2010 Most Recent Lyme Articles- #1
A Review of Death Certificates Listing Lyme Disease as a Cause of Death in the United States.
Kiersten J, et al.
Clin Infect Dis. 2010 Dec 28.
The International Classification of Diseases (ICD) is the international standard for categorizing health and vital records, including death certificates. When the ICD was updated to version 10, which became effective in the United States in 1999, Lyme disease was given a unique code and thus could be captured as a cause of death on death certificates. During 1999–2003, the Morbidity and Mortality Weekly Report (MMWR) Summary of Notifiable Diseases listed 24 deaths (median per year, 5; range per year, 2–7) attributed to Lyme disease . To describe the epidemiology of deaths attributed to Lyme disease, we reviewed death records and death certificates in the United States during 1999–2003.
The median age of decedents was 71 years (range: 19–99 years); 66 (58%) were male. Deaths were evenly distributed throughout the study period (1999: n = 25; 2000: n = 23; 2001: n = 14; 2002: n = 25; 2003: n = 27) and across seasons. Deaths were reported among residents of Connecticut (19), Pennsylvania (18), New Jersey (13), New York (12), California (8), Massachusetts (5), Minnesota (5), Wisconsin (5), Virginia (4), Florida (3), Missouri (3), Texas (3), Maryland (2), Michigan (2), West Virginia (2), Alabama (1), Arkansas (1), Colorado (1), Iowa (1) (The death record and certificate for this decedent were from Kansas, but Iowa was listed as the state of residence.), Illinois (1), Indiana (1), North Carolina (1), North Dakota (1), South Carolina (1), and Washington (1).
Among the 91 records for which Lyme disease was coded as a multiple cause of death, 45 different diseases were coded as the underlying cause of death, including infectious diseases (eg, tuberculosis), malignancies (eg, colon, prostate), diabetes mellitus, nervous system diseases (eg, motor neuron disease, Parkinson's disease), circulatory system diseases (eg, acute myocardial infarction, atherosclerotic heart disease), and chronic obstructive pulmonary disease.
In contrast to the 96,068 cases of Lyme disease reported to CDC during 1999–2003, Lyme disease was coded as an underlying cause of death ononly 23 records. Decedents were predominately of an advanced age and age distribution that more closely approximates that of all-cause mortality than that of reported Lyme disease cases. Most terminal events on death certificates for which Lyme disease was the underlying cause of death were inconsistent with the well-characterized complications of Lyme disease and the rare published case reports of Lyme disease-associated mortality. Additionally, the underlying causes of death when Lyme disease was listed as a multiple cause of death varied widely and also were inconsistent with the well-characterized complications of Lyme disease.
Despite these limitations, our review of death records and death certificates supports the finding that Lyme disease is rare as a cause of death.Therefore, we strongly encourage health care providers to thoroughly document and report any death suspected to be caused by Lyme disease. Additionally, health care providers should be reminded to carefully and accurately complete death certificates as this data is a vital source of health information. Lastly, prompt diagnosis and treatment of persons infected with Borrelia burgdorferi are critical to the prevention of more serious illness and potential long-term complications.
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Labels: Lyme disease
From the American Council on Science and Health
December 9, 2010
Chronic Lyme disease scams dangerous in many ways
Yesterday’s Chicago Tribune included a long feature story by reporters Patricia Callahan and Trine Tsouderos on a nationwide scare over a non-existent malady called chronic Lyme disease.
[snip]
Unlike Lyme disease, however, chronic Lyme disease is a pseudo-disease. “Every infectious disease expert agrees on this,” says Dr. Ross, “Yet since researchers at Yale first figured out what Lyme disease was in the late 1970s, there has gradually appeared this faddish diagnosis, chronic Lyme disease. It’s replaced fibromyalgia and chronic fatigue syndrome as a diagnosis for many people complaining of vague generalized symptoms, especially fatigue. A range of physicians — some well-intentioned, many not — have turned to it as an explanation. From this have come an assortment of expensive and potentially dangerous treatments for a condition that simply does not exist.”
The Tribune reporters describe numerous patients undergoing costly and difficult long-term antibiotic treatments. ACSH’s Susan Ingber notes that, “long-term antibiotic treatment is dangerous for public health as it can lead to the development of disease-resistant strains of bacteria.” The reporters go on to detail cases in which unapproved treatments with heavy metals and unknown substances led to patient deaths. In addition, the article examines the ways in which proponents of expensive treatments for this fictitious ailment have gained influence over politicians, journalists and philanthropists — in spite of the repeated warnings and advisories of medical authorities.
ACSH would like to commend the authors on a piece of superb reporting exposing this dangerous deception.
And from FairWarning….
Posted by Relative Risk at 16:03 0 comments Links to this post
Labels: Lyme disease
Vaccine. 2010 Dec 8.
Reliable surveillance of tick-borne encephalitis in European countries is necessary to improve the quality of vaccine recommendations.
Stefanoff P, et al.
National Institute of Public Health-National Institute of Hygiene,Warsaw, Poland.
Tick-borne encephalitis (TBE) is an acute disease of the central nervous system caused by viruses from the Flaviviridae family. Infection most commonly occurs following exposure to ticks infected with one of the 3 viruses belonging to the TBE complex. Food borne transmission of TBE has also been increasingly reported following consumption of unpasteurised milk or dairy products.
The infection usually progresses biphasically. The first (viremic) phase often is asymptomatic or causes influenza like symptoms. Only about one third of cases progresses to the second phase which may present as meningitis, encephalitis, meningoencephalitis, meningoencephalomyelitis or cause other clinical syndromes. Post encephalitic sequelae (e.g. sustained paresis, ataxia, headache, hearing impairment) are reported in 35–58% of symptomatic patients. Diagnosis of TBE is based on detection of specific IgM and IgG antibodies in serum or cerebrospinal fluid using the enzyme-linked immunosorbent assays (ELISA), however cross-reactivity with other flaviviruses has been observed. Neutralization testing allows confirmation of specific anti-TBE antibodies presence.
There is no specific treatment for TBE. Although personal protective measures (such as covering limbs, wearing insect repellants and removing ticks), as well as avoidance of unpasteurised milk coming from endemic areas is usually encouraged, the only efficient measure of disease prevention is active immunization.
In Europe two highly effective and safe vaccines are used for prevention of TBE infections and their chronic sequelae. The two vaccines available are whole-virus inactivated products: FSME-IMMUN (Baxter AG, Vienna, Austria) and ENCEPUR (Novartis AG, Basel, Switzerland). Typically three doses are needed for primary immunization at 0, 1, 6–12 months, and booster doses every 3–5 years.
Despite availability of safe and effective vaccines, TBE is an increasing public health problem in Central and Northern Europe. During the previous decade, on average 3000 clinical cases have been reported annually from European countries.
The optimal vaccination strategy is difficult to establish as TBE is a zoonotic disease, with highly focal natural distribution. Mass immunization would not affect the local circulation of the virus in enzootic cycles. Theoretically, the best approach would be a combination of health promotion, vaccination of high risk groups, and, potentially, vector control measures. To define the best strategy for TBE control, however, good quality data are needed on TBE virus (TBEV) occurrence, as well as information on population-level and individual risk factors.
The aim of the present study was to summarize vaccine recommendations in European Union (EU) and European Economic Area (EEA) countries, in context of surveillance of human cases, and monitoring TBE endemic areas.
decrease the TBEV circulation. Standardization of surveillance systems in EU/EEA countries is necessary to allow development of TBE vaccination recommendations addressing appropriate target groups in endemic areas. Such recommendations are strongly needed for international travellers. Application of surveillance case definitions, and encouraging laboratory confirmation of CNS infections, will allow appropriate assessment of disease burden, related to occupational exposure, exposures related to leisure activities, and food-borne exposures. Despite local occurrence of TBE only in part of EU countries, increasing travel, and free trade of food products in EU, requires prioritization of TBE surveillance at European level. Public health authorities should consider the inclusion of TBE in the list of diseases under European surveillance.
Development of vaccination recommendations, especially directed to travellers, necessitates adoption of compatible definitions of endemic areas across European countries. Based on clear definitions of endemic areas, risk maps should be widely disseminated, using national public health authorities, vaccination points, and travel agencies. Also, a reliable mechanism of vaccination coverage assessment needs to be implemented in order to efficiently monitor the impact of vaccination recommendations.
Conclusions and recommendations
Universal or targeted vaccination against TBE can positively impact the overall burden of disease in endemic countries, but cannot
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Labels: Emerging Infections, vaccines
South Florida Sun-Sentinel.com
A Lyme disease diagnosis gone wrong
Dec 27, 2010
For patients who have no answers after bouncing from doctor to doctor, physicians who diagnose and treat chronic Lyme disease can become heroes.
Phillip Moore initially felt that way about Dr. Joseph Jemsek, who in 2004 diagnosed Moore with Lyme in North Carolina. "He made you feel like he was the only person on the planet that was going to make you better and save you," Moore said.
But Moore now says he feels duped. After enduring intravenous antibiotic treatments that made him so sick he had to take a three-month leave from his job, Moore learned from a different doctor that his tests and clinical history showed he didn't have Lyme disease. This year, Moore was told he had a rare form of non-Hodgkin's lymphoma and that the cancer had spread.
"In my heart, I know it delayed my opportunity for treatment," the 45-year-old father said of his Lyme diagnosis.
Moore testified against Jemsek at a hearing held by the North Carolina Medical Board, which disciplined the doctor for "unprofessional conduct."
The board found that in treating Moore and nine other patients, Jemsek diagnosed Lyme based on "non-specific symptoms such as fatigue, achiness and decreased concentration," and "with scant or no supporting historical, physical, serological or other laboratory evidence."
In 2006, the board suspended Jemsek's license for a year but offered to put that suspension on hold if Jemsek met certain conditions.
Two attorneys for Jemsek said in a statement that their client settled a lawsuit filed by Moore without admitting liability. That Jemsek is able to treat patients despite "vicious attacks," said attorneys Jacques Simon and Susan Green, is "a story of triumph for the chronically ill."
Jemsek remains prominent in the Lyme world, and in January he opened an office in Washington, D.C., where he treats Lyme.
— Patricia Callahan
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Labels: Quackery
BBK07 immunodominant peptides as serodiagnostic markers of Lyme disease.
Clin. Vaccine Immunol. doi:10.1128/CVI.00461-10
22 Dec 2010.
Coleman AS, et al.
With millions of serum samples tested for LD each year, standardization and automation of serological testing are one of the major goals of LD research.
Recombinant and synthetic antigen ELISA kits ease standardization, are amenable to automation, and may improve specificity by concentrating B. burgdorferi-specific epitopes. Among the synthetic antigens previously tested for early LD diagnosis is the OspC-derived peptide pepC10. Highly conserved among Borrelia strains, pepC10 is 10 amino acids in length, and appears to be a target for IgM antibodies during the early infection. The synthetic peptide C6, isolated from a conserved region of the variable membrane protein VlsE, is a target for host IgG, and has been shown to be a sensitive and specific serodiagnostic marker. While purified antigens show great promise, no recombinant or synthetic antigen has demonstrated sufficient sensitivity to replace the current two-tiered approach. Some of the highest sensitivities reported thus far have used several antigens in combination to enhance diagnostic accuracy. However, there remains a need for improvement in sensitivity, especially for detection during the earliest stages of disease. The addition of new immunogenic epitopes could allow these tests to eventually supplant the two-tiered approach, improving both the efficacy and cost of LD testing.
The B. burgdorferi lipoprotein BBK07 was identified as an immunodominant antigen in a study by Barbour et al. We have recently shown that BBK07 is an in vivo-induced surface antigen, which is selectively expressed during mammalian infection and is a promising serodiagnostic marker for LD. We demonstrated that an amino-terminal fragment of BBK07 could be used as a component of effective serodiagnostic marker to detect human LD.
In our current studies we further assessed the sensitivity and specificities of BBK07-based diagnosisusing serum samples from North American and European patients with diagnosed LD and several other conditions including syphilis and autoimmune diseases. We also assessed the serodiagnostic abilities of BBK07 using a full-length protein and an overlapping peptide library, identifying the most immunogenic epitopes of BBK07. We demonstrate that serum testing using a combination of peptides was superior to full-length BBK07 protein. Finally, we show that the peptides are able to detect both canine and human LD, even during the early stages of the disease. IgG and IgM ELISAs further show that a cohort of human LD sera failed to recognize VlsE-derived C6 or OspC-derived pepC10 peptides but exclusively reacted with BBK07 peptides attesting their potential use in enhancing diagnostic sensitivity of early LD.
The effectiveness of some B. burgdorferi antigens, including VlsE, OspC, and BmpA, has been reduced by sequence variation in the bacterial population. Our data indicates that BBK07 immunoreactivity is detectable across the B. burgdorferi isolates present in North America, but not in European LD patients. Although the BBK07 gene is highly conserved in B. burgdorferi sensu stricto isolates in United States, the linear plasmid carrying the BBK07 gene or an ortholog thereof is absent in major B. burgdorferi sensu lato strains prevalent in Europe. Therefore, while BBK07 diagnosis is unlikely to be effective in Europe, reactivity to BBK07 or similar antigens absent in other B. burgdorferi sensu lato species could aid physicians or researchers in differentiating between individuals infected with B. burgdorferi or the European strains.
Posted by Relative Risk at 06:33 0 comments Links to this post
Labels: diagnostics
Below are some highlights from a case report on the natural history of untreated Lyme arthritis. It’s a fascinating case, not only for the long-term observation of Lyme arthritis in a single patient, but also for the futility of alternative medical practices, and the unwillingness of a patient to take reasonable and rational care of herself.
A case revealing the natural history of untreated Lyme disease
Robert T. Schoen
Nat. Rev. Rheumatol. 21 December 2010
A 71-year-old woman from Northeast USA presented to a rheumatologist with a 4-month history of swelling of her left knee. Two years before presentation, the patient noted what she described as a “deer tick” bite on her right arm. She subsequently developed an expanding erythematous rash at the bite site without any other symptoms.
She suspected early-stage Lyme disease and consulted her homeopath, who treated her with homeopathic remedies, but not with antibiotics.
The patient consulted the homeopathic doctor again and was prescribed further homeopathic treatments.
The patient returned to the homeopath, who tested her for Lyme disease (enzyme-linked immunosorbant assay [ELISA] = 8.95 [normal range is <0.9]; western blot: negative for IgM, positive for IgG). The homeopath diagnosed Lyme arthritis and recommended a course of doxycycline for 28 days, but the patient declined the antibiotic. [Even quacks eventually must turn to evidence-based medicine.]
She made an appointment to see a rheumatologist, but while waiting for the visit, she consulted an acupuncturist for treatment.
When seen a month later, however, she had not taken any of the prescribed antibiotic therapy.
She again sought acupuncture therapy after the second episode of left-knee swelling, which initially improved, but then returned and persisted for a month.
She returned to the homeopath, who recommended a course of doxycycline therapy (100 mg, twice daily for 14 days), which she agreed to adhere to. No immediate improvement was observed in her arthritis, however, so she decided on her own to discontinue the antibiotic therapy.
She confined herself to bed for 24 days because of the knee pain, weakness and a headache.
Following her self-confinement, the patient returned to the rheumatologist.
The rheumatologist prescribed doxycycline therapy (100 mg, twice daily for 28 days) and the patient agreed to adhere to the treatment course.
The patient has had no further arthritis and remained well at 6 months of follow-up.
…the rheumatologist recommended antibiotic therapy for two reasons: to hasten the resolution of the current bout of arthritis and, more importantly, to diminish the likelihood of subsequent episodes. The expectation of subsequent arthritic flare-ups was consistent with the previously studied natural history of untreated Lyme arthritis, in which recurrent episodes can occur for years.
The arthritis in this patient is thought to have resulted from B. burgdorferiinfection (in the absence of previous antibiotic therapy) rather than a post-infectious inflammatory process, and her condition was cured with a relatively short course of antibiotic treatment.
