Archive for the ‘Lyme’ 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.

 

Trump Aide Bankrupted by Lyme

http://www.thedailybeast.com/the-trump-aide-bankrupted-by-a-single-illness?via=newsletter&source=Weekend

AN AMERICAN TALE

The Trump Aide Bankrupted by a Single Illness

How Dan Scavino, who rose from Trump golf course caddy to White House social-media guru, and his wife were forced to declare bankruptcy over her chronic disease.

Before he was Donald Trump’s White House social-media coordinator, Dan Scavino lived with his wife, Jennifer, in a 2,900-square-foot colonial-style home on a winding residential street in Hopewell Junction, New York. The couple’s half-million-dollar dream home had four bedrooms, central air, and a yard plenty big for two sons and two Portuguese water dogs to play in. A Mercedes Benz GL550 and a leased Toyota Avalon sat in their three-car driveway.

The Scavinos were an aspirational archetype of American success. Dan had risen from a lowly caddy at one of Trump’s golf courses to an executive in Trump’s golfing empire, all before he hit 40. He had his own business, Scavino & Associates, that operated from their home. But, despite their good fortune, like many American families the Scavinos were one illness away from economic catastrophe. Their 2015 bankruptcy filing, retrieved by The Daily Beast, tells another quintessentially American story.

Jennifer Scavino has suffered from chronic Lyme disease for over a decade (Dan has tweeted frequently about his wife’s condition, and, for the last two years, been a vocal advocate for Lyme disease awareness and research). In 2014 and 2015, Dan quit working to care for her, and the only income the family was earning was from Jennifer’s disability benefits, plus Social Security payments for the children. They racked up tens of thousands of dollars in credit-card debt and medical bills. Even with a $48,000 loan from her parents, the financial stress of the house, cars, and raising their sons was too much. On July 31, 2015, the Scavinos filed for Chapter 7 bankruptcy.

Chronic Lyme disease is an issue of contention in the medical community. Lyme disease is treatable with antibiotics and doesn’t continue to live in the body after the initial infection. (please see my comment at the end of the article) Patients who say they have it suffer from an array of symptoms, from rheumatism to fatigue to other neurological problems. However, according to a study hosted on the National Institutes of Health website, CLD “has no clinical definition and is not characterized by any objective clinical findings.” Its symptoms mirror fibromyalgia, another amorphous neurological condition, and CLD is sometimes diagnosed by exclusion, which means it’s something doctors will say their patients have when everything else has been ruled out.

But CLD’s lack of a medical definition means a long road to diagnosis and an even longer road to relief. In the aforementioned study, only 2.1 percent of surveyed doctors in Connecticut, one of the regions of the country where CLD is most prevalent, said they’d diagnosed patients with CLD.

Patients who complain of CLD symptoms are certainly suffering from something, but doctors aren’t sure what, one medical professional told The Daily Beast. Self-anointed celebrity Lyme disease activists like Yolanda Foster (the mother of millennial beigecore models Gigi and Bella Hadid) have added a degree of seeming legitimacy to the condition and made more people aware that the mysterious and debilitating symptoms they’re suffering from could be CLD. “Most doctors,” the medical professional added, “don’t think chronic Lyme disease is a thing.”

On a practical level, that means families unlucky enough to face a mysterious chronic neurological condition spend a lot of time and energy figuring out what’s wrong before they can even get to a treatment stage. The Scavinos owed about $48,000 in outstanding medical bills at the time of their bankruptcy filing. In addition, they owed $10,292 to a clinic that specializes in treatments for rare disorders, providing blood transfusions and intravenous drug treatments. Dan has noted, via Twitter, that the condition has cost his family $300,000 over the years.

Months before they filed for bankruptcy, Dan tweeted a photo of one such treatment along with the caption [sic] “My amazing wife, Jennifer has Chronic Inflammatory Polyneuropathy Disease from a tick, resulting in Lyme Disease. We are both 39 years old. 10 years of this awful neurological disease, she is my hero. Not once feeling sorry for herself or really even talking about it outside of our home. While I had to leave my career, I have and will be with her every step of the way. Today is treatment day. Thoughts & prayers to everyone & anyone with neurological disease.”

