2009 Lyme Articles- 7
May. 25, 2009
From Kansas City. "Who’s left to pay this big verdict?"
Two Kansas City couples who were falsely diagnosed with Lyme disease have won verdicts totaling $30 million against the Florida lab that tested their blood.
Jackson County Circuit Judge Michael Manners handed down the verdicts last week against Bowen Research and Training Institute Inc. of Tarpon Springs, Fla., and in favor of Keith and Sheri Klausner and David and Brenda Lampton.
Manners, who tried the case without a jury, heard evidence from the plaintiffs only. Bowen did not send anyone to the trial.
It’s not clear whether Bowen still exists. Its old Web site has been supplanted by one for Central Florida Research Inc., which lists some of the same principals. The phone number for Central Florida, however, is disconnected or no longer in service.
Bowen was founded by JoAnne Whitaker, who held herself out as “an internationally recognized research and teaching physician.” Whitaker, formerly Bowen’s president and director of research, voluntarily relinquished Bowen’s license to operate as a clinical laboratory in 2002. After the Florida Department of Health found that Bowen had continued to do clinical testing of patients, Whitaker voluntarily relinquished her Florida medical license in 2007.
The Klausners’ saga began in November 2004, when, after experiencing severe joint pain, Keith Klausner went to Health Centers of America-Kansas City, which diagnosed him with Lyme disease. HCAKC recommended the Bowen Q-RIBb test and, in return for a $250 “donation” for the test, sent his blood to Bowen. The lab reported that it had identified the organism that causes the disease in his blood.
Klausner underwent months of treatment, including intravenous antibiotics “and numerous medications and ‘alternative’ substances,” according to the Klausners’ lawsuit.
HCKAC told his wife that she, too, probably had Lyme disease because the disease was transmissible through tears, mucus, blood or sexual contact. Sheri Klausner’s blood was sent to Bowen, where it, too, tested positive.
In June 2005, Keith Klausner was admitted to Providence Medical Center’s emergency department. The treating physicians told him he did not have Lyme disease and had undergone months of unnecessary therapy.
The Lamptons’ experience was similar. Before going to HCKAC in November 2003, Brenda Lampton had been diagnosed with fibromyalgia. After HCKAC diagnosed her with Lyme disease, her blood, after payment of the $250 “donation,” was sent to Bowen, which confirmed the diagnosis.
Lampton then underwent months of intravenous treatment, which worsened her condition. Eventually she was admitted to the hospital, where she had her gallbladder removed and developed a pulmonary embolism, according to the Lamptons’ suit. Her husband, meanwhile, underwent unnecessary oral antibiotic therapy after Bowen said his blood had tested positive for Lyme disease.
In his verdicts, Manners awarded Keith Klausner $9.7 million in medical, non-economic and punitive damages; Sheri Klausner nearly $6 million; Brenda Lampton $8.6 million; and David Lampton $6 million. After various statutory caps, the total comes to nearly $24 million — still one of the biggest judgments on record this year in Missouri.
HCAKC, while originally a defendant in the suits, was later dismissed.
Whether the Klausners and Lamptons will be able to collect the judgments is an open question.
“That’s what we’re busy with now,” said Lance Baughman, of Wright Green & Baughman in Lee’s Summit, and an attorney for the Klausners and Lamptons.
The only surprise here is that the suit against HCAKC was dismissed. Without their wacky diagnosis none of this would have happened in the first place. Carol Ann Ryser, the medical director, doesn't seem to know much about infectious diseases in general or Lyme borreliosis in particular, but she has posted a fair amount of Lyme activist propaganda on her website, including Blumenthal's attempted slap suit against the IDSA and the Lyme disease docudrama by One Eye Pictures.
-
Posted by Relative Risk at 20:15 0 comments Links to this post
Labels: Lyme disease, Quackery
May 21, 2009
"Lyme Article Was Riddled with Inaccuracies--Putting Patients at Risk."
by Anne Gershon, President, IDSA
-
Posted by Relative Risk at 11:00 0 comments Links to this post
Labels: Lyme disease, Politics
This is part of some online flack about yet another center specializing in Lyme disease.
The Haverford Wellness Center, one of the nation's leaders in diagnosing and treating Lyme disease, has launched a new website devoted to providing the most up-to-date information on the accurate diagnosis and treatment and cure of this highly debated disease.
Havertown, PA (PRWEB) May 20, 2009
Located in Pennsylvania, the Haverford Wellness Center has become known throughout the northeastern United States for its scientific methods of detecting the difficult disease and effective ways of curing Lyme disease.
[Wow. They can diagnose and treat a bacterial infection. How amazing.]
What separates Haverford from other medical facilities is their techniques to diagnose Lyme disease. Without a reliable method for a negative test, Haverford does a series of tests until they are satisfied they can verify with a high percentage of accuracy whether someone does or does not have Lyme disease.
[Wow again. They can prove a negative.]
And the results are nothing short of remarkable. The treatment records prove that 88 percent of their Lyme disease patients are cured within 56 days.
[Love to see how they generated those numbers.]
The Haverford Wellness Center is considered one of the nation's leaders at diagnosing, treating and curing Lyme disease.
[By whom? I never heard of it until two days ago.]
Led by Medical Director Dr. Domenick Braccia and Lyme Disease Scientific & Medical Advisor Dr. Anthony Lionetti, the Haverford Wellness Center has become synonymous with being at the forefront of Lyme disease diagnosis and cures.
[Well, let's hope Braccia has better luck with partner Lionetti than he did with Patricia Kane. Or, maybe not.]
Posted by Relative Risk at 08:03 0 comments Links to this post
Labels: Lyme disease, Quackery
Check out the University of Rhode Island's Tick Encounter Center for information aboutprotecting your pets from ticks.
-
Posted by Relative Risk at 16:41 0 comments Links to this post
Labels: Lyme disease
Well, that’s the nice thing about word processing, one angry letter to the editor can become 10 angry letters to various editors, and one piece of propaganda can become a virtual blizzard of deceit.I’m referring to yet another letter from the writing team of Stricker and Johnson. It’s entitled, “The Infectious Diseases Society of America Lyme Guidelines: Poster Child for Guidelines Reform,” and is published in a regional physician’s journal called the Southern Medical Journal.This ongoing propaganda effort by Stricker, et al. has already been reviewed here, here,here, and here.
I’ll only suggest that the pace of relentless and repetitive preaching by these two pamphleteers suggests a degree of desperation within the activist Lyme community. Back in 2006, activists and their co-conspirator Richard Blumenthal gambled that they could overturn documented science and clinical medicine by threatening to sue the IDSA for publishing a routine update of their practice guidelines for Lyme disease.
I understand why they tried. The Republicans were routinely rewriting scientific findings and suppressing dissent within the scientific community. Why not try the same trick. Unfortunately, Blumenthal isn’t the President or even a lowly Republican Congressman with his hands on the federal purse.
So now the guidelines—still in effect—are going to be re-reviewed. In public. No behind closed doors legal threats or arm-twisting. A new review panel is in place. The panel lacks any Lyme quacks or activists so the activists are angry, alarmed, and probably depressed. Over the last three years nothing new in medicine or science has emerged that would suggest the IDSA guidelines need to be modified.
Thus, the sound and fury. Or at least fury. Too bad the activists can’t pump their message into the mainstream media. There’s nothing in Science or Nature. Nothing in the NYT. Oprah’s not calling back.
So the question is, what do they write about after the IDSA re-review and how often do they write it?
