Search the Web for Lyme Disease information, and plenty of articles come up about new ways of diagnosing the disease, along with information on how to prevent it (mostly by not allowing ticks to come anywhere near you, and checking yourself for ticks after going outside).
Search the web for information on treatment, and the first thing that comes up is an advertisement for a physician who developed Lyme disease and treated himself with herbs and supplements. The CDC web page comes up on the first page – but the most recent information on treatment dates from 2014. Is this simply bureaucratic inertia? Or is there a concerted effort to keep the most recent research away from the public eye?
The top seven stories that come up on a Google search using the terms “Lyme Disease 2017” are:
- LymeDisease.org, a press release from the NY State Senate legislation aimed at increasing reporting of Lyme disease and increasing awareness of the disease.[i]
- Contagion Live.com, talking about the inadequacy of current diagnostic tests being “a little” outdated.[ii]
- Science Daily, reporting that a new Lyme disease test might offer quicker more accurate detection – without actually specifying the nature of the new tests, or where it might be obtained – since these newer tests are for research purposes, and not FDA-approved for diagnosis.[iii]
- Global Lyme Alliance, talking about the “surreal” journey of Lyme sufferers, and a little about the “persister” bacteria which are now being isolated and treated, also about Morgellon’s disease patients. Currently the conventional diagnosis for Morgellon’s disease is “Factitial Dermatitis” (with an ICD-10 code of L98.1). It is classified as a psychiatric illness – despite the research which shows that patients with Morgellon’s disease have been found to have Lyme bacteria in the lesions currently diagnosed as “factitious” and “self-inflicted.[iv]
- ILADS – the International Lyme and Associated Diseases Society – discussing a California ruling of disability in favor of a Lyme patient whose disease was not “CDC-positive” but rather based on limited antibody reactivity and the clinical picture, interpreted by a treating physician.[v]
- MedicalXpress.com, reporting on a new test that could distinguish Lyme disease from similar conditions – again, without specifying the test or its availability.[vi]
- Lyme Disease News and Research repeated the “Lyme is easy and quick to treat” fallacy, but also had reference to the persister organisms, and to a new IGeneX test called ImmunoBlot which covers even more bacterial species than their original Western Blot test.[vii]
Despite the new information readily available on a Google search, when I put in a search for “Arizona Medical Board position on Lyme disease”, the very first article that comes up is entitled: Martha Grout, M.D., Reprimanded by Arizona Medical Board ... The second article is about a colleague of mine who was reprimanded by the Arizona Board of Osteopathic Examiners for his treatment of a patient with Lyme disease. In fact, he was forbidden to either diagnose or treat Lyme disease under any circumstances, and was suspended from the practice of medicine for a period of four years.
The practice of medicine outside allopathic “standards of care” is frowned upon by conventional medical boards. Physicians who engage in this kind of activity tend to pay a high price.
When that practice involves a surgeon who repeatedly paralyzes his back surgery patients, or a physician who writes prescriptions for narcotics for 200 patients per day, or who bills insurance companies for procedures which are not performed, or for treatment with chemotherapeutic drugs for patients who do not have cancer – those practices are outside the bounds of ANY ethical standard of care.
However, when the treatment involves patients with diseases like chronic Lyme disease, which conventional allopathic wisdom states does not exist, the lines become much more blurred.
Does “chronic Lyme disease” exist? The evidence is more and more in favor of the persistence of Lyme organisms even when treated adequately by allopathic standards. Should a physician be disciplined because they treat according to the latest research-based evidence?
We see patients at the Arizona Center for Advanced Medicine from many states of the Union – not just Arizona. These patients are chronically ill, have had at least potential exposure to Lyme-disease carrying ticks, have reason to believe that they are suffering from chronic Lyme disease, and are unable to find care in their home states, because the doctors are afraid or unwilling to treat them for “chronic Lyme disease” with antibiotics. Strangely enough, these patients often improve when treated with antibiotics, whether or not they have a CDC positive Lyme test.
So what is the ethical answer? Do not treat, because “conventional” standard of care says these patients are suffering from “post Lyme disease syndrome” and should be treated only with painkillers, and antidepressants, and anti-anxiety medications and those treatments are “standard of care”, therefore acceptable? Or treat with antibiotics, because they appear to relive many of the symptoms of the illness, despite the conventional assertion that the illness is psychological, not physical?
