Archive for the ‘Treatment’ Category

LLMD Daniel Cameron Disciplined by NY Medical Authorities

Lyme patients, please do not read this if you can’t handle stress today.  I believe this is a targeted attack that conveniently happened after the infamous MMRC article by the CDC in which the lead author had to go fishing for 5 cases of folks who had IV complications in their Lyme/MSIDS treatment.  According to Lyme Disease Association there are nearing 400,000 cases of Lyme Disease each year.  You’d think there would be hundreds of such patients with IV complications.  But there aren’t.  I believe this is a concerted effort leading to the new IDSA guidelines. They are discrediting their opposition systematically before they release the guidelines so that they will be embraced without question.  Dirty politics and certainly not science-based.

For those just tuning in – here are articles explaining the MMWR article in which the CDC paints a very dark picture for IV treatments for Lyme/MSIDS patients:

https://madisonarealymesupportgroup.com/2017/06/23/no-bias-in-mmwr-for-any-other-infectious-disease-requiring-iv-antibiotics-except-for-lyme/

https://madisonarealymesupportgroup.com/2017/06/23/cdc-slams-long-term-antibiotics-for-lyme-disease/

https://madisonarealymesupportgroup.com/2017/06/21/ilads-rebuttal-to-mmwr-article/

https://madisonarealymesupportgroup.com/2017/06/16/who-controls-the-fake-lyme-disease-news/

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“Chronic Lyme” VIP Daniel Cameron Discipled by New York Medical Authorities by Jann Bellamy on June 22,2017

https://sciencebasedmedicine.org/chronic-lyme-vip-daniel-cameron-disciplined-by-new-york-medical-authorities/

The medical practice of “Lyme literate” guru Daniel Cameron, MD, will be closely supervised by the authorities during a three-year probation imposed last week by the New York State Board for Professional Medical Conduct (BPMC). The order was based on professional misconduct charges filed against Cameron earlier this year.

Cameron agreed to the imposition of sanctions during administrative proceedings on the charges and a consent order was entered by the BPMC based on his concession. He stipulated that

he could not successfully defend against at least one of the acts of misconduct alleged. Those allegations included practicing the profession of medicine with negligence on more than one occasion, incompetence on more than one occasion, gross negligence, gross incompetence, and/or failing to maintain accurate patient medical records.

Who is Daniel Cameron, MD?

Cameron is a solo practitioner in Mt. Kisco, NY, and board certified in internal medicine, but not fellowship-trained in infectious diseases and not board-certified in that sub-specialty. He also holds an MPH and describes himself as epidemiologist. According to his website, he:

is a nationally recognized leader for his expertise in the diagnosis and treatment of Lyme disease and other tick-borne illnesses.

That is partially true. He is a “recognized leader” among those who consider “chronic Lyme” a real disease and who treat it with long-term antibiotics, sometimes for months to years. He is not a “recognized leader” among board-certified infectious diseases doctors and other experts who agree that “chronic Lyme” is not a real disease and who rely on well-conducted trials showing that long-term antibiotics do not substantially improve the outcome for patients diagnosed with so-called “chronic Lyme.” Long-term antibiotics can, in fact, result in serious harm, including death, a subject our good friend Orac covered just yesterday over on Respectful Insolence. The CDC, the Infectious Diseases Society of America (IDSA), the American Academy of Pediatrics, the American College of Physicians, the Medical Letter and the American Academy of Neurology all reject the notion that “chronic Lyme” exists and that long-term antibiotics are an appropriate treatment.

(Orac’s post nicely summarizes the differences between real Lyme disease and “chronic Lyme,” “a prototypical fake medical diagnosis,” and the dangers of long-term antibiotics, as have posts on SBM, here, here, here, and here.)

That has not stopped “Lyme literate” doctors from banding together to form the International Lyme and Associated Diseases Society (ILADS) and issuing their own guidelines for the diagnosis and treatment of “chronic Lyme,” guidelines based on very low levels of evidence that are accepted only by themselves and, in contrast to the IDSA guidelines, no other professional medical organization. ILADS teaches physicians and other practitioners how to become “Lyme literate,” although there is precious little information about the courses on the ILADS website. ILADS, again in contrast to IDSA, is not an ACCME-accredited provider of continuing medical education and, to my knowledge, none of its courses qualify for continuing medical education credit. Nor are ILADS guidelines taught as appropriate in any medical school, residency or fellowship program.

Unfortunately, according to Cameron,

ILADS healthcare providers currently serve more than 100,000 patients with Lyme and associated tick-borne diseases in the USA and around the world.

Cameron is a leading light among the “Lyme literate.” He is the past president of ILADS and is the lead author of both the original ILADS guidelines and its 2014 update. He has testified before several state legislatures promoting the protection of “Lyme literate” doctors from prosecution by state medical boards, including the legislature in New York, where such a bill became law. He also makes presentations to Lyme support groups, spreading the gospel of “chronic Lyme.”

He has written a number of articles in the medical literature promoting the notion that “chronic Lyme” exists and that long-term antibiotics are an appropriate treatment, including two in the bottom-feeder journal, Medical Hypotheses, known for its publication of pseudoscientific papers.

His bibliography includes a letter to the editor of the New England Journal of Medicine, complaining about an article by infectious diseases experts rejecting “chronic Lyme” as a valid diagnosis and its “treatment” with long-term antibiotics. The evidence, Cameron claimed, is actually in “clinical equipoise.” This drew a sharp rebuke from the article’s authors:

The term ‘clinical equipoise,’ used by Cameron, is difficult to justify in view of the published reports of five double-blind, randomized, placebo-controlled clinical trials that have convincingly demonstrated that antibiotic treatment of post–Lyme disease symptoms is not in the best interests of patients. Our article summarizes the consensus among clinicians who practice evidence-based medicine . . .

The direct implication being, of course, that Cameron is not one “among clinicians who practice evidence-based medicine.”

Cameron, for his part, brushes off the expert opinion of infectious diseases doctors versus “chronic Lyme” pseudoscience manufactroversy as simply “different points of view:”

Only by airing these different points of view will the medical and scientific community reach a better understanding of controversial topics such as treatment of chronic Lyme disease. Meanwhile, physicians must be able to exercise their clinical judgment and patients should be provided with treatment options.

With that, let’s turn to how, in the view of the New York state medical authorities, Cameron exercised his “clinical judgment” and provided patients with “treatment options.”

“Clinical judgment” and “treatment options”

Apparently, New York’s medical misconduct procedures do not require the physician charged to stipulate to any particular acts of misconduct as a condition of settling his case. Rather, as noted, Cameron simply stated he was unable to “successfully defend against at least one of the acts of misconduct alleged” and agreed to the imposition of sanctions. This means the allegations in the state’s Statement of Charges were never proven, as it was unnecessary to reach a decision on the factual issues once Cameron decided to settle. However, per the Office of Professional Medical Conduct’s (OPMC) standard procedures, the allegations in the Statement of Charges were based on expert review of Cameron’s patients’ records and they remain uncontested by Cameron.

The state’s allegations were based on Cameron’s care of seven patients. According to the Statement of Charges, some of his more egregious actions include:

  • Continuing to prescribe narcotics to a patient diagnosed with bipolar disorder and narcotic abuse for two years after the patient had moved to another state.
  • Failing to follow up on previous diagnostic tests and symptoms indicative of multiple sclerosis, “thereby depriving the patient of an accurate diagnosis and years of effective therapy for her progressive disease.”
  • Failing to appropriately and timely evaluate a patient, who suffered from Parkinson’s disease, when she complained of pain associated with a PICC line inserted at Cameron’s direction for parenteral antibiotics, which itself was done without an appropriate physical examination or “clinical re-assessments for consideration of any alternative diagnoses and/or treatment.”
  • Failing to consider “other infections or inflammatory processes” in a patient with a recent termination of pregnancy and diverticulitis, who had abnormal lab results, including abnormal liver function tests and an elevated sedimentation rate, and failure to order a CT scan of the abdomen and pelvis as well as additional blood testing.

The state wisely avoided specifically challenging Cameron’s diagnosis of his patients with “chronic Lyme” or his treating “chronic Lyme” with long-term antibiotics. In fact, the term is never mentioned. In doing so, it circumvented the quagmire of arguing over “different points of view” and concentrated on the fact that Cameron quite simply failed his patients by giving them substandard care, “chronic Lyme” or no “chronic Lyme.” This strategy also avoided any shield which might have been provided by New York’s foolish law aimed at protecting “Lyme literate” doctors.

Yet the fingerprints of “chronic Lyme” diagnosis and treatment show through loud and clear in the state’s case. For each and every patient, Cameron was charged with:

  • Repeatedly failing to take and/or note an adequate history of present illness.
  • Repeatedly failing to perform and/or note an appropriate physical examination.
  • Failing to appropriately construct a differential diagnosis and pursue a through diagnostic evaluation.
  • Failing to maintain records accurately reflecting care and treatment rendered to the patient.