-
Posted by Relative Risk at 16:13 0 comments Links to this post
Labels: Blumenthal, Lyme disease, Politics
I finally got around to reading“Treatment of Lyme disease: a medicolegal assessment,” by the dynamic duo, Lorraine Johnson, JD and Ralph Stricker, MD. The assessment was published in 2004, and five years later they’re still dribbling out the same argumentative mis- and dis-information. But they get points for staying on message.I’m not going to review the entire paper: it’s 24 pages long and we’ve heard it all before. But just for fun—and because it’s important to call out dishonest people—let’s pick through some of the nonsense, starting at the back of this tedious justification for practicing bad medicine and bad law.First, there are an impressive number of references (221). But many of them are worthless, being from well-known quacks, non-peer-reviewed presentations and abstracts, public testimony, and the websites of Lyme activist organizations. Hardly reliable, objective sources of data. Which is why we can ignore the stated claim of 21 “documented deaths associated with Lyme disease.” (Curious use of “associated.” Why not just say “caused,” “from,” or “due to”? Anyway, it’s pretty hard to die just from Lyme disease, and there are no references in this paper to the handful of cases of Lyme disease in AIDS patients or the successful treatment of those patients.)
Three sentences into this long-winded argument, they’re insisting Lyme disease is a polymicrobial infection, a notion Stricker first tried out in the pages of ASM News (nowMicrobe), and which has since evolved into ubiquitous “co-infections.” Whatever you call it—mixed, co- or polymicrobial infections—it remains the exception not the rule in Lyme disease.
Further down in that same paragraph, they suggest tick-borne Lyme disease might be communicable and a STI. Five years later, this effort to turn a vector-borne infection in a dead-end host into a contagious infection or STI is going strong because quack doctors can then justify treating whole families for Lyme disease. I believe at one point, the Lyme specialty lab, Igenex, was offering a family or group discount for Lyme testing.
Next up, the problem with current diagnostics. They write, “Recent studies…came to the conclusion that the currently available ELISA tests do not have adequate sensitivity to meet the two-tiered approach recommended by the CDC….” Sounds reasonable, but then you have to check the reference paper to discover “recent” actually began in 1991 and led to a 1992-1994 study of lab proficiency testing in Wisconsin, which was finally published in 1997. In 1994, the CDC, NIH, and numerous academic scientists and lab directors—aware of testing problems—met in Dearborn, Michigan to revise recommendations about Lyme disease diagnostic criteria (MMWR, 1995;44:590-1).
They continue beating the dead horse of bad diagnostics and finally write, “The current state of diagnostic testing cannot demonstrate the eradication of B. burgdorferi.” No kidding. No test does or can….for any infection. So having insisted no tests can detect the presence or absence of the bug, they insist treating physicians become economists and “assume an infection.” That’s fine…sometimes. It’s called treating empirically, but at some point you run into the problem of having to define treatment endpoints. And in the absence of an original infection treatment apparently becomes open-ended….at least until the patient’s money runs out.
Next Stricker and Johnson bring up the old claim that Lyme is an intracellular infection, and “intracellular pathogens are notoriously difficult to treat and cure.” Apparently both the MD and the JD need a refresher in basic microbiology and pharmacology, and I happily refer them to Paul Tulken’s online presentation of intracellular pathogens and antibiotics.
“No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection…” Right. For 30 years, thousands of people each summer have contracted a common bacterial infection that cannot be treated. Do they actually believe this crap?! And, of course, it begs the question of why then would these Lyme quacks bother to pump their patients full of antibiotics for weeks or months on end. Oh, right. The money.
“Physicians who advocate longer-term antibiotic treatment use an empirical approach based on the clinical evidence of active infection to determine treatment duration. Evidence of ongoing infection is determined by examining all clinical data, including persistence of symptoms, serologic testing…MRI scans, SPECT imaging, neurocognitive testing….” Suddenly serology has some value? None of this stuff is actually going to tell you about the presence or absence of an infection, especially infection by one particular pathogen. These things might say something about pathology but not about etiology.
Then there’s this: “There are no reliable microbiologic or immunologic criteria to document active infection in Lyme disease.” Which is followed by this: “The persistence of B. burgdorferi despite presumptively adequate antibiotic treatment has been repeatedly demonstrated by post-treatment isolations of the bacteria.” Well, which is it: you can determine infection by isolation or you can’t? Ignoring the issue of re-infection in this nonsense, let’s look at the cited reference about post-treatment isolation of bacteria. It’s Orv. Hetil. 2002;143(21):1195-8. The article is actually about in vitro antibiotic sensitivity, not chronic infection, and states, “…treatment failures may be interpreted by serum and tissue levels of the antibiotic [being] too low for an effective killing…. However, prolonged treatment regimens applying higher dosages of antibiotics…may be linked to aggravated side effects.” I guess they don’t read all of the papers they cite.
Still trying to justify the open-ended use and cost of antibiotics, they cite other examples of infections that require long-term antibiotics. These include TB, leprosy, endocarditis, leptospirosis and syphilis. First, there is always evidence of an actual infectious agent in these cases. Second, treatment typically consists of one or two drugs given orally. TB, for example is treated with 6-9 months of oral antibiotics.
Even a chronic, insidious infection like leprosy will typically require three oral meds for 6-12 months. Whereas many Lyme quacks have put their victims on powerful i.v. antibiotics for weeks or months at a time. Lyme is not leprosy.
Yet, “Fallon notes that for over 3400 patients screened for the Columbia persistent Lyme disease study, the mean duration of intravenous treatment was 2.3 months and the mean duration of oral antibiotic therapy was 7.5 months.”
Lyme is not leprosy. The tragedy (or crime) here is that of the cited 3400 Lyme patients, so few actually had any evidence of current or past Lyme disease the study was endanger of termination for lack of patients with objective evidence of Lyme disease. Thirty-seven people were eventually enrolled and the study was forced to conclude:
“Treatment resulted in no sustained benefit. The authors concluded: ‘10 weeks of IV ceftriaxone followed by 14 weeks of no antibiotic is not an effective strategy.’ More than one quarter of antibiotic-treated patients had significant adverse effects necessitating treatment termination.” (Neurology. 2008 Mar 25;70(13):986-7)
“ILADS is an interdisciplinary group of physicians….” Yes, many of whom have been disciplined by state medical boards, banned from receiving federal funds, lack training or board certification in infectious diseases, have been indicted and jailed for fraud and other crimes, conduct cash-only practices, have ties to i.v. drug and nutritional supplement companies, and troll for patients at Lyme activist meetings.
“ILADS….guidelines are evidence-based and peer-reviewed.” Well, they were posted on the AHRQ website and published in Expert Review of Anti-Infective Therapy. But theAHRQ disclaimer says they can’t vouch for anything on their website, and the publisher explicitly states : “In this instance the guidelines represent a consensus document produced by a working group consisting of members of the International Lyme and Associated Disease Society (ILADS). As such, the document was not subject to our standard review procedures as applied to individual articles and the guidelines reflect thecollective opinion of the ILADS working group, as set out in the introduction.”
No, the guidelines are not peer-reviewed. Nor are they based on solid clinical and experimental medicine. The ILADS quacks deny the results of four expensive human clinical trials, and instead point to some mouse-based laboratory studies and anecdotes, which are euphemistically referred to as “clinical judgments.”
Having defined and defended their guidelines, the authors go on to disparage guidelines and the people who write them.
“Recent reviews of practice guidelines have shown that most fail to meet quality standards, and that guidelines produced by specialist societies are generally of poor quality.” “Between 72 and 90% of physicians writing clinical practice guidelines have undisclosed conflicts of interest.”
Well, in the latter case, ILADS certainly fits the bill. (“…the committee that created the ILADS guidelines included the president of a company that manufactures an alternative Lyme disease diagnostic test and multiple physicians whose practices are listed with a CLD advocacy group’s patient referral service—but ILADS did not disclose the conflicts in its guideline document.” JAMA, February 11, 2009—301;6:665-7.)
