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:

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.
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).2633 Other LLMDs have been convicted in state and federal courts raising concerns about ethics and professional credibility (panel 2).3441 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.

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7 comments

  1. excessive antibiotic use is risky, y’all. Not only can it decimate helpful bacteria in your gut biome, it may lead to widespread antibiotic resistance making us all more susceptible to superbugs that do not respond to antibiotics.

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  2. Quote from a former naturopath guest blogging at KevinMD.com “Frequently, patients presenting with nonspecific symptoms were diagnosed with dubious food allergies, chronic Lyme disease, adrenal fatigue, or yeast overgrowth. “

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  3. Hey, just wanted to let you know, from a 4th year medical student, that it is possible that Yolanda and her 2 kids could have tested positive for Lyme on Elisa or Western Blot. HOWEVER, you should never run these tests on people that do not meet clinical criteria for Lyme, which from what I can tell none of them do. If you test people who are asymptomatic, the pre-test probability is very low which mean the false positive rate is very high. Furthermore, the false positive rate is greatly increased when people have been vaccinated against Lyme disease (which apparently used to happen in Europe), have been exposed to EBV ( everyone has) or has current gingivitis. Just another example of Yolanda misunderstanding the significance of a test and the difference between screening and confirmation of active disease.

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  4. Back in 2007, I was almost taken in by one of these LLMDs. I was being tested for MS, and had a whole list of sort of disconnected scary symptoms. My frustration with the lack of diagnosis led me to suspect Lyme Disease, and someone on the Internet pointed me to a LLMD here in Pennsylvania. I called for an appointment, and was told that I needed to pay a nonrefundable $150 deposit to make an appointment. Red flag. Then I was told that they don’t take insurance — any insurance. Red flag. Then I was told that even if my Lyme tests came back negative, that didn’t mean I didn’t have Lyme — their lab (again, no insurance accepted) would tell me the TRUTH. Again…red flag. Then I get off of the phone — after making the appointment and paying the $150, because I was desperate — and I start doing research, because it was too suspicious to me. I called my insurance company and asked why they don’t cover this doctor — and it isn’t that they don’t cover him, it’s that they don’t take insurance in order to not raise questions about why a family doctor with zero infectious disease specialization or training that would permit him to treat this specific issue is acting like an ID Doctor. Confirmed it online — his residency was in family medicine, with zero specialization in ID. Then I google some more, and find out about the massive profits these LLMDs are racking up (insane amounts! Google Lyme, Inc — an article Time Magazine did about a decade ago), and how their typical treatment — long-term antibiotics — is actually the cause of a lot of the so-called chronic Lyme symptoms because long-term antibiotic use is HORRIBLE for you.

    And so I call the office back, less than 24 hours later, and ask to cancel my appointment and for a refund. The lady tells me that it’s nonrefundable. I say, “I’m a lawyer, and I will be reporting your office to…..” boom! She didn’t even let me finish my sentence. She said, “We’ll refund it” and hung up.

    Now how is that for suspicious?

    I was eventually diagnosed with a genetic disorder that was causing my symptoms. What scares me is that I’m highly educated (JD) and suspicious by nature, and because I was desperate, I was almost suckered into this trap. I don’t think that the average person, scared and longing for answers, is necessarily going to question these quacks so thoroughly. They can take people for quite a ride, destroying their health and their finances, and nobody is stopping them. Now we have this idiot on national television, preaching a gigantic bunch of BS that makes zero sense. She is harming people with this craziness, because her influence may sucker them into believing they have this made-up disease as well. It needs to stop.

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  5. Okay. If this posted twice sorry.
    This article is no longer on forbes. re: Lyme Inc

    Lyme Inc.
    Ticks aren’t the only parasites living off patients in borreliosis-prone areas.
    Three years ago Heather Jenkins, a 30-year-old mom in Huntersville, N.C., was constantly fatigued and prone to colds. Her internist referred her to Dr. Joseph Jemsek, a self-described “Lyme Literate” doctor. During the initial consultation he asked if she had been bitten by a tick or gotten a rash. No, she replied, but she had gone camping once in Tennessee. He suggested she may have picked up Lyme disease there and sent her blood to a California lab that specializes in tests for tick diseases. A week later the test results came back: She had been infected by Borrelia burgdorferi, the spirochete that causes Lyme disease.