For six of the seven, he was charged with:

Treating patients inappropriately with an ongoing and escalating antibiotic regimen without appropriate sequential physical examinations and clinical reassessments for consideration of any alternative diagnoses and/or treatment.

And for four of them, according to the state, Cameron failed to follow up in a timely fashion when the patient developed possible adverse reactions to therapy.

Two of the patients who presented with complaints of fatigue and pain had previous diagnoses and treatment for Lyme disease, 9 and 16 years earlier, fitting the “Lyme literate” notion that their current complaints are most certainly sequelae to inadequately-treated Lyme and cannot be attributed to other causes.

Reading between the lines, Cameron had only one tool, a hammer, so he saw every problem as a nail. The possibility that the patient might be suffering from something other than “chronic Lyme” was tossed aside via inadequate physical exams and medical records, failing to consider other diagnoses, and bulldozing ahead with inappropriate long-term antibiotics, adverse consequences be damned.

Of course, if you think about it, substandard care and “Lyme literacy” would appear to go hand-in-hand. It is hard to imagine the “Lyme literate” doctor, who routinely ignores medical science in favor of unvalidated testing, makes repeated diagnoses of a fake disease, and orders unwarranted long-term antibiotics, otherwise delivering standard-of-care medical practice. As with the Cameron case, this offers a way forward to state medical boards hamstrung by laws designed to protect the misconduct that is “chronic Lyme” from disciplinary action.

Terms of three-year probation

In entering into his probationary period, Cameron is in the company of other “Lyme literate” doctors who have had their medical practices questioned by their peers, up to and including discipline imposed by medical regulators (also, here and here).

Hopefully, Cameron will be hard-pressed to continue his usual M.O. under the terms of the Board’s Consent Order. He has agreed to practice medicine only when monitored by a licensed physician (a “practice monitor”) who must be “board certified in an appropriate specialty considering [Cameron’s] specialty of practice, who is familiar with the diagnostic and treatment modalities practiced and offered by [him].”

The practice monitor can see all of Cameron’s records and must visit his office “on a random unannounced basis at least monthly” and examine no fewer than 20 records. The monitor’s review is to determine whether Cameron’s medical practice “is prudent and competent.” Any perceived deviation from prudent care or refusal to cooperate must be reported to the OPMC within 24 hours. The monitor must also report to the OPMC quarterly and Cameron must pay the expenses of monitoring.

Cameron gets to propose his own monitor to the OPMC. This, coupled with the language about familiarity with Cameron’s “diagnostic and treatment modalities,” leaves some concern that a fellow traveler would be put in charge. The fact that the OPMC must approve the monitor, plus the broad authority given to the OPMC in the Consent Order to look at his records and otherwise investigate what he is up to, somewhat allays those concerns.

He must also, among other things:

  • Obtain written informed consent from each patient “specifically addressing all aspects of treatment” and provide the OPMC with copies of his consent forms.
  • Fully document all discussions with patients concerning his evaluation and treatment “and of the patient’s need to pursue conventional medical care elsewhere, if indicated.” This is of some concern as well, as it implies Cameron is free to provide unconventional medical care as long as he tells the patient she needs the conventional kind.
  • Obtain and review medical records from physicians who previously or are currently treating his patients and refer patients to other physicians for further evaluation and treatment “where medically warranted and beyond the scope of [Cameron’s] role with regard to the patient.”
  • Maintain at least $2 million per occurrence/$6 million per policy year limit medical malpractice insurance.
  • Complete CME courses as directed by OPMC.

But, Legislative Alchemy

Whether Cameron’s case will prove to be a cautionary tale for other “Lyme literate” doctors remains to be seen. Even as one branch of state government successfully prosecutes a “Lyme literate” doctor, another branch, the legislature, is considering forcing insurers to cover treatment of “chronic Lyme,” the subject of no less than three bills now pending. (Assembly Bill 114, Senate Bill 4713, Senate Bill 670). Three other bills are sympathetic to the cause in that they will give “chronic Lyme” advocates yet another venue to argue for insurance coverage. (Assembly Bill 4863, Senate Bill 2168, Assembly Bill 6927). Pseudoscience, it seems, is endemic in the state of New York.

Official Citation:  https://apps.health.ny.gov/pubdoh/professionals/doctors/conduct/factions/PhysicianDetailsAction.action?finalActionId=8470

**Proof of borrelia Persistence: https://madisonarealymesupportgroup.com/2015/09/19/proof-of-borrelia-persistence/

https://madisonarealymesupportgroup.com/2017/05/10/body-of-research-showing-borrelia-persists/

https://madisonarealymesupportgroup.com/2017/06/20/move-lyme-disease-to-highest-alert-level/  700 peer-reviewed articles showing Bb persistence.

**For stats on the abysmal testing.  Scroll down to my comment:  https://madisonarealymesupportgroup.com/2017/06/23/cdc-slams-long-term-antibiotics-for-lyme-disease/

No Bias in MMWR for Any Other Infectious Disease Requiring IV Antibiotics Except For Lyme

http://www.timesunion.com/news/article/Report-on-dangers-of-antibiotic-treatments-for-11231166.php

Report on dangers of antibiotic use for Lyme disease sparks controversy

 

ALBANY — Dangerous bacterial infections have resulted from long-term antibiotic treatments prescribed for chronic Lyme disease, a new report states.

The report, published last week by the U.S. Centers for Disease Control and Prevention, includes accounts of five patients whose complications from the unproven treatments included septic shock, colitis, spinal disc infection, abscess and death.

A Capital Region advocate for further research and improved treatment for chronic Lyme disease, however, believes medical politics are behind the study’s publication.  

Holly Ahern, a microbiologist at SUNY Adirondack in Queensbury, said some of the report’s authors are also engaged in updating Lyme disease treatment guidelines for the Infectious Disease Society of America, or IDSA. The influential doctors’ group does not acknowledge chronic Lyme disease as a legitimate diagnosis.  

The authors looked for patients whose cases would confirm what they already believed, Ahern said.

“They are simply trying to prop up the 30-year-old studies by rewriting it and publishing is as a ‘new study,’ so that it can then be cited as ‘evidence’ in their ‘evidence-based’ treatment guidelines,” she said.

The CDC estimates there are 300,000 cases of Lyme disease each year, most in the Northeast and Midwest where the ticks that carry the disease are most plentiful.

It is no surprise that a report on chronic Lyme disease is creating controversy. A battle has raged for decades over whether it even exists and, if it does, how it should be treated.

Chronic Lyme disease is a term used for a constellation of symptoms that can occur after an acute case of Lyme disease, which is caused by bacteria transmitted from a tick bite. Chronic Lyme is the exception rather than the rule: In most cases, Lyme disease that is caught early can be treated effectively with antibiotics.

But in 10 percent to 20 percent of patients, symptoms like headaches, joint and nerve pain, dizziness and fatigue can endure for months and even years. That’s undisputed.

It’s the cause of those persistent symptoms that’s at the heart of the debate.

IDSA sees these lingering symptoms as an aftereffect of infection. But doctors who diagnose patients with chronic Lyme disease believe the bacteria that causes the infection remains in the body, though it is not detected by standard tests. These doctors therefore use antibiotics, which combat bacteria, to fight it, usually by infusing the drugs through intravenous lines over extended periods.

The risk, however, is that antibiotics attack not only the bacteria that makes people sick, but also the bacteria that helps fight infection, explained Timothy Sellati, a former Albany-based immunologist who is now chair of the Department of Infectious Diseases at Southern Research in Alabama. Infections can also form at the site of the IV lines if they are not kept sterile.

For both those reasons, extended use of IV antibiotics should usually be avoided, Sellati said.

Doctors, public health officials and patients have contacted CDC with reports of serious bacterial infections resulting from such unproven treatment, according to the CDC report. The five stories in last week’s report highlighted these.

One patient was treated with two four-week courses of antibiotics after tests determined that she had Lyme disease. But two years later, with continued fatigue and trouble thinking, she was diagnosed with chronic Lyme and received a year’s worth of IV antibiotic treatments. A year after that, another month’s worth of antibiotics was delivered through a catheter.

She was admitted to a hospital after developing back pain and shortness of breath. Doctors found that her spine was infected by bacteria found at the catheter tip.

“That is a whole long time on antibiotics,” Sellati said of the case. “I would ask that physician: What were you expecting to happen? Where do you think this bacteria is hiding from this assault?”

Ahern, on the other hand, questioned the CDC’s use of five extreme examples amid thousands of people treated with IV antibiotics for chronic Lyme disease. Lymedisease.org, a California-based group that advocates for patients with chronic Lyme disease, filed an ethics complaint three years ago against the research that led to the report.

One of the report’s authors, a CDC epidemiologist, allegedly solicited IDSA doctors for evidence of harm from IV antibiotic treatments, offering co-authorship of the report if anecdotes were used, according to a blog post by Lymedisease.org’s vice president. No such solicitation was made for IV treatment success stories, according to the advocacy group.