The Scavino family was lucky, about as lucky as a family struck with chronic illness can be. Jennifer had parents who were in a position to lend them $48,000. They didn’t have to uproot and move to a more affordable town. They were able to keep their house and car and dogs, which, almost charmingly, were listed as worth $0 on the Chapter 7 filing. And Dan’s post-bankruptcy career turned out just fine. He returned to work at his eponymous consultancy firm, eventually landing a job in Trump’s White House. Information caddy to the free world.

Despite Dan’s extraordinary position, the Scavinos are, in their financial problems, typical. They endured something that happens to thousands of families a year. Insurmountable medical bills cause more bankruptcies in the U.S. than anything else. As the Senate moves to gut the law designed to make it easier for people to afford health care, it seems particularly poignant that one of the president’s closest and most devoted employees is a living example of how easily things can go sideways, how even a billionaire’s confidant business owner who lives in a half-million-dollar home can come close to losing everything over something beyond his control.

President Trump is clearly not sold on the American Health Care Act. He told attendees of a closed-door meeting on June 13 that he thought the House’s version of the bill was “mean.” And it would be harmful, to people exactly like a circa-2015 Dan Scavino.

On the morning after the “mean” remarks leaked, Morning Joe panelist (and Daily Beast columnist) Mike Barnicle quipped, “What probably happened is that the president was at one of his golf clubs over the weekend and maybe his caddy complained about the health-care bill. That’s the way this thing works.”

Please, DailyBeast, do your homework.  There are lives at stake!

Rolling Stone – Inside America’s Mysterious Epidemic

http://www.rollingstone.com/culture/features/lyme-disease-inside-americas-mysterious-epidemic-w487776

By Winona Dimeo-Ediger

In 2004, Kelly Osbourne was bitten by a tick. Her dad burned it off with a match and that, she thought, was the end of that.

But in the years that followed, she suffered from persistent body aches, headaches, stomach pain and trouble sleeping. In 2013, she had a seizure on the set of her show, Fashion Police. As her symptoms piled up, so did the prescriptions: Ambien, Trazodone, anti-seizure medications, even painkillers, despite her past addiction issues. The pills robbed her of her energy and emotions. “You know in movies where a mental patient sits in a rocking chair in a cardigan and nightgown and stares at a wall all day?” Osbourne wrote in her new memoir, There Is No F*cking Secret: Letters From a Badass Bitch. “That was me.”

As a last resort, Osbourne consulted an alternative medicine practitioner and asked to be tested for Lyme disease. The test came back positive: she had stage III neurological Lyme. Osbourne immediately flew to Germany to receive stem cell therapy. She kept her diagnosis private, she writes, “not only for fear of pharmaceutical companies coming after me because of the cure I found in Germany but also because it seems like the trendy disease to have right now.”

As unlikely as it seems that a tick-borne illness could ever be deemed “trendy,” Osbourne is right: Lyme disease is having a moment.

In recent years, a growing list of celebrities have gone public with their Lyme diagnoses. In the 2013 documentary The Punk Singer, Kathleen Hanna emerged from a nearly decade-long hiatus to reveal her excruciating battle with Lyme disease. “I didn’t want to face the fact that I was really sick,” she told the camera, tearing up. “I wanted to tell everybody I chose to stop [performing], but I didn’t choose.” Then there was Avril Lavigne on the cover of People magazine in 2015, gazing out pensively over the headline, “I thought I was dying.” In 2016, there was the news that Kris Kristofferson’s tragic memory loss wasn’t due to Alzheimer’s after all; it was Lyme. There was the multiple season storyline on The Real Housewives of Beverly Hills about Yolanda Hadid’s battle with Lyme, the accusations she was faking it, and then the shocking news that her supermodel daughter Bella and son Anwar had Lyme, too.