Posted by Relative Risk at 09:07 0 comments Links to this post
Labels: Lyme disease, Quackery
How Neutral Should Journalists Be?
22 DEC 2010
by Conor Friedersdorf
One school of thought contends that balance is paramount: a contested matter demands that the reporter gives equal space to "both sides," presents the debate to readers, and allows them to make up their own minds.
"We report, you decide!"
[snip]
I've just delved deep into a debate of this kind. Its subject is chronic lyme disease. The Chicago Tribune published a story that casts doubt on the diagnosis. "There's little good evidence that chronic Lyme disease exists," the subtitle reads. "Yet doctors are treating it with drugs that put patients and the public at risk." It's rare to see so forceful a conclusion stated in an American newspaper. The piece is savaged here as biased. And it is praised and defended at length here as appropriately skeptical of chronic lyme disease, and refreshingly willing to give the results of double blind studies more weight than the anecdotal assertions of doctors and patients who represent a minority opinion.
Below the defense of the article there appears a dissenting comment that is the most fascinating aspect of this whole kerfuffle. It is written by Pamela Weintraub, features editor of Discover Magazine, and justifies a long excerpt:
…which you can read here at The Atlantic.
Posted by Relative Risk at 12:50 0 comments Links to this post
Labels: Lyme disease, Politics
One last letter before the end of the year from the chronic Lyme pamphleteers
Clinical Neurology and Neurosurgery
Dec. 2010
Raphael B. Stricker, Lorraine Johnson
International Lyme and Associated Diseases Society.
To the Editor,
Brinar and Habek [1] describe three cases of ‘rare’ infectious diseases that mimic multiple sclerosis (MS). In each case the authors dismiss the possibility of Lyme disease on the basis of negative serology. This diagnostic reasoning is dangerous for both the clinician and the patient.
[No they didn’t “dismiss” the possibility. They wrote, “”Nevertheless, [the] need for serological work-up in every patient with suspected MS has recently been questioned. For example Lyme disease is one of the most frequently cited diseases that can mimic MS. However, routine screening for Borrelia antibodies in the absence of a specific indication will produce more false positives than true positives. In a study of 283 consecutive patients with MS, 19 had positive Lyme serology and upon further testing, including spinal tap with measurement of intrathecal antiborrelia antibodies, none of these 19 patients had Lyme disease.]
As the authors point out, Lyme disease due to infection with the spirochete Borrelia burgdorferi is ‘one of the most frequently cited diseases that can mimic MS’ [2, 3]. Lyme disease remains a clinical diagnosis because serological testing for the disease is inadequate [4].
[According to Stricker and other ‘chronic’ activists.]
For example, a review of two-tier Lyme testing in the United States found that this serological approach had a sensitivity of only 56%, which is inadequate for a diagnostic test system [5].
[Again, according to Stricker, though his personal opinions have regularly been shot full of holes. Here’s part of a 2007 shotgun blast in the BMJ:
It is well known that serology is less sensitive in patients with erythema migrans, particularly during the first two weeks of illness and that detecting serologic reactivity in patients with either cutaneous or early neurological disease may require a second (convalescent phase) serum sample. Testing of paired samples has been recommended by the CDC since 1994 if acute serology is negative in patients with early Lyme disease.
Stricker and Johnson ignore the fact that the sensitivity of 2-tier testing in patients with extracutaneous manifestations of disease, such as arthritis, approaches 100%; they cite the overall 2-tier sensitivity reported by Bacon et al. as 190/280 (68%), but fail to note that 88/94 (94%) of those patients with extracutaneous manifestations of disease were also 2-tier positive, ranging from 9/11 patients (82%) with early neurological disease, to 55/57 patients (96.5%) with arthritis and 11/11 patients (100%) with late neurological disease. Stricker and Johnson also cite the overall 2-tier sensitivity reported by Ledue et al. as 27/54 (50%). Of the 41 Lyme disease patients contributed to the Ledue study by the CDC, all 16 patients (100%) with extracutaneous manifestations (e.g. arthritis, facial palsy, peripheral neuropathy, meningitis, and heart block) had positive 2-tier tests by CDC (M. Schriefer, CDC, personal communication); when 2-tier testing was repeated on stored sera from these same patients by Ledue et al., 13/16 (81%) were seropositive and two of the seronegative patients had early disease, including one with facial palsy and a second with heart block. All of the above data from the CDC is publicly available.]
A similar study of European two-tier Lyme testing found that this approach was even worse with a maximum sensitivity of 46% [6].
[I guess Stricker must have plucked that number out of the abstract. The authors wrote in the abstract, “In late Lyme borreliosis, sensitivity of the tests ranged from 46 to 92%.” They were testing “11 commercially available EIA tests, four Western blot (WB) tests and the EIA-WB two-test protocol using sera of confirmed LB [Lyme Borreliosis] patients as positive controls and sera of healthy persons as well as of patients with infections mimicking LB or known to cross-react in LB serological tests as negative controls.” The authors again: “This study showed clearly that not only sera of healthy controls but, preferably, sera of patients with a similar differential diagnosis as LB should be used for the evaluation of the serodiagnostic tests for LB. As positive and negative predictive values are the most relevant parameters for clinical decision making, not only sensitivity and specificity but also the predictive values for positive and negative results should be compared.”]
As for Lyme antibody testing in cerebrospinal fluid(CSF), the sensitivity of this approach in patients with neurologic Lyme disease ranges from 55 to 80%, which is also inadequate for diagnosis [7, 8].
[Sticking with the abstract again. The “55 to 80%” bit is from the abstract of Blanc et al., which reads, “Previous studies to determine the diagnostic value of the AI found a sensitivity ranging from 55% to 80%.” “Previous studies,” not their referenced 2007 study. They note, “However, these studies included only typical clinical cases of meningitis or meningoradiculitis, and none had a control group with CSF anti-Borrelia antibodies.” Blanc et al., “found that the anti-Borrelia antibody index had an excellent specificity (97%) but was insufficiently sensitive (75%) to diagnose all neuroborreliosis patients.” “Given the moderate sensitivity of the AI, the lack of consensual criteria for neuroborreliosis, and the absence of an ideal diagnostic test for neuroborreliosis, we propose pragmatic diagnostic criteria for neuroborreliosis,….[which] now need to be tested in another, prospective cohort.”]
[As for the Ljostad paper, the authors noted, “pre-treatment diagnostic sensitivity of Bb AI [antibody index] was 74% when symptom duration was <6 weeks, and 100% when 6 weeks or longer.” No surprise there: acute vs. convalescent sera.]
Thus reliance on serology or CSF testing will miss a significant number of patients with neuroborreliosis, often resulting in failure to address a treatable condition that mimics MS.
[See the first comment above.]
Brinar and Habek reported that their patients improved with unspecified antibiotic therapy. It would be of interest to know whether the antibiotic treatment was sufficient to eradicate Lyme disease from the central nervous system.
[It would be more interesting to know what Stricker considers to be a “sufficient” about of antibiotic treatment.]
Given the difficulty in diagnosing B. burgdorferi and the lack of effective treatment for MS, clinicians should be alert to the possibility of Lyme disease as a cause of MS symptoms.
[Clearly they are alert to the possibility of “Whipple’s disease, Lyme disease, Syphilis, HIV/AIDS, Brucellosis, HHV-6 infection, Hepatitis C, Mycoplasma and Creutzfeld-Jacob disease, among others.”]
Increased recognition of persistent infection with elusive organisms such as B. burgdorferi will hopefully lead to new therapeutic options for chronic neurologic diseases that currently have no known cause and no effective treatment [9, 10].
[The last two refs are from two irresponsible suggestions that LD might be causing Alzheimer’s and the cure is just an antibiotic infusion away. This is part of the larger, ongoing activist effort to blame complex illnesses (MS, Alzheimer’s, ALS, etc.) on a common bacterial infection. False hope for the desperate and dying.]
References
[1] BrinarVV, HabekM. Rare infections mimicking MS. Clin Neurol Neurosurg 2010;(May).
[2] Chmielewska-Badora J, Cisak E, Dutkiewicz J. Lyme borreliosis and multiple sclerosis: any connection? A seroepidemic study. Ann Agric Environ Med 2000;7:141–3.
[3] Agosta F, Rocca MA, Benedetti B, Capra R, Cordioli C, Filippi M. MR imaging assessment of brain and cervical cord damage in patients with neuroborreliosis. Am J Neuroradiol 2006;27:892–4.
[4] Stricker RB, Counterpoint: Long-term antibiotic therapy improves persistent symptoms associated with Lyme disease. Clin Infect Dis 2007;45:149– 57.
[5] Stricker RB, Johnson L. Lyme wars: let’s tackle the testing. BMJ 2007;335: 1008.
[6] Goossens HA, vanden Bogaard AE, Nohlmans MK. Evaluation of fifteen commercially available serological tests for diagnosis of Lyme borreliosis. Eur J Clin Microbiol Infect Dis 1999;18:551–60.
[7] Ljøstad U, Skarpaas T, Mygland A. Clinical usefulness of intrathecal antibody testing in acute Lyme neuroborreliosis. Eur J Neurol 2007;14:873–6.
[8] Blanc F, Jaulhac B, Fleury M, deSeze J, deMartino SJ, Remy V, et al. Relevance of the antibody index to diagnose Lyme neuroborreliosis among seropositive patients. Neurology2007;69:953–8.
[9] Miklossy J, Khalili K, Gern L, Ericson RL, Darekar P, Bolle L, et al. Borrelia burgdorferi persists in the brain in chronic Lyme neuroborreliosis and may be associated with Alzheimer disease. J Alzheimers Dis 2004;6:639–49.
[10] MacDonaldAB. Plaques of Alzheimer’s disease originate from cysts of Borrelia burgdorferi, the Lyme disease spirochete. Med Hypotheses 2006;67:592–600.
Posted by Relative Risk at 13:00 0 comments Links to this post
Labels: Lyme disease
"You can't assume that what you've always heard must be true simply because many other people believe it and spread it around," notes Dr. Steven Novella of the Yale School of Medicine, a medical doctor who has built his career educating patients, the public, students, and professionals about the highest standards in medical science and practice. "You should challenge all of your beliefs and, wherever possible, try to rely upon a consensus of authority or primary sources in order to check out everything that you think you know to be true."
This is exactly the approach you'll take with Medical Myths, Lies, and Half-Truths: What We Think We Know May Be Hurting Us. Dr. Novella's 24 revealing lectures are an empowering learning experience that will give you evidence-based guidelines for good health, will enhance your ability to be better informed about common medical myths, and will strengthen your skills at assessing the scientific truth behind medical information and advice—whether you're having an important conversation with your doctor or taking a trip down the medicine aisle of your local pharmacy.
Course Lecture Titles
24 Lectures
30 minutes / lecture
Posted by Relative Risk at 12:09 0 comments Links to this post
Labels: Quackery
White House Releases Long-Awaited Guidance for Scientific Integrity
It was an awfully long wait for a four-page memo. Seventeen months late on meeting the deadline set in a March 2009 order from President Barack Obama, the White House Office of Science and Technology Policy (OSTP) today released high-level guidance for federal agencies on how to develop policies on scientific integrity. The guidance, which includes a prohibition on political [i.e. Republican] interference, is being received warmly but somewhat cautiously by advocacy groups.
The guidance includes the following points:
More at ScienceInsider.
Posted by Relative Risk at 17:58 0 comments Links to this post
Labels: Politics
“The Knight Science Journalism Tracker is a blog for science reporters. Affiliated with the Massachusetts Institute of Technology, it critiques science reporting with the stated goal of helping science journalists improve their own performance.”
And normally it does a good job except when someone tries to use the KSJT blog to undermine reporters and the work that they do. Case in point, the curious criticism of the Chicago Tribune’s recent reporting on chronic Lyme disease.
On December 10, well-known Lyme activist Pamela Weintraub blogged about the Trib piece: “In its failure to research the essence of the debate over Lyme disease symptoms that persist after short-term antibiotic treatment, and especially in its failure to interview scientists from mainstream academia to present an alternate viewpoint, this article represents a low in science reporting. This agenda-driven piece rides roughshod over complexities and nuances–and the core ethics of journalism--by implying it has relied on predators for information because legitimate scientists with alternate viewpoints do not exist. I assure you, they do, and would have to be quoted to make this real journalism instead of a sensationalistic hatchet job.”
On December 16, blogger Paul Raeburn added to the criticism with hispiece at KSJT. He went over much the same ground that Weintraub did. And why not, they are colleagues and friends, and there was probably a lot of email traffic between them over the last six days.
They are both bloggers at Psychology Today (see Raeburn and Weintraub).
They are both listed in the old Omni magazine indices where Pam Weintraub was an editor and Raeburn was a freelancer.
They are even alumni from the Marine Biological Laboratory Science Journalism Program (1986- Paul Raeburn, Freelance; 1990- Pamela Weintraub, Omni).
For all I know, they lunch at the same NYC deli.
Less than three hours after Raeburn posted his attack bloggery, Weintraub posted a response: “Thanks for posting….”
This is called a conflict of interest. You can’t support your friend’s opinion by writing a hatchet-job piece that agrees with your friend without stating up front that you are doing just that. Of course, KSJT wouldn’t publish such a piece and it’s likely that they’ll remove Raeburn’s commentary in the coming days. Maybe they’ll remove Raeburn’s blogging privileges too.
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Posted by Relative Risk at 08:52 0 comments Links to this post
Labels: Lyme disease, MISC
Isolation of Borrelia burgdorferi sensu lato from blood of adult patients with borrelial lymphocytoma, Lyme neuroborreliosis, Lyme arthritis and acrodermatitis chronica atrophicans.
V. Maraspin, K. Ogrinc, E. Ruzˇic´-Sabljic´, S. Lotricˇ-Furlan, F. Strle.
Infection. DOI 10.1007/s15010-010-0062-8
The findings of our study show that in European patients with manifestations of Lyme borreliosis other than erythema migrans, the isolation rate of B. burgdorferi sensu lato from blood is low (11/442, 2.5%), that it is nearly threefold higher when concomitant erythema migrans is present (36.4 vs. 13.2%, p = 0.0513), and that it is associated with a relatively short duration of clinical manifestations (median 3.5 weeks).
However, our results also reveal that borreliae may not only be cultured from blood early in the course of the disease but, on occasion, also from blood but later in the course of the disease, even during late manifestations, such as acrodermatitis chronica atrophicans.
While it was not completely unexpected to find borreliae in the blood of patients with borrelial lymphocytoma, Lyme neuroborreliosis, and Lyme arthritis (in this latter patient, the arthritis was accompanied by erythema migrans and the clinical course and serological findings indicated an early disseminated infection rather than late Lyme borreliosis), it was a surprise to obtain a positive blood culture result in patients with acrodermatitis chronica atrophicans, not only because of the long-lasting signs and/or symptoms but also because of the pronounced serum borrelial antibody response.
In four of the 11 patients with positive blood cultures, borreliae were also isolated from other sites, such as skin (erythema migrans skin isolate from the patient with Lyme arthritis, 2 acrodermatitis chronica atrophicans skin isolates) and the CSF (1/6 patients with Lyme neuroborreliosis). These Borrelia species were congruent with those isolated from the blood in 2/4 patients, but in the other two patients they were not. These results, indicating double infections, are somewhat surprising but corroborate previous findings. Information obtained predominantly from PCR but also from culture results indicates that an individual patient with Lyme borreliosis may simultaneously harbor more than one Borrelia strain of the same species and even more than one Borrelia species.
The low rate of blood culture positivity, which are comparable to those found in a previous study for adult patients with erythema migrans, the unexpected species of Borrelia isolated relative to the clinical manifestations, and the lack of consistency between borrelial isolates recovered from the blood and those recovered from other sites raise the question of whether there could have been contamination of the cultures in the laboratory.