Ahern sees that as a prime example of bias in the study, published in the CDC’s Morbidity and Mortality Weekly Report.

“If you search the MMWR archives, there are no other examples of this sort of bias for ANY OTHER infectious disease requiring IV treatments,” Ahern wrote in an email. “None.”

CDC Slams Long-term antibiotics for Lyme Disease

http://www.mvtimes.com/2017/06/21/cdc-study-slams-lyme-disease-treatment-long-term-antibiotics/

CDC study slams Lyme disease treatment with long-term antibiotics

Last Friday, the Centers for Disease Control (CDC) released a report which is adding fuel to the fire in the debate about the existence, and treatment, of “chronic Lyme Disease.”

CDC Morbidity and Mortality Weekly report, “Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease,” states that “chronic Lyme disease” is not a scientifically verifiable illness, and that treatments of prolonged antibiotic therapy are ineffective at best, and at worst, potentially fatal.

“Clinicians, health departments, and patients have contacted CDC with reports of serious bacterial infections resulting from treatment of persons who have received a diagnosis of chronic Lyme disease,” the report states.

The study highlights case histories of five patients who were treated for chronic Lyme disease with long-term antibiotics. Complications included septic shock, Clostridium difficile colitis, osteodiscitis, abscess, and in two cases, death.

“These cases highlight the severity and scope of adverse effects that can be caused by the use of unproven treatments for chronic Lyme disease,” the report states. “In addition to the dangers associated with inappropriate antibiotic use, such as selection of antibiotic-resistant bacteria, these treatments can lead to injuries related to unnecessary procedures … and missed opportunities to diagnose and treat the actual underlying cause of the patient’s symptoms.”

Patients in the study were treated with intravenous antibiotics with a PICC (peripherally inserted central catheter). The surgically inserted line injects the antibiotic directly into the bloodstream on the theory that oral antibiotics don’t work as well because they don’t break the blood-brain barrier. The new study took a dim view of PICCs, stating that they were consistently a source of infection.

Regarding the scope of the three-year study, a CDC spokesperson told The Times in an email, “CDC has periodically heard from state health departments and clinicians about patients who have acquired serious bacterial infections during treatments for what is sometimes referred to as ‘chronic Lyme disease.’ We have heard of many cases, but limited the report to five examples.”

Test questioned

The blood tests currently used to detect the presence of Borrelia burgdorferi bacteria, which cause Lyme disease, are the enzyme-linked immunosorbent assay (ELISA), and the Western blot test, which can confirm the results of an ELISA test.

Chronic Lyme disease advocates believe that current testing methods are inaccurate, and a major source of their concern. Last week’s CDC report also addresses this: “There is a belief among persons who support the diagnosis and treatment of chronic Lyme disease that Borrelia burgdorferi can cause disabling symptoms even when standard testing is negative, despite evidence that the recommended two-tiered serologic testing is actually more sensitive the longer Borrelia burgdorferi infection has been present. Some practitioners use tests or testing criteria that have not been validated for the diagnosis of Lyme disease. A significant concern is that after the diagnosis of chronic Lyme disease is made, the actual cause of a patient’s symptoms might remain undiagnosed and untreated.”

According to a CDC spokesperson, “You may have heard that the blood test for Lyme disease is correctly positive only 65 percent of the time or less — this is misleading information. As with serologic tests for other infectious diseases, the accuracy of the test depends upon the stage of disease. During the first few weeks of infection, the test is expected to be negative. Several weeks after infection, currently available two-tier testing has very good sensitivity … Antibodies against Lyme disease bacteria usually take a few weeks to develop, so tests performed before this time may be negative even if the person is infected. It is not until 4 to 6 weeks have passed that the test is likely to be positive. This does not mean that the test is bad, only that it needs to be used correctly.”  (Please see comment at end of article)

Sam Telford, an expert on tick-borne diseases and professor of infectious disease and global health at Tufts University, former MV Times columnist, and chronic Lyme disease skeptic, told The Times that the new CDC report is “yet more evidence” that people should question a chronic Lyme disease diagnosis if the traditional tests show no trace of Borrelia burgdorferi. “When the evidence for a diagnosis rests on testing by a handful of specialty laboratories, in the face of evidence from well-validated tests that have been in use for 30 years, it seems to me that they are limiting their chances for a different diagnosis and treatment to improve life … I think that to the detriment of their health, some people with true illness embrace a faith-based diagnosis instead of an evidence-based [scientific] diagnosis. The CDC report shows what can happen … very tragic. There are many possible diagnoses for the signs and symptoms experienced by those who undergo such extreme treatment regimens.”

Theories behind lingering Lyme

Most people infected with Lyme disease are cured with a two- to four-week regimen of strong antibiotics, most often doxycycline. However, roughly 10 percent of those infected experience long-term symptoms that include muscle ache, joint pain, fevers, cognitive impairment, and extreme fatigue.  (See comment at end of article)

The Centers for Disease Control (CDC) calls this condition post-treatment Lyme disease syndrome (PTLDS), and unlike chronic Lyme disease, the industry-standard blood tests confirm the presence of the Borrelia burgdorferi bacterium.

“The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well,” the CDC website states. The CDC does not recommend use of long-term antibiotics for PTLDS. “Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo.”

There is a growing faction that believes chronic Lyme disease exists irrespective of CDC studies, and that people presenting with persistent Lyme disease symptoms should be treated with long-term antibiotics.

On a visit to Martha’s Vineyard Hospital last summer, Dr. Nevena Zubcevik, attending physician at Harvard Medical School and co-director of Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Charlestown, said she believes the current testing methods are inadequate.

She cited information from a researcher at the CDC: “Barbara Johnson, an expert with the CDC Lyme program, reveals that the current two-tier method is positive in only 31 percent of those with erythema migrans (the bull’s-eye rash associated with Lyme disease) and in only 63 percent of those with acute neuroborreliosis or carditis due to Lyme disease. This means that out of 100 patients who have Lyme disease, we might misdiagnose 69 of them, leaving their infections untreated … Given the current urgent state of affairs, we should be racing to find better testing strategies that will identify all of the Borrelia species and associated co-infections, and to find better antibiotic regimens that will cure our patients.”

Dr. Zubcevik suggested that the correct antibiotics aren’t being used to treat the long-term symptoms of Lyme disease. She diagnoses this condition as “persistent symptoms related to Lyme disease,” not chronic Lyme disease. “The drugs we are using might be contributing to persistent bacteria, and may not be fully clearing infections,” she wrote in an email to The Times last year.

Dr. Zubcevik did not respond to The Times’ request for comment on the new study.

Though her stance is controversial, it resonated on Beacon Hill. Last July, the House of Representatives, overriding Governor Baker’s veto, passed a bill requiring health insurance providers to cover the cost of long-term antibiotics. Massachusetts was also one of the first states to enact a bill protecting doctors who prescribed long-term antibiotics, when Governor Deval Patrick signed it into law in June 2011.

Enid Haller works as a patient advocate at the Dean Lyme Center, where a number of Vineyarders, and people from all over the country, go for treatment. Ms. Haller also runs the Lyme Center of Martha’s Vineyard, described on her website as a walk-in information service for Lyme and tick-borne diseases, on Panhandle Road in West Tisbury.

Ms. Haller told The Times she believes the CDC, and Mr. Telford, are wrong about the accuracy of the ELISA and Western blot tests. She said she suffered the long-term effects of Lyme disease for more than 10 years, and never tested positive for Lyme disease with the traditional tests given at Martha’s Vineyard Hospital. “The Igenex test is essentially a better implemented Western blot test,” she said. “I came back very positive for Lyme [disease] with the Igenex test.” Ms Haller said the Igenex test should be the standard test for the Cape and Islands, including Martha’s Vineyard Hospital. She said the Dean Lyme Center at Spaulding Hospital in Charlestown uses the Igenex test, and her treatment there has been the breakthrough she’d sought for more than a decade. She said getting the antibiotics intravenously, through a PICC line, was the key.

“It worked incredibly well,” she said. “I had my PICC line removed last November because you have to take it out after a year, because the tubing starts to deteriorate. After the holidays, the symptoms slowly started to come back, the joint pain, the brain fog; I had trouble walking. But a month ago I had a PICC line put back in, and I started feeling better in 48 hours. The pressure in my head just went away.”

Ms. Haller said she feels well enough to join four other Spaulding patients who are traveling to Germany in three weeks for “hyperthermia treatment,” a process where the body temperature is raised enough to kill Borrelia burgdorferi. “I’ve spoken to a lot of people who’ve gotten better from it. I know I can’t be on antibiotics forever,” she said.