And if they were thinking of the IDSA’s 2000 guidelines for Lyme disease in the former, then they missed the mark again. The authors of the cited study on guidelines didn’t look at the IDSA guidelines—or any infectious disease guidelines for that matter. They wrote,“we decided to concentrate on specific scientific societies and we excluded the myriad of small groups that were captured by the [Medline] search.”
So I guess we can conclude that the ILADS guidelines for Lyme disease are not evidence-based, not peer-reviewed, do not meet quality standards, and are plagued by conflicts of interest.
Now it’s 2009 and Stricker, Johnson and their equally obsessive colleagues are staying on message, oblivious to new data and new studies, and to the everyday reality that Lyme disease is a common bacterial infection that is non-communicable, non-fatal, antibiotic responsive, and geographically and seasonally limited.
-
Posted by Relative Risk at 22:27 0 comments Links to this post
Labels: diagnostics, ILADS, Lyme disease, Stricker
Well, it looks like the LDF has risen from the dead—or at least from Karen Forschner’s basement—to urge Lymees everywhere to act.Act how? Well, according to a recently released letter from the LDF, there is a “Once-in-a-Lifetime Opportunity to Expose & Fix the Government's Corruption in its Tick-borne Disease Policy & Programs!”Once in a lifetime? It must be the lifetime of a tick because this kind of call-to-arms used to be a constant feature of the LDF. There were annual photo-op rallies on Capital Hill, a faked award ceremony at NIH (“It's just a stupid Lucite plaque.''), failed attempts at national legislation (The Lyme and Infectious Disease Information and Fairness in Treatment (LIFT) Act), and the famous LDF-inspired GAO investigation of federal Lyme disease programs accusing federal scientists and officials of “physician harassment,” “retaliation,” “conflicts of interest,” “controlled science” and “CDC indifference.” (The GAO found nothing.)So here’s the LDF’s new call to action: “We can now get at the source of what many feel is the corruption involving science and Lyme disease. Your actions are immediately required in order to inform the President and his new Cabinet the serious conflicts and scientific misstatements that exist as a result of actions by various government agencies and grantees. Both agencies listed below are within the Executive Office of the President (independent of NIH, CDC, or FDA) and are developing new policy based on public input.”
Unfortunately, and perhaps not surprisingly, Forschner seems to have missed the point of the new Administration’s call for restoring transparency in government and scientific integrity in federal science agencies.
After eight years of Bush secrecy, and political hacks like George Deutsch, Bill Steiger andJulie MacDonald interfering with scientific research and conclusions for political, economic, and religious reasons, change was needed. And change has come. The new Administration has been quick to clean house and repopulate agencies and offices with credible scientists and public health professionals.
What helped to inspire such rapid and sweeping change regarding federal science was the extensive documenting and reporting by the Union of Concerned Scientists (UCS) of the corruption of federal science by Bush political hacks.
Ten months ago, the UCS received a letter and supporting documents from scientists, physicians and public health officials detailing attempts by Lyme disease activists and others to harass and intimidate those who disagreed with them about the nature of Lyme disease and the direction of ongoing research.
The letter reiterated the efforts of Ct. A.G. Richard Blumenthal and activists to overturn evidence-based clinical advice by threat of litigation; the efforts of activists and congressional allies to force the CDC into a de facto endorsement of alternative treatment guidelines by providing a link from the CDC website to those guidelines; the efforts of activists and congressional allies to call into question CDC’s other Web content related to Lyme disease and the peer-review procedures that validate the information on the website; and efforts to introduce Lyme disease treatment and research legislation (H.R. 741) in support of activists’ beliefs and economically motivated doctors.
So, yes, I think the new Administration, the new congressional committee chairs, the new OSTP staff, science advisors such as former NIH Director Harold Varmus and incoming FDA Administrator Peggy Hamburg are very aware of the “serious conflicts and scientific misstatements” characteristic of Lyme activists and their quack physicians.
But thanks for writing. Look forward to hearing from you again next year.
-
Posted by Relative Risk at 12:18 0 comments Links to this post
Labels: Lyme disease, Politics
I just love these things: fact sheets from Lyme disease activists. You can be sure there will be few facts, no references, and plenty of lies and distortions. The fact sheet I’m referring to is from the LymeNet forum and was apparently cobbled together by one Lucy Barnes, otherwise known on the Internet as Tincup.
I’m not going to go over this pile of manure line by line and lie by lie, but I will highlight a few of the more absurd points made by this online agitator.
MARYLAND LYME DISEASE FACT SHEET 2009
The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite. It is called the “great imitator,” because it can mimic lupus, arthritis, MS, fibromyalgia, dementia, ALS, chronic fatigue, Parkinson’s, Alzheimer’s and even autism.
No. It takes a day or two of feeding for the bacteria to pass from the tick gut to the tick salivary glands and into the host. The infection in humans has a well-defined number of symptoms and presentations. It does not mimic a host of other non-infectious diseases—unless you’re a quack—thought the occasional Lyme patient wannabe has been found to have MS or some other serious illness, and not Lyme disease.
Animal studies indicate in less than a week the Lyme spirochete (Borrelia burgdorferi) can be deeply embedded inside tendons, muscles, tissues, the heart and the brain. As the spirochetes invade tissues they replicate, then destroy their host cell as they emerge. The cell wall can collapse around the bacterium, forming a cloaking device, allowing it to evade detection by many tests and by the body’s own immune system.
Might be true if you’re a white-footed mouse—the natural reservoir of B. burgdorferi. But B. burgdorferi is not an intracellular pathogen. It does not wear host cells like a cape or a cloak. We’re talking about biochemistry here, not Zorro.
On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed, with some having debilitating symptoms for ten or more years before they received a proper diagnosis.
Interesting stats. Where’s the reference?
More than 50% developed serious brain or central nervous system involvement…. When treated with less than six weeks of antibiotics, up to 40% of patients with Lyme disease continue to have symptoms or relapsed after receiving what was considered to be “adequate” therapy.
No, in North America, only about 10-15% of Lyme cases present with neurological symptoms. In Europe it’s about 20%. No again. Most patient symptoms resolve with a standard course of treatment. Maybe 10% will have lingering symptoms—usual a large joint arthritis and fatigue.
The spirochetes that cause Lyme disease (related to syphilis) have been detected in breast milk, umbilical cords, the uterus, semen, urine, blood, the cervix, tears, the brain, and other body fluids and tissues.
First, Borrelia is not related to Treponema pallidum, the agent of syphilis. They just share a general morphology. Sort of like a VW Bug and a Porsche. They’re both cars, but you won’t say they came off the same assembly line. I think syphilis was mentioned here to given the impress that Lyme is transmitted person-to-person. It’s not. It’s a vector-borne disease, not a STI.
Second, the bacteria or their DNA have occasionally been detected in some of these fluids. But most of what is passed off as evidence of B. burgdorferi in microscopy and silver-staining of tissues and fluids are commensal spirochetes—a part of the normal human flora.
According to a recent study from Johns Hopkins, Lyme tests miss 75% of the people who are infected with Borrelia burgdorferi (Lyme disease). Additional medical literature indicates up to 90% of patients are missed.
Again. References? Names of investigators? So who would use a test that fails 75% of the time? Answer: no one. But Lymees love to make up numbers about the alleged insensitivity of Lyme diagnostics, forgetting apparently, that the low numbers apply only to the acute phase of the infection. Even the very reliable home pregnancy tests are going to give consistently false reading until weeks into a pregnancy.
So let me quote some numbers (and a reference): “Serologic testing for Lyme disease is insensitive during the first several weeks of infection in patients with the initial skin lesion erythema migrans, but the frequency of seropositivity is low during this period only. In our study, 29% of patients with erythema migrans had acute-phase samples with positive IgM or IgG antibody responses to B. burgdorferi, and 64% had convalescent-phase samples with positive responses 3–4 weeks later. After that time, the sensitivity of 2-tier testing (ELISA and Western blot) for patients with disseminated or persistent Lyme disease was 100%, and the specificity was 99%. Others have reported similar results, and similar results were found with a newer serologic test, the VlsE C6 peptide ELISA."CID 2008:47:1113 (15 October).
