I am astounded, Kathleen, absolutely astounded at the depth of the work you
have done. I have to digest this, but in the meantime, could you tell me what a
UBR is? The
R perhaps for researcher? Thanks
Kathleen wrote:
> I am sending this around again in case
> you all want to use it or part of it. It was
> sent out to NY politicians, state senators in the
> Tri-State area, Pataki, Spitzer and all those
> people this Summer. It was also sent to the press.
> Now, you see this lastest JAMA atrticle
> was an exact rebuttal to the premise of
> this petition:
> We say we want funding for a cure.
> They say, there is nothing to cure.
> So, why have a vaccine?
> Why be funded for research and development of
> test kits and vaccines? I think if no one
> gets very ill or it is rare, then why do we need
> billions spent on this research?
> Shapiro, Steere, the ALDF are so Stucking Fupid.
> This JAMA article is really gonna backfire on them.
> Subject:
> e-Petition, Part II
> Date:
> Wed, 01 Sep 1999 07:43:09 -0400
> From:
> "Kathleen M. Dickson" <kathleen.dick...@snet.net>
> Organization:
> SeCT Chronic Lyme Group
> Newsgroups:
> sci.med.diseases.lyme
> e-Petition to the U.S Government to stop funding University-based
> Rheumatologists, Immunologists, and other researchers (UBRs) whose
> endeavors have taken them away from the study of TREATMENT modalities
> for Lyme disease and instead leads them to the profitability in
> DIAGNOSTICS and PREVENTION:
> We contend that we immediately need a CURE, and that the US Govt
> should stop funding UBRs whose endeavors we will describe.
> Recently some of these UBRS in New York have initiated an
> attempt to have licenses revoked of some Lyme-Literate Physicians
> (LLMDs -Those who understand the disease and try to help the
> patients recover) in New York. This presents a problem because
> there are few in the northeast, as elsewehere, who have the
> courage to face the harrassment of these SUNY-based UBRs, as well
> as insurance companies, in order to treat Lyme disease patients. These
> Lyme-Literate Physicians, the ones criticized by these highly funded
> researchers, are the ones who have the experience and expertise that
> reflects the state of current knowledge of treatment.
> We herein point out that the efforts and focus of these highly
> funded UBRs' is in discovering molecules of interest to vaccine
> manufacturers and for sale in diagnostic test kits. The evidence
> follows. We contend that A. Barbour, R. Dattwyler, B. Luft, L. Sigal,
> E. Fikrig and Allen Steere, R. Schoen, J. Evans and others who claim
> Lyme is Overdiagnosed and Overtreated; the self-proclaimed experts
> who are getting most of the funding regarding Lyme disease, are
> interested in the commercial value of this disease and not in curing
> patients. We seek a review of the results of government (NIH, CDC)
> funding to these UBRs who seek molecules and diagnostic methods to
> patent for profit, as we question the ethics and legality of such
> endeavors.
> Many of the above group of people (UBRs) claim Lyme disease becomes an
> autoimmune disease for which antibiotics do not cure, and/or from
> whom a diagnosis of NOT LYME benefits insurance companies and is
> more profitable, per-patient-minute, than treating Lyme disease
> patients. There is no proof yet of Lyme causing an autoimmune
> disease.
> ------Patents and Grants $$$$$$$$
> __Alan Barbour (of the ALDF)___ Barbour owns a patent for a rOSP A
> (one of the two vaccines for Lyme) and then some. Alan Barbour had
> this to say about Claire Fraser's publication of a Borrelia
> burgdorferi genome in Nature Dec 1997:
> "...But those who expecting to find in B.b. a rich vein of gold in which
> to mine virulence determinants have to be disappointed.....The results
> encourage study of a more metabolically competent spirochete, such as
> the
> Spirocheta aurentia, for a better understanding of how this ancient
> group of bacteria evolved, and to identify catalytic molecule of
> industrial
> importance."... [What he is suggesting is that we don't study at a
> spirochete that causes a disease and why, but rather one that does NOT
> cause disease because it may have commercial value.]
>
http://164.195.100.11/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&...