Conspiracy theorized

Ms. Haller said she thinks last week’s release of the CDC report was in response to an “uprising,” spearheaded by four people from Lyme Cryme, a chronic Lyme Disease advocacy group, who traveled to Washington, D.C., two weeks ago to lobby congressmen. Lyme Cryme members allege that there has been a coverup orchestrated by the CDC, and that the agency has long advocated ELISA and Western blot tests, knowing that they don’t work. “They’re starting a class-action lawsuit against the CDC, so it doesn’t surprise me the CDC came out with the article last week,” Ms. Haller said.

A 249-page treatise by the $ociety for the Advancement of $cientific Hermeneutics ($A$H), titled “Descrambling the Centers for Disease Control and Prevention’s (CDC’s) For-Profit scientific nonsense,” also alleges CDC perfidy, with an underlying profit motive. “We don’t test positive on the stupid test because it was designed to fail. It was designed to market a vaccine, not diagnose Lyme disease. A core group of doctors with financial interests in the Lymerix vaccine have intentionally misled the medical community about them … At some point, it was decided by CDC officers that they should commercialize Lyme and other emerging tick-borne diseases by patenting vaccines and test kits … Their plan: Make Lyme only 15 percent detectable so that the Cabal would be guaranteed to have an at least 85 percent ‘effective’ vaccine. If they maliciously discredited the people who became ill as a result of the ‘vaccine’ itself (septic shock) or vaccine failure (Lyme), then the vaccine would be ‘safe,’ too. We call both the crime of falsifying the testing and the resultant — and current — bogus testing criteria, ‘Dearborn.’”

Ms. Haller alleged Mr. Telford is also involved in the deception. “Sam owns part of the vaccine,” she said. “Whenever he speaks on the Vineyard, he’s always pushing the vaccine. I always wondered why. I would be interested to know the other doctors who own the vaccine, because they stand to make a lot of money. This is getting exposed now, and I think that’s why Sam gets so mad when we discuss this.”

Ms. Haller said she knows people who have gotten sick from Lymerix, which was introduced in 1998 and withdrawn three years later amid a class-action lawsuit alleging it caused arthritis-like symptoms. “I know people who have dementia because of the Lymerix vaccine, and Sam refuses to acknowledge that. The veterinarians use it, but I know many people on the Vineyard who have given it to their dogs or cats or horses, and they have terrible reactions to the vaccine. They’re probably still making millions and millions of dollars from that.”

In an email to The Times, Mr. Telford dismissed the CDC conspiracy as “ravings,” and stated he has no financial interest or motives with Lymerix. “In 1991, I co-discovered the mode of action of the vaccine … that is all. I did not make the vaccine. I own no patents, never did, received no funding other than to help run the Phase II clinical trial back in the mid-1990s, receive no funding now, and am not pushing it for any financial gain. I hope to revive Lymerix under a nonprofit structure … vaccines for the people by the people. I am pushing for this because I am outraged that Lyme incidence keeps going up and up, and something I helped develop as a younger scientist might have prevented hundreds of thousands of cases over the past decade … and could do so in the decade to come.”

Prevention remains the key

Prevention is paramount when it comes to fighting the spread of Lyme disease and other virulent tick-borne diseases — babesiosis, spotted fever, Rocky Mountain spotted fever, tularemia, Powassan virus, and ehrlichiosis — by wearing permethrin-treated clothes when working or playing outdoors, and making daily tick checks.

This is especially crucial in the months May through early July, when the vast majority of infections will take place.

More information on tick-borne disease prevention can be found on the Martha’s Vineyard Boards of Health Tick-Borne Disease webpage.

 

**Comment:  https://madisonarealymesupportgroup.com/2017/04/12/comparing-lyme-testing-with-hiv-testing/  The probability of a false-negative test for LD with a single test for early-stage disease was high at 66.8%, increasing to 74.9% for two-tier testing.  For late-stage LD, the two-tier test generated 16.7% false negatives.  Using clinically representative LD test sensitivities, the two-tier test generated over 500 times more false-negative results than two-stage HIV testing.

https://madisonarealymesupportgroup.com/2017/06/09/medicine-is-behind-the-times-when-it-comes-to-treating-lyme/  There is no test for active Lyme disease infection, and test interpretation, especially the use of specific bands in the WB (IgM 2/3; IgG 5/10), developed at the 1994 CDC/Association of State and Territorial Public Health Laboratory Directors Dearborn meeting,6 is problematic. Some doctors and researchers believe those bands were selected only to protect the then-in-development Lyme disease vaccine (subsequently licensed and withdrawn over 4 years). Furthermore, the Lyme ELISA used for screening may not react with serum antibodies if at least a month has not elapsed between the tick bite and the test. If antibodies do develop, research in the Journal of the American Medical Association7 has shown that the antigen and the antibody produced by the patient can form a complex. Current commercial tests can only test for a free antibody, not an antibody in a complex, so patients can remain undiagnosed despite having produced antibodies.

Perhaps most noteworthy is that FDA-cleared commercial serological tests are based on one strain of Borrelia burgdorferi bacteria in contrast, for example, to a 2-strain Lyme test developed by one independent Clinical Laboratory Improvement Amendments-approved lab. The recent discovery by Mayo Clinic/CDC of the Borrelia mayonii species in the Midwest, which can also cause Lyme, and the acknowledgement that Borrelia miyamotoi, a spirochete closely related to the relapsing fever bacteria and more distantly related to the Lyme bacteria, causes a Lyme-like disease in the United States, means Ixodes scapularis ticks transmit all three of those bacteria, further clouding the diagnostic picture.  (And, isn’t picked up at all with current CDC testing)

https://www.lymedisease.org/lyme-sci-testing/  Please read this fantastic article about the abysmal testing by Lonnie Marcum of Lymedisease.org.

Lonnie-chart

Also, what the Lyme denialists fail to comprehend is that borrelia can move quickly into the Central Nervous System.  While they advocate a “wait and see” approach, the spirochetes are having a hey-day infiltrating every organ.  They advocate a catch-22 telling everyone Lyme is cured by being treated quickly but then they sit on their laurels waiting for a optimal test result that may take up to a month.  Makes absolutely no sense.

 

ILADS Rebuttal to MMWR Article

For those of you just tuning in, the CDC wrote a horrific report intended to frighten doctors into not prescribing long term antibiotics and IV treatments including IVIG.  The damning article is found here:  https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm?s_cid=mm6623a3_e

It’s important to note that according to Dorothy Leland of Lymedisease.org, the lead author, CDC’s Christina Nelson, essentially trolled for case studies to support her pre-determined conclusions by contacting the Infectious Disease Association of California, and possibly other states, asking doctors to provide examples of misdiagnosed people with chronic Lyme and/or had adverse effects due to treatment of chronic Lyme.  The fact she could only conjure up 5 cases when there are nearly 400,000 new cases of LD each year.  She even dangled a carrot by giving them co-authorship.  https://www.lymedisease.org/touchedbylyme-cdc-ignores-ethics/

The Washington Post, despite all the controversy over TBI’s and the unethical approach by Nelson, repeated the CDC dogma here:  https://www.washingtonpost.com/news/to-your-health/wp/2017/06/15/dangerous-unproven-treatments-for-chronic-lyme-disease-cause-are-on-the-rise/?utm_term=.de7c108522d6#comments

ILADS just submitted their rebuttal:  https://www.lymediseaseassociation.org/images/NewDirectory/LDANewsandUpdates/2017_ILADS_LetterToTheEditor_MMWR.pdf

Another rebuttal by Pat Smith, President of LDA:  https://madisonarealymesupportgroup.com/2017/06/16/who-controls-the-fake-lyme-disease-news/

Lee’s rebuttal:  https://madisonarealymesupportgroup.com/2017/06/19/lees-rebuttal-to-cdc-article-in-mmwr/

And lastly, Conner’s letter to the Washington Post on their lack of ethics: https://madisonarealymesupportgroup.com/2017/06/19/conners-letter-to-washington-post-on-ethics-and-integrity/  Conner states, “The Washington Post health editor Laura Helmuth has in the past disclosed during her post as health editor at Slate that she does not believe in persisting Lyme disease because an acquaintance of hers committed suicide while undergoing treatment, and she believes the treatment is what drove her friend to suicide.”

Helmuth obviously hasn’t read this:  https://madisonarealymesupportgroup.com/2017/06/20/suicide-lyme-and-associated-diseases/

 

Conner’s Letter to Washington Post on Ethics and Integrity

http://www.huffingtonpost.com/entry/an-open-letter-to-editors-of-the-washington-post-about_us_59451b65e4b024b7e0df4c56   06/17/2017 10:33 am ET

Dear Editors of the Washington Post:

I have a serious concern as a Washington Post reader and as a lifelong resident of the Washington, D.C. area. My hope is that newspaper editors today retain an adequate attention span necessary to consider concerns vital to the public interest. If you do not have the time or interest, please delegate this to a competent and thorough staff member under your employ. As your reader and an engaged citizen, I have taken the time to write it and I hope you will respect this time and effort by considering these words.