Lyme has been a known disease for several decades, but only in the past five years has it forced its way into cultural and medical relevance and become something that’s widely discussed. Lyme is now the focus of A-list fundraising galas and E! News headlines. Unfortunately, the increased attention hasn’t translated to a more hopeful prognosis for Lyme sufferers. Roughly 329,000 new infections occur annually, and scientists are projecting a historic spike in infections around the country this summer. For a disease that’s been studied for 40 years, with many prominent people pushing for answers, the truly shocking thing about Lyme disease is how much of a mystery it still is.

“There’s an incredible amount of detail and nuance to the Lyme disease story,” says Taal Levi, assistant professor of quantitative wildlife ecology at Oregon State University. “Anyone who tells you there’s a simple answer is lying to you.”

The history of Lyme disease in the United States is as eerie as it is complicated. In 1975, something strange started happening to people in the town of Lyme, Connecticut. Children and adults reported skin rashes, swollen joints, severe fatigue and even partial paralysis. Health officials suspected the disease was caused by a biting insect due to the frequency of infections appearing in the summer months and the locations of the victims. “Cases tended to occur among persons living near heavily wooded and sparsely settled areas,” Connecticut’s commissioner of health wrote in a letter to state health directors a year after the initial outbreak. “On some roads as many as one in 10 children were affected.”

Despite health officials’ suspicions, the first group of Lyme disease sufferers went years without concrete answers about their illness. Finally, in 1981, a scientist named Willy Burgdorfer discovered that Lyme was caused by bacteria carried in mice and deer and transmitted by deer ticks. The spirochete bacteria in question, borrelia burgdorferi, was named in his honor. Once it was established that Lyme disease was a bacterial infection, the course of treatment seemed obvious: antibiotics. Doctors began treating patients with a six- or 12-week dose. Some people got better, but not all of them. Cut to 36 years later, and not much has changed.

When patients go to the doctor immediately after infection, most of them (about 80 percent) fully recover. For the people who don’t get immediate treatment or don’t respond well to the antibiotics, the prognosis can be much more grim. In these patients, a range of horrific symptoms – muscle aches, fatigue, fever, malaise, joint pain, digestive problems, foggy brain, anxiety, headaches, twitching, memory loss, seizures, depression and paranoia, among many, many others – can persist for a lifetime. The split is so dramatic that Lyme researchers and patient advocates began differentiating between two types of Lyme disease: acute and chronic.

“Acute Lyme refers to the disease that occurs right after initial exposure. That’s when people show up with a fever, muscle pain, rash, flu-like symptoms,” says Mark Soloski, co-director of research at Johns Hopkins’ Lyme Disease Research Center. Post-Treatment Lyme Disease Syndrome, more commonly known as “chronic Lyme,” is different. “We define it as a set of persistent symptoms that are happening six to 12 months after their acute disease. These are folks who have not only symptoms, but loss of functioning. In simple terms, you can’t get out of bed in the morning.”

Of the celebrities who have gone public with their Lyme diagnosis, most fall into the chronic Lyme category: persistent, debilitating symptoms that last for years and are extremely difficult to treat effectively, let alone cure. Still, the CDC has been hesitant to embrace the popular narrative about chronic Lyme. “There’s been some antagonism between the Center for Disease Control and advocacy groups,” says Levi, “particularly in regards to chronic Lyme and if it even exists.”