    Jemsek installed a tube in Jenkins’ arm and every two weeks for a year and a half sold Jenkins a $3,000 course of Rocephin, a powerful antibiotic, to infuse on her own at home. When she developed infections around the catheter in her arm the nurse would switch it. When her arms wore out she got a port implanted in her chest. As she waited for Jemsek to treat her latest infection, she collapsed on the floor, vomiting. Drug-resistant bacteria had overtaken her entire body. Jenkins landed in a hospital intensive care unit for four weeks, barely surviving. A doctor at Carolina Medical Center, where she recovered, told her that their labs could find no evidence in her blood that she’d ever had Lyme. “I was outraged,” she says, and is now suing Jemsek. The near-death odyssey cost her insurance company $400,000. The action is pending, and Jemsek has made no comment.

    Lyme disease, with 20,000 cases reported annually, ranks low on the list of the most prevalent infectious diseases. But it ranks first in rancor generated in the medical community. The disease is caused by bacteria related to syphilis that enter the body through a tick bite. The typical Lyme infection responds to simple antibiotics, although symptoms like arthritis and fatigue may linger in a subset of patients. Researchers at academic medical centers who study the disease say that so-called chronic Lyme, or post-Lyme, is very rare, hard to detect and not treatable with any further doses of antibiotics. The mainstream doctors warn about an epidemic of bunk diagnoses and dangerous treatments. Insurers often refuse to cover the cost of treating chronic Lyme.

    Arrayed against the establishment is a fraternity of Lyme specialists, many of whom have built large practices treating ostensible Lyme patients with expensive courses of antibiotics.

    Last year the North Carolina state medical board brought Jemsek in for a disciplinary hearing. Ten patients testified to nightmarish experiences. A widower said his wife had died from a morphine overdose related to Jemsek’s Lyme treatments. Jemsek disputed all the charges vigorously. He also had 200 supporters show up, many of whom believe he cured them of a terrible disease. The Lyme Disease Association, a group that supports Jemsek, says that 30 chronic Lyme doctors have been similarly targeted by medical boards. Jemsek ultimately received a “suspension with stay” that allows him to keep practicing.

    The light penalty may reflect the power of Lyme support groups, which blast politicians with mail and phone calls to ensure their access to expensive care. Standing with them now is Connecticut Attorney General Richard Blumenthal, who has received awards from Lyme groups and late last year announced that he was investigating the Infectious Diseases Society of America, an 8,000-member organization of doctors trained to understand diseases like AIDS, malaria and tuberculosis. Their crime? Issuing Lyme treatment guidelines to doctors that warned against using long-term infused or oral antibiotics.

    Blumenthal, who hasn’t yet issued any lawsuits in the case, says that the IDSA’s guidelines may be in violation of antitrust laws. “Lyme disease is an extraordinarily insidious and widespread problem in Connecticut. We want to make sure that patients and physicians have unfettered choices,” he declares. Insurance companies, he goes on, may be colluding with the IDSA to deny care. It’s an odd charge, since a 1996 policy statement from the Federal Trade Commission and the Department of Justice says that treatment guidelines issued by medical societies do not limit competition. “You want medicine to advance by debate, not hampered by lawsuits,” says Robert Buchanan, a medical-antitrust attorney in Boston.

    Despite intimidation from elected officials like Blumenthal, the establishment has scored some hits against Lyme specialists. In 1993 Vithaldis Shah, a New Jersey doctor, had his license yanked for five years for sickening Lyme patients with long-term antibiotic treatments and receiving a payment from the infusion company. In 1996 a doctor in Michigan was suspended after conspiring with a home infusion company and misdiagnosing Lyme patients. In 2000 a study described the death of an anonymous woman from complications arising from treating unsubstantiated Lyme with antibiotics.