If you are older than 35 years of age, you will recall the nature by which AIDS ravaged the nation in the early 1980s. The federal government and the media did not attend to the emergency. Both parties in fact contributed to the marginalization of HIV/AIDS patients for too long, and to the conveyance of hyperbolic and false information. According to RealClearPolitics, “Reagan did not even mention the word AIDS,” Washington Post columnist Richard Cohen wrote, “until the disease was impossible to ignore and his friend Rock Hudson had died from it.”

Ronald Reagan first said the word “AIDS” in 1985. When he said it, he made excuses for overlooking and diminishing the import of a rapidly spreading firestorm of infectious disease. From the New York Times:

President Reagan, who has been accused of public indifference to the AIDS crisis by groups representing victims of the deadly disease, said last night that his Administration was already making a ‘’vital contribution’’ to research on the disease within the limits imposed by ‘’budgetary restraints.’’

The New York Times went on:

His remarks appeared to be the first time he has publicly addressed the issue of the lethal disease that has claimed thousands of victims, primarily among male homosexuals, intravenous drug addicts and hemophilliacs whose condition requires frequent blood transfusions. Although the Department of Health and Human Services has declared AIDS its ‘’number one priority,’’ Mr. Reagan himself has been criticized by groups calling for more Government action on the disease.
Who these critical “groups” were is not described by the Times, and so that information is lost to history and can only be speculated 30 years later. With hindsight, what can be asserted with no uncertainty is that the spread of the HIV virus was bolstered by public opposition to those who contracted the virus and who developed AIDS. Even as people died in rapidly escalating numbers, the societal stigma, finger pointing, and denial of treatment, empathy, and human dignity to those whose bodies were broken down by opportunistic infections controlled the reactions of governmental oversight and news media and talk show depictions informed by pathological homophobia that hampered proper journalistic investigation and which together facilitated the spread of the disease.

As a result of suppression and denial and cruel treatment of HIV/AIDS patients, an activism group called AIDS Coalition to Unleash Power—ACT UP—was formed. These activists were loud. To many they appeared unhinged, too angry. Today, this group receives a great share of credit in having awaken the public to the HIV/AIDS crisis. Today we understand the passion of those who participated in the ACT UP movement.

During the same year, 1987, Randy Shilts authored a book called And the Band Played On, best known now as an HBO docudrama, which thoroughly documented the rise of the HIV/AIDS epidemic in the United States. Shilts wrote in the introduction:

“I would not have been able to write this book if I had not been a reporter at the San Francisco Chronicle, the only daily newspaper in the United States that did not need a movie star to come down with AIDS before it considered the epidemic a legitimate news story deserving thorough coverage.”

It’s a striking statement, isn’t it?

I hope it is striking to the editors of the Washington Post, which prides itself on being a news organization of record. The Post should have done better. The Post should have been more visionary and more reasonable.

What Shilts in 1987 described an epidemic we now know to be a pandemic, a global massacre by infectious disease. No one wanted to hear it. AIDS patients were untouchables even in 1987. Shilts further wrote:

“By the time America paid attention to the disease, it was too late to do anything about it. The virus was already a pandemic in the nation, having spread to every corner of the North American continent. The AIDS epidemic, of course, did not arise full grown from the biological landscape; the problem had been festering throughout the decade. There had been a time when much of this suffering could have been prevented, but by 1985 that time had passed. Indeed, by the time we learned that Rock Hudson was stricken […] hundreds of thousands were infected with the virus that causes the disease.”

How is this relevant in 2017?

I am going to ask you, as journalists and editors, to challenge your preconceived notions—and yes, even your egos—and tell you that your news organization is contributing to a replay of this disturbing historic event.

Your publication, the Washington Post, on June 15 published an egregiously biased, contextless and misleading story that is an affront to tens or perhaps hundreds of thousands of people who are living with complex, serious, life-affecting, disabling effects of tickborne illnesses including but not solely Lyme disease today are being dismissed and derided by both federal public health agencies and the press—by your colleagues—as AIDS patients were. This has got to stop.

On June 15, the CDC issued a Morbidity and Mortality Weekly Report that profiles five extreme case studies in which five patients suffered or died as a result of blood infections acquired from intravenous treatments for their diseases. The CDC’s conclusion based upon these five reports was that any medical doctor who treats Lyme disease patients with antibiotics for longer than 28 days is malicious and likely to kill patients.

This report profiled five isolated anecdotal incidents. The CDC then concluded as a result of these five incidents that “Systematic investigations would be useful to understand the scope and consequences of adverse effects resulting from treatment of persons with a diagnosis of chronic Lyme disease.” There is nothing inherently incorrect about this suggestion, although it implies that the five profiled instances reflect a common, general outcome of Lyme disease treatment. Washington Post National Reporter Lena Sun further exaggerated the inference, writing:

“These incorrect diagnoses have existed for years. But public health officials and clinicians say they are alarmed because of the increasing severity and scope of some treatments in recent years,” said Christina Nelson, a medical epidemiologist and author of a report released Thursday by the Centers for Disease Control and Prevention.

But based on information received in the past three years from state and local health departments, and from clinicians who have treated patients who have become very sick as a result of these treatments, “we really have a sense that both the treatment and scope are broadening,” [Christina] Nelson said.
“Health-care providers are seeing the fallout,” she said. “These treatments are really dangerous. This is just the tip of a very large iceberg that no one is talking about.”
Sun goes on to describe the anecdotal case studies, interlaced with arguably hyperbolic quotes from Christina Nelson, author of the CDC’s report. Lyme disease patient advocacy and education organization LymeDisease.org, it should be noted, in 2014 filed an ethics complaint with the CDC based upon uncovered emails that Nelson had sent out specifically seeking information about cases of medical complications associated with Lyme disease treatment. Lorraine Johnson wrote on behalf of LymeDisease.org:

Dr. Nelson is asking for anecdotal evidence intended for a case report that, because it only requests risks, will necessarily over-emphasize and exaggerate the risks associated with treatment. The risk of treatment is extremely context sensitive. The question is whether the risks of treatment are warranted given the potential benefits, the availability of other treatment options, the severity of the patient’s presentation, and the risk tolerance of the individual patient.
By asking for an assessment of treatment risks only, Dr. Nelson is framing the issue such that it leaves out the other half of the equation in a risk/benefit assessment. She is also excluding a question critical to patients who suffer a profoundly diminished quality of life due to their illness, namely the risk of not treating.
Several years later, Nelson issued her report citing five cases, and the Washington Post conveyed the findings of that report and its author in a manner uncharacteristic of the venerable news organization, in what one reader in the comments section appropriately described as “press release reporting.” The entire basis of the story is the two-page CDC report and quotes from the report’s author. Sun performed no journalistic due diligence; the story reflects no research beyond the federal agency’s report and suggests that there is no valid counterpoint to the assertions. Worse, Sun retweeted a tweet from Washington Post Health Editor Laura Helmuth, whose impressive resume involves a degree in science writing and employment as a health writer or editor at brand-name publications including Smithsonian, National Geographic and Slate. Helmuth’s tweet amped up the one-sided dramatization of the CDC’s selective bias by editorializing that “quack medicine kills.”

Washington, We’ve Got a Problem

Despite the laurels associated with the Washington Post and the impressive-sounding background of its health editor, the June 15 story is strikingly poor—and worse, irresponsible—journalism.

To begin with, it is simply unreasonable to conclude that five cases of medical complications are cause for national panic and condemnation of all practitioners of a given medical discipline. The CDC estimates around 300,000 annual new infections of Lyme disease among the United States population. Five instances of medical complications, however severe, cannot be projected to reflect malpractice and negligence among an entire disease population.

From the CDC:

Central line-associated bloodstream infections (CLABSIs) result in thousands of deaths each year and billions of dollars in added costs to the U.S. healthcare system, yet these infections are preventable. CDC is providing guidelines and tools to the healthcare community to help end CLABSIs.

Neither the CDC nor Washington Post health reporters accuse healthcare providers of negligence, malpractice, or willful maliciousness in any case except Lyme disease treatment. This warrants investigation.

CDC also reports that over 41,000 blood infections are acquired from IVs managed by healthcare providers in hospitals annually, and a total of 721,800 hospital-associated infections, 75,000 of which killed hospitalized patients in 2011. The CDC reminds patients as it provides this information that healthcare providers do their best, are competent and caring—except in the five cases of Lyme disease treatment, which it suggests as evidence of sector-wide medical negligence.

Hours after the June 15 CDC report was issued, the Washington Post published its story, which essentially repackaged the CDC information, but which in a manner uncharacteristic to most Washington Post reporting thrust the information forth with a strong bias, without any counterpoint or any acknowledgment of the controversy and debate surrounding Lyme disease. The only information offered in the text and via an embedded video are from the CDC, essentially then making the Washington Post an outlet for federal agency communications.

In an era during which the federal government’s claims are constantly called into question, when the federal government itself has declared the press—and particularly the Washington Post—enemies of the state, it is unusual that the Washington Post would relate this information from a federal agency as if it is the agency’s public relations outlet, without any further consideration.