> &FIELD2=&d=pall
> PAT. NO. Title
> 1-5,846,946 Compositions and methods for administering Borrelia DNA
> 2-5,777,095 Osp A and B Sequence of Borrelia burgdonferi strains ACA1
> and IP90
> 3-5,688,512 Borrelia antigen
> 4-5,585,102 Flagella-less borrelia
> 5-5,582,990 DNA encoding borrelia burgdorferi OspA and a method for
> diagnosing borrelia burgdorferi infection
> 6-5,571,718 Cloning and expression of soluble truncated variants of
> Borrelia OspA, OspB and Vmp7
> 7-5,523,089 Borrelia antigen
> 8-5,436,000 Flagella-less borrelia
> 9-5,246,844 Virulence associated proteins in Borrelia burgdorferi (BB)
> 10-5,932,220 Diagnostic tests for a new spirochete, Borrelia lonestari
> spp.
> ------------The Patents of EROL FIKRIG - Yale --------------
>
http://164.195.100.11/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&...
> FIELD2=&d=pall
> PAT. NO. Title
> 1- 5,807,685 OspE, OspF, and S1 polypeptides in Borrelia burgdorferi
> 2- 5,747,294 Compositions and methods for the prevention and diagnosis
> of Lyme disease
> 3- 5,656,451 OspE, OspF, and S1 polypeptides in borrelia burgdorferi
> 4- 5,618,533 Flagellin-based polypeptides for the diagnosis of lyme
> disease
> -------The Endeavors of RAY DATTWYLER and BEN LUFT, SUNY Stony Brook
> researchers who OWN **BROOK BIOTECHNOLOGIES**.
> Patent Applications of Ben Luft, SUNY, Stony Brook.
> 1)LUFT,DR. BENJAMIN J. Spon: NI Allergy + Infectious Diseases
> From: 19980901 To: 19990831 Direct: 311446
> Indirect: 88834
> VACCINE INTERVENTION FOR LYME BORRELIOSIS
> 2)LUFT,DR. BENJAMIN S pon: National Institutes of Health
> From: 19990701 To: 20000630 Direct: 111148
> Indirect: 40902
> VACCINE INTERVENTION FOR LYME BORRELIOSIS
> NIH Grants Fiscal Year 1997 for Dattwyler and Luft's Company
>
http://silk.nih.gov/silk/brownbooks/sbir/org/fy97
> 1)NEW YORK BROOK BIOTECHNOLOGIES, INC. # 1 $324,790
> Fiscal year 1995
http://silk.nih.gov/silk/brownbooks/sbir/org/fy95
> 2)NEW YORK BROOK BIOTECHNOLOGIES, INC. # 1-$99,840
> -----Funding for Raymond Dattwyler:
>
http://fundedresearch.cos.com/cgi-bin/NIH/getRec?P01NS340929002
> Principal Investigator and Address: DATTWYLER, RAYMOND J
> SUNY @ STONY BROOK HEALTH SCIENCES CENTER, T12-02
> STONY BROOK, NY 11794-8121
> Initial Review Group: ZNS Performing Organization:
> STATE UNIVERSITY NEW YORK STONY BROOK
> Grant Title: NEUROLOGIC ASPECTS OF LYME DISEASE IN NORTH AMERICA
> Grant Expires in: 2 Year(s)
> -----Grants that went to Luft:
>
http://fundedresearch.cos.com/cgi-bin/NIH/getRec?M01RR107100015
>
http://fundedresearch.cos.com/cgi-bin/NIH/getRec?R01AI37256
> -----Funding received by Brook Biotechnologies in 1997
>
http://www.sba.gov/gopher/Innovation-And-Research/Awd97/awdny.txt
> 29146 HHS Brook Biotechnologies, Inc. *** $633,237 ***
> Long Island High Tech Incubato 25 East Loo Phase: 2
> Stony Brook NY 11790-335 Minority: Woman:
> Topic: Recombinant Based Elisa--Diagnosis of Lyme Borreliosis
> ------Patents Pending for Ben Luft
>
http://www.research.sunysb.edu/research/data/pendaps.txt
> 1) LUFT,DR. BENJAMIN J. Spon: National Institutes of Health
> From: 19981201 To: 19991130 Direct: 229409
> Indirect: 90724
> GENETIC IDENTIFICATION AND DELINEATION OF HUMAN
> PATHOGENIC CLONES OF BORELIA BURGDORFERI
> 2) LUFT,DR. BENJAMIN J. Spon: NI Allergy + Infectious Diseases
> From: 19980901 To: 19990831 Direct: ***$ 311446 ***
> Indirect: 88834
> VACCINE INTERVENTION FOR LYME BORRELIOSIS
> 3) LUFT,DR. BENJAMIN Spon: National Institutes of Health
> From: 19990701 To: 20000630 Direct: 111148
> Indirect: 40902 VACCINE INTERVENTION FOR LYME BORRELIOSIS
> -------------------------------------------------
> Molecular Mimicry, the battle cry of some of these UBRs, is the
> concept that antibodies or the immune response against Borrelia
> burgdorferi also fit a niche on host cells. This means that by
> exposure to Bb, the human victim starts generating antibodies
> against its own tissue and an inflammatory process evolves.