Maryland patients spend approximately $3,000,000.00 per year on inaccurate Lyme tests.
Wow. Marylanders must be the dumbest people in the U.S. Are they all using Igenex, the expensive, Lyme specialty company in California?
An astounding 81% of the ticks from the Maryland were infected with Lyme. There are a higher number of infected ticks in Maryland than at any other site in the United States….
Again, no references. Tick infection rates vary from state to state, and place to place within a state. They also vary with the sex and stage of the tick. When Swanson and Norris (Johns Hopkins Bloomberg School of Public Health) looked at this in late 2007 they found that “Borrelia burgdorferi was detected in 14.7% of [tick] nymphs.”
Over 300 strains of Lyme (Bb) have been identified to date and the list continues to grow. Tests currently on the market are only designed to detect exposure to one of the Borrelia (Lyme) strains found in humans. In addition, over 20 strains of Babesiosis (a tick borne co-infection) are unable to be detected in humans using standard blood tests.
The tests detect antibody to a species, namely B. burgdorferi. That there may be “strains” of the “species” B. burgdorferi (most of them laboratory strains) is not relevant to diagnosis since the tests are looking for antibody to common antigens (though it sometimes may be relevant to patients given possible differences in pathogenesis and disease presentation). As for babesia, they all look the same in a blood smear.
A newly discovered Borrelia (Lyme-like) organism, STARI (Southern Tick Associated Rash Illness), found in ticks cannot be detected by the current Lyme disease tests.
True. Fortunately, it is geographically limited to the SE and South Central states, is transmitted by a different tick species, and it can be distinguished from classic Lyme disease. Diagnosis is based on clinical signs [isn’t this what Lymees are always insisting on, a clinical diagnosis for Lyme?] and geography.
Clin Vaccine Immunol. 2006 Oct;13(10):1170-1.
Southern tick-associated rash illness (STARI), also known as Masters disease, affects people predominantly in the Southeast and South Central United States. These patients exhibit skin lesions that resemble erythema migrans (EM), the characteristic skin lesion in early Lyme disease. The etiology of STARI remains unknown, and no serologic test is available to aid in its diagnosis. The C6 test is negative in patients with STARI, providing further evidence that B. burgdorferi is not the etiologic agent of this disease.
Cystic forms of Lyme (also called spheroplasts, L-forms, or starvation forms) and their ability to reconvert into normal spirochetes have been demonstrated in Borrelia burgdorferi.
Yes, in the test tube. In 2000, Dave Nelson did some very nice work showing “that motile Borrelia burgdorferi cells transform into non-motile cyst-forms when incubated for several weeks in BSKII (a complex medium) lacking rabbit serum. When B. burgdorferi cells were serum-starved in defined RPMI medium, 90% of the cells formed spherical cysts within 48 h. Cyst formation was inhibited by tetracycline. Cyst opening and recovery of vegetative cells was rapidly induced by the addition of either BSKII or rabbit serum. The percentage of viable cells recovered from cysts ranged from 2.9% to 52.5%. Viability was inversely proportional to cyst age.”
Does this have anything to do with clinical Lyme disease? No.
Once reaching the chronic stage, Lyme disease is more expensive, time consuming and more difficult to treat or cure.
Isn’t this true of any infection that’s allowed to persist? Think of gangrene, rabies, TB, pneumonia, gonorrhea, leprosy, Q fever, etc.
The average diagnosis and treatment costs and lost wages related to chronic Lyme disease are $61,688.00 per year, per patient. Lyme disease currently costs society about $2 billion per year.
Really? According to an earlier claim on this document, there are “more than a quarter of a million (250,000) new cases of Lyme disease in the USA each year.” Well, at an average cost of $61,688 that works out to be $15,422,000,000. Lyme must be the most expensive infection on Earth.
A preponderance of the evidence indicates that active ongoing spirochetal infection is the cause of the persistent symptoms found in chronic Lyme disease patients.
No, there’s not a scrap of evidence for that. Microbiology is a pretty sophisticated science these days. It can find prions and viroids, point mutations and altered methylation patterns, toxins and genes for toxins. It just can’t seem to find Borrelia burgdorferi as an infectious agent responsible for the lingering symptoms of an earlier Lyme infection. Lymees keep confusing physical damage from infection with the persistence of that infection. Deal with the damage and move on.
Tincup mentioned on LymeNet that she’s "always lost with numbers" and "I ALWAYS need help with numbers." So obviously we shouldn’t take her numbers and statistics too seriously.
So what’s the point of producing fact sheets like the above? Lymees don’t need them; they already believe all of this nonsense. Experts and the rational public are going to dismiss it out of hand. So who’s the audience for this pathetic propaganda? I’m guesings small town newspapers and local television stations, which lack the resources to fact-check information and are constantly in need of content for their readers and viewers. As an example, a small TV station in Maryland just picked up one of Tincup’s fake facts: “81 percent of the ticks tested on the East Coast were positive for Lyme Disease.”
That’s the audience and that’s the plan. Spread lies and fear locally until it grows nationally.
As the vaccine expert Paul Offit recently pointed out about false medical information, “It’s not hard to scare people, but it’s extremely difficult to unscare them.”
-
Posted by Relative Risk at 14:12 0 comments Links to this post
Labels: Lyme disease, Politics
Excellent question.
PalMD provides a thoughtful answer over at The White Coat Underground.
I recently had a pleasant, brief email exchange with Kris Newby, the producer of the latest medical advocacy pic, Under Our Skin. There's been a number of similar movies lately, mostly about quacky cancer therapies. This one is apparently much better made, and follows the controversy regarding "chronic" Lyme disease.
I'd heard an interview about the movie on Diane Rehm, and was rather unnerved by it. It sounded like a typical I-drank-the-Kool-Aid-now-I'm-gonna-make-a-movie kind of thing. Still, I haven't written about it, because I haven't seen the movie. That's going to change. Kris is being kind enough to send me a copy, despite my warning that I'm very likely to pan it.
Well, if PalMD doesn't like UOS, I've got a creepy little DVD given to me by a colleague called, "The Children of Dr. Jones." It seems to have been made in 1999 when Jones--one of the hero Lyme docs protrayed in the above mentioned Lyme film--was only 70-years-old. Today at 80, Jones is still treating kids with one hand while fending of the state medical board with the other. I'd love to know what some others think of his bedside manner and his diagnostic skills.
-
Posted by Relative Risk at 14:26 0 comments Links to this post
Labels: Film, Lyme disease
I guess it’s not the end of Under Our Skin, the propaganda film from the Lyme disease activist community. The letter below just came out asking for….wait for it…money. Yes, money. The one thing Lyme patients and Lyme Literate Docs love more than antibiotics or third-party payments: money. Hey, even propagandists have to eat.
Dear Friends,
As you may know, it has been quite a busy and eventful year for UNDER OUR SKIN, with accolades from audiences and press worldwide. We've received four "Best Documentary" awards, an "Audience Favorite" award, and top honors from medical and film organizations. We've also been successful in getting the film screened at no charge in over 500 communities nationwide. And with national spots on network TV and radio, our film has brought unprecedented attention to the issue of Lyme disease. But we have more work to do.
Yes, I’ll bet it wow’ed them at the Franklin Public Library and the Okanagan International Film Festival, and it must have been a shoe-in for that Chris Award in Columbus, Ohio. (Who’s Chris?) I’m guessing the adoring medical organizations mentioned above must have been ILADS—the self-help group of Lyme quacks, some of who starred in the film.
But apparently there’s still more to do. More work? I thought the film was done. Or was this just phase one of some larger scheme…or conspiracy?