In a recent study of 33 CSF cultures, one culture (3.0%) was shown to be contaminated by the laboratory performing the cultures. Therefore, the findings should be interpreted cautiously pending confirmation in other studies.
-
Posted by Relative Risk at 09:45 0 comments Links to this post
Labels: diagnostics
It’s been a busy week for the PR department of LymeLand with days and days of hysterical denunciations of the Chicago Tribune for reporting on the mythology of chronic Lyme disease, criticism of equally negative commentary in the FASEB journal, and demands that the Chicago Tribune provide space for Lyme activists to denounce the Trib for its reporting.
So this is probably a good time to remind readers that the arguments of LymeLand’s cut-and-paste pamphleteers should not be taken at face value. They have a loose definition of ethics, no tolerance for questions or criticism, no understanding of what “evidence” means in research or medicine, and a righteous instinct that any real or imagined conflicts of interest be applied to everyone but them and their predatory quack doctors.
J Med Ethics. 2010 Nov 21.
Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism.
Auwaerter PG, et al.
Johnson and Stricker published an opinion piece in the Journal of Medical Ethics presenting their perspective on the 2008 agreement between the Infectious Diseases Society of America (IDSA) and the Connecticut Attorney General with regard to the 2006 IDSA treatment guideline for Lyme disease. Their writings indicate that these authors hold unconventional views of a relatively common tick-transmitted bacterial infection caused by the spirochete Borrelia burgdorferi. Therefore, it should come as no surprise that their opinions would clash with the IDSA's evidence-based guidelines for the diagnosis and treatment of Lyme disease. Their allegations of conflict of interest against the IDSA resemble those made against the National Institutes of Health, the Food and Drug Administration and the Centers for Disease Control and Prevention in 2000, which were found to be baseless. It is the responsibility of all physicians and medical scientists to stand up to antiscientific, baseless and unethical attacks on those who support an evidence-based approach to caring for patients.
Posted by Relative Risk at 16:33 0 comments Links to this post
Labels: Lyme disease
Well, CALDA’s wonkette has weighed in against the recent Chicago Trib article on chronic Lyme disease. It’s not much of a rebuttal. More of a “is to, is not” argument.
She writes, “There is ample evidence if you are willing to read it. There are 27 studies evidencing persistence in humans that have been published in peer-reviewed journals. This information was provided to the Tribune.”
Actually, she provided 29 such references, but that's a far cry from the “almost 300 pages of analysis contesting the IDSA recommendations and over 1,300 pages of peer reviewed research supporting that analysis” that these wild-eyed activists supposedly assembled for the IDSA review in 2009.
And the 29 refs provided to the Trib? It’s a strange collection of aging, irrelevant works. Thirteen of them are individual case reports, which are anecdotes—some of them dating back to the 1980’s before diagnostic and treatment modalities were fully developed. These case reports may say something interesting about a particular patient, but they certainly don’t say anything useful about the general population of Lyme patients. Then there are six articles about PCR diagnosis, which again, may say something about the persistence of DNA in some patient samples but says nothing about the persistence of infection and viable bacteria. Three more articles deal with antibiotic treatment comparisons, and two others address in vitroantibiotic kinetics, which have nothing to do with the question of chronic infection. Three others are from Liegner, a well-known Lyme doc with a thriving practice of “chronic” Lyme patients, so these can be dismissed out of hand. A paper from Shadick (1994) discusses long-term sequelae, which is different from long-term, active infection. Finally, there’s a review article by Steere (1988) that is about arthritis and rheumatic disease and has nothing to do with persistent infection. As I said, it’s a strange collection of “evidence.” No wonder the Trib wasn’t convinced.
Then she writes, “The risks of using antibiotics are quite low,” and cites the following as evidence: Stricker R.B., Green C.L., Savely V.R., Chamallas S.N., Johnson L. Safety of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease. Minerva Med, 2010, 101(1), 1-7.
I’ve already discussed this “study,” but it’s important to remind readers that 1) Stricker, the lead author, was once barred from receiving federal funds and fired from his university after he falsified research data; 2) Savely, a nurse practitioner, was run out of Texas for her treatment of Lyme patients and the Internet version of delusional parasitosis, called Morgellons, 3) another author is from QMedRx, the “Lyme literate” home infusion company, which likes to pump expensive antibiotics into people who think they have a chronic Lyme infection, and 4) there’s Lorraine Johnson herself, the lawyer-wonk who has no training in research or medicine but is nonetheless listed as an author of a clinical treatment trial. Curiously, this “study” may not show significant harm from long-term intravenous antibiotics, but neither did the “study” show any benefits.
There’s more to pick at in Johnson’s attack on the famous Chicago Tribune, but why bother. The only people who will take any comfort from her comments are the choir to which she is always preaching.
Posted by Relative Risk at 13:31 0 comments Links to this post
Labels: Lyme disease
F.B.I. Asks Panel to Delay Report on Anthrax Inquiry
New York Times. By SCOTT SHANE
Dec. 10, 2020
WASHINGTON — The Federal Bureau of Investigation has requested a last-minute delay in the release of a report on the bureau’s anthrax investigation by the National Academy of Sciences, prompting a congressman to say that the bureau “may be seeking to try to steer or otherwise pressure” the academy’s scientific panel “to reach a conclusion desired by the bureau.” [I’m shocked!]
Representative Rush D. Holt, a Democrat of New Jersey and a physicist who has often been critical of the investigation, made the remarks in a letter Thursday to the F.B.I.’s director, Robert S. Mueller III, saying that he found the bureau’s request for a delay “disturbing.” The F.B.I. has told the committee that it wants to turn over an additional 500 pages of investigative documents not provided previously despite the committee’s request for all relevant material when it began the review in April 2009.
“If these new documents were relevant to the N.A.S.’s review why were they previously undisclosed and withheld?” Mr. Holt wrote.
The anthrax-laced letters that killed five people in 2001 were sent from a mailbox in Princeton in his district.
Read the rest of the story here.
The bumbling FBI and its false accusations and conclusions have been discussed previouslyhere, here, here and here.
Why is it that Lyme activist groups can never seem to get expert advice (and therefore credibility for themselves) from any actual infectious disease experts? Instead they seem to rely exclusively on the unqualified and the uncertified, charlatans, cranks, and the occasional crook. The question of expertise came to mind when I ran across this Internet press release from the Time For Lyme activist group in Ct. Part of it is posted below.
The Truth about Lyme Disease: Undercounted and Underfunded.
Dr. Harriet Kotsoris explains the obstacles for Lyme patients and researchers
Greenwich, CT (PRWEB) December 8, 2010
Lyme disease is on the rise, yet public funding for this epidemic lags behind funding for other illnesses, many of which impact a much smaller proportion of the population. “Lyme disease cases increased 77% over a recent two-year span,” says Dr. Harriet Kotsoris, neurologist and medical advisor for Time for Lyme, a research, education, and advocacy group based in Greenwich, CT. “It is the most commonly reported vector-borne illness in the United States and has been documented in 49 states.”
Despite being the fastest-growing tick-borne illness in the States, Lyme disease receives less than 10% of government funding for vector-borne diseases. According to research compiled by the California Lyme Disease Association, federal funding for West Nile virus has been 18 times greater than the funding for Lyme disease.
“This inequality in funding is disheartening,” says Dr. Kotsoris. “Morbidity associated with chronic Lyme disease is significant. Patients suffer a degree of physical deterioration equal to that of patients with congestive heart failure.”
Or maybe brain tumors.
I’d never heard of Time For Lyme’s medical advisor, but a two-second search of the Internet found this:
CASE FACTS: On April 3, 1996, Shelly Zielinski saw Dr. Harriet Kotsoris, a board-certified internist and neurologist, for symptoms including fatigue, headaches and tinnitus. Dr. Kotsoris tentatively diagnosed the patient with Lyme disease and sent her to Stamford Hospital for an MRI of her brain, which was performed on April 10, 1996. Both Drs. Kotsoris and Kristan Zimmerman, a radiologist who was a partner in Associates, which constituted the hospital's radiology department, reviewed the MRI. The physicians failed to detect the presence of an early brain tumor on the MRI. Dr. Kotsoris continued to treat the patient for Lyme disease….
Is it a common bacterial infection or a brain tumor? Sounds like a first-year med school question.
I wonder if Dr. K is treating any of the members of Time For Lyme. You can read more about thishere and here.
Posted by Relative Risk at 12:09 0 comments Links to this post
Labels: Quackery
I found this item on the website of a California Lyme group. It’s one of several items intended as a note of progress in pushing their fake epidemic and alternative medicine propaganda about Lyme disease.
End of the year triumphs
More in-roads into medical journals
CALDA board members Raphael Stricker, MD, and attorney Lorraine Johnson have co-authored some 30 Lyme-related articles which have been accepted for publication in professional medical journals. Their most recent one, published in Philosophy, Ethics, andHumanities in Medicine is the third most accessed article for all time in that journal, with over 10,000 hits.
What they’re trumpeting is the barrage of data-free, cut-and-paste, argumentative letters to journal editors and opinion pieces that Stricker (a “Lyme literate” doc best known for his time at a penis enlargement clinic) and Johnson (an unemployed lawyer) regularly fire off whenever any real scientist or physician publishes something that does not conform to their opinion of how reality is supposed to behave.
Their letters are not research articles or scholarly reviews. They are letters. Anyone can write a letter to a journal. And just about everyone has at one time or another. And anything longer than a letter is just long-winded, cut-and-paste commentary. The rant in PEHM is just that, and it bears a striking resemblance to the rant in Future Microbiology, 2008 and the rant in J. Med. Ethics, 2009, and the rant in South. Med. J., 2009. Nothing like a good rantregularly regurgitated.
As for their PEHM rant being the third most accessed “article” in that obscure British journal, I confess to having added to the hit count. I read their angry little communique. I passed it around to colleagues for laughs. They probably did the same thereby adding to the hit count. Of course, Internet browser hits are not a measure of the quality or importance of site content; after all, think how many hits are generated by Glenn Beck, photos of naked celebrities and videos of cats playing the piano.
Posted by Relative Risk at 09:05 0 comments Links to this post
Labels: Lyme disease, Stricker
Special Report: Denialism
Whose conspiracy? The causes they fight may be different, but scratch the surface and all denial is essentially the same, says Debora MacKenzie.
New Scientist | 15 May 2010
Somehow I missed reading this last spring but found mention of it on another science blog. Below are a couple of key points from the article about how day-to-day denialism works. Further down is a brief psychological profile of the leaders of these kinds of movements. The profile really struck me because I’ve had the displeasure of meeting a few self-described leaders of the chronic Lyme disease movement. The diagnosis fits.
How to be a denialist Martin McKee, an epidemiologist at the London School of Hygiene and Tropical Medicine who also studies denial, has identified six tactics that all denialist movements use. "I'm not suggesting there is a manual somewhere, but one can see these elements, to varying degrees, in many settings," he says (The European Journal of Public Health, vol 19, p 2).
Seth Kalichman, a social psychologist at the University of Connecticut at Storrs, understands this better than most: he spent a year infiltrating HIV denialist groups. Many of the people he met were ordinary and sincere.
“Denialism fills some need,” he says. “For people with HIV, it is a coping strategy,” albeit a maladaptive one. Kalichman, however, feels that everyday reasoning alone is not enough to make someone a denialist. “There is some fragility in their thinking that draws them to believe people who are easily exposed as frauds,” he says.
“Most of us don’t believe what they say, even if we want to. Understanding why some do may help us find solutions.” He believes the instigators of denialist movements have more serious psychological problems than most of their followers. “They display all the features of paranoid personality disorder”, he says, including anger, intolerance of criticism, and what psychiatrists call a grandiose sense of their own importance.
“Ultimately, their denialism is a mental health problem. That is why these movements all have the same features, especially the underlying conspiracy theory.”
Neither the ringleaders nor rank-and-file denialists are lying in the conventional sense, Kalichman says: they are trapped in what classic studies of neurosis call “suspicious thinking”. “The cognitive style of the denialist represents a warped sense of reality, which is why arguing with them gets you nowhere,” he says. “All people fit the world into their own sense of reality, but the suspicious person distorts reality with uncommon rigidity.”
Posted by Relative Risk at 07:53 0 comments Links to this post
Labels: Denialism
As a changing ecology and climate allow ticks, hosts and other potential disease vectors to move north, so too are paranoia and quackery moving deeper into Canada. Case in point, the below news story from British Columbia about the number of reported cases of Lyme disease and the reflexive allegations from local Lyme activists that the numbers must be evidence of a conspiracy because they know better than the experts. Never mind their vested interest in turning cases into epidemics and patients into customers for their Lyme-related products. If you’re an activist, more is better: more Lyme, more money, more members, more power, more attention, more money. It’s a great business model.
Disease expert's excuse is 'hogwash'. Lyme sufferers accuse disease control centre of covering up real figures.
BY ALAN CAMPBELL, RICHMOND NEWS
NOVEMBER 12, 2010
"It's total hogwash."
That was Shannon Goertzen's reaction to the explanation given by B.C.'s top disease expert, Dr. Bonnie Henry, for an alleged cover-up and massive discrepancy between the BC Centre for Disease Control's (BCCDC) official Lyme disease figures and the number of cases diagnosed by the province's doctors.
In 2007, the BCCDC reported just 13 cases of Lyme...while a survey of B.C. physicians by that same organization discovered that 221 cases of Lyme had been diagnosed in the same year.
Moreover, the doctors' survey answers were only handed over to a member of a Lyme support group, Canlyme, after 18 months of repeated inquiries and, eventually, the filing of a freedom of information (FOI) request.
Henry -- director of Public Health Emergency Services at the BCCDC and assistant professor, School of Population and Public Health at UBC -- claimed that the survey results were "not kept quiet in any way" and that the results have been presented "at a number of meetings and conferences" and are undergoing scientific review and validation. That in itself is a "very public process," she added, via an e-mail interview.
[snip]
David Cubberley, a Canylme board member, was equally astonished to hear Henry claiming the survey results had been made public.
"Dr. Henry has never acknowledged it publicly before. However, she has said many times that the survey supports her claims of low incidence of Lyme and that doctors in B.C. know how to diagnose and treat Lyme, yet the few results reported contradict her claims," Cubberley said.
"Bottom line: evidence refuting the official story was covered up for three years. We have never been allowed to see any actual survey results to determine for ourselves, despite repeated requests.
"What's troubling is that the BCCDC persisted in claiming low incidence of Lyme, while having robust evidence that many physicians were seeing and treating it clinically all across B.C.
[Many quacks in the USA are treating large numbers of alleged cases of Lyme disease too. They are claiming many more cases than are being officially reported. So the question is: what is it they are actually treating? Clearly, it’s not Lyme.]
"The BCCDC didn't acknowledge this because it contradicts their fiction that Lyme is rare in B.C."
When the News asked Dr. Henry to explain the gulf in doctor's diagnosed cases and figures released by the BCCDC, she said the centre can't report it if they don't know about it.
"In order for a case to be reported to the BCCDC, the case must be lab confirmed or a physician must report it to the BCCDC," she said by e-mail.
"This survey provides valuable insight into clinician knowledge, beliefs and practice in B.C.
"One (survey) question asked about the number of patients with (Lyme) that physicians had seen in their practice in 2007.
"It was a general question and did not ask if they were acute cases, had signs and symptoms which meet the surveillance criteria we use in B.C., whether it was an assessment of a tick bite, or whether they were affected while in B.C. or traveling etc.
"For these reasons, we cannot use this data as official reporting. Also, based on this data, it is difficult to determine if each case saw more than one physician (ie. two or more doctors are referencing the same patient)."
Henry was also asked to explain why, according to the BCCDC's survey, only 60 per cent of B.C.'s doctors knew that Lyme was even a reportable disease.
"The simple answer is that physicians do not report clinical cases to medical health officers with the degree of completeness that we would like," Henry said.