According to the American Press Institute:

Journalism should also attempt to fairly represent varied viewpoints and interests in society and to place them in context rather than highlight only the conflicting fringes of debate. Accuracy and truthfulness also require that the public discussion not neglect points of common ground or instances where problems are not just identified but also solved.
Journalism, then, is more than providing an outlet for discussion or adding one’s voice to the conversation. Journalism carries with it a responsibility to improve the quality of debate by providing verified information and intellectual rigor. A forum without regard for facts fails to inform and degrades rather than improves the quality and effectiveness of citizen decision-making.

The Washington Post’s story fails absolutely by these measures.

Helmuth, for her part, has a history of politicizing Lyme disease and mocking Lyme disease patients, having published a story in Slate in 2012 suggesting Lyme disease patients are foolish, “confused,” mentally ill victims who were being manipulated by the Mitt Romney campaign. Her tweet about that story read “Are you a chronic Lyme disease truther? Mitt Romney’s your man!”

If your inclination is to dismiss this, and you are a journalist, you have a responsibility to consider the aspect of fairness, of the effects of politicizing a health concern, and to reflect upon the recent history of the politicization and stigmatization of HIV/AIDS patients. To acknowledge, consider, and consider whether you believe it is appropriate that this individual is given editorial oversight for the Washington Post for health-related reporting. Even if you buy into the false notion that Helmuth has promulgated in her own writing that persisting Lyme disease is a mental illness and not a physical illness, as a journalist, do you believe that mocking, degrading, dehumanizing and maligning ill patients—whether physically ill or mentally ill—in this way is responsible?

This is from one of the Washington Post‘s primary health journalists. Imagine a professional working under the employ of one of the nation’s most notable news organizations saying such things about HIV or cancer patients. I ask you to take a moment and really think about that.

If Democracy Dies in Darkness, the Washington Post through the reporting of Sun, Helmuth and like-minded health editors and reporters seems intent on relegating Lyme disease patient pleas for respectable investigation to dark accusations of madness and shining a spotlight on these individuals as they writhe in pain and insist it’s not all in their heads, as the health writers themselves slap the Washington Post brand on their mockery.

If the above sentence is hyperbolic, consider that a counterbalance to the Washington Post’s biased exaggeration of a single side of the Lyme disease debate.

For its part, the CDC itself states that Lyme disease is the most prevalent vector-borne infectious disease in the country, and the most rapidly spreading infectious disease in the country, with over 320,000 estimated new infections annually. The CDC recently updated its website to disclose—previously denied:

“Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and “auto–immune” responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter’s syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research. Clinical studies are ongoing to determine the cause of PTLDS in humans.”

The Washington Post story barely addresses ongoing scientific debates about what causes patients who are diagnosed with Lyme disease, treated with a short-term course of antibiotics as recommended by the CDC, and then experience continually worsening neurological, rheumatological, neuropsychiatric and other symptoms. Sun clinches her retelling of the CDC report with this statement: “All five patients developed serious complications; two patients died.”

Ominous.

What Sun doesn’t address, or even acknowledge as existing within our realm of reality, are the countless cases—anecdotal, as the CDC cases are—of patients whose lives improved and in many cases were saved with antibiotic treatment. Not a mention of these cases, whether they involve obscure, everyday people, or the many and increasing numbers of well-known people who include Avril Lavigne, Amy Tan, Yolanda Hadid, Alec Baldwin, Ally Hilfiger, Kris Kristofferson, George W. Bush, and just revealed within the past couple of months Kelly Osbourne, Shania Twain and Alec Baldwin, all of whom (with the exception of Bush) have publicly discussed the severity of their illnesses and difficulty of recovering, and several of whom have said they encountered resistance by medical professionals to diagnose them and to give them the treatment that ultimately saved their lives. Hilfiger was diagnosed with Lyme by mental health workers after having been hospitalized for mental illness; following treatment, her supposed insanity went away. An emotionally wrecked Lavigne cried on Good Morning America because “doctors tell you you’re crazy.” Tan has written that she could not tell whether her hallucinations were real or imagined—an effect of a neurological infection that was not imrpoved with psychiatric medications, but which resolved totally with antibiotic treatment.

Kristofferson was diagnosed with Alzheimer’s disease, a terminal condition, before he was treated for Lyme disease with antibiotics and his dementia went away.

And yet readers of the Washington Post would be led to believe that five cases of infected intravenous treatments condemn an entire practice, and none of these other cases—despite commanding magazine covers—even exist in this world.

What possesses health and medicine-sector reporters to assign judgment and to broadly condemn both physicians and patients who occur in great numbers? It is regarded as unethical for medical practitioners to issue diagnoses of individuals whom they’ve not examined, or to comment on the treatments of these individuals. What justifies journalists doing this?

I want an answer to this question.

I have requested meetings with Sun, Helmuth and Washington Post editors to discuss Lyme disease in greater context. No one from the Post has acknowledged these requests.

At what point were reporters granted greater knowledge of individuals’ health and well being than those individuals have, living in their own bodies and navigating the healthcare system themselves?

I was taught in college that five principles guide ethical and reasonable journalism. They are:

Truth and Accuracy
Independence
Fairness and Impartiality
Humanity
Accountability

Truth and accuracy

The Washington Post story relayed CDC-issued information profiling five case studies and concludes: “Clinicians who call themselves ‘Lyme literate’ are often self-annointed [sic]; there is no special training program and no requirement to be board certified in infectious disease, Nelson said.”

In fact, the truth is that a medical association for Lyme and associated tickborne diseases exists, and while this organization does not certify medical professionals as specialists, it offers ongoing training and annual medical conferences about new and emerging research relating to these diseases.

In fact, while the CDC does not endorse the diagnosis and treatment guidelines of this medical association, the federal National Guidelines Clearinghouse—housed under the Department of Health and Human Services—offers these guidelines alone to medical practitioners for the treatment of Lyme disease, because the guidelines that the CDC continues to endorse were removed by the Clearinghouse for the reason that they were determined to violate the federal agency’s regulations for not having been reviewed against current science for over a decade, and review at least every five years is required. Nothing of this nature was reported by the Washington Post. As a news organization of record, it would be appropriate for the Washington Post to investigate this peculiar incident of the federal agency charged with public health—the CDC—continuing to promote and endorse healthcare guidelines that were de-listed by the federal clearinghouse for medical treatment guidelines. Will the Washington Post investigate this? Will any major news organization investigate this? Parties seeking parity and respectful treatment for Lyme disease patients have been asking for a year and a half and their requests have been met by silence. Meanwhile, health editors such as Helmuth who have displayed bias not only in favor of one side of an issue hotly debated even by scientific researchers, but bias against patients that, again, is a direct parallel to the cruel treatment of HIV/AIDS patients in the 1980s.

Does the Washington Post care? Evidently not, as my requests for a meeting have gone unanswered, and complaints by readers both in response to the article and via social media and direct e-mails likewise have gone unanswered.

This is the tip of the proverbial iceberg. The point here is that the Post story is untruthful and inaccurate by exclusion and by suggesting that physicians who practice according to the guidelines of the International Lyme and Associated Diseases Society are reckless, maverick-style malpractitioners. Readers would not know the difference, and for this reason the Post story fails the first basic tenet of ethical journalism.

Independence

I would ask you to compare the Morbidity and Mortality Weekly Report with the Washington Post story that describes it.

I would ask you to identify any aspects of the story, aside from hyperbole, that reflect independence from the CDC’s point of view.

I ask you to ask yourself and your colleagues whether this story reflects independent journalism, or if it in effect offers the Washington Post as a branded outlet for the dissemination of information from a federal agency. In light of so many questions surrounding the current presidential administration and other governmental considerations, is this a wise or ethical use of the news media, as a venue through which to relay information from a federal agency without context, consideration of third-party opinions, and via the lens of undisclosed bias on the part of reporting staff?

The Washington Post health editor’s diminishing treatment of the Lyme disease community—sick people who she has called “truthers” and told to vote for Mitt Romney—recalls a memory from my youth of Oprah Winfrey show audience members howling and jeering and booing and using epithets against a man who was dying from AIDS. Winfrey, some might say heroically and some might say acting on a basic level of decency, intervened and explained the nature of empathy to those people and, through her show, to the audience, if my memory is serving me.

I am not asking Washington Post editors or writers to become suddenly empathetic human beings if this is not their respective natures. People can’t be changed that way. I am demanding that the Washington Post as a journalism organization manage its staff adequately to temper their biases and report fairly and impartially. Not to be better people, but to behave more professionally than 1980s daytime talk show audiences. I think this is a fair request.