We are now gearing up for the next phase--the Uncover the Epidemic national outreach campaign, which we're launching in conjunction with our theatrical and educational DVD release this summer.
Tell me that doesn’t sound like propaganda. Or a public service commercial underwritten by Mobil Oil and Philip Morris. “Uncover the Epidemic.” Curious phrase. Historically, most epidemics tend to uncover themselves. In fact, they tend to bludgeon us, demanding attention. Note the current swine flu “epidemic.”
In addition to getting the film before mainstream audiences, we'll be partnering with national organizations interested in issues such as environmental awareness, affordable healthcare and insurance reform. We will also be working to get the film into classrooms, medical schools and libraries, so that the truth about Lyme disease (and the system that has kept it hidden) can no longer be ignored.
Why are people always trying to get their personal beliefs and products into classrooms? Kids have enough trouble with the three RRR’s; they don’t need the distraction of everyone else’s personal theories, beliefs, opinions, and conspiracies. But I guess you have to get ‘em when they’re young so schools are everyone’s favorite target for thought control and misinformation.
Unfortunately, we don't have Hollywood studios backing our efforts, so we are financing this work ourselves. Revenue from DVDs sold to date is all going back into outreach and distribution. But it is not enough. We need to raise $100,000 in the next two and half months to continue our vital outreach work, including our awareness tour, advertising, PR and promotional materials.
Never before has the Lyme community had a media tool like UNDER OUR SKIN. It is imperative we don't pass up this opportunity to create lasting mainstream awareness and change. [my emphasis]
[snip]
Producer/Director
UNDER OUR SKIN
Open Eye Pictures
So, according to Mr. Wilson’s above comments, his movie was never intended to be a factual documentary. [Maybe he should return any awards he collected in the documentary category.] It was intended to persuade, to promote, and to change. It’s propaganda.
Change what, I wonder? Hopefully, he’s not talking about science and medicine. They’re changing all the time; and not with any help from him and his merry band of cultist activists, deluded patients, and quack doctors.
I think the change he’s plotting is the same change the activists have been working on for years. That is, to replace evidence-based medicine with anecdote and subjectivity; to ignore years of independent, peer-reviewed research and millions of dollars spent on clinical trials in order to supplant it all with personal belief.
And what is that personal belief? It is that Lyme disease is a “chronic” or persistent infection that can only be detected by “Lyme Literate” doctors and one or two magic diagnostic labs, and which can only be held in check by a constant supply of expensive antibiotics paid for by increasing the costs of everyone else’s medical insurance.
It’s the infectious disease equivalent of Creationism. Belief over evidence. Dogma over science. It’s change we can all do without.
-
Posted by Relative Risk at 20:52 0 comments Links to this post
Labels: Film, Lyme disease, Politics
I found this posted online recently. It’s some more Internet gibberish about a toxin produced by Borrelia burgdorferi.
1. What is Bb's toxin? Answer: The toxin from Bb belongs to a family of toxic proteins known as "zinc endoproteinases" or metalloproteases, and includes the toxin from the organism causing tetanus as well as those from many other well-known infectious diseases.
2. What does it do? Answer: The action of botulinum (as well as the toxin from the Lyme spirochete) is to *prevent*, through its action as a proteolytic enzyme, *the release of the neurotransmitter acetylcholine*. and...the Lethal factor (LF) is a zinc endoprotease *cleaving* the mitogen-activated protein kinase kinases (MAPKK) family causing different cell perturbations and possibly macrophages to release cytokines….
Yes, I know, borrelia doesn’t produce toxins, and the matrix metalloproteinases referred to above are actually produced by the host. Still, this bit of easy-to-confirm reality is usually ignored in LymeLand. I’m not sure why, but then the denizens of LymeLand have rewritten much of microbiology, immunology, and pharmacology to suit their peculiar political and psychological needs, so why not rewrite some biochemistry too.
Anyway, I assumed this was the work of a complete idiot who had momentary access to his mom’s computer until I followed a HTML link back to the original source of this intellectual wreckage.
From the Townsend Letter for Doctors & Patients, February/March 2006
Biochemsitry of Lyme Disease: Borrelia burgdorferi spirochete/cyst
by Prof. Robert W. Bradford and Henry W. Allen
It’s some kind of alternative medicine newsletter. Big surprise. The lead author is Robert Bradford. I don’t know how he acquired the title “professor” or where he might have picked up a D.Sc., but he does have a microscope and a little business he calls theBradford Research Institute. (I’m guessing it’s in his basement.) I’ve no idea who Henry Allen is; Mr. Bradford’s lawyer, perhaps? In any case, their article on the biochemistry of Lyme reads as if the two of them collected a bunch of high school science papers, ran them through a meat grind and then randomly pasted various words and sentences back together. It’s all just techno-babble gibberish. It’s wrong. In fact, it’s so far from wrong they’d both have to complete a four-year college curriculum just to be close to being wrong.
Why would someone spend time writing gibberish? Well, maybe because they’re morons, or because they’re con artists without much knowledge of science and medicine. Or maybe like right-wing authors and commentators, they know their audience won’t know the difference or won’t care as long as what they read re-enforces a particular belief. Or maybe they just want to sell stuff to foolish people.
-
Posted by Relative Risk at 08:39 0 comments Links to this post
Labels: Lyme disease, Quackery
Finally, the CME course on Lyme disease is up and running.
According to the IDSA, the “interactive course consists of a series of case studies…designed to educate clinicians regarding the proper diagnosis and treatment of Lyme disease and also provide an opportunity to better understand the IDSA guideline.”
“The cases included in this course were written by expert faculty members, some of whom authored the guideline. Each case is accredited for .25 CME credits. To receive CME credit, the learner must complete at least 4 of the 6 cases, score 70% correct or higher on the post-test, and complete the evaluation. A letter of completion is also available for non-physicians.”
-
Posted by Relative Risk at 16:09 0 comments Links to this post
Labels: IDSA, Lyme disease
I have mentioned the availability of a couple of very informative videos about Lyme disease and the prevention of tick-borne infections.
I don’t want to start a film review blog here, but I should, as a matter of public health and public education, mention a horrible little piece of poisonous propaganda called, Under Our Skin. It’s supposed to be a documentary about Lyme disease. Viewers won’t learn anything useful about the infection, but they will probably come away with a sense of having been punched in the face with a fistful of disinformation designed to confuse and infuriate. (Actually, this piece of disease porn reminds me of the 1980’s efforts of the KGB’s Department A (Dezinformatsiya) to blame the U.S. for the emerging AIDS epidemic. Stories were written about alleged U.S. experiments and then planted in Third-World newspapers by leftist reporters. The planted stories were picked up by other news organizations and quickly traveled around the world. It was a clever and effective propaganda campaign. Good thing the Internet wasn’t around in those days.)
I think I’ve seen most of the film in short clips and trailers posted on various websites. (I can only take it small doses anyway.) Copies of it circulate among Lyme disease activists and it seems to be playing in every church basement and library meeting room where such activists are able to gather. The film focuses on a number of people who are clearly ill; so much so that it’s hard to believe they only have Lyme disease. They are the “victims.” Also featured in the film are various private practice physicians—known as “Lyme Literate MDs” for their alleged knowledge of the infection, and their lack of formal training in infectious diseases or clinical research. They are the heroes.
And what’s a good tale without a villain or two? The villains are academic physicians, public health officials and insurance companies: a supposed cabal working to deny the existence of “chronic” Lyme disease and a national epidemic of Lyme disease.
(A quick note: most researchers and public health people I know tend to exaggerate the numbers, impact, costs, dangers, etc. of any disease they’re interested in. The bigger and badder the disease, the more money they can get for research. It’s rule #1 of any public health campaign or grant proposal. So I’ve never been able to figure out why Lyme activists think there’s a campaign to play down Lyme disease. From the point of view of professional self-interest, it doesn’t make any sense.)