Is it truly an act of unprofessional conduct to treat outside the “standard of care”?
Doctors all over the United States who treat Lyme disease with antibiotics are being harshly disciplined. Bernard Raxlen, MD was put on probation for 3 years by the New York Medical Board. David Cameron, MD was also charged with professional misconduct by the NY Medical Board.
The easy answer would be: give up the medical license, and stick with the Arizona homeopathic license only. Then – at least in Arizona – there is no question of jurisdiction, and no opportunity for disciplinary procedure against the license whose Board is sympathetic to the idea that conventional standards of care are not necessarily 100% pure gold.
Of course, then a whole different can of worms is opened.
What if suppliers do not agree that the homeopathic license – and its legally established scope of practice – is a valid license for the purchase of medical supplies? How, then, do we get the supplies which we need to practice our legally regulated profession?
This question goes far beyond the stated scope of this article. By whom is the practice and the art of medicine regulated? The State? The insurance companies? The licensing boards? The suppliers? The pharmaceutical companies? The individual patients?
What, in the end, is our final responsibility? And to whom? Why did we go to Medical School in the first place?Perhaps 2018 will give us some answers to these questions – at least to the easy ones, like “How can we best treat Lyme disease in all its protean manifestations, so that the patients can heal from their illness, and the doctors can continue to practice their healing art most
[i] LymeDisease.org – press release from the New York State Senate: Senator Sue Serino (Hyde Park) and Senator Kemp Hannon (Nassau) have announced the introduction of legislation aimed at reshaping, and more effectively combating, the fight against Lyme and tick-borne diseases (TBDs) ahead of the upcoming Legislative Session. The package includes measures that would significantly increase reporting of these diseases to bolster critical research and create a working group comprised of various experts to ensure that the state remains aware of important developments in this ever-evolving field of study… NYS Department of Health Commissioner Howard Zucker testified at the August hearing that while over 8,000 cases of Lyme and TBDs are reported in the state each year, “there are undoubtedly many more cases, particularly of Lyme disease, that are treated by community physicians and are not reported, or do not meet the case definition.” It is clear that improving reporting methods is critically important to understand just how many New Yorkers are vulnerable… This legislation would establish a Lyme and TBDs working group to review current best practices for the diagnosis, treatment, and prevention of Lyme and TBDs and ensure that the state remains apprised of new developments in the ever-evolving field.
[ii] Contagion Live - Top Lyme Disease News of 2017 - Advances Are Being Made in Diagnostic Testing for Early Lyme Disease. “Currently the standard for laboratory diagnosis of Lyme disease is primarily based on the demonstration of antibodies against Borrelia burgdorferi (B. burgdorferi), the causative bacteria,” senior author Steven Schutzer, MD, a physician-scientist at Rutgers New Jersey Medical School told Contagion® in an interview. “The testing paradigm, a 2-tiered protocol, consists of a sensitive first test, usually an enzyme immunoassay that, if positive or borderline, is followed by a second assay, a Western immunoblot to increase specificity.” Although this approach has become standard when it comes to Lyme disease diagnosis, it is not without its drawbacks; this is not surprising, as the paradigm was established in 1994.”
[iii] Science Daily - New Lyme Disease Tests Could Offer Quicker, More Accurate Detection. “New diagnostic methods offer a better chance for more accurate detection of the infection from the Lyme bacteria, the most common tick-borne infection in North America and Europe. New tests to detect early Lyme disease -- which is increasing beyond the summer months -could replace existing tests that often do not clearly identify the infection before health problems occur.”