According to a CDC spokesperson, “the term ‘chronic Lyme disease’ is confusing and misleading because it is used to describe patients with and without Lyme disease.” Instead, the CDC makes a distinction between Lyme disease and Post-Treatment Lyme Disease Syndrome (PTLDS), which they describe as “a condition of persistent symptoms that exists in some patients with Lyme disease after treatment.” In other words, if you were bitten by a tick, exhibited symptoms of Lyme disease (including the telltale bull’s-eye rash), received treatment, and didn’t get better, your condition would match the CDC’s description of PTLDS. If you went to the doctor reporting lingering symptoms consistent with Lyme (like fatigue and muscle aches) but hadn’t been diagnosed with Lyme in the past, you could be diagnosed with “chronic Lyme,” and that’s what the CDC takes issue with. Says the spokesperson: “While the term [chronic Lyme] is sometimes used to describe patients with PTLDS, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with Lyme disease. People who have an illness with symptoms compatible with Lyme disease need to be diagnosed correctly and treated properly as quickly as possible. We want people to get the right diagnosis and the appropriate care.”

Unfortunately, getting the right diagnosis can be extremely difficult. Borrelia burgdorferi is nearly impossible to detect in the bloodstream. Without evidence of a tick bite or rash in the days following initial infection, there is still not a reliable diagnostic test for Lyme. The CDC’s definition of PTLDS hinges on a Lyme diagnosis – and for good reason – but without a direct way to test for infection, many patients suffering from lingering Lyme symptoms are left in the medical lurch.

The CDC counts “the need for improved diagnostic tests” among its goals for addressing the growing Lyme disease problem, but researchers on the ground say the government has been loath to support its promises with resources. “It’s a difficult thing to study,” says Levi. “It takes a lot of money and there’s very little money for Lyme disease research, which means there’s a lot of competition. You’ve got to keep money flowing for researchers to remain engaged. We need more field studies, more data, but who’s going to fund a 10-year field project?”

The answer to that question may lie at the curious intersection of celebrity and Lyme disease. Celebrities using their platform to raise funds and awareness for Lyme is “essential,” says Scott Santarella, CEO of the Global Lyme Alliance, a private nonprofit that has partnered with Yolanda and Bella Hadid, Ally Hilfiger and Rob Thomas, whose wife Marisol suffers from Lyme, for fundraising galas, auctions and education initiatives. With government funding for Lyme research nearly nonexistent, private organizations like the GLA are tasked with raising massive amounts of money to fill the gaps. Famous people and their wealthy social circles are a crucial part of that equation. Kelly Osbourne may have been hesitant to join the ranks of those suffering from a “trendy” disease, but there are many people working hard around the clock to keep Lyme culturally relevant.

“We are a society built around celebrity and entertainment,” says Santarella. “When you have someone like Yolanda or Bella Hadid out there talking about the disease and putting a face to it, you tend to have a bump up in understanding and acceptance. As people become more aware of the disease and become more connected to people who have the disease, fundraising increases.”

Glamorous spokespeople get more press, and lavish fundraisers with A-list red carpets bring in serious money, but relying on celebrities to tell the story of a complex disease has its downsides. Most of the celebrities who have been vocal about their chronic Lyme disease diagnoses (or at least the voices that have been most amplified) are rich white women. With public perception of the disease still relatively malleable, organizations like the GLA must be careful not to pigeonhole chronic Lyme as a plight of the wealthy. “We’re incredibly conscious of the messaging around it and try to work with individuals to tell their story in a way that people can relate,” says Santarella. “We take great pains and strategic thought in how we present things and promote things.”

No matter how hard celebrities work to be relatable, the fact is their experiences don’t accurately portray the reality of a disease that’s spreading rapidly and affecting all demographics. For every Avril, Bella, and Kelly, there are thousands of Lyme sufferers who don’t have access to basic healthcare, let alone the financial means to take months off work and fly to Europe to try new treatments.

“What I say to that is when you have people who have the means to get themselves better and they can’t, they become a loud voice for change,” says Santarella. “At the end of the day, many will benefit from wealthy people who can’t get themselves or their children better. Anyone and everyone can get Lyme. No one is immune. If people knew that, they’d be much more willing to accept and support the efforts of people who are suffering from it and organizations like ours trying to solve the problem.”

Ask researchers for their outlook on the future of Lyme, and you’ll get a wide array of answers, ranging from “dire” to “cautious optimism.” Most agree, however, that many more people are going to get sick before things get better.