    In Connecticut Dr. Charles Jones, a pediatrician, is under investigation by the state medical board for prescribing, over the phone, antibiotics for chronic Lyme to two children in Nevada, a desert state with few ticks. Jones, who pulled up to a June hearing in a stretch limo to the cheers of fans, has testified that he did not finalize a Lyme diagnosis until he saw the children in person. Since the hearings began, more upset patients have joined the action against Jones. Blumenthal, however, has criticized the medical board for its investigation.

    Mainstream doctors say their guidelines are based on scientific evidence. An early study identified 25 patients with gallstones or bile blockage resulting from antibiotic treatment of unsubstantiated chronic Lyme. A more recent study of infused antibiotics published in the New England Journal of Medicine was cut short after Lyme sufferers with persistent symptoms did not respond to a course of antibiotics any better than they did to a placebo. One patient getting antibiotics had a pulmonary embolism; another had gastrointestinal bleeding.

    Another paper in the Annals of Internal Medicine calls chronic Lyme a “functional somatic syndrome,” similar to other nebulous ailments like Gulf War Syndrome, chronic fatigue and fibromyalgia. Another study in the same journal found that 60% of Lyme disease patients lacked any evidence of previous or active Lyme infections. Some of these patients suffered from depression, arthritis or other diseases. “There are lot of people who have fatigue or musculoskeletal pain. We want to help them but not with long-term antibiotics,” says Dr. Gary Wormser, an infectious disease expert at New York Medical College who helped write the guidelines that prompted Blumenthal’s attack. After the latest idsa guidelines came out in November, Wormser and his Valhalla, N.Y. lab were the target of a protest attended by hundreds of chronic Lyme patients and supporters; one sign said “Wormser Lies … Patients Die.”

    Many of the chronic Lyme patients are upset that their insurance companies won’t cover unlimited treatments. WellPoint will pay for only four weeks of IV antibiotics, citing published peer-reviewed studies. But science is no match for the Internet, where Lyme patients swarm chat boards to bemoan the persecution of their doctors and egg on politicians. Some celebrities have joined in the fray, such as novelist Amy Tan and Daryl Hall of rock duo Hall and Oates, both of whom say they suffer from chronic Lyme.

    Tan’s doctor is Raphael Stricker, president of the International Lyme & Associated Diseases Society, which represents chronic Lyme doctors and patients. Stricker’s San Francisco clinic also advertises its ability to treat obesity, infertility, erectile dysfunction and AIDS. In 1990 Stricker was forced out of UC, San Francisco after the school claimed he falsified data in what had been a seminal AIDS study. Before he discovered Lyme he spent two years as associate medical director at a penis enlargement clinic.

    Stricker and many of his chronic Lyme allies send their blood tests to a California lab called Igenex, which was once investigated by Medicare and the state of California for pumping out too many positive tests. Nick S. Harris, chief executive of Igenex, says he passed both investigations easily, but in 2001 the federal Office of the Inspector General put Igenex on a list of noncompliant labs. It paid fines totaling $48,000. Harris says his firm has had no recent brushes with regulators. Harris says that his tests are more sensitive than ones given by lab giants Quest Diagnostics and LabCorp, yielding positive results 25% of the time. The big national labs typically return positive results 8% of the time. He acknowledges that his results are more open to interpretation, which could facilitate more positive diagnoses. “Patients, because of the Internet, have become my best salesmen,” Harris says.

    Jemsek, who in 2005 collected $6 million from Blue Cross Blue Shield of North Carolina, is still practicing, having declared his earlier practice bankrupt. He opened a new cash-only practice, spending $8 million on a building with a waterfall and grand piano. On the Internet patients exchange tips about how to keep seeing him. In his statement to the medical board after the stayed suspension of his license, Jemsek, who declines to be interviewed, said: “I’ve got 400 letters of support here, many single-spaced and several pages long.”

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