The film has been around long enough that an occasional review has been published. In 2008, for example, Julian Upton, writing in Lancet Infectious Diseases, used words like “partisan,” “manipulative,” and “conspiracy” to describe it. Someone who knows something about making documentaries told me the film seemed to have been made “not to educate but to create and induce fear, panic and distrust.” If so, it succeeded. But I guess that’s the point of good propaganda.
Andy Wilson is the director and was inspired to make this film after his sister contracted Lyme disease. A few years ago, he responded to some criticism in an email: …we very much want to tell the truth about the Lyme disease controversy, and are looking for people…who have a breadth of experience and expertise to contribute to the dialogue.
…the so-called LLMDs have been much more eager to speak to us and, perhaps, this is the reason our research appears biased. Frankly, we've often heard from the "Lyme establishment" that if the opposing camp is equally represented, they do not want to participate. So you must understand our predicament: We are forced to represent one perspective over another.
“Tell the truth about the Lyme disease controversy.” Curious phrasing. I could understand wanting to tell about the Lyme disease controversy, but inserting the word “truth” suggests that something is wrong, something is hidden. Maybe there’s a conspiracy. It’s always tricky to go looking for “truth” because the quest often turns into a crusade. Moreover, how do you know the truth when you find it unless you already think you know what it is?
As for the LLMDs being eager to appear in the film, I’m sure that’s true. It’s free PR for them and an opportunity to attract more patients. It’s a chance to clean up an image that has been regularly tarnished by federal granting agencies, state and federal prosecutors, medical licensing boards, and malpractice lawyers. Who would want to share the limelight with such people? It would only boost their credibility….or reduce one’s own.
“We are forced to represent one perspective over another,” claims the director. So whoever shows up, that becomes the chosen perspective? That becomes the “truth”? Again, I don’t know anything about film and documentaries, but that attitude isn’t likely to produce anything more honest or useful than a heavy-handed commercial. Aren’t there any disinterested experts or science writers to interview? Any infectious disease researchers who don’t see patients, but who might have insights into the epidemiology and pathogenesis of Lyme disease? Apparently, not.
Wilson wrote in an email, We are not interested in agitprop journalism. (Agitprop, by the way, is from the Russian, Agitatsiónno-propagandístskiĭ otdél, or Agitation Propaganda Section of the Central Committee.) Yet Wilson and his producer Kris Newby (herself a self-described “Lyme victim”) certainly sound like they’re out to agitate and propagandize.
A few years ago, a reporter I know wrote, …that documentary filmmaker andy wilson (under our skin, the lyme=aids movie) wants to do a segment on the [news] story, and has one of his producers investigating me by calling colleagues of mine to see if i have "ties to the health insurance industry". it's sort of sad but also creepy.
Similarly, a researcher at Johns Hopkins wrote to a colleague about the same producer, noting, Open Eye Productions contacted Hopkins about your stated affiliation with Hopkins. Another Newby query asked of a reporter, Just out of curiosity, did you get your original source material for your Lyme article from ____? If you did, you really should talk to me.
Newby also wrote in an email, I'm a science writer who's been doing the investigative work for an upcoming Lyme disease documentary…. I have a lot of dirt on the IDSA guidelines authors, if you're interested. I'd love to include it all in our film….” “…I'll give you the 30 minute overview of the greed, politics, etc, with Lyme. I've been working on this for 2 years, and I'd hate for all that research to go to waste.
It’s clear from the film clips that it did not go to waste.
If the creators of Under Our Skin were interested in dirt, greed and politics they need not have looked any farther than a mirror or the company they keep.
Dirt, greed and politics can be found among the advocacy groups and LLMDs who supported this film and advertise its merits on their websites. It can be found among the LLMDs who sit on Lyme advisory boards and troll for patients at advocacy meetings. It can be found among the LLMDs who pump their patients full of i.v. antibiotics and supplements, but are mum about their ties to intravenous infusion and nutritional supplement companies. It can be found among the Lyme advocates and LLMDs who direct confused patients to one or two diagnostic labs specializing in Lyme tests. It can be found among the owners of specialty Lyme labs who sit on Lyme advocacy boards and regularly attend Lyme gatherings to hawk their products. It can be found among the activists who set up defense funds and organize rallies to protect LLMDs from licensing boards, malpractice attorneys and injured patients. It can be found among the activists who write death threats and make anonymous calls to the directors and deans of their imagined enemies. It can be found among the cash-only, bootstrapping LLMDs who justify their clinical practices by citing the clinical guidelines they wrote, and then justifying the guidelines by citing the anecdotal practices that inspired the guidelines.
Sometimes I think this sci-fi movie was commissioned by the activists and their LLMDs as yet another vehicle for making money and spreading hysteria about a common bacterial infection.
As an example, here are a couple of online posts from film’s producer, Kris Newby: Can we please ask you [the activists] to post again asking Dr. Oz and Oprah to do a show on UNDER OUR SKIN, the documentary that exposes the truth about Lyme disease?? And again, Letters to both local and national PBS office would definitely help get UNDER OUR SKIN on the air, so go for it.
Yeah, maybe they can sell a few more DVDs.
Under Our Skin is such an assault on evidence-based medicine it should be classified as a snuff film. Rational and the well-informed viewers are not likely to be deceived by this blatant propaganda piece, but I was surprised to find a number of online Lyme patients who didn’t think much of it either.
One regular poster to a Lyme disease forum wrote, I came away with the impression that Shapiro and Wormser [two infectious disease specialists] were really just used to make, setup, the opposing point. The IDSA starring as the bad guys. Looking at the trailer...there is a statement that Shapiro makes about the "bottom line" that appears to be out-of-context in the film...making it appear as though he is saying something else, entirely.
Another online regular wrote a detailed critique of the pseudo-documentary.
Unfortunately, Under Our Skin falls terribly short in executing its goal in informing the public fully….
The producers’ choices in the doctors they follow does not help the “Lyme-literate” cause. While the inclusion of the Jemsek and Jones hearings was a necessary move, the choice to include Dr. Klinghardt, who openly advertises the use of hormones and bee venom to treat Lyme disease as a top physician in the field is, in my humble opinion, a questionable choice. It is also unfortunate that the filmmakers choose to approach the Jemsek and Jones trials in such a way as to overshadow the numerous mis-diagnoses made by Jemsek, for example. The actual reason why Jemsek had his license suspended in North Carolina is all but ignored, the producers instead focusing on political implications. Similarly, the focus of Jones’ trial is not that he treated patients he had never met, let alone examined, as well as other charges listed on the official order, only that he has helped thousands of patients and therefore deserves some type of immunity for his actions….
I feel that Mandy’s story [a woman portrayed in the film] only ends up making Lyme patients appear to be the malingerers and hysterics that far too many doctors already are too quick to brand us, and I fear that, as genuinely sick as Mandy may have been, the footage of her only renders illegitimate all that could have been redeeming aspects to the film.
On the other hand, Charles Ray Jones, a well-known LLMD in Connecticut and one of the stars of the film, claimed in a letter to his defense fund donors, Validation of my practice has been supported by Andy Wilson in his highly acclaimed documentary film, “Under Our Skin".... Right. Some guy with a video camera thinks you’re Albert Schweitzer while a committee of your physician peers thinks you need to be watched at all times.
I guess it’s true, you can’t convince the committed. Or as someone so elegantly put it, “believers simply look for more excuses, even resorting to a ‘your science is inadequate to test my magic’ argument.”
So there we are with the Lyme controversy. Fact vs. film. Science vs. magic. And if the politicians get any more involved, magic is likely to win….in the short-term….just ask the Pope.