"This is true for all the 40 plus reportable diseases and in our surveillance we are largely reliant upon laboratory testing to alert us to trends. British Columbia is no different from any other jurisdiction in this regard."
[snip]
Posted by Relative Risk at 09:41 0 comments Links to this post
Labels: Lyme disease
A quick slog through the LymeNut swamp found another poor victim of multiple Lyme-related infections. The last such victim claimed only five different infections. Today’s winner has six. Here’s the proud winner’s online post:
I guess co-infections are old news to most of you but I'm still reeling-- just got my lab results on Friday and it turns out I have 6 different diseases:
Lyme
Rocky Mountain Spotted Fever*
Babesiosis
Mycoplasma pneumoniae
Rickettsia typhi**
Human granulocytic anaplasmosis
[*the mortality rate now ranges from approximately 2% in children to 9% in elderly persons. **Untreated epidemic typhus carries a mortality rate of as low as 20% in otherwise healthy individuals and as high as 60% in elderly or debilitated persons.]
I continue to marvel at the ability of these people to withstand so many simultaneous infectious agents—some of which have significant mortality rates. In the real world, most of us would be under a doctor’s care or in a hospital for any one of the above agents, but these online Lymees are tough, able to sit at home chatting on the Internet, and basking in the admiration and envy of their fellow LymeNuts. One such admirer writes:
…I wish I could get positives on some coinfections. They keep comin[g] up neg and I am constantly second guessing every treatment I get.
Well, with the right quack doctor and diagnostics company, I’m sure you will. Best of luck with your hypochondria.
Posted by Relative Risk at 12:06 0 comments Links to this post
Labels: Lyme disease, Psych
Chronic Lyme disease: in defense of the scientific enterprise.
Phillip J. Baker, American Lyme Disease Foundation, Lyme, Connecticut
The FASEB Journal, Vol. 24 November 2010.
[snip]
Some Lyme disease activists continue to make the astounding claim that this overwhelming consensus of independent expert opinion is the result of conflicts of interest and/or a vast conspiracy by a cabal to suppress the truth. This is absurd, especially when such claims are made by “Lyme-literate physicians” who profit immensely from the prolonged treatment of chronic Lyme disease. It should be noted that the composition of the IDSA guideline review panel was approved by an independent ethicist, who found no evidence of conflict of interest with respect to any member of the review panel. Instead of casting doubts on the reputation of distinguished scientists and the organizations to which they belong, those who disagree would be well advised to do the following if they wish to gain acceptance from the scientific and medical community for their unproven views:
1) Develop a precise definition of what is meant by “chronic Lyme disease” so that it can be distinguished unequivocally from other medical conditions with similar symptoms.
2) Provide direct and unequivocal evidence that a patient suspected of having chronic Lyme disease really has a persistent B. burgdorferi infection that justifies antibiotic therapy.
3) Demonstrate, from the results of published, peerreviewed, randomized, placebo-controlled trials, that extended antibiotic therapy is beneficial and safe for the treatment of chronic Lyme disease.
Posted by Relative Risk at 17:21 0 comments Links to this post
The diagnostic spectrum in patients with suspected chronic Lyme neuroborreliosis – the experience from one year of a university hospital’s Lyme neuroborreliosis outpatient clinic. M. Djukica, et al. European Journal of Neurology 2010.
In this study, we enrolled within 1 year 122 patients with suspected chronic LNB. One hundred and fourteen patients had previously tested positive for BB. All patients had previously received antibiotic treatment. Each patient received a clinical examination and measurement of BB-specific antibodies. The diagnosis of neuroborreliosis was made according to the national guidelines of the German Society of Neurology. Nine patients had acute borreliosis. One of the nine met the criteria of acute LNB.
Of the remaining 113 patients, 85 patients underwent a lumbar puncture. Ten seronegative subjects without lumbar puncture were also considered. In 61.8% of these 95 patients the quality of life, of sleep, mood, and anxiety were assessed.
Of 95 patients, 25.3% had symptoms without a somatic cause or evidence of borreliosis, 38.9% had a well-defined illness unrelated to BB infection, and 29.5% suffered from symptoms without a detectable somatic cause, displaying antibodies against BB. Six patients were grouped as post-LNB syndrome.
Most common symptoms in all categories were arthralgia, myalgia, dysaesthesia, depressive mood and chronic fatigue.
To anticipate the objection that the study omitted the Borrelia culture, CSF-Borrelia PCR was performed. Borrelia PCR is very insensitive but is still more sensitive than the CSF culture. No one was PCR positive.
Following our laboratory results, 24 patients were seronegative, indicating that the suspected diagnosis chronic LNB either might have been based on false laboratory results or might alternatively point to a prior successful therapy or a latent systemic infection without CNS involvement.
Because the diagnosis of LNB in patients without CSF inflammation often results in inadequate treatment of the patients, the case definition of acute LNB used in
this study was set in accordance with national and European guidelines. The correct diagnosis of LNB is very important as a BB infection can be effectively treated antibiotically. However, long-term antibiotic therapy is not harmless and can cause serious side-effects, so that antibiotic treatments of patients with other treatable disorders have to be avoided. In our population, we observed two patients with potentially life-threatening complications of antibiotic therapy (Clostridium difficile enteropathy and bone marrow suppression).
In conclusion, following the current national guidelines, the diagnostic entity of chronic LNB is a clinical diagnosis supported by characteristic CSF abnormalities, in particular elevated CSF leukocyte counts, and should not be made on the basis of a positive response to antibiotic treatment alone or on persistent antibodies against BB in serum.
The 55 patients who filled in the questionnaire had well-documented impairments in their quality of life, sleep, and significantly higher sum scores for depression compared to the control group. Even though BDI depression scores were often only slightly higher than the cutoff score, these patients should be examined for depressive symptoms. The questionnaire results were similar in categories I–III, i.e. even in the category with negative serology at the time of this study.
The strong psychological influence in this disease entity is illustrated by a controlled study indicating that ~40% of patients with persistent symptoms after recommended antibiotic treatment responded positively to placebo.
Flow chart of included patients. Category I: no Borrelia burgdorferi (BB) antibodies in serum, clinically no borreliosis. Category II: well-defined disease unrelated toBB infection. Category III: symptoms without a detectable somatic cause, with serum antibodies against BB but no history of objective clinical findings that are consistent with (neuro)borreliosis, normal CSF leukocytes. Category IV: residual symptoms after previously proven (neuro)borreliosis.
Posted by Relative Risk at 17:06 0 comments Links to this post
Labels: Lyme disease
27 October 2010
...the Internet is full of crazy people with crazy ideas looking for crazy people with whom to share their craziness. It’s a giant Match.com for the crazy. Case in point. Multiple sclerosis is Lyme disease: Anatomy of a cover-up. Perhaps the biggest ongoing medical scandal of the past hundred years is the fact that it has been known since 1911 that Multiple Sclerosis is caused by a bacterium, and that the medical establishment covered this up, in order to make money selling symptom relievers to MS patients. Since 1911, overwhelmingly much medical research has been conducted where living Borrelia bacteria were found in the brains of people who were diagnosed with MS. Time and time again. By at least a dozen medical researchers. In at least ten countries. Since 1911 – the past one hundred years. Several older but also recent autopsy findings linked to in this article found that all deceased MS patients’ brains harbored living Lyme spirochetes. Even when tests, notorious for their large percentage of false negatives were used on living MS patients, staggeringly many tested positive for active Lyme borreliosis.
This site [unnamed here] is run by Sarah…a nutritionist…. Sarah is still recovering from chronic Lyme neuroborreliosis [big surprise]. Sarah dislikes the corrupt FDA, Codex Alimentarius, gene modified food and Big Pharma. Both Sarah and John [a crazy friend] are the “brain” behind the products offered on this site. John and Sarah’s hobby is investigative health journalism and patent database research with the purpose of developing practical new products to promote health and beauty. [They have something to sell to desperate MS patients? I’m shocked!]
[Here’s their helpful disclaimer:]
Please note that we are not medical doctors and that our opinion is not medical advice. Neither are our producs sold as medicines, but as food supplements or beauty products. Always consult professional medical advice before self-medicating. Sarah does not answer questions over the phone. [Does her lawyer?] Our business phone number is only monitored by our dispatch team and webmaster.
Posted by Relative Risk at 10:26 0 comments Links to this post
Labels: Psych
Doctor who offered fake Lyme disease cure pleads
October 26, 2010
KANSAS CITY, Kan. (AP) — A Kansas doctor has pleaded guilty to being part of a scheme to sell a phony system to diagnose and cure Lyme disease.
U.S. Attorney Barry Grissom says 61-year-old John R. Toth, of Topeka, pleaded guilty Monday for his part in the fraud. He agreed to pay a $30,000 fine. Sentencing is set for Jan. 18.
Toth admitted that, beginning in September 2001, he and three co-defendants began selling a microscope they said could diagnose Lyme disease. They also promoted a drug treatment plan they claimed could cure the disease. Toth charged patients for use of the microscope and drugs.
Authorities say the drugs caused the death of one Kansas resident and renal failure in another.
Toth's three co-defendants have pleaded guilty and are awaiting sentencing.
Posted by Relative Risk at 22:50 0 comments Links to this post
Labels: Lyme disease
Few docs recognize "chronic" Lyme disease
Fri, Oct 22 2010
By Frederik Joelving
NEW YORK (Reuters Health) - Despite lots of media attention, "chronic" Lyme disease is only recognized by a small group of doctors in Connecticut, where the tick-borne infection was first discovered.
That's according to a new statewide survey, reported in the Journal of Pediatrics, that found just two percent of doctors in Connecticut said they had diagnosed and treated the controversial chronic version of the disease.
If you are online a lot, "you think every doctor in Connecticut believes in chronic Lyme," said Dr. Henry Feder, of the University of Connecticut Health Center in Farmington, who worked on the study.
"What the poll shows is that's not true," he added.
[snip]
"There is a very small number of doctors who are very active on the Internet as well as politically and have a different point of view than the evidence dictates," said Feder, who is a member of the IDSA but was not involved in establishing the guidelines.
According to the National Institute of Allergy and Infectious Diseases, rigorous clinical studies have shown that prolonged treatment is of little benefit to patients who have no signs of infection, but still suffer from fatigue and headaches. Apart from making patients prone to diarrhea and fungal infections, long-term antibiotic treatment can also lead to serious infections if it's delivered by an intravenous line.
[snip]
"If someone is going to get IV therapy for Lyme disease, there are dangers involved and they should get a second opinion," he said, adding that Lyme disease is usually treated with only one antibiotic, such as doxycycline, taken by mouth. He found half of the 285 doctors who answered his poll didn't believe in the existence of chronic Lyme disease. Slightly fewer said they were undecided, but did not diagnose or treat the chronic version.
[snip]
Lyme expert Dr. Raymond Dattwyler, of New York Medical College, said he wasn't surprised by the poll results. "Chronic Lyme disease is just not accepted by the vast majority of physicians," he told Reuters Health. "The majority of people who get the diagnosis of chronic Lyme disease have either depression, fibromyalgia or another chronic illness."
"If you look at the symptoms that they report to be associated with chronic Lyme," he added, "population studies have shown those are very common complaints among the general population."
"The tragedy is that sometimes really serious, treatable diseases are ignored."
SOURCE: link.reuters.com/zyb89p Journal of Pediatrics, online September 1, 2010.
Posted by Relative Risk at 09:24 0 comments Links to this post
Some notes from:
Lyme Borreliosis in Dogs and Cats: Background, Diagnosis, Treatment and Prevention of Infections with Borrelia burgdorferi sensu stricto.
Krupka I, Straubinger RK.
Vet Clin North Am Small Anim Pract. 2010 Nov;40(6):1103-19.
DOGS
Unlike human LB [Lyme Borreliosis], the clinical phases of the disease in dogs cannot be divided clearly into 3 stages. Although experimentally infected monkeys showed clinical signs similar to those seen in humans, the dog nevertheless seems to be the most susceptible domestic animal, and serves as a sentinel and an appropriate animal model to investigate human LB.
In most cases the exact time point of infection via tick bite cannot be determined in dogs, because the feeding tick (adults or nymphs) are overlooked by the owner. It is commonly accepted that not all infected individuals continue to develop clinically apparent disease. In experimentally induced infections, up to 75% of all infected dogs developed disease. No broad epidemiologic data are available so far on clinical disease in naturally infected dogs. Contrary to common beliefs, the presence of serum antibodies does not correlate with clinical signs and many infected dogs seroconvert and stay asymptomatic.
The first signs of clinical disease are unspecific and do not develop in all dogs; acute signs can be fever, general malaise, lameness, and swelling of local lymph nodes.
With the dissemination of the spirochetes into the skin, joints, and connective tissues, local inflammatory reactions can cause pain, swelling, and lameness. Dogs became lame 2 to 6 months after experimentally induced infections. Severe lameness lasted for 2 to 5 days as a mono- or oligoarthritis.
In natural infected dogs, glomerulonephritis with protein loss was described for certain breeds. Fatal and progressive renal disease including peripheral edema, azotemia, uremia, proteinuria, and effusion into body cavities was often associated with emesis. Lethargy was also documented in the study, in which 49 cases were further analyzed; disease was lethal or resulted in euthanasia for all dogs after 1 day to 8 weeks after onset.
CATS
Cats also suffer from tick bites and are hosts for Ixodes ticks. However, no case of a cat naturally infected with clinical LB has been described so far. Nevertheless, experimental infections via spirochete inoculation different from tick exposure resulted in short-lived bacteremia. If the cats were exposed to tick bites, they developed lameness and multilocalized inflammations such as arthritis or meningitis. Cats also developed measurable antibody responses. In northern parts of the United States, where LB is endemic, 13% to 47% of cats were found to be seropositive.
TREATMENT
Contrary to LB in humans, the time of infection cannot be pinpointed in most animals, and most cases that the veterinarian decides to treat are in a phase in which the spirochetes have already disseminated into various tissues. Because the success rate of antimicrobial treatment is higher during the early stages of the disease, treatment should be initiated as early as possible. In these cases, antibody levels may decrease and lameness or other disorders may be reduced or disappear completely within 1 to 3 days after initiation of treatment. The question of whether dogs (or cats) should be treated when specific antibodies are detected in the absence of clinical signs is controversial. We believe that only clinically apparent individuals should be treated. Generally, treatment is recommended for a period of 28 to 30 days.
Posted by Relative Risk at 11:00 0 comments Links to this post
Labels: Lyme disease
VECTOR-BORNE AND ZOONOTIC DISEASES
Oct 6, 2010
Notes from “Borreliosis During Pregnancy: A Risk for the Unborn Child?”
Ioannis Mylonas
Little is known about the possible harmful effects of Borrelia infections in pregnancy, since such a risk analysis is difficult to perform. Transplacental transmission of B. burgdorferi has been documented in several animal studies. Therefore, it has been believed that fetal infection and possible teratogenicity could arise from B. burgdorferi, especially considering the similarities between Lyme borreliosis and syphilis.
The likelihood of a transplacental infection is probably higher at the beginning of pregnancy than in the remaining duration of pregnancy. Besides abortion, malformations such as syndactyly, ventricular septum defect, and heart rate defects have been described. However, some case reports of pregnant women with erythema migrans or neurological involvement were reported without any association between infection and adverse pregnancy outcome.
A series of 105 women with erythema migrans during pregnancy was reported in 1999. Ninety-three women (88.6%) had healthy infants delivered at term, whereas six pregnancies (5.7%) resulted in preterm birth and two (1.9%) pregnancies ended with a miscarriage. Two preterm newborns died shortly after birth, while one had cardiac abnormalities. Of the 93 deliveries at term, 4 newborns (3.8%) displayed congenital abnormalities. However, B. burgdorferi infection could not be directly implicated as the primary etiology of these malformations.
In another study, 60 placentas from asymptomatic women with increased levels of antiborrelial antibodies and who lived in an area endemic for borreliosis were examined with silver staining. Three placentas (5%) were positive for spirochetes, and the PCR results were positive for Borrelia in two of the three placentas. The women had negative serologic results for borreliosis and syphilis, with normal pregnancy outcomes.