Fairness and Impartiality

The New York Times in 2012 published a collection of seven opinion pieces, each reflecting a different and nuanced opinion of the Lyme disease epidemic. The series “Room for Debate” included essays by a Lyme disease specialist, a reporter, a nonfiction author who published a book surveying the Lyme disease epidemic, Amy Tan, a well-known fiction writer who became disabled from Lyme disease and who subsequently recovered with effective treatment; a medical researcher; two Infectious Disease Society of America representative physicians who argue against diagnosing and treating persisting/chronic Lyme disease; and a CDC official.

The New York Times presented these essays side by side, allowing each individual to speak on his or her own behalf based upon their own experiences. The New York Times in this series displayed fairness and impartiality, not selecting opinions with which its editors agreed to position publicly as the unquestioned gospel. To the contrary, the Washington Post story displays contextless bias and it renders judgment on a broad swath of individuals without nuance or counterpoint. It devastates me to the depths of my soul not to have even a passing thought aligned with those of Donald Trump, but in this instance, the Washington Post is passing off personal bias as impartial journalism—in other words, “fake news.” That the Post has done this, and has not responded to any inquiry requesting open conversation about it, honestly makes me question the veracity of the news organization’s reporting about other concerns. In what instances is the Post objective, and in what instances is it relaying someone else’s selective opinion in such a way that unwitting readers would receive as the unquestioned truth? How many parents of children with Lyme disease, reading the Post’s single-sided presentation of Lyme disease, will tell their children to stop complaining about phantom pains as a potential infectious disease breaks down their bodies? There are real-world consequences to reporting with personal bias.

Where the New York Times exemplified the tenet of fairness and impartiality, the Washington Post exemplified BuzzFeed, Breitbart or Daily Mail-style selectivity and hyperbole, and the extremely worrisome recent trend of journalists repackaging press releases and other materials as their own stories without conducting any due diligence to determine where such information fits within the broader context, or if it is even entirely accurate.

From the Columbia Journalism Review:

Reshaping a press release into story form without adding any real context, pertinent information, or countervailing opinion isn’t journalism, appearances notwithstanding. It’s actually not all that different from what a Karen Ryan does — packaging PR so as it give it the imprimatur of editorial legitimacy.

The same applies to reshaping a short anecdotal report from a federal agency and adding a couple of quotes from its author. It’s still “packaging PR so as to give it the imprimatur of editorial legitimacy.” Aren’t you better than that, Washington Post?

My assumption here is that at least two forces were behind this: One, reporters taking for granted that any information issued from an agency such as the CDC is gospel, not to be questioned and with no additional research required or encouraged, and two, personal bias. I prefer substantiated opinion to assumption, but my requests for meetings with Washington Post editors and health writers to discuss Lyme disease have not been acknowledged in any way and so assumption is the only inference available to me.

To the first point, I find it peculiar that in 2016 the Washington Post reported revelations by the British Journal of Medicine that infections acquired at hospitals should be disclosed as the third leading cause of death within the United States, but that former CDC director Tom Frieden mandated that this information by kept from the public because it reflects poorly on the federal agency. RealClearPolitics was bolder:

Former President Obama’s CDC head, Dr. Tom Frieden, resisted requests from victims’ families for honest death certificates. Families urged him to recommend that certificates start documenting when infection caused or contributed to death. But Frieden did nothing. It’s true that it’s each state’s decision, but most follow CDC guidance. The agency and the states are guilty of a cover-up mentality. It’s time that death certificates tell the truth and hold hospitals accountable.

Given this, I find it odd that the Post one year later relayed information from the CDC about five case studies of medically acquired infection, applied to the entire arena of Lyme disease treatment as condemnation of the practice, and did not perform any further background research.

Is the Washington Post a dissemination outlet for federal agencies or a critical news organization that observes ethical journalistic practice? Please decide and practice consistently.

To the point of bias, I would again remind you that Washington Post health editor Laura Helmuth has in the past disclosed during her post as health editor at Slate that she does not believe in persisting Lyme disease because an acquaintance of hers committed suicide while undergoing treatment, and she believes the treatment is what drove her friend to suicide. While I sympathize with Ms. Helmuth’s loss, an inconvenient reality about Lyme disease is that, as with its close relative syphilis, the infectious agent that causes it manifests pathologically when not adequately treated as neuroborreliosis, an infection of the central nervous system, which can result in severe neuropsychiatric symptoms ranging from depression and panic disorders to obsessive-compulsive-type disorders, psychosis and dementia. Suicide rates are high among Lyme disease patients because psychiatric disorders can be caused by the Lyme disease infection itself, and because Lyme disease patients are routinely rejected by healthcare providers, and even mocked by them and by, yes, the media.

From the American Journal of Psychiatry all the way back in 1994:

Up to 40% of patients with Lyme disease develop neurologic involvement of either the peripheral or central nervous system. Dissemination to the CNS can occur within the first few weeks after skin infection. Like syphilis, Lyme disease may have a latency period of months to years before symptoms of late infection emerge. Early signs include meningitis, encephalitis, cranial neuritis, and radiculoneuropathies. Later, encephalomyelitis and encephalopathy may occur. A broad range of psychiatric reactions have been associated with Lyme disease including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder. Depressive states among patients with late Lyme disease are fairly common, ranging across studies from 26% to 66%. The microbiology of Borrelia burgdorferi sheds light on why Lyme disease can be relapsing and remitting and why it can be refractory to normal immune surveillance and standard antibiotic regimens.

Despite this knowledge, or absent of it, an embittered Helmuth blames improper care for her acquaintance—who Helmuth unilaterally diagnosed as never having had Lyme disease—for her acquaintance’s depression and ultimately her suicide rather than considering the neuropsychiatric effects of the physical illness. Is Helmuth a physician? Is she a physician who examined and performed thorough differential diagnosis on this woman? In her position as health editor, what emboldens her—and what senior editors empower her—to apply her past traumas to single-sided reporting on a highly controversial and little-understood health condition?

Humanity

“Journalists should do no harm. What we publish or broadcast may be hurtful, but we should be aware of the impact of our words and images on the lives of others.”

Accountability

After I read Lena Sun’s article and Laura Helmuth’s derogatory tweet (and Sun’s retweet) yesterday, I contacted both Washington Post health writers and requested a face-to-face meeting through which to respectfully discuss (and debate if necessary) more than one perspective on Lyme disease. The facts are that this disease is controversial, and that federal agencies’, infectious disease specialists’, Lyme disease specialists’ and patients’ experiences are contradictory to the information purported by some but not all federal agencies, and that there is abundant medical research that fuels both sides of the debate with no conclusion about the cause or effective treatment of persisting Lyme disease symptoms. Neither writer replied. I petitioned them with evidence, as well as with appeals to their humanity and interest in journalistic accountability. Neither writer replied. What does the tenet of accountability mean to the Washington Post?

I then contacted a number of Washington Post editors, not knowing who is most appropriate. None has replied. And so through this letter, I am contacting you, hoping at least one individual at your respected organization will perform her due diligence.

The Washington Post always has been my primary and local news source, and I cannot overstate my disappointment in this article and in the lack of humanity or accountability that accompany it. This contrasts starkly, again, with the New York Times; earlier this year, I tweeted a criticism of a (non-health-related) story reported by the Times, and I was immediately contacted via Twitter by its author, who asked to speak with me via telephone. In that case, my concern was more of a personal political interest and I had not requested such a discussion; this longtime journalist told me via telephone that her due diligence as a journalist is to consider different perspectives, to hear the voices of her readers, and to question whether she is writing without bias. It was a strikingly impressive event from my perspective, and one that gave me great faith in the Times and its authors’ (and presumably its editors’) adherence to the values of good journalism.

It was a stark contrast to both the content and the (non-) response of the Washington Post‘s treatment of Lyme disease.

Lyme disease patient activists present themselves more and more as angry, embittered, demanding, sometimes unhinged. For anyone wondering why this is, I strongly encourage you to read Randy Shilts’s And the Band Played On and to look at the history of ACT UP, both of which were necessary—loud, angry, demanding and thoroughly annotated—to wake up the nation to the epidemic that was spreading despite their denial and condemnation of sick and dying people.

In closing, I want to draw your attention to legislation passed by the federal government of Canada in 2014. As you read this, note that this is federal Canadian law, not conspiracy theory or hyperbolic rants of a growing cohort of mentally ill people. It is a serious accusation and condemnation of United States policy and ethics, and it should be factored into any and all reporting on Lyme disease in the future.

An excerpt of the Federal Framework on Lyme Disease Act, S.C. 2014, c. 37:

Whereas recent research further demonstrates the persistence of Borrelia spirochetes after antibiotic treatment that follows the guidelines used in Canada (Embers et al., 2012) and indicates that current serology does not adequately describe the diversity of Borrelia bacteria existing in Canada and that the general understanding of, and practices for dealing with, Lyme disease are no longer sufficient or in line with emerging evidence of how the disease operates (Ogden et al., 2011);

Whereas the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness;

An excerpt of an article written by Washington Post health editor Laura Helmuth for Slate:

If you are a doctor who believes that the CDC and NIH have misrepresented carefully vetted clinical trial data about the diagnosis and treatment of Lyme disease, however, you might diagnose your patient with chronic Lyme disease and prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics.