> There is as yet no solid proof of molecular mimicry in Lyme disease.
> Lyme disease is a persistent spirochetal infection. There is no
> proof that one ever gets rid of any spirochetal infection.
> ---------------------------------------
> Failed Attempts to Show Demonstrate Molecular mimicry by the UBRs:
> (Article I of II:) Cell Immunol 1999 May 25;194(1):118-23
> "Cross-reactivity of Borrelia burgdorferi and myelin basic
> protein-specific T cells is not observed in borrelial encephalomyelitis.
> Pohl-Koppe A, Logigian EL, Steere AC, Hafler DA
> Center for Neurologic Diseases, Brigham and Women's Hospital, Boston,
> Massachusetts, 02115, USA. Annette.Pohl-Ko...@kk-i.med.uni-muenchen.de
> "Borrelial encephalomyelitis, a rare manifestation of Lyme
> borreliosis,
> may present as a multiple sclerosis (MS)-like disease. It is postulated
> that in MS, inflammation of the white matter is caused by a
> T-cell response directed to myelin antigens. Here, we examined
> whether a T-cell autoimmune response may play a pathogenetic
> role in Borrelia-associated white matter disease mediated by
> cross-reactivity between myelin basic protein (MBP) and B.
> burgdorferi. We generated a total of 1760 short-term T-cell
> lines against B. burgdorferi or MBP from two patients with
> Borrelial encephalomyelitis and compared these with three
> patients with late Lyme disease, one patient with transverse
> myelitis, eight patients with MS, and four healthy controls.
> While a few T-cell lines recognized both B. burgdorferi and
> MBP, T-cell clones from these lines responded only to the
> antigen of the original stimulation. Thus, our data do **not**
> provide evidence for cross-reactivity between MBP and B.
> burgdorferi. Copyright 1999 Academic Press."
> ___________________________________________________-
> (Article II of II:) Science 1998 Jul 31;281(5377):703-6
> "Identification of LFA-1 as a candidate autoantigen in
> treatment-resistant Lyme arthritis.
> Gross DM, Forsthuber T, Tary-Lehmann M, Etling C, Ito K, Nagy ZA,
> Field JA, Steere AC, Huber BT
> Department of Pathology, Tufts University, Boston, MA 02111 USA.
> Treatment-resistant Lyme arthritis is associated with immune
> reactivity to outer surface protein A (OspA) of Borrelia burgdorferi,
> the agent
> of Lyme disease, and the major histocompatibility complex class II
> allele DRB1*0401. The immunodominant epitope of OspA for T helper cells
> was identified. A homology search revealed a peptide from human
> leukocyte function-associated antigen-1 (hLFA-1) as a candidate
> autoantigen. Individuals with treatment-resistant Lyme arthritis,
> but not other forms of arthritis, generated responses to OspA,
> hLFA-1, and their highly related peptide epitopes. Identification of the
> initiating bacterial antigen and a cross-reactive autoantigen *may*
> provide a model for development of autoimmune disease."
> ----
> There is no evidence yet that Lyme disease becomes an auto-immune
> disease, only more and more evidence that autoimmune diseases often
> have an infectious origin. If these UBRs can change the surveillance
> numbers by claiming that Lyme becomes an autoimmune disease, funding
> for these Rheumo/autoimmune researchers will continue to exceed
> that for curing Lyme as an infectious disease. They are abusing
> the funding by developing test kits of commercial value and changing
> their statements about the reliability of such testing, now that
> they have a product to market from tehir private companies.