These observed birth defects and adverse pregnancy outcomes could not be clearly linked with fetal infections. Instead, a maternal inflammatory reaction to the infection was considered to be responsible. Further, Lyme disease during pregnancy is immediately treated with antibiotics, which decreases the frequency of a possible fetal symptom by two thirds, according to most studies. However, a teratogenic effect cannot be excluded, although evidence for this has not yet been demonstrated. Altogether, the risk of an intrauterine transmission from the mother to the fetus has been thought to be unlikely, especially when a high-dose antibiotic is administered early. Still, a connatal infection despite oral antibiotic treatment of the mother has been reported.
Several studies have looked at the connection between seropositivity during pregnancy and fetal malformation and adverse pregnancy outcome.
In 1416 pregnant women, of which 12 (0.85%) were seropositive, no increased risk of malformation could be demonstrated. Another clinical and serological study was performed where 2000 women were examined at the first prenatal visit and again at delivery. Eleven women (0.7%) were seropositive and 79 (4%) had reported Lyme disease in the past. No association between exposure of the mother to B. burgdorferi either before conception or during pregnancy could be made with adverse pregnancy outcome or congenital malformations.
Yet another study, which compared 5000 infants in an endemic area to a control group, showed no significant difference in the incidence of congenital malformation. There was a statistically significant higher incidence of congenital heart malformation in the endemic areas, although within this population there was no correlation between heart malformation and clinical or serological Borrelia infection.
In a retrospective case–control study of 796 patients with heart disease documented at birth and 704 control cases, a correlation was found between heart failure at birth and anamnestic tick bites or borreliosis cases during pregnancy. However, there was no association between congenital heart defects and either a tick bite or Lyme disease.
Since there have been no reported cases of transmission of Borrelia via breast milk, the risk of this cannot be assessed.
Posted by Relative Risk at 12:36 0 comments Links to this post
Labels: Lyme disease
I know this will seem like a rerun of a rerun of a rerun, but for those people who may be keeping track, the November 1 issue of Clinical Infectious Diseases contains two letters from Richard Whitley, President, Infectious Diseases Society of America, and the members of the 2009 IDSA guidelines review panel (Paul M. Lantos, William A. Charini, Gerald Medoff, Manuel H. Moro, David M. Mushatt, Jeffrey Parsonnet, John W. Sanders, and Carol J. Baker) refuting (again) the accusations of that carping couple, Lorraine Johnson and Ralph Stricker. I'm beginning to wonder if these two have some kind of OCD that manifests itself in the form of letters and editorials.
Posted by Relative Risk at 08:30 1 comments Links to this post
Labels: IDSA
Last week, a couple of Lyme disease activist groups announced they were boycotting the upcoming IOM meeting on Lyme disease and related tick-borne infections. While some groups are boycotting, others are not. Various reasons for each action were announced, but it was an interesting reminder of the fractious nature of these different groups, their goals, and their uneasy relationship with the rest of the world (i.e., reality).
This week, the online group, LymeNet, closed their Internet discussion group to outsiders. Apparently, a number of I.P. addresses also have been blocked so anyone at CDC, NIH, various medical schools or a state public health lab probably will have trouble trying to read the daily postings. Perhaps it’s a symptom of the IOM boycott or just a growing sense of paranoia. Instead of a semi-open forum with spectator viewing, there is now a secret knock, a secret handshake and an oath not to identify any “Lyme Literate” docs or suggest anything that smacks of heresy. (All cults and theologies first demand obedience, then money, then exile you when you run out of both.)
In any case, it’s a welcome end to what was probably the most visible promotion of quackery and pseudoscience related to tick-borne infections. A colleague once complained that reading through the daily nonsense made his head feel like it was going to explode. Now fewer naïve people clicking around the Internet will stumble into this modern-day bedlam of cranks, quacks, and hypochondriacs, and may instead have a somewhat greater chance of finding some honest and accurate information about Lyme disease.
Perhaps LymeNet will go the way of the old newsgroup, sci.med.diseases.lyme, which once had several hundred members, but was depopulated by infighting and insults, leaving only a single madwoman in Connecticut who posts nonsense to herself under the online name of Mort Zuckerman.
The current boycotts and the online lock-outs should be a reminder to readers, reporters, and legislators that the public “battle” between scientists and Lyme activists is also a private battle among Lyme activists. Yes, it’s a lot like the Middle East, and in both theaters it’s hard to remember who’s fighting whom for what and why.
Posted by Relative Risk at 09:05 0 comments Links to this post
Labels: IOM
Eastern shore doctor faces probation over Lyme disease cases
A doctor on the Eastern Shore known for treating people with Lyme disease has been put on indefinite probation by the Virginia Board of Medicine and permanently banned from prescribing narcotics.
[snip]
Dr. Geoffrey Gubb, who has a family practice in Belle Haven, was accused by the board of treating 15 patients with high-powered pain drugs while failing to monitor their condition or properly document diagnoses. Gubb, 73, has until Oct. 16 to ask for an appeal on the matter. If he declines, the order will become final that day.
In an interview last week, Gubb said he has decided to close his family practice at the end of the month. He said he treats about 800 patients, most of whom are fromVirginia, Maryland and Delaware. [Note: In 2009 Virginia had 698 confirmed cases of Lyme.] About 600 of them have Lyme disease, he said, and many crossed the Chesapeake Bay Bridge-Tunnel from Hampton Roads to get a type of treatment that most doctors refuse to prescribe because it goes against recommended guidelines.
[snip]
The Infectious Diseases Society of America and the American Academy of Neurology, however, say that there's no scientific evidence to support this theory, and that the prolonged use of antibiotics and prescription painkillers is dangerous.
Spurred in part by an investigation by the Connecticut attorney general, the infectious disease society appointed an independent panel to review its treatment guidelines for Lyme disease. In April, the panel concluded there was no scientific evidence to support the prolonged use of antibiotics. Further, the panel said, symptoms attributed to "chronic or persistent Lyme disease," such as fatigue and cognitive problems, are seen in many other clinical conditions and are also common in the general population.
"It would thus be clinically imprudent to make the diagnosis of Lyme disease using these nonspecific findings alone," the panel noted.
Dr. Edward Oldfield, chief of the infectious disease division at Eastern Virginia Medical Center, said diagnosing a condition that the society doesn't recognize is troubling on several fronts. One is the risk of misdiagnosis. The person's symptoms could be caused by conditions such as cancer or lupus, and a misdiagnosis would delay treatment. Prolonged use of antibiotics also can lead to side effects such as nausea and IV infections. Also, there's the cost of a treatment that scientific evidence has not shown is effective.
"It's not that these people do not have real symptoms, but that medicine does not have a solution for them," Oldfield said.
[snip]
"It's very disturbing to see clinical guidelines based in scientific evidence politicized," Oldfield said.
[snip]
One key difficulty with Lyme disease is that the blood test used to diagnose it is not always conclusive and is riddled with false positives.
In some regards, the condition has similarities to fibromyalgia, another mysterious pain ailment that can be difficult to diagnose. Some critics regard these conditions as psychosomatic, at least in some cases, another frustration to those who suffer from chronic pain.
But the diagnostic fuzziness also provides an opportunity to abuse prescription painkillers, a problem one federal agency estimates has surged by 400 percent during the past decade.
[snip]
Gubb and his lawyer, Michael Goodman, said they are still reviewing his options regarding the Virginia board's action. However, Gubb said he has already told his patients with Lyme disease he is closing up shop.
[snip]
Posted by Relative Risk at 12:16 0 comments Links to this post
Labels: Lyme disease
Burrascano demonstrating the “Little Dutch Boy” technique of blocking further loss of grey matter.
I came across this bit of Burrascano wisdom the other day on someone’s blog. Thank God this quacker no longer has a license to practice medicine.
On Sunday, October 25, 2009, as part of the ILADS yearly Lyme disease conference, I attended a presentation by Dr. Joseph Burrascano MD, a leader in the treatment of Lyme disease. The topic was "Advanced Topics in Tick-Borne Illnesses". I was very interested in the information that he shared. In fact, I was "glued to the screen".
Clinical Pearls and Observations
Dr. B. gave the group a number of "Clinical Pearls". He shared the following:
Spending time at the ILADS event provides a sense of hope for the future. Brilliant minds are working together and collaborating on how to get patients well. It feels like we are getting closer...
To total delusion?
Posted by Relative Risk at 22:11 0 comments Links to this post
Labels: Lyme disease
Fri, Sep. 17, 2010
Guilty plea in Lyme disease scheme
By BRAD COOPER
The Kansas City Star
A California man Friday pleaded guilty in federal court to scheming to sell medical equipment and drug treatments for a false epidemic of Lyme disease.
Prosecutors said the scam led to one death and one person suffering kidney failure.
Robert W. Bradford, 79, pleaded guilty in Kansas City, Kan., to one count of conspiracy to commit mail fraud and to introduce misbranded drugs into interstate commerce, federal prosecutors said.
Bradford admitted that he and his co-defendants made more than $400,000 selling a microscope that they claimed could be used to diagnose Lyme disease, and a treatment plan that they claimed could cure the illness.
Posted by Relative Risk at 10:13 0 comments Links to this post
Labels: Lyme disease
The worst part about holding a public meeting on Lyme disease is the flood of junk people send in before the meeting begins. Case in point, Ken Liegner’s tediously long letter full of undocumented claims and aged references. In fact, the whole thing reads like a cut-and-paste of his remarks to the NYS Assembly Committee on Health on November 27, 2001. Anyway, if the good doctor (Lyme Literate doctor, that is) can stand to go through this once more then so can I.
September 14, 2010
Dear Lonnie King, Christine Coussens, Trevonne Walford and Panel Members:
I spoke with Trevonne a few days back to inquire whether or not there would be opportunity for attendees of the up-coming meeting to make comments and/or statements in the context of the meeting and learned that the meeting was structured only to allow focused questions in response to a preceding presentation or discussion. I mentioned in passing that I was pleased to see that there was representation of a diversity of views in terms of choice of speakers which included Carl Brenner, John Aucott, Brian Fallon, Sam Donta and Pam Weintraub.
It has since been pointed out to me that many of these individuals have very limited time in which to articulate a position concerning the issue of chronic Lyme disease since the physicians are ensconced within discussion panels and do not have the opportunity to speak at length.
The process of planning the meeting has been, as far as I can tell, quite opaque and it is notable that clinicians who actually treat persons with chronic Lyme disease have been nowhere to be found on either the planning committee or the panel. Neither is any clinician afforded adequate time to present, in a formal way, an opposing position to what must be viewed as the “keynote” speech by Dr. Wormser. Dr. Wormser’s extreme view on the existence of the entity of chronic Lyme disease needs no repeating but does need rebuttal.
Physicians who have cared for persons with chronic Lyme disease have faced harassment at a minimum and for some, their careers have been ruined.
Well I know there’s a list of doctors who have been convicted in state and federal courts of various crimes. Others have been sued by their injured patients. Still others have been hauled before state licensing boards—not for treating chronic Lyme patients—but for being bad or dangerous doctors. In any case, how about some names and how exactly were they harassed? Come on, just a couple of poor LLMD victims.
Researchers who have seriously dedicated themselves to the scientific study of chronic Lyme disease in humans and/or animals have often found themselves attacked or marginalized. To persist in their researches would have resulted in virtual career suicide and some have been forced, by exigencies of survival, to leave the field.
Again, how about some names.
Laboratories that test extensively for Lyme disease, including use of direct detection methods such as PCR, have found themselves subjected to concerted smear campaigns and harassed.
I’m guessing he’s talking about Igenex in California. Smeared by the NYT and the San Francisco Chronicle? And maybe MMWR? I don’t think so.
Whereas PCR is a well-accepted method in virtually all other infectious diseases, its clinical use for Lyme disease has also been marginalized.
“Virtually all other infectious diseases”? No. Only where it’s been standardized and validated.
Direct detection methods developed more than a decade ago by some of this country’s finest physician-researchers and biomedical research scientists (Dorward DW, Schwan TG, Garon CF. Immmune Capture and Detection of Borrelia burgdorferi Antigens in Urine, Blood, or Tissues from Infected Ticks, Mice, Dogs, and Humans. J Clin Microbiol 1991;29:1162-1170 & Coyle PK, Deng Z, Schutzer SE, Belman AL, Benach J, Krupp L, Luft B. Detection of Borrelia burgdorferi antigens in cerebrospinal fluid. Neurology 1993;43:1093-1097 & Coyle PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL, Luft BJ. Detection of Borrelia burgdorferi-specific antigen in antibody-negative cerebrospinal fluid in neurologic Lyme disease. Neurology 1995;45:2010-5) have been moth-balled, I believe, for political and medical socioeconomic reasons.
Ahh, the usual paranoia of the Lyme community. And what would be some of the political or socioeconomic reasons for holding back PCR-based diagnostics? And how would one hold back all of the PCR/diagnostic work of all researchers in all countries? Anyway, some of the people named above will be at the Oct. IOM meeting so they can speak to the technical issues...and maybe even the paranoia.
Seronegativity, a well-recognized feature of spirochetal disease (e.g. in syphilis) is held to not need consideration despite early recognition of this phenomenon in Lyme disease, ironically, by a signer of the 2000 and 2006 IDSA Lyme disease guidelines (Dattwyler RJ, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG. Seronegative Lyme Disease. Dissociation of T- and B-Lymphocyte Responses to Borrelia burgdorferi. N Engl. J Med 1988;319:1441-6).
More ancient references. Well, Lyme Borreliosis isn’t syphilis. The similarities end at bacterial morphology.
That there is no active support by the Federal government for training programs for pathologists or support for pathologic laboratories for in-depth pathologic study of tissues from humans with chronic Lyme disease using all available methods (and which, hopefully, might develop new and superior methods) indicates a choice to remain in ignorance. There could and there should be one or more such laboratories of highest scientific calibre where such methods could be made available to clinicians and researchers and their patients, comparable to the Armed Forces Institute of Pathology, which has been known for excellence in the study of syphilis.
Syphilis again? How much syphilis can this guy see in a Westchester County practice? Does Elliot Spitzer live there?
A key formative influence in the creation of the National Institutes of Health was Metropolitan Life Insurance Company (Harden VA. Inventing the NIH. Federal Biomedical Research Policy 1887-1937.Johns Hopkins University Press. 1986. pp.57-59,114 & 122). It would be naïve not to consider the possibility of ongoing behind the scenes influence of the insurance industry on N.I.H. policy.
Right. That’s why secret talks are now underway to move the NIH to Hartford, insurance capital of the world. The Met also ran a visiting nurses program in the first half of the 20th century so nurses are probably in on the Lyme disease conspiracy too.
Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease in humans and animals. Much of this evidence was presented to the Lyme Disease Review Panel of the Infectious Diseases Society of America on July 30, 2009. Regrettably, the panel chose to sustain the 2006 IDSA Lyme Disease Guidelines. IDSA leaders were defiant from the outset asserting the Connecticut Attorney General could make them review the guidelines but that he couldn’t make them change them. In retrospect it was a serious strategic error to leave the review process within the hands and ultimately under the control of the IDSA itself.
It wasn’t. As has been reported here, here, here, here, and here.
The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.
However, such guidelines are indeed useful. They serve to shield from liability physicians who neglect persons with chronic Lyme disease. By misusing CDC case surveillance criteria as the sole basis for a clinical diagnosis of Lyme disease, these guidelines serve the insurance industry very well indeed because such cases represent but the tip of the iceberg of actual cases of Lyme disease, whether acute or chronic.
I don’t see too many lawsuits over cases of neglect in treating Lyme disease. Yet, insurance is a big issue within Lymeland, especially since these LLMDs don’t seem to take regular medical insurance. Liegner doesn’t either. Why is that?
