boards or reprimanded by federal agencies (panel 2).^26–33 Other LLMDs have been convicted in state and federal courts raising concerns about ethics and professional credibility (panel 2).^34–41 For example, a doctor in Kansas served a prison sentence for causing the death of a patient he treated for Lyme disease with injections of bismuth.³⁵ An LLMD in Georgia was charged with allegedly treating patients for Lyme disease with injections of dinitrophenol, a toxic substance banned from medicinal consumption in the USA for more than 50 years.³⁶ He was suspended by the state medical board after his indictment in 2005, and was sentenced to 5 years’ probation for defrauding insurance companies of US$650 000.³⁶ In 2007, an LLMD in New Jersey was sentenced to 41 months in federal prison for tax evasion related to his two Lyme disease clinics.³⁹ In Connecticut, a physician and adviser to the Lyme group Turn The Corner Foundation was reprimanded, fined, and placed on 2 years’ probation for diagnosing Lyme disease in children without examining them and for improperly prescribing antibiotics.⁴¹ He is appealing the case using funds provided by Lyme activists.

That above statement is why it is important to not let celebrities use their platforms to spread anti-science rhetoric. I receive comments and emails asking what’s the harm? That demonstrates the harm. It isn’t only about doctors evading taxes (which hurts local communities), but also people are being harmed, from delaying treatment of real medical issues to causing death thanks to their pseudoscience practices.

Many have devolved into partisan organisations, promoting unproven therapies and the clinical services of their LLMD advisers. Their leaders lobby for legislation to promote their perception of chronic Lyme disease and to protect LLMDs from licensing boards, and they work to raise defence funds for those who face legal complaints. Activists have organised their own scientific meetings, published their own journal, and funded research by LLMDs.^58,59 All this activity has led to the creation of a cadre of doctors and activists with their own institutions, research, and conferences, a dedicated pool of patients, and unorthodox, alternative views of microbiology, immunology, and pharmacology.

These doctors and organizations prey on people suffering from possibly the aftermath of their Lyme Disease experience (joint pains, depression, etc. are common after treatments), or avoiding another disease diagnosis and treatment, or even fabricating their own illness because of emotional and mental struggles. Yolanda could be being taken advantage of because of her wealth and fame or could be in collusion to create a career of being a health/wellness proclaimed “expert” of some kind, like her friend Suzanne Somers. Maybe a little bit of both. Whatever the case may be, the consequences of these entire organizations and networks of anti-science and their continued operations are perpetuating and potentially devastating.