And who would be the biggest supporter of your and your patient’s right to pursue a worth-testing-but-found-wanting treatment? Mitt Romney and Paul Ryan…

Here’s a translation: Forget the science, just channel your legitimate fear of a dangerous disease and your misguided fear of the medical establishment into a vote for us…

Through these words, strong bias and an interest in using polarizing partisan politics to sway readers to question or even condemn the judgment of those who live with or treat persisting Lyme disease is evident. Helmuth went on:

Disregarding my own advice about not taking an anecdote as data, I have my own story about chronic Lyme disease. A friend of one of my brothers had been suffering for years from headaches, fatigue, a sense of despair, a belief that she wasn’t worthy of her job or her boyfriend. She was diagnosed with chronic Lyme disease and was treated with antibiotics, which were ineffective. What she wasn’t treated for, and could have been, was severe depression. She killed herself.

Listen up, Mitt Romney, Paul Ryan, and Bob McDonnell: Medical research and treatment save lives. Please do not perpetuate a mistrust of them in vulnerable, confused people.

Through this disclosure, which Helmuth added to the end of her essay to drive the point home, the journalist reveals a personal bias and emotional motivation to represent editorially her perspective on Lyme disease: That it is a mental illness, not a physical illness, and that her brother’s friend would not have committed suicide had she not been treated for Lyme disease.

Even more troublingly, the health writer twists this experience—undoubtedly traumatic, but not an excuse to project her trauma onto readers and a population of sick people—into rhetorical manipulation of readers who presuppose Republican party members to be entirely wrong about all things and, therefore, given stated concerns about Lyme disease, any reader who then does not agree with Helmuth’s view of Lyme disease is likewise wrong and harming “vulnerable, confused people.”

I acquired Lyme disease 20 years ago from the bite of a tick, not through malfeasance, not through immoral acts, and not through the manifestation of a mental illness as imagined physical symptoms. I was vulnerable and confused while I was experiencing late-stage symptoms of the insufficiently treated disease in my early 30s, made more vulnerable and confused by the dehumanizing attitudes of some medical professionals. I’ve been treated effectively, and I am neither vulnerable nor confused now, and I am disturbed by the ongoing, socially sanctioned marginalization of Lyme disease patients and the doctors who are doing their best to treat them given inadequate attention from federal agencies and tremendously inadequate independent federal research into this epidemic.

You have got to do better as a journalistic entity.

As a 39 year-old gay man who came of age at the height of the HIV/AIDS crisis, attended to the risk and internalized the stigma associated with the disease, I am telling you that the bias shown to Lyme disease patients today, and the lack of journalistic investigation into the ACT UP-style pleas of the Lyme disease community is stunning given that the AIDS epidemic is such as recent collective memory, and by most journalistic accounts, nothing was learned from that experience.

You have got to do better, to be more thorough, to fairly investigate what is going on with this disease, and to report in an ethical manner, not regurgitate advisories that skew and politicize reality.

I request and invite a meeting with health and any other relevant Washington Post editors at your earliest convenience.

Written in all sincerity,

David Michael Conner

Lee’s Rebuttal to CDC Article in MMWR

Sin Hang Lee also commented about the CDC article in the MMWR which gives 5 anecdotal cases of Chronic Lyme patients who didn’t benefit from IV treatment.

 

Sin Hang Lee, director of Milford Molecular Diagnostics Laboratory stated this:

Marzec and colleagues presented five “chronic Lyme disease” patients who did not benefit from additional antibiotic treatment when the diagnoses of “chronic Lyme disease” were made on the basis of clinical symptoms and signs (www.cdc.gov/lyme/diagnosistesting/) or by unvalidated tests. The authors have not presented evidence to show that chronic Lyme disease patients with borrelial spirochetemia proven by culture or by gene sequencing do not benefit from additional antibiotic treatment. In medicine, certain chronic infections, such as subacute bacterial endocarditis, may require intravenous or prolonged antibiotic treatment [1] in spite of its potential side effects.

The CDC should give the practitioners a case definition of Lyme disease, as for Ebola and Zika.

Conflicts of Interest: Sin Hang Lee, MD is the director of Milford Molecular Diagnostics Laboratory specialized in developing DNA sequencing-based diagnostic tests.

References 1. Hoen B. Epidemiology and antibiotic treatment of infective endocarditis: an update. Heart 2006 ;92 :1694-700. Review.

Stricker, Johnson Rebuttal to Article in MMWR

https://www.ncbi.nlm.nih.gov/pubmed/28617768

Lorraine Johnson, Raphael B. Stricker, MD.

Lymedisease.org, PO Box 1352, Chico, CA 95927; ILADS, PO Box 341461, Bethesda, MD 20827

The article by Marzec et al. published in MMWR purports to show the dangers of treatment in patients diagnosed with chronic Lyme disease  https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm?s_cid=mm6623a3_e  (1). Recent reports from the Centers for Disease Control and Prevention (CDC) indicate that more than 300,000 new cases of Lyme disease are diagnosed each year in the USA (2). The MMWR article from the CDC describes five anecdotal cases of treatment complications in these patients while ignoring the significant morbidity related to denial of treatment for chronic Lyme disease (2,3). The resultant biased report raises scientific and ethical issues about the CDC’s role in promoting the best care for patients with tickborne diseases.

The MMWR piece resulted from anecdotal reports gathered by Dr. Christina Nelson of the CDC. The article notes that the information was gathered because “clinicians and state health departments periodically contact CDC concerning patients who have acquired serious bacterial infections during treatments for chronic Lyme disease.” However, an ethics complaint filed against Dr. Nelson by the Lyme disease patient advocacy group LymeDisease.org suggests that these adverse event reports were in fact specifically solicited by Dr. Nelson via emails distributed in 2014 (4). Dr. Nelson asked clinicians from the Infectious Diseases Society of America (IDSA) to provide anecdotal evidence of harm to patients from intravenous antibiotic therapy related to Lyme disease, and she apparently offered coauthorship of her article as an incentive to describe these adverse events. She did not ask for consequences of failing to treat these patients, nor did she solicit commentary from practitioners who treat chronic Lyme disease according to the guidelines of the International Lyme and Associated Diseases Society (ILADS).

The risk of any medical treatment is extremely context-sensitive. A crucial question is whether the risks of treatment are warranted given the potential benefits, the availability of other treatment options, the severity of the patient’s presentation, and the risk tolerance of the individual patient. By asking for an assessment of treatment risks only, Dr. Nelson is framing the issue in a manner that excludes the other half of the equation in a risk/benefit assessment. She is also ignoring an issue that is critical to patients who suffer a profoundly diminished quality of life due to their illness, namely the risk of not treating (5,6). Moreover, by failing to mention that these adverse event reports were rare and specifically solicited, she implies that these rare occurrences are a common concern. In reality, studies of the risks and benefits associated with intravenous antibiotic treatment for Lyme disease indicate that the risks of adverse events are no greater than the risks of intravenous therapy in other unrelated diseases (7,8).

By asking the question only of those on one side of the controversy, Dr. Nelson is further demonstrating favoritism and a lack of impartiality on the part of the CDC. Accordingly, Dr. Nelson’s solicitation of anecdotal adverse events for case studies of Lyme disease is a highly inappropriate partisan act of favoritism toward the IDSA viewpoint at the expense of critical stakeholders – Lyme disease patients and their treating physicians – and an attack on the ILADS viewpoints.

References

1. Marzec NS, Nelson C, Waldron PR, et al. Serious bacterial infections acquired during treatment of patients given a diagnosis of chronic Lyme disease – United States. MMWR Morb Mortal Wkly Rep. 2017 Jun 16;66(23):607-609.

2. Stricker RB, Johnson L. Lyme disease: Call for a ‘‘Manhattan Project’’ to combat the epidemic. PLoS Pathog. 2014;10(1): e1003796.

3. Stricker RB, Fesler MC. Chronic Lyme disease: A working case definition. Chronic Dis Int. 2017; 4(1): 1025.

4. Leland DK. TOUCHED BY LYME: CDC ignores ethics, attacks “chronic Lyme”. Available at https://www.lymedisease.org/touchedbylyme-cdc-ignores-ethics/. Accessed June 16, 2017.

5. Johnson L, Aylward A, Stricker RB. Healthcare access and burden of care for patients with Lyme disease: a large United States survey. Health Policy. 2011;102: 64–71.

6. Johnson L, Wilcox S, Mankoff J, Stricker RB. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. Peer J. 2014;2:e322.

7. Stricker RB, Green CL, Savely VR, Chamallas SN, Johnson L. Safety of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease. Minerva Med. 2010;101:1–7.

8. Stricker RB, Delong AK, Green CL, et al. Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease. Int J Gen Med. 2011; 4: 639–646.