-
Posted by Relative Risk at 17:36 1 comments Links to this post
Labels: Film, Jones, Lyme disease
In addition to providing useful and interesting information about various tick-borne diseases, the University of Rhode Island’s Tick Encounter Center also provides a number of “How-to” videos and animations designed to teach people how to avoid contracting Lyme disease and other tick-borne infections in the first place.
The videos are available online here. They include the following titles:
How-to... Remove a tick safely
How-to... Apply 'Clothing Only' tick repellent
How-to... 'Clothing Only' tick repellent works
How-to... Control Ticks In Your Yard
The online videos are part of the Center’s outreach efforts and expand on the themes of infection and prevention, which were highlighted in an earlier documentary, “Hidden in the Leaves.”
-
Posted by Relative Risk at 09:30 0 comments Links to this post
Labels: Film, Lyme disease
Columbia University’s embarrassing little center for the desperate search for any evidence that would justify the long-term consumption of expensive antibiotics to control an imaginary infection seems to be running on a shoestring budget. How many bake sales does it take fund some of the projects listed below? Evidently, these projects have to be supported by biased advocates because they cannot survive peer-review and attract funds from the CDC or NIH.
Current Studies
“Blood Screening of patients with Lyme disease”.
Funding: to be determined
“Proteomic Studies of CSF of patients with neurologic Lyme disease”
Funding: Lyme Disease Association, Inc and Time for Lyme, Inc.
“IV Ceftriaxone for Patients with Refractory Psychosis”
Funding: NARSAD** and Lyme Disease Association, Inc.
“Brain SPECT Imaging in Chronic Lyme Disease”
Funding: Lyme Disease Association, Inc, and National Research Fund for
Lyme and Tick-Borne Diseases.
Recent Studies
“Laboratory Testing in Chronic Lyme Disease”
Funding: Time for Lyme, Inc.
** NARSAD, which “supports scientific research to find better treatments and ultimately prevent severe mental illnesses,” is the only funding source listed here that makes sense, is objective, and has a degree of credibility. In this context, the organization is interested in the ability of the non-antibiotic properties of ceftriaxone to reduce psychosis. That’s a worthwhile goal and one advocated by others outside the Lyme advocacy movement.
Brian A. Fallon, M.D., M.P.H.,...aims to study if the antibiotic ceftriaxone may reduce psychosis in hospitalized schizophrenia patients. Research has shown ceftriaxone may have a unique neuroprotective effect by decreasing extracellular glutamate in the nervous system and by increasing glutamate transporter proteins. Glutamate is a major excitatory neurotransmitter which when dysregulated can cause problems with memory, attention, movement, sensation and perception. Although overactivity of the dopamine neurotransmitter system is believed to play a role in psychosis, other neurotransmitters, such as glutamate, may also be involved because not all patients respond to antipsychotic drugs that lower dopamine activity. Also, drugs that block the glutamate receptor NMDA cause symptoms of psychosis in healthy people, presumably by increased synaptic glutamate producing excitatory neurotoxicity. Agents that reduce excess glutamate activity are neuroprotective. Dr. Fallon has shown that ceftriaxone can improve cognition in patients with persistent cognitive deficits after Lyme disease.
-
Posted by Relative Risk at 08:52 0 comments Links to this post
Labels: LDA, Lyme disease
Vol. 37, 2009Editor(s): Lipsker, D. and Jaulhac, B.Lyme Borreliosis: Biological and Clinical AspectsA comprehensive and up-to-date review by leading experts in the fieldPhysicians and biologists from different backgrounds have contributed to this volume which provides a unique state-of-the-art approach to all aspects of Lyme borreliosis. From the biology of the transmitting tick to the most up-to-date serologic testing methods, all aspects are discussed.
Some of the covered topics include:
Abstracts for the above titles are available from PubMed.
-
Posted by Relative Risk at 16:06 0 comments Links to this post
Labels: Lyme disease
April 16, 2009
Viral Genetics Pursues Promising New Therapy for Lyme Disease With Grant from Time for Lyme, Inc.
SAN MARINO, Calif.--(BUSINESS WIRE)--Biotechnology company Viral Genetics (Other OTC:VRAL) is pursuing a promising new therapy for Lyme Disease with a $116,000 grant from Time for Lyme, Inc. "This grant is the second we have received in a month for our work in Lyme disease,” said Haig Keledjian, CEO of Viral Genetics. “Obviously we could not be happier that the research is moving forward very rapidly and showing great promise.”
It’s a curious story. Why would a group of Lyme disease (LD) activists who believe LD is a chronic infection give money to a company interested in autoimmune diseases? Have the activists changed their religion? Or maybe they just don’t understand what Viral Genetics does? (I’m guessing the latter.)
The Viral Genetics staff are not shy about calling Lyme an autoimmune disease.
Viral Genetics scientist Dr. Karen Newell’s discovery of a potential mechanism of Targeted Peptide Therapy in AIDS unveiled promise in a host of other autoimmune diseases, including Lyme Disease.
Viral Genetics announced the early results of its Lyme Disease research…. demonstrating that its Peptide Therapy reduced the number of cells responding to the bacteria that causes Lyme Disease—Borrelia burgdorferi.
Viral Genetics’ scientists have shown that the targeted peptides significantly reduce the number, and activation state, of cells responding to Borrelia proteins.
We will use the funding to research the possibilities of using targeted peptides as novel therapies to dampen the long term inflammation characteristic of Chronic Lyme disease.
I’m guessing Diane Blanchard, co-chair of Time for Lyme, didn’t intend to be ironical when she said, “Great strides are possible when researchers think outside of the four corners of a given hypothesis.” After all, researchers have been saying for years that the symptoms of “chronic” LD were likely the result of autoimmune responses and chronic inflammation. It’s the activists who are stuck in an iron box of hopeless ideology and quackery.
-
Posted by Relative Risk at 22:34 0 comments Links to this post
Labels: Lyme disease
04/14/2009
By: Eric Kahnert and Joshua Panas, KOB.com
The feds are investigating a New Mexico man, accusing him of ripping off patients while promising to cure them of Lyme disease.
The Food and Drug Administration says Carl Haese, the owner of a Las Cruces health clinic, has been charging patients $5,000 a piece for Lyme disease treatments.
They say the so-called doctor was using an intravenous cocktail that contains prescriptions that are not approved by the FDA to treat Lyme disease.
One patient even told investigators that he began to urinate blood after the treatments.
"The allegation is these people received treatments from someone who is not a licensed practitioner, and they had failures in treatment and had some side effects," said Bill Harvey of the NM Board of Pharmacy.
According to a federal search warrant, FDA investigators think Haese was ripping off patients, telling them he has cured all of the 3,000 people he's treated for Lyme disease.
The state says Haese is not a licensed health care practitioner.
The feds say Haese never reported Lyme disease cases to the state, even though doctors are supposed to do so.
Posted by Relative Risk at 11:34 0 comments Links to this post
Labels: Lyme disease
Some recent, not to mention cogent, comments about persistent, online distortions about Lyme disease from the White Coat Underground, and a careful look at Lyme Quackery atNeurologica blog. Here’s a sample from Neurologica:
But the Lyme phenomenon, like syphilis before it, has taken on a life of its own, propelled by patients in search of a diagnosis and by misguided or unscrupulous clinicians. There are many people walking around today with the label of Lyme disease who do not have, and never had, any signs or symptoms specific for infection or of Lyme, who have a negative antibody titer, and who have not responded typically to antibiotics. Then how can anyone say they have Lyme? Good question.
[snip]
The story of Lyme, however, has been made more complex by the modern quack innovation of the fake diagnostic test to support the fake diagnosis. For example, there are labs that will run their own Lyme serological tests that show Lyme where none exists. Their tests have not been validated, or they use low thresholds for positivity that are guaranteed to cause false positives.
Then there’s a nice blast of common sense fired directly at Blumenthal, Connecticut’s media-addicted A.G. and Lyme patient wannabe over at Denialism Blog.