Denial of the possibility of seronegative Lyme disease, likewise serves the insurance industry well and also such simplistic constructs for Lyme disease also serve those physicians who cannot wrap their minds around the true complexity of this illness. The medical profession and the United States Public Health Service, predecessor to the CDC, have a long history of medical neglect of persons suffering from spirochetal infection. The profession and the USPHS were completely unable to reform themselves from within in this regard. It required moral and political intervention from without to bring the Tuskegee Experiment to an end with Senator Edward Kennedy’s hearings in February and March, 1973 before Committee of Labor and Public Welfare’s Sub-Committee on Health (Jones JH. Bad Blood: the Tuskegee Syphilis Experiment – a tragedy of race and medicine. The Free Press. New York. 1981 pp. 213).
“…a long history of medical neglect of persons suffering from spirochetal infection.” What other spirochetal infections might he be talking about other than syphilis? Again with the syphilis. Maybe Liegner is worried about the Jim Crow South rising again, and antibiotics disappearing. Anyway, what does it have to do with Lyme and the IOM?
The Tuskegee Experiment involved about 400 subjects. Lacking the taint of racism, nonetheless the “mainstream” handling of chronic Lyme disease affects far more people; it would be a fair estimate to say, Tuskegee X 10,000 in the United States alone. Furthermore, the standards held out by the CDC and the IDSA have worldwide influence. Canadians are unable to get care for chronic Lyme disease. We are seeing significant numbers of persons with chronic Lyme disease forced to leave Canada for care.
Are they coming to Westchester? And how many are leaving?
State legislators have begun taking matters into their own hands and the states of Rhode Island, Connecticut, California, New York, Massachusetts and Minnesota have passed laws or promulgated policies protecting physicians who treat persons with chronic Lyme disease. Are these legislators stupid? Are they dupes of Lyme activists? Or can they see what is so obvious to the patients and to any good clinician, that Lyme disease can be a chronic infection that often requires a long-term treatment approach? Furthermore, as the disease spreads and more and more individuals are affected, legislator’s staffers, their wives, their children and they themselves are experiencing the effects of chronic Lyme disease.
Well, they’re local politicians trying to please the local voters. They’re not stupid, but neither are they scientists or physicians. They have crafted fairly harmless language that still allows licensing boards to go after quacks (as recently noted in Ct.), and patients to sue doctors.
In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.
In your dreams. Lyme borreliosis remains a real bacterial infection. Chronic Lyme is just the latest manifestation of a phenomenon of depression and subjective symptoms that dates back to the 19th century. The only shame or conspiracy here is the kind of “medicine” these LLMD quacks practice on their prey.
This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration.
Finally, below is an ancient list of trivia work by Liegner and a pathetic list of meetings he sat through intended, I suppose, to suggest he’s a real researcher or major player in the fields of public health and emerging infectious diseases.
I am forwarding by mail copies of two of my abstracts and several published articles concerning such individuals for each panel member as I do not have these in PDF format (Liegner KB, Rosenkilde CE, Campbell GL, Quan TJ, Dennis DT. Culture-confirmed treatment failure of cefotaxime and minocycline in a case of Lyme meningoencephalomyelitis in the United States [abstract]. Programs and abstracts of the Fifth International Conference on Lyme Borreliosis, Arlington, VA, May 30-June 2, 1992. Bethesda,MD: Federation of American Societies for Experimental Biology; 1992:A11. & Liegner KB, Duray P, Agricola M, Rosenkilde C, Yannuzzi L, Ziska M, Tilton R, Hulinska D, Hubbard J, Fallon B. Lyme Disease and the Clinical Spectrum of Antibiotic-Responsive Chronic Meningoencephalomyelitides. J Spirochetal and Tick-borne Dis 1997;4:61-73 & Liegner KB. Lyme Disease: The Sensible Pursuit of Answers. (Guest Commentary). J Clin Microbiol 1993;31:1961-1963 & Liegner KB & Jones CR. Fatal progressive encephalitis following an untreated deer tick attachment in a 7 year-old Fairfield County, Connecticut child. [Abstract] VIII International Conference on Lyme Disease and other Emerging Tick-borne Diseases, Munich, Germany, June 1999 & Liegner KB, Shapiro JR, Ramsay D, Halperin AJ, Hogrefe W, Kong L. Recurrent Erythema Migrans Despite Extended Antibiotic Treatment with Minocycline in a Patient with Persisting B. burgdorferi Infection. J Amer Acad Derm 1993;28:312-4.).
I urge the panel members to be scrupulous in considering all of the available evidence concerning the issue of chronic Lyme disease, to issue a report which will not be regarded as a whitewash for the IDSA 2006 Lyme Disease Guidelines, that it may acquit itself well in the eyes of history.
Very truly yours,
Kenneth B. Liegner, M.D.
Member, Treatment Panel, N.I.H. State-of-the-Art Conference on Lyme Disease, March 1991, Bethesda, MD.
Co-Chair, Treatment Poster Discussion Section, Fifth International Conference on Lyme Borreliosis, May/June 1992, Arlington, VA.
Participant, N.I.A.I.D. Consultations on Chronic Lyme Disease, February & October, 1994, Rockville, MD.
Member, Program Committee, 7th International Conference on Lyme Borreliosis, San Francisco, CA., Spring 1996.
Presenter to Infectious Diseases Society of America Lyme Disease Review Panel, July 30, 2009, Washington, D.C.
Posted by Relative Risk at 20:49 0 comments Links to this post
Labels: Lyme disease
This is a story that’s just hard to believe. I know LymeLand is a place full of ignorant and foolish people prone to all kinds of quackery (e.g., Rife machines, hyperbaric oxygen, detox programs, Lyme diets, malaria injections, year-long antibiotic treatments) in their endless attempts to rid themselves of a common bacterial infection only they and their quack doctors can detect. Now we can add experimental stem cell therapy to the list of extraordinary treatments for an ordinary infection. Embryonic stem cells are pluripotental cells able to differentiate into a variety of different types of highly specialized cells such as nerve, blood or muscle cells. The great hope of these cells is that they will be able to replace or augment damaged cardiac or nerve cells, and produce important bioactive molecules such as insulin. What they have to do with Lyme borreliosis is anyone’s guess. What human cells in a Lyme patient need to be repaired or replaced? What’s the rationale for even considering such an experiment? I haven’t a clue.Here’s part of the news story about some idiot in California trying to collect enough money to go to India and get injected with who knows what:Searching for a cure: Dos Pueblos graduate pursues stem cell therapy to battle Lyme disease
By WILL McGOUGH -- AUG. 26, 2010
When Greg Compton wakes up in the morning, there is a lot he wants to do. He’d like to put some work in on the house he bought, maybe take a walk down to the beach with his wife. He’d love to have a family.
Diagnosed with Lyme Disease in the spring of 2006, Compton and his wife, Melissa, have spent the last five years doing exhaustive research and attempting countless conventional and alternative therapies to cure his symptoms.
They have tried intravenous and oral antibiotics, Chinese medicine, acupuncture, and even hyperbaric oxygen therapy, a process that uses a pressure chamber to increase the amount of oxygen in the blood. But none has been able to cure Compton, 34, of the symptoms and, in some cases, they made them worse.
[Gee, maybe he has something other than a bacterial infection.]
Now, Compton will turn to a practice of medicine that is not currently legal in the United States, a therapy program centered on the controversial embryonic stem-cell research.
In order to afford the treatment, which costs $40,000, the Comptons are holding a fundraiser tonight to help raise money and awareness of the disease...
[snip]
A month later, seeing no beneficial results from the anti-depressants, Compton discovered via the Internet that his condition seemed to align with many of the symptoms associated with Lyme disease. The doctor did not agree.
[Once again, the Internet helps some ignorant fool to diagnose himself.]
“When I asked (the doctor), he said, ‘Oh no, it would be the 100th thing on the list,’” Compton said.
[But why believe a doctor when the Internet and its nutty denizens tell you otherwise?]
Three months after Valentine’s Day, Compton sought the advice of a Lyme disease specialist in Thousand Oaks. From there, his blood tests were forwarded on to Igenex in Palo Alto, a reference laboratory specializing in state-of-the-art clinical and research testing for Lyme Disease and associated tick-borne diseases, where they diagnosed him with the disease. At first, this news was comforting.
[I just knew Igenex would appear in this story.]
Two and a half years of antibiotics and a PICC line (a form of intravenous access) later, Compton still didn’t feel like himself. He suffered through headaches, dizziness, fatigue and said he felt foggy and as if he had a hangover. With alternative therapies providing nothing more than temporary relief, if anything, the Compton’s were frustrated.
[Again, how about an illness other than Internet-diagnosed Lyme? I think the 30 months of antibiotics would be a big clue that it’s not a bacterial infection.]
Then they discovered Dr. Geeta Shroff and Nu Tech Mediworld, a stem-cell research facility in New Delhi, India. “We have a vision,” Shroff said in a promotional video. “We want (stem-cell) therapy to be made available for everyone around the globe as a first line of therapy.”
Yes, I’m sure Geeta Shroof has a vision (not to mention a promotional video), but it’s likely to be a vision of dollars, Euros, and gold, and a nice waterfront mansion in Gao away from the chaos of downtown New Delhi. Unfortunately, Greg Compton in the above story isn’t the first Lyme patient to seek out Shroof. She appeared last year in another news story, part of which is highlighted below.
The Indian Council of Medical Research (ICMR) allows the use of embryonic stem cells if the condition or disorder is considered incurable. But Dr. Satish Totey, Chief Scientific Officer at Stempeutics, a private stem cell company, and the Secretary of the Stem Cell Research Forum of India (SCRFI) believes there needs to be tighter regulation. "There is nothing in those ICMR guidelines that can actually be called a guideline," he says.
Dr. Shroff started out as an infertility specialist. That, and her practice as a gynecologist, helped fund her early work, which was carried out in her garage.
In what is probably her most controversial move, instead of publishing her findings, Dr. Shroff decided to patent her technology.
Totey says Shroff is taking advantage of her patients’ desperation. "Under the pretext of patents, she says that nothing can be shown," he says. "Why does she not publish a paper?" He believes that by not doing so, she is putting her patients at a risk of getting a teratoma — a type of tumor “that may contain several different types of tissue and sometimes mature elements such as hair, muscle, and bone,” as defined by medterms.net. (Teratomas are a common challenge for embryonic stem cell researchers.)
But Dr. Totey rejects proceeding with treatments before the science has been published and vetted. He points out that no one knows what she is putting into those injections. "If it is intravenous, I can use river water and inject that," he says. Until she shows the scientific community what she is putting in there, he says he'll remain unconvinced.
What’s the Hindu word for ‘quack’?
-
Posted by Relative Risk at 17:30 0 comments Links to this post
Labels: Lyme disease
Controversy Of Treating Lyme Disease Arises In TX
RICHLAND HILLS (CBS 11 / TXA 21) ―
Kerry Reed of Richland Hills loves playing with her three young daughters, but she remembers how difficult it was some days just taking care of them. "I was feeling severely fatigued," she said. "It was hard just to get through the day." She was sick off and on for years, and didn't know what was wrong with her.
In February, an urgent care doctor near her home told her he thought she had Lyme disease, a bacterial infection people get after being bitten by deer ticks. A bulls-eye lesion on the skin is a common symptom.
About 30,000 cases are reported nationwide each year, though experts say the number of cases could be much higher. In Texas, however, the number of reported cases is far lower – only about 100 annually – and experts say that number could be lower because the ticks that spread Lyme disease aren't common here.
[snip]
She believes when got Lyme disease as a teenager, she was never fully cured. Another physician, Dr. Ron Wilson of Denton, prescribed an aggressive treatment of antibiotics for Reed. This treatment helped land Reed in the middle of a controversy that's dividing the medical community and spurred the Texas Legislature to study the issues surrounding the disease.
[snip]
Reed said Wilson prescribed an IV infusion of antibiotics every twelve hours, four days a week for eight straight weeks. Reed keeps leftover medical supplies tucked away inside boxes.
"There is no evidence to support the fact that there is such a thing as chronic Lyme disease," said Dr. Michael Norgard, chair of the Microbiology Department at the University of Texas Southwestern Medical Center in Dallas.
Norgard and other infectious disease doctors nationwide are convinced the disease should be treated with short-term antibiotics, no longer than three weeks. They worry extended use of these drugs could actually ruin a patients health.
Norgard, who specializes in Lyme disease, said doctors who treat the disease with ongoing and aggressive antibiotics are irresponsible. "They're subjecting their patients to false hopes," he said. "They're not really getting to the real [etiology] of the underlying illness."
[snip]
But Reed is forced to find a new doctor: The Texas Medical Board received a complaint about Wilson and investigated his treatment of Lyme disease. The board disciplined the doctor for failing to use "the generally acceptable standard of care…" based on guidelines from the Infectious Diseases Society of America.
The board also concluded that the doctor recommended a patient buy a vitamin supplement that he received a percentage of profits for recommending. The state said Wilson must comply with its standard in treating Lyme disease and take an ethics course.
"I've been forced into a situation that makes it very difficult to do what I love and do what I want to do and to help people," he said. Under his care, Wilson said about 80 percent of his Lyme disease patients improved. He said the state's standard for treating the disease is almost the same as not treating it at all. So, he said he will stop seeing these patients altogether.
[snip]
Both Reed and Wilson want a new state law to allow doctors to use more aggressive treatments. But Norgard said he thinks a new law isn't necessary.
There is an over-diagnosis of Lyme disease, he said, and it has become a catch-all for many illnesses. Norgard said patients who believe they have chronic Lyme disease should consider that they may have another condition and pursue a correct diagnosis.
Now, the Texas Legislature is studying the issue. A committee is expected to release its findings this fall.
______________________________________________________
A not-so-disInterested endorsement from....his not-so-knowledgable daughter:
My father is actually Dr.Ron Wilson in Denton who is an Ob/Gyn and member of the International Lyme and Associated Disease Society. He is "Lyme literate" (as they say in the Lymie community). My dad has retired from his usual practice to treat Lyme full-time. He is passionate about this and treating it properly because his whole family has been infected. I was diagnosed with chronic Lyme almost five years ago. Along with the nasty co-infections like Babesia and Bartonella. These can be just as destructive as the borealis Burgdorferi (Lyme) bacteria.
Posted by Relative Risk at 08:43 0 comments Links to this post
Labels: Lyme disease, Politics
Below is part of an interesting news story out of Australia about a man who supposedly died from Lyme disease. Of course, that’s fairly hard to do in the northern hemisphere; it would be a miracle (ok, a negative miracle) to die of said infection Down Under.
Widow of Lyme disease victim to sue NSW Health
Kate Benson HEALTH
September 3, 2010
A SYDNEY woman will launch a class action against NSW Health after autopsy results showed her husband had been riddled with a disease the Health Department says does not exist in Australia.
Karl McManus, 44, died in July after being bitten by a tick while filming the television show Home and Away in Sydney. The autopsy indicated he had bacteria from Lyme disease in his liver, heart, kidney and lungs.
Samples from his organs, which were tested at the Sydney laboratory Australian Biologics, will be sent to the University of Sydney and to laboratories in the United States for more testing. ''If there is duplication of results, the government cannot dispute [that Lyme exists in Australia],'' his wife, Mualla Akinci, said.
Mr McManus, from Turramurra, was diagnosed with multifocal neuropathy after testing negative at an Australian laboratory for Lyme disease, but tests carried out in the US and Germany returned positive results. NSW Health maintains that the organisms which cause Lyme disease - three species of the genus Borrelia - are not carried here by wildlife, livestock or their parasites.
It says that anyone suffering from the illness must have caught it overseas, but Ms Akinci is adamant Mr McManus was bitten by a Lyme-infested tick in Waratah Park, home of the TV show Skippy, the Bush Kangaroo.