The recent surge of Lyme cases and this summer’s predicted outbreak represent a confluence of factors, many of which are manmade. Forest fragmentation is often cited as a primary reason. “A lot of houses and schools and athletic facilities are being built in places that are surrounded by woods,” says Soloski. “That interface between grassy areas, like a manicured lawn, and the forest is a great tick habitat.” As suburban neighborhoods continue to creep into rural environments, the increased mingling of ticks and humans means more Lyme disease.

Fragmentation also interrupts fragile ecosystems, says Levi, which “makes it difficult for some of the predators of these [Lyme-carrying] animals to persist.” Cougar, bear and bobcat numbers have plummeted, while deer and rodent populations have exploded. “The host species we most care about are rodents and deer,” says Levi. “That’s what we need to keep at low levels to see fewer ticks.” In fact, the most ominous predictor of this summer’s imminent outbreak is the widespread mouse infestation that struck the Hudson River Valley last year. Mice are such effective Lyme carriers that scientists have been able to accurately forecast Lyme cases by tracking their populations.

And of course, climate change plays a role. “Any insect-borne disease is very sensitive to climate conditions,” says Jonathan Patz, director of the Global Health Institute University of Wisconsin. “Warmer temperatures speed up the development of tick larvae and nymphs, and that can influence transmission dynamics. Modeling studies of climate change effects on Lyme disease show a northward expansion of the disease,” says Patz. “Lyme is already moving north into Canada.”

While President Trump and his closest advisors maintain that climate change is a myth, and science and research funding face massive cuts in the federal budget, people in the trenches of Lyme disease research struggle to garner a sense of urgency about their work. “Because it’s treatable by antibiotics and it doesn’t kill you, there’s a sense that it’s not as big as a problem as the people on the ground believe it is,” says Levi. “Nobody’s treating this like a really big problem.”

Meanwhile, advocacy groups like the GLA will continue raising funds and awareness through every possible avenue. Despite the obstacles, advancements are being made (including promising immunotherapy research), and Santarella says the disease’s current place in pop culture is an achievement in itself. “It’s a good thing in that people are aware, but it’s much more of an epidemic than we realized. Lyme is very real and very scary – and not going away anytime soon.”

**Comment**

Please remember that issues like climate and rodents most probably have an impact on the Lyme/MSIDS issue, but it all began as an epidemic in Lyme, Connecticut and has spread from there similarly to the “classic” bullseye rash to the rest of the world and has become a pandemic.  The better question to ask is why to determine how we got to this place.  Also, remember that researchers have to posture themselves to get research monies and this requires a certain political savvy – including whopping up something that is trendy to gain dollars.  Sad, but true.  Fear-mongering about climate change over simplifies a complex, perfect storm of issues and events affecting millions of people and lowering their quality of life.

Spector & Rawls – Interview on Lyme Disease

https://www.peoplespharmacy.com/2017/06/01/show-1081-what-do-you-need-to-know-about-lyme-disease/  Listen to show at this link.  Approx. 1 hour

This Week’s Guests:

Neil Spector, MD, is an associate professor of medicine as well as pharmacology and cancer biology at Duke University Medical Center. He holds the Sandra Coates chair in breast cancer research. Dr. Spector co-directs the experimental therapeutics program for the Duke Cancer Institute and is a Komen Scholar. His book is Gone in a Heartbeat: A Physician’s Search for True Healing.

Bill Rawls, MD, is board certified in Obstetrics and Gynecology. He has written about Lyme disease, fibromyalgia and chronic immune system dysfunction. His books include Unlocking Lyme: Myths, Truths and Practical Solutions and Suffered Long Enough. His website is rawlsmd.com

Listen to the Podcast:

The show can be streamed online from this site and podcasts can be downloaded for free. (We’d be grateful for a review on iTunes or Google Play.) CDs may be purchased at any time after broadcast for $9.99.

Buy the CD

Download the mp3

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/