We need more common sense, reality-based commentary about infectious diseases on the Internet, which right now seems very much like a medium designed specifically for rumors, myths, lies, conspiracy theories, and the rants of the mentally ill.
Posted by Relative Risk at 22:27 0 comments Links to this post
Labels: Blumenthal, Lyme disease
I’ve been reading through last fall’s transcripts from the medical board’s investigation ofCharles Jones, Connecticut Lyme Doc to the foolish, the gullible, and the desperate. It’s hard to understand why this elderly man is still in active practice and why people would bring their children to him. Reading through the proceedings, I’m left with the impression of a man who doesn’t seem to know much about medicine in general or infectious diseases in particular. At times, Jones seems baffled by the investigation and the examiners’ questions. He gives the impression of having a hearing problem and of being confused—sometimes about his own notes and professional background. Sometimes I feel sorry for the old man that emerges from the pages of this inquiry. One of his most frequent answers to a question is, “I’m sorry?” He says that 33 times through 276 pages of testimony.
STATE OF CONNECTICUT
DEPARTMENT OF PUBLIC HEALTH
PETITION NOS. 2006-0111-001-010
RE: CHARLES JONES, M.D.
2006-0411-001-069
2006-0407-001-068
SEPTEMBER 12, 2008
CONNECTICUT MEDICAL EXAMINING BOARD
BEFORE: RICHARD BRIDBURG, M.D., CHAIRPERSON
ANNE C. DOREMUS, PUBLIC MEMBER
EDWARD OSSWALT, PUBLIC MEMBER
FOR THE BOARD: TANYA DeMATTIA, ASSISTANT ATTORNEY GENERAL
Here he is introducing himself and outlining his professional background.
My name is Charles R. Jones, M.D. I’m a physician not in Hamden but in New Haven as the Statement of Charges reflect me as being in Hamden. I’m in New Haven. I practice pediatric adolescent medicine, but they -- most of the children I see and adolescents I see having Lyme as well as other tick-borne diseases.
Q Dr. Jones, can you hear me satisfactorily? Doc, can you hear me satisfactorily?
A I’m sorry?
Q Can you hear me?
A Yes.
Q Good. Can you tell the Panel something about your educational background, please?
A Yes, I was -- graduated from New York Medical College in 2000 -- in 2000 -- in 1962. I was resident -- well, first of all, I served as intern in pediatrics at St. Luke’s Hospital in New York City for one year and then residency in pediatrics and adolescent medicine at St. Luke’s and at Memorial Sloane Kettering. The --
Q Any further training, sir, fellowships or anything of that sort?
A Fellowships, yeah, as a rheumatoid arthritis fellow when I was a medical student which enabled me to do -- do basic science research as well as clinical research while I was in -- while I was a medical student, excuse me, while I was a medical student and at the same time while I was an intern and resident at St. Luke’s Hospital. And I was also -- while I was a medical student at New York Medical College, I was an Assistant in the Department of Biochemistry all through the time I was a medical student and did research and some teaching. That was essential because my wife and I weren’t totally independent and I had to have as much income -- we had to have as much income as possible. And she taught and I went to medical school and did research as well as taught.
Q When did you enter clinical practice, doctor?
A I’m sorry?
Q When did you enter clinical practice?
A If I remember -- 1965.
Q And where?
A In New York City, 111, not 111 in --
CHAIRPERSON BRIDBURG: Excuse me. I’m a little confused. Didn’t he say --
A -- in Madison -- just off Madison Avenue. That’s off -- that’s on the east side.
MR. POLLACK: One second, I’m sorry.
CHAIRPERSON BRIDBURG: I thought he said he graduated 1962, is that right?
MR. POLLACK: Correct.
Q But when did you enter clinical practice, do you --
A I haven’t figured that one out. I would have -- ’66 or ’67.
Q And what was your practice initially?
A The practice initially was -- consisted of pediatric adolescent medicine and pediatric oncology.
Q And how long did you practice in those areas?
A In -- until 1969 we moved from New York City to Hamden, Connecticut to -- it was very difficult practicing in New York City. We started having a family. It was difficult raising children in New York City so we decided to move to New Haven, Connecticut, the New Haven area. It was in Hamden. And have a regular pediatric practice and not do cancer and leukemia any longer.
Q When did you begin to focus on tick-born[e], diagnosing and treating tick-born diseases and Lyme disease doctor?
A To focus on?
Q Yes.
A Not just begin seeing it? Begin seeing it?
Q Begin and then focus.
A Okay. Shortly after arriving in New Haven or in Hamden, I started, I’d say in the late sixties and early seventies, started seeing children come into the practice who had -- they were coming in clusters. They had a juvenile rheumatoid arthritis-like picture.
And juvenile rheumatoid arthritis is not supposed to cluster and these children came in in clusters, three or four in the same community, also some from the same family. Some of them -- I wasn’t the only one seeing this. I mean other people in the area were too.
This was at the beginning of the Lyme awareness, where some of the children came in with strep infections and they were put on antibiotics and got better pretty rapidly. And we started treating all the people with the juvenile rheumatoid arthritis-like picture with antibiotics.
snip
Q Going back to the question I asked a moment ago, can you tell the Panel of just the one or two, perhaps, distinctions or awards or honors you’ve received in connection with your pediatric Lyme practice, Dr. Jones?
A Well, one was an award given through a group in California. We’ve got a new group in California but it’s a Lyme organization that publishes Lyme Time. And that was concerned with my being the outstanding physician in Lyme disease and especially -- with reference to pediatric and adolescent medicine in 2000.
I’ve received many awards over the years in the form of plaques denoting outstanding achievement in treating children with Lyme disease from various organizations.
Q Doctor, any connection with Columbia University Medical School?
A Well, that’s a different issue. Not a different issue, it’s one -- it’s a related issue. At Columbia University in the medical school, there’s a -- there’s a fellowship in my name, the Charles Ray Jones Endowment -- endowed fellowship that enables students who completed the first year of medical school -- medical school schooling, to be able to apply for a fellowship in my name. It’s in my name, Charles Ray Jones Endowed Fellowship involving with learning more about the treating of tick-born disease -- diseases.
Q And what’s the nature of that fellowship, please?
A The fellowship enables the recipients to be able to go to offices of physicians who practice and treat Lyme and tick-born diseases or to be with basic science researchers at Columbia or elsewhere to learn more about tick-born diseases. It’s a -- it’s a -- it’s sort of thrilling to have the students come in who are fresh and are not -- who just completed their first year of medical -- medical school and who are interested very much in learning more about clinical medicine. They’ll come in and stay for a week or a month or two months and do a program of -- of awareness. And when they are -- and the people who come to my office, I’ve had about eight or nine -- eight or nine over the years, the people who come to my office have -- I’ve enabled them to participate in the -- in the questioning and also the evaluation of the children who have Lyme disease. It’s a hands-on experience.
A lot of the people who do it have decided that they want to go into a field of medicine that -- that treats infectious diseases, and not just Lyme, but infectious diseases.
Q So these students actually come from the medical school to your office, is that so?
A Yes.
Q And does the medical school send them to you and select them?
A There -- there’s a rather rigorous selection process that Dr. Brian Fallon is involved in where students can apply and then go through a rather -- rather horrendous application and interview situation. But then they are selected or rejected. I don’t know how many are rejected, but a good many are. I think they select two to four a year now. It used to be one. The endowment -- I don’t know what the endowed monies consist of now, but.
Q One last question, when was that fellowship program inaugurated, doctor, if you can recall?
A Maybe -- maybe ’98.
Except as a bad example or a “what not to do,” what could this guy possibly teach new medical students?! I’d love to know what these med students thought of their experiences with Jones. Someone should track them down and find out.
Posted by Relative Risk at 17:16 0 comments Links to this post
Labels: ILADS, Jones, Lyme disease