[iv] Global Lyme Alliance - HOPE FOR LYME DISEASE SUFFERERS IN 2017 – this article was originally published on the Huffington Post, and takes the CDC to task for ignoring Federal Guidelines standards of ILADS in favor of the IDSA guidelines based on outdated scientific information. “Those of us who have navigated the surreal (how did that word become the best descriptor for real life?) nature of Lyme disease, both the symptoms and attempts to find medical treatment, suddenly have several opportunities to find hope in the waters of chaos… Research coming from Johns Hopkins University, for example, shows that Lyme disease “persister” bacteria—those that survive typical antibiotic treatment—may be vulnerable to uncommonly used antibiotics in combination. I learned from the International Lyme and Associated Diseases Society that there has been a resurgence of interest in investigating the role of Lyme disease in triggering mast cell activation syndrome (MCAS), observed as far back as 1999, which may explain a great number of symptoms in patients who are described as suffering post-Lyme disease treatment syndrome. Headway is being made into another contentious mystery illness, Morgellons disease, which has devastated lives of many people including musician Joni Mitchell, and yet which has been dismissed as a myth for years despite physical evidence. Recent research has linked Morgellons to Lyme disease, as the filamentous growths or “fibers” that Morgellons patients report have been determined to contain Borrelia burgdorferi, the bacterium that causes Lyme disease, along with other species of Borrelia.
[v] ILADS – the International Lyme and Associated Diseases Society - GROUND-BREAKING LYME DISABILITY BRIEF – A federal district court has recently ruled in favor of a Lyme patient, ordering that a claim for Social Security disability benefits is viable even when laboratory evidence falls short of two-tiered testing criteria. The U.S. District Court for the Eastern District of California has issued a published order, stating that laboratory findings of limited antibody reactivity to Borrelia burgdorferi, when interpreted by a treating physician, meet the evidentiary threshold for proving a “medically determinable impairment” under Social Security law. The written ruling, authored by Magistrate Judge Edmund F. Brennan, states that laboratory evidence such as that referenced in ILADS guidelines provides legally sufficient “objective evidence” to support a treating physician’s clinical assessment that the patient suffered from disabling Lyme and other tick-borne diseases… The ruling is a first of its kind, in that it is a published, citable court order in which laboratory findings in keeping with the ILADS standards are deemed a sufficient legal basis for a federal disability claim. This means a federal district court has now issued an order consistent with a number of state laws, which recognize the validity of clinical-focused diagnostic criteria for Lyme disease, where laboratory findings play a supportive, but not determinative, role. Calif. Bus. & Prof. § 2234.1, Conn. Stat. Ann. § 20-14m; Maine Rev. Stat. Ann. § 1646; Mass. G. L. ch. 112, § 12DD; New Hamp. H.B. 295 § 157; N.Y. Pub. Health § 230, 9-b; R.I. Gen. L. § 5-37.5-6; Vermont 18 V.S.A. § 1793; Virginia Code Ann. § 54.1-2963.2. The authority of the present case is currently limited to the jurisdiction in which the order was issued. However, the order can be cited as persuasive authority for claims arising in other jurisdictions. The case citation is Moores v. Colvin, 173 F. Supp. 3d 989 (E.D. Calif. 2016). Barbara Arnold, Esq., of Oakland, California, ably represented the Plaintiff.”
[vi] Medical Xpress - New test differentiates between Lyme disease, similar illness. “A team of researchers led by Colorado State University has identified a way to distinguish Lyme disease from similar conditions, according to a new study published August 16 in Science Translational Medicine. Senior author John Belisle, a professor in CSU's Department of Microbiology, Immunology and Pathology, said the findings are significant because current laboratory tests for early Lyme disease are not ideal.” The article goes on to perpetuate the CDC mantra and the IDSA position that “Most Lyme disease infections are successfully treated with a two to three-week course of oral antibiotics."
[vii] LYME DISEASE NEWS AND RESEARCH – also repeated the idea that “Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics.” Nevertheless, on the same page as this sentence we also read the following two articles of interest
- Study: Living Lyme disease bacteria found months after antibiotic treatment - Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced results of two papers published in the peer-reviewed journals PLOS ONE and American Journal of Pathology, that seem to support claims of lingering symptoms reported by many patients who have already received antibiotic treatment for the disease.
- New tests offer better chance for more accurate detection of Lyme disease - New tests to detect early Lyme disease - which is increasing beyond the summer months -could replace existing tests that often do not clearly identify the infection before health problems occur.
- IGeneX launches three new tests to aid diagnosis of Borreliosis - three new tests that are more inclusive and specific for aiding in diagnosis of Borreliosis (Lyme Disease and Tick-Borne Relapsing Fever, Borreliosis). The ImmunoBlot test is 98% specific for most species of Borrelia, and 90% sensitive because it tests for multiple species of Borrelia.