Ms. Akinci sounds more like an American than an Australian, and one has to wonder if she hasn’t been spending a lot of time scrolling through American websites about Lyme disease and chronic Lyme disease activism. It’s impossible to draw any solid conclusions from the newspaper’s reporting. Presumably, there will more information following testing of samples in the U.S. The only question then is where will that testing be done. Maybe the Lyme specialty shop, Igenex? Frankly, that would be ideal. Ms. Akinci would likely get her positive result and then NSW Health could introduce U.S. reports about the reliability of Igenex. Some of the reports are mentioned here, here and here.
Still unanswered—as far as I know—is whether Lyme or some Lyme-like infection might be indigenous to Australia. A 1995 paper in Emerging Infectious Diseases discussed this issue and some of the points from that publication are provided below.
?Lyme Disease in Australia— Still To Be Proven! EID, January-March 1995
The first case of a syndrome consistent with Lyme disease was reported from the Hunter Valley region of New South Wales (NSW) in southeastern Australia in 1982, but there was no confirming serology. More clinical cases, again without serologic confirmation, were reported in 1986, two from the south coast and one from the central coast of NSW. The Queensland State Health Laboratories reported that 186 (14.9%) of 1,247 sera taken from patients between 1986-1989 showed antibody response to Borrelia burgdorferi of >64 by indirect fluorescence antibody test (IFAT), but none of these results were confirmed by immunoblotting.
Over the past 6 years, principally because of local publicity, there has been an increase in serologic testing for Lyme disease in Australia, particularly in southeastern Australia. Testing has often been initiated by patients with undiagnosed health problems. Thus, most Lyme disease patients seen by infectious disease specialists are self selected and are referred for assessment on the basis of tick exposure and reported positive serologic test results for Lyme disease.
There are some major differences between Australia and the Lyme-disease-endemic areas of the Northern Hemisphere with respect to the natural history of borreliosis. No ticks of the I. persulcatus complex, the principal vectors to humans in the northern hemisphere, occur in Australia. In eastern Australia, the logical candidate vector would be I. holocyclus, which has a wide host range and is the most common tick biting humans. I. holocyclus cannot transmit a North American strain of B. burgdorferi but the association with any possible Australian spirochetes remains unresolved.
The diagnosis of Lyme disease outside known disease-endemic areas should not be based solely on serology because unrelated syndromes, such as auto-immune diseases and cross reactions with other bacteria, can produce false-positive results. Likewise, a definitive diagnosis on clinical grounds alone in a non-endemic-disease area is difficult to justify without adequate scientific support based on isolation of the causative agent from the patient or from another patient or known vector from the region. In Australia, disagreement as to what constitutes a positive serologic result has additionally contributed to overdiagnosis of Lyme disease. Until an organism is isolated from a local patient and is characterized, the presence of Lyme disease in Australia will remain controversial.
Finally, there’s a 1998 case report of a positive finding of B. garinii infection in a patient from Sydney, but he acquired the infection in Europe.
Med J Aust. 1998 May 18;168(10):500-2.
Culture-positive Lyme borreliosis.
Hudson BJ, Stewart M, Lennox VA, Fukunaga M, Yabuki M, Macorison H, Kitchener-Smith J.
Microbiology Department, Royal North Shore Hospital, Sydney, NSW.
We report a case of Lyme borreliosis. Culture of skin biopsy was positive for Borrelia garinii, despite repeated prior treatment with antibiotics. The patient had travelled in Europe 17 months before the onset of symptoms, but the clinical details indicate that the organism could have been acquired in Australia. The results of conventional serological and histopathological tests were negative, despite an illness duration of at least two years.
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Posted by Relative Risk at 16:54 0 comments Links to this post
Labels: Lyme disease
Few CT Physicians Treat Chronic Lyme Disease
By Nancy Walsh, Staff Writer, MedPage Today
Reviewed by
September 02, 2010
Only a very small number of physicians in Connecticut -- the epicenter of Lyme disease -- diagnose and treat patients with the controversial chronic form of this tickborne infection, a survey found.
Among 285 primary care physicians surveyed, only about 2% treat chronic Lyme disease and almost 50% don't believe that chronic infection with the spirochete Borrelia burgdorferi exists, Michael Johnson, MD, and Henry M. Feder, Jr., MD, of the University of Connecticut in Farmington, reported online in the Journal of Pediatrics.
Read the rest of the report at Medpage Today.
Posted by Relative Risk at 12:51 0 comments Links to this post
Labels: Lyme disease
This weekend I wandered through the digital garbage dump of disinformation that is LymeNet—the forum web site for people who think all of their emotional, physical and personal problems are the result of a common bacterial infection, which somehow has the power to persist indefinitely, but not be detectable by any scientific methodology, causes every symptom know to modern medicine, yet leave its victims sufficiently well to share their stories of anguish with other online patients suffering equally from bacterial chronicity and government conspiracy.
So, here’s a few gems from the chronic Lyme disease community:
I didn't find out I had Lyme and co until after my children were born. All three of my children now have Lyme disease and probably Bartonella.
My husband does too. My LLMD is confident that my children were born with Lyme.
Persumably, she “found out” from her LLMD, who must either be GP horribly ignorant of infectious diseases or a con artist looking to turn one imaginary Lyme patient into five billable Lyme patients. I assume the LLMD concluded the husband acquired his case from his infected wife because in LymeLand tick-borne borreliosis also is a STI. In the real world, it is not.
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.
Well, I don’t doubt this person has been sick with some problem since 2001, but the five infections listed above are not likely to be his/her problem. Frankly, I’m impressed with this individual’s ability to function with 5 simultaneous infections, one of which—Streptococcal Toxic Shock Syndrome—can be fatal in a few hours. These chronic Lyme patients are the hardiest, healthiest people I’ve ever encountered. They somehow manage to endure years and years of multiple, deadly infections without ever having to get up from their computers or leave the house. I’m fairly certain that if I had erhlichiosis or pneumonia or Q fever, I’d be in a hospital bed in serious condition. Maybe I just have bad genes.
And now for a little online paranoia, which strangely enough, is not one of the symptoms of Lyme disease listed at the bottom of this post. Just for the record people, yes it’s true, there are hundreds of online trollers from the government, the insurance industry, CDC, IDSA, DoD, and Big Pharma looking for any scrap of information about you, your meds, and your quack doctors. Better pull the blinds and change your names.
Also please do not post personal details about your location and do not use your real name. If your name or location or info is too specific change it. It could be used against your LLMD or against YOU if you have children and are dealing with school districts.
Be wary of people who have one or even no posts who PM you.
There are people who are disingenuous and post things that are "off" Please be careful what you share. Please remember many people read this board and all are not looking out for our best interests or our doctors. Please do not put information out there that you would not tell someone who had the ability to hurt your LLMD .... even if that person seems to be asking for your experiences.
Would you tell the lawyers trying to take away your doctor's medical license all your meds and your dosages?
Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol
Wow, I’ve had a number of these symptoms at one time or another. A couple of them persist to this day as a result of injuries and aging. Of course, in LymeLand everything is due to B. burgdorferi so I guess I must have Lyme disease. Anyone know a good LLMD? Or is ‘good LLMD’ an oxymoron? Maybe I’m just experiencing #36. Or maybe I just need a good stiff drink to check for #38.
So ends another tour of LymeLand with a feeling of #34 and #7 though I think the latter means I need a new desk chair.
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Posted by Relative Risk at 17:50 0 comments Links to this post
Labels: Lyme disease
By David Itkin
Portsmouth, NH
Saturday, August 21, 2010
I am an infectious disease physician and have been practicing in the Seacoast area for 20 years. I have seen and treated a large number of patients with Lyme disease. I feel comfortable that the scientific guidelines as published by my professional society, Infectious Diseases Society of America, and very recently revalidated, are medically sound and simply "work" for the overwhelming majority of my patients.
Read the complete column here.
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Posted by Relative Risk at 09:03 0 comments Links to this post
Labels: Lyme disease
Lorraine Johnson, the legal beagle of LymeLand, has posted some blog comments about peer review and censorship after discovering that a new journal has some members of the IDSA on its editorial board. I guess her assumption is that IDSA membership automatically implies some kind of censorship.
The problems of peer review have been endlessly discussed and debated over the decades, and LJ certainly adds nothing to this old discussion. Suffice to say, "Peer review is like democracy,…which is, to use Churchill's phrase, the worst form of government except all those other forms that have been tried from time to time.'"
On the other hand, LJ does seem to know something about censorship, having recently censored comments posted to one of her blog entries. Here’s the link to the discussion about LJ’s censorship practices.
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Posted by Relative Risk at 12:17 0 comments Links to this post
Labels: Lyme disease
From the N.E. Health Advisory
12 AUG
In 1633, Galileo discovered firsthand what happens when science conflicts with belief. He was convicted of heresy against the Catholic Church, in large part because he made an astonishing observation—the earth was not the center of the universe; instead the center of the universe was the sun, and all the planets revolved around it.
I started thinking about Galileo after talking with infectious disease experts about chronic Lyme disease. Despite the scientific and medical evidence to the contrary, there are people who believe they need long-term antibiotics to manage their symptoms even though experts say that this long-term treatment may actually be harmful.
Read all of Marie Rosenthal's column here.
Posted by Relative Risk at 15:48 0 comments Links to this post
Labels: Lyme disease
The Calif. Lyme group’s Lorraine Johnson is again letting her training as a scumbag lawyer get the better of her judgment. Here’s her latest pronouncement, which for some inexplicable reason reminds her of the current IOM study on Lyme disease:
Does history repeat itself? Did you know that the initial CDC definition of AIDS did not include women?
Well, that statement is nonsense. Women within the AIDS activist community pushed to change the case definition, not to include women, but to includediseases specific to women.
“In 1993, the existing case definition for AIDS was expanded to include 1) all HIV-infected persons with a CD4+ T-lymphocyte count of less than 200 cells/µL or a CD4+ T-lymphocyte percentage of total lymphocytes of less than 14 and 2) three additional clinical conditions (pulmonary tuberculosis, recurrent pneumonia, and invasive cervical cancer), in addition to retaining the 23 clinical conditions in the previous AIDS case definition.”
“Cervical cancer was added for the following reasons: cervical dysplasia, a precursor lesion that may progress to invasive cancer, is common in HIV-infected women and associated with HIV-induced immunosuppression; cervical cancer is preventable; and its inclusion emphasizes the importance of gynecologic care for HIV-infected women. Although cervical cancer is an uncommon cause of death among HIV-infected women, it could emerge as a more frequent problem if HIV-infected women increasingly survive earlier infectious complications yet fail to receive adequate gynecologic care. These three diseases are particularly common among populations showing the largest relative increases in cases of AIDS in recent years: women, persons of minority race or ethnicity, and intravenous drug users and their sex partners.”
She concludes, and not a moment too soon: “Well, they worked a long time and finally got women included in the definition. How about all of the chronic Lyme patients that are not included in the surveillance definition now?”
Still lying, but now she’s made a tenuous connection to the undefined condition called “chronic” Lyme disease. As for a case definition for this grab-bag of symptoms and beliefs, well, as Phil Baker recently pointed out in FASEB Journal, that’s up to the activists and their quack doctors.
“…if they wish to gain acceptance from the scientific and medical community for their unproven views:
Develop a precise definition of what is meant by “chronic Lyme disease” so that it can be distinguished unequivocally from other medical conditions with similar symptoms;
Provide direct and unequivocal evidence that a patient suspected of having “chronic Lyme disease” really has a persistent Borrelia burgdoferi infection that justifies antibiotic therapy…”
We await your definition and its objective criteria.
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Posted by Relative Risk at 10:18 0 comments Links to this post
Labels: Lyme disease
Excerpted from:
Efficacy of antibiotic prophylaxis for the prevention of Lyme disease: an updated systematic review and meta-analysis—authors' response.
Stephen Warshafsky, David H. Lee, Robert B. Nadelman and Gary P. Wormser
Professor Volkman's concerns about seronegative late Lyme disease are based at least in part on a 1988 study that he co-authored. The T-lymphocyte proliferation assay that served as the basis for that diagnosis in his study, however, is now recognized to be non-specific for Lyme disease. Experimental and clinical studies to date have not demonstrated that failures of antibiotic prophylaxis for spirochaetal infections lead to a modified presentation of the disease or seronegative persistent infection. In the experimental study on syphilis that Professor Volkman cited, rabbits that received penicillin for incubating infection were ‘either cured or subsequently developed clinically recognizable lesions’. Single subcurative doses of penicillin only prolonged the ‘incubation period of experimental syphilis ... up to a limit of 30–40 days’. After lesions developed, all of the animals become seropositive. Furthermore, single-dose β-lactam therapy for the treatment of incubating syphilis has been widely and successfully prescribed for thousands of patients with gonorrhoea.
Finally, the 2006 Infectious Diseases Society of America (IDSA) Lyme disease treatment guidelines did endorse single-dose doxycycline for prevention of Lyme disease, but only for selected patients if certain conditions were met.
Professor Volkman is correct that 3 of the 14 members of the IDSA guideline panel co-authored the pivotal clinical trial on single-dose doxycycline, but failed to mention that on 22 April 2010 a separate panel of eight individuals, none of whom was a co-investigator on the doxycycline trial or served on the prior guidelines panel, unanimously endorsed this recommendation.
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Posted by Relative Risk at 11:37 0 comments Links to this post
Labels: Lyme disease
The FASEB Journal • Life Sciences Forum July 14, 2010
Chronic Lyme disease: in defense of the scientific enterprise
Phillip J. Baker
American Lyme Disease Foundation, Lyme, Connecticut, USA
[A timely review of the state of the craziness in Lyme disease. Importantly, Baker provides a three-step solution (below) for ending the nutty accusations of activists and the equally nutty practices of their doctors.]
Some Lyme disease activists continue to make the astounding claim that this overwhelming consensus of independent expert opinion is the result of conflicts of interest and/or a vast conspiracy by a cabal to suppress the truth. This is absurd, especially when such claims are made by “Lyme-literate physicians” who profit immensely from the prolonged treatment of chronic Lyme disease. It should be noted that the composition of the IDSA guideline review panel was approved by an independent ethicist, who found no evidence of conflict of interest with respect to any member of the review panel. Instead of casting doubts on the reputation of distinguished scientists and the organizations to which they belong, those who disagree would be well advised to do the following if they wish to gain acceptance from the scientific and medical community for their unproven views:
1) Develop a precise definition of what is meant by “chronic Lyme disease” so that it can be distinguished unequivocally from other medical conditions with similar symptoms.
2) Provide direct and unequivocal evidence that a patient suspected of having chronic Lyme disease really has a persistent B. burgdorferi infection that justifies antibiotic therapy.
3) Demonstrate, from the results of published, peer reviewed, randomized, placebo-controlled trials, that extended antibiotic therapy is beneficial and safe for the treatment of chronic Lyme disease.
[How hard can that be?]
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Posted by Relative Risk at 11:48 0 comments Links to this post
Labels: Lyme disease
Detection of Lyme disease spirochete, Borrelia burgdorferi sensu lato, including three novel genotypes in ticks (Acari: Ixodidae) collected from songbirds (Passeriformes) across Canada.
J Vector Biol. July 2010.
John D. Scott, et al.
Lyme disease is reported across Canada, but pinpointing the source of infection has been problematic. In this three-year, bird-tick-pathogen study (2004–2006), 366 ticks representing 12 species were collected from 151 songbirds (31 passerine species/subspecies) at 16 locations Canada-wide. Of the 167 ticks/pools tested, 19 (11.4%) were infected with Borrelia burgdorferi sensu lato (s.l.). Sequencing of the rrf-rrl intergenic spacer gene revealed four Borrelia genotypes: B. burgdorferi sensu stricto (s.s.) and three novel genotypes (BC genoype 1, BC genotype 2, BC genotype 3). All four genotypes were detected in spirochete-infected Ixodes auritulus (females, nymphs, larvae) suggesting this tick species is a vector for B. burgdorferi s.l. We provide first-time records for: ticks in the Yukon (north of 60° latitude), northernmost collection of Amblyomma americanum in North America, and Amblyomma imitator in Canada. First reports of bird-derived ticks infected with B. burgdorferi s.l. include: live culture of spirochetes from Ixodes pacificus (nymph) plus detection in I. auritulus nymphs, Ixodes scapularis in New Brunswick, and an I. scapularis larva in Canada. We provide the first account of B. burgdorferi s. l. in an Ixodes muris tick collected from a songbird anywhere. Congruent with previous data for the American Robin, we suggest that the Common Yellowthroat, Golden-crowned Sparrow, Song Sparrow, and Swainson's Thrush are reservoir-competent hosts. Song Sparrows, the predominant hosts, were parasitized by I. auritulus harboring all four Borrelia genotypes. Our results show that songbirds import B. burgdorferi s.l.-infected ticks into Canada. Bird-feeding I. scapularis subadults were infected with Lyme spirochetes during both spring and fall migration in eastern Canada. Because songbirds disperse millions of infected ticks across Canada, people and domestic animals contract Lyme disease outside of the known and expected range.
Note: “This study was supported financially by the Lyme Disease Association of Ontario,” and the lead author is associated with this organization. That’s two reasons to think he may have read too much into the study. See the news storybelow.
"In the ticks that we got from the West Coast, we found three new novel strains. This could be why Lyme disease patients are testing negative and they actually have one of these onboard and it's not showing up," said John D. Scott, author of the study published in the June issue of The Journal of Vector Ecology.
Scott is also a research consultant with the Lyme Disease Association of Ontario.
But a co-author of the study disagrees.
Dr. Muhammad Morshed, a clinical professor in the department of pathology and laboratory medicine at the University of B. C, says Scott has reached the wrong conclusion from data he provided. Morshed's lab at UBC examined the tick-borne bacteria and identified the new strains, but says the genetic differences are not enough to throw off the current testing for Lyme disease. The blood tests look for elevated levels of antibodies that build up in reaction to all strains of the bacterium Borrelia burgdorferi, the cause of the disease, he said.
"If you go through this paper you can see that we mention three new genotypes. They are a different strain, but they are not a totally different species. They are the same species with a few mutations, so that will not hamper the diagnosis we are providing," said Morshed, who is also a senior scientist with laboratory services at the BC Centre for Disease Control.
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Posted by Relative Risk at 18:16 0 comments Links to this post
Labels: Lyme disease
Ahh, the poor members of the IOM’s study group for Lyme disease. They’re about to be hit with the results of another survey written by Lyme activist/patients for Lyme activist/patients. Here’s the intro:This survey is sent by the National Capital Lyme and Tick-borne Disease Association to gather information for a new paper, “The Human Dimension of Lyme Disease and Other Tick-Borne Diseases: A Patient’s Perspective.” The paper is for the Institute of Medicine’s scientific workshop entitled, Lyme Disease and Other Tick-Borne Diseases: The State of the Science. The workshop is charged to represent the broad spectrum of scientific views on Lyme disease. It is expected to provide a forum for public participation and input from individuals with Lyme disease, as requested in congressional appropriations report language in House Committee Report 111-120 and Senate Committee Report 111-66. Your participation is greatly valued and needed to add validity to the “Human Dimensions” paper. Earlier, we requested your personal story; now we are asking you to participate in this survey. Your contribution to this database will add depth and validity to the descriptions that will be submitted on the patient experience in obtaining a diagnosis, seeking treatment, obtaining insurance coverage, and living with Lyme disease.There are a lot of problems with attempt to survey patients. First and foremost, personal stories and anecdotes are not evidence. Second, the activist survey is designed in such a way as to elicit predetermined answers from a self-selected group of people who think they have a chronic bacterial infection. The end result is a document intended to reinforce that belief.
So let’s look at a few of the questions responders were supposed to strongly agree or disagree with concerning their “chronic” Lyme disease diagnosis.
I was referred to a psychiatrist
I had a relapse after discontinuing antibiotics
My symptoms returned immediately after discontinuing antibiotics
My "relapse" was triggered by a new tick bite
My "relapse" was triggered by illness
My "relapse" was triggered by surgery
My "relapse" was triggered by stress
It has been difficult to find a doctor who will treat me for "chronic" Lyme Disease
After contracting Lyme Disease, I tried to commit suicide
After contracting Lyme Disease, I felt suicidal
I had to quit my job because of Lyme Disease
My marriage ended in divorce because of Lyme Disease
After contracting Lyme Disease, I had my gall bladder removed
No doubt there are many things physically and emotionally wrong with the poor souls who inhabit these online support groups, but a common, antibiotic-responsive bacterial infection is not one of them. I suppose the take home message from the above questions is that anything will cause Lyme disease to appear or reappear, and that one can never ever stop taking (and paying for) antibiotics.
I’m not sure what this next question is suppose to mean: that they have one of these disease in addition to Lyme disease or that Lyme disease caused an additional illness or they were misdiagnosed with one of these illness. It’s certainly possible to contract Lyme along with babesia or anaplasma, but it’s not clear what the other listed diseases have to do with tick-borne Lyme Borreliosis. Maybe the final activist write-up for the IOM will clarify things. Or not.
Please select ALL that apply. After contracting Lyme Disease, I was diagnosed with:
Babesia Microti
Babesia WA-1
Anaplasmosis
Bartonella
Ehrlichiosis
Mycoplasma Fermentans
Chlamydia Pneumoniae
Autonomic Nervous System Disorder (POTS)
Seizure Disorder
Fibromyalgia
Chron's Disease
Celiac Disease
Kawasaki Disease
Mitochondrial Disorder
Sleep Disorder
Blood Clotting Disorder
Hashimoto's Thyroiditis
ADD/ADHD
Autism
Connective Tissue Disorder
Chronic Fatigue Syndrome
Fibromyalgia
Chron's Disease
Other
Money is always a hot topic with the online Lyme community. Probably because their “Lyme literate” doctors conduct their businesses on a cash basis and because insurance companies don’t like to pay for unnecessary treatments for non-existing conditions. I hate my insurance companies just as much as the next person, but I do understand why they would be reluctant to pay for open-ended antibiotic treatments of an infection that can only be detected by the patient and his or her “Lyme literate” doctor. On the other hand, I don’t know of anyone who actually had a Lyme infection that wasn’t covered by standard medical insurance. One of my kids had a obvious case of disseminated Lyme and BC/BS picked up the tap. I was left with having to pay $8 to the pharmacy for some doxy. End of story. End of Lyme.
My insurance company has denied payment for treatment of Lyme Disease
My treatment was denied because it exceeded "recommended" treatment guidelines
I have appealed my denied claims
My appeals for denied claims have been unsuccessful
I have been denied insurance coverage because of Lyme Disease
I have been charged an additional premium (rated) because of Lyme Disease
The questions below seem to be aimed at women, stay-at-home moms, etc. That’s probably not surprising given that most of the chronic Lyme complainants seem to be white, middle-aged women. And that’s a bit odd—white, middle-aged women being the main victims of a chronic infection that causes myriad symptoms that can only be held in check by an endless supply of antibiotics and the constant care and attention of an understanding “Lyme literate” doctor. Most pathogens are equal opportunity bugs, attacking both sexes with equal abandon.
Please indicate how Lyme Disease has impacted your ability to carry out the tasks below:
No Impact--Slight Impact--Moderate Impact--Severe Impact
Go grocery shopping?
Care for children?
Manage a household budget?
Drive a car?
Prepare meals?
Clean the house?
Garden?
Schedule leisure activities?
Finally, there’s a series of questions about children. Chilling questions, actually, and you have to hope that state and local child services have investigated some of these people who are keeping their kids at home and away from friends and community activities because of an imagined infection. Maybe this survey actually will do some good if a large number of responders strongly agree with the statements below. Perhaps the results—however skewed—could be sent out as an alert to state child welfare agencies. They may not be aware of the “chronic” Lyme phenomenon in their states and the impact that misguided or deluded parents could have on their own children.
My child has "chronic" Lyme Disease
My child has tick borne co-infections
My child frequently misses school (more than once per week)
My child is frequently tardy from school (more than once per week)
My child is unable to attend school
My child is on a "homebound" school program
My child was home schooled after contracting Lyme Disease
My child suffers from depression
My child has attempted suicide
My child has expressed a desire to "not wake up"
My child has been delayed in school as a result of Lyme Disease
My child's grades were lower after contracting Lyme Disease
My child had fewer friends after contracting Lyme Disease
My child no longer participates in sports
-
Posted by Relative Risk at 10:44 0 comments Links to this post
Labels: IOM, Lyme disease
Death Due to Community-Associated Clostridium difficile in a Woman Receiving Prolonged Antibiotic Therapy for Suspected Lyme Disease. CID 2010;51:369-370.
Stacy M. Holzbauer, Melissa M. Kemperman, and Ruth Lynfield, Minnesota Department of Health, Saint Paul, Minnesota
[snip]
In June 2009, the patient sought care for symptoms of fatigue, insomnia, achy joints, memory loss, and confusion. These symptoms had been present for 15 years and had worsened in the past 2 years. She received a diagnosis of a relapse of depression.
In August, on the basis of responses to a “Lyme Disease Questionnaire/Checklist” given at a health care visit, Lyme disease serologic tests were performed in a California laboratory**. Results were indeterminate by immunofluorescence assay and were IgM-positive (2 of 3 bands) but IgG-negative (3 of 10 bands) on Western blot. She was placed on a 5-week course of doxycycline for possible Lyme disease. The patient’s symptoms improved but then worsened after completion of antibiotics.
Both her primary physician and a rheumatologist found no objective evidence of Lyme disease in October.
In November, without further Lyme disease testing, another physician prescribed oral cefuroxime and telithromycin for a planned 2–4 months to treat chronic Lyme disease.
Five weeks after initiating this therapy, the patient developed diarrhea for 3 days and received a diagnosis of C. difficile colitis. An enzyme immunoassay was positive for C. difficile toxin A and B. Because she had no overnight stays in a health care facility in the 12 weeks prior, she was classified as having a community-associated C. difficile infection.
The patient was started on oral metronidazole therapy but was hospitalized 2 days later with severe abdominal pain secondary to diffuse colitis and abdominal ascites. The next morning, she experienced cardiac arrest twice and succumbed to cardiac arrest during an emergency colectomy.
[snip]
This case illustrates the potential severity of community-associated C. difficile infection and the danger of antibiotic treatment for a presumed diagnosis of chronic Lyme disease. In the absence of a positive IgG finding on Western blot, symptoms lasting 11 month are not likely due to Borrelia burgdorferi infection, even if the IgM result is positive. Longstanding nonspecific symptoms unaccompanied by objective evidence of infection do not warrant antibiotic treatment for Lyme disease. Even in patients with histories of appropriate clinical and serological criteria for Lyme disease, multiple randomized placebo-controlled trials have shown no durable benefit to long-term antibiotic therapy for persistent nonspecific symptoms. Severe adverse effects, such as death, catheter-related blood stream infections, pulmonary embolism, septic thrombo- phlebitis, and gastrointestinal bleeding, have previously been reported in patients treated with antibiotics for Lyme disease.
This death due to fulminant C. difficile colitis serves as yet another example of the severe adverse outcomes that can result from inappropriate antibiotic therapy for presumptive Lyme disease.
**Could that be Igenex?
Posted by Relative Risk at 13:41 0 comments Links to this post
Labels: Lyme disease
Earlier this week, the FDA ordered a recall of some antibiotics that had been manufactured by Claris Lifesciences.
The recall notice later popped up on various Lyme disease discussion groups and I was curious as to why such a recall would be of interest to Lyme patient/activists.
One of the recalled antibiotics was metronidazole (trade name Flagyl).
Flagyl is an antimicrobial agent used to treat infections caused by various anaerobes (e.g., B. fragilis, C. perfringens), G.I. infections caused by H. pylori and C. difficile, and some parasitic infections such as amebic dysentery or giardiasis. It is specifically NOT recommended for treating Lyme disease because of a “lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient….”
So why the interest in Flagyl among the Lymees? Quackery and incompetence, of course. That is, quackery and incompetence among the so-called “Lyme Literate” docs who prey on—I mean treat—these unfortunate people.
Here are a couple of quotes from two self-described Lyme experts found online:
Metronidazole (Flagyl) is a very effective antimicrobial for treating chronic Lyme disease. It distributes well throughout the body and is able to penetrate tissue and cells. This ability allows metronidazole to reach the cryptic borrelia throughout the body and kill it. Metronidazole is also effective at attacking the cyst form of borrelia. This may be the single most effective antimicrobial pharmaceutical for treating Lyme disease. The disadvantage of metronidazole is it’s toxicity to the liver and neurological system. It can raise liver enzymes and cause peripheral neuropathies similar to LD itself. These side-effects must be prudently monitored.
Why do you need Flagyl or Tindamax? The conventional wisdom is that treatment needs to address all three forms of the bacteria. After all, the spirochete morphs into L-forms and cyst forms; if these different morphologies are not targeted the disease cannot be "cured." Otherwise, the bacteria cannot be eradicated. The cysts after all, become be a reservoir of disease waiting for the right conditions, to become active spirochetes. The science, the bacteriology, the immunology tells us something different. The body cannot be sterilized of Lyme or Bb bacteria. The intracellular niche is too protected. The immune response to intracellular bacteria is not far reaching enough. Despite clinical remission, Bb will forever persist within our cells and tissues. Many patients who are in a clinically remission relapse significantly when "cyts busting" drugs are added. The immune system becomes activated; inflammatory cytokines are produced and the symptoms return. The patient "Herxes" all over again. Frequently cognitive dysfunction worsens, joint pain and fatigue return as well as other symptoms. And to what end?
Indeed. To what end? The above statements are clinical and scientific gibberish, and reading them I was again left wondering whether these Lyme Literate quacks actually believe what they’re saying or just conning their gullible and ignorant patients with a lot of techno-babble? I’d actually have some respect for them if it was the latter case since I think it’s often easier to understand deliberate crimes and cons than it is to understand delusions or incompetence.
Patients with imaginary infections being treated by quacks and crooks using inappropriate drugs and methods of treatment. What a world is Lymeland.
Posted by Relative Risk at 12:12 0 comments Links to this post
Labels: Lyme disease
Docs Oppose SB 1199 On Lyme Disease
By CHUCK MORAN, For The Bulletin
On Tuesday, June 22, 2010, Daniel B. Kimball, MD, testified on behalf of the Pennsylvania Medical Society in front of the Pennsylvania Senate Banking and Insurance Committee on SB 1199, a bill that could be harmful to those with Lyme disease.
All of his testimony can be found here. What I do want to highlight about his statement before the Penn Senate is this:
“Please consider the following two excerpts from an article entitled ‘Inaccurate Information About Lyme Disease on the Internet,’ published in The Pediatric Infectious Disease Journal, Volume 23, Number 12, December 2004:
‘Persistent B. burgdorferi infection in patients with chronic Lyme encephalitis has not been demonstrated. Chronic subjective problems such as fatigue, headache, irritability, poor concentration, poor memory, arthralgias or myalgias do not indicate chronic Lyme disease. Some of these subjective symptoms may occur after Lyme disease and may be termed ‘post-Lyme syndrome.’ These symptoms may be unrelated to Lyme disease and have not been shown to respond to antibiotic treatment.
‘The Infectious Diseases Society of America practice guidelines do not include treatment options for chronic Lyme disease because persistent infection has not been demonstrated. Combinations of antibiotics, prolonged courses of antibiotics or unusually high antibiotic doses should not be used to treat Lyme disease, because they may be harmful and have not been shown to be more effective than standard therapy.’
[snip]
“So, up front, if we want to do what’s best for the patient, we better be sure that we prescribe the correct treatment that is evidenced-based. Until then, this bill holds great potential of putting patients at risk.
Posted by Relative Risk at 19:40 0 comments Links to this post
Labels: Lyme disease, Politics