> _____________________________________
> More About Where Steere’s Endeavor Lead Him:
>
https://www-commons.cit.nih.gov/crisp/
> Grant Number: 5R03TW00514-03PI
> Name: STEERE, ALLEN C.PI Title: Project
> Title: LYME BORRELIOSIS IN RUSSIA
> Abstract: DESCRIPTION (adapted from investigator's abstract): The
> specific aims of the parent grant are to describe the clinical
> manifestations of Lyme Disease in patients in New England, to
> develop specific diagnostic tests, and to determine appropriate
> treatment regimens for the illness. Since 1986, Dr. Steere, the
> Principal Investigator of the parent grant, has participated in a
> cooperative exchange with physicians at the Rheumatology Institute
> in Moscow under the auspices of the U.S.-U.S.S.R. Biological
> Health Agreement. It is now known that a considerable portion
> of the worldwide nosoarea of Lyme borreliosis is situated within
> the former Soviet Union. The infection there may be caused by any of the
> three currently identified groups of the B. burgdorferi sensu latu
> complex, including B. burgdorferi sensu stricto, B. garinii, and B.
> afzelii.
> However, the characteristics of the disease, particularly the late
> manifestations of the illness, are incompletely described in Russia,
> and for the most part, accurate diagnostic testing is not yet available
> there. In the proposed study, the clinical manifestations of Lyme
> borreliosis in Russian patients will be described based on a referral
> network of patients seen at the Rheumatology and Neurology Institutes in
> Moscow, and patients seen at the Lyme Disease Center at Ekaterinburg, a
> highly endemic area in the Ural Mountains, about 1,000 miles east of
> Moscow.
> A Lyme disease diagnostic laboratory will be developed in
> Moscow, and sensitive and specific diagnostic criteria for ELISA
> and Western blotting tests will be developed, based on Russian case and
> control subjects. Skin biopsy samples of erythema migrans skin lesions
> will be cultured, and joint fluid and cerebrospinal fluid samples will
> be tested by PCR in an effort to identify the groups of the B.
> borrelia burgdorferi sensu latu complex which cause this infection in
> Russia. Finally, the clinical data will be correlated with the
> laboratory information in an attempt to determine whether particular
> spirochetal groups cause different clinical pictures with different
> serologic responses in Russia. These studies are important both to
> understand variations of this infection in different parts of the
> world and to aid in the diagnosis and treatment of Russian patients
> with this curableinfection.
> Institution: NEW ENGLAND MEDICAL CENTER
> 750 WASHINGTON ST BOSTON, MA 02111
> Fiscal Year: 1997 Department: Project Start: 30-SEP-95
> Project End: 29-SEP-99
> ICD: FOGARTY INTERNATIONAL CENTER IRG: ICP
> ____________________________________________
> Did the Russians have to purchase an agreement to license
> Steere’s methods? Lyme disease is not always a "cureable infection”
> at this point in time, or he others like him would not be getting
> millions of dollars in grant money to study it.
> ____________________________________________
> Before Lyme disease was a Rich Vein of Gold from
> which to mine diagnostic and vaccine biomolecules of commercial/
> industrial value, Ray Dattwyler and SUNY had this to say about
> testing for Lyme disease:
> "Seronegative Lyme disease. Dissociation of specific T- and
> B-lymphocyte responses to Borrelia burgdorferi [see comments]
> ***Dattwyler RJ***, Volkman DJ, Luft BJ, Halperin JJ, Thomas J,
> Golightly MG N Engl J Med 1988 Dec 1 319:22 1441-6
> ABSTRACT: The diagnosis of Lyme disease often depends on the
> measurement
> of serum antibodies to Borrelia burgdorferi, the spirochete that causes
> this disorder. Although prompt treatment with antibiotics may
> abrogate the antibody response to the infection, symptoms persist in
> some patients. We studied 17 patientsvwho had presented with acute
> Lyme disease and received prompt treatment with oral antibiotics, but in
> whom chronic Lyme disease subsequently developed. Although these
> patients had clinically active disease, none had diagnostic levels
> of antibodies to B. burgdorferi on either a standard enzyme-linked
> immunosorbent assay or immunofluorescence assay. On Western blot
> analysis, the level of immunoglobulin reactivity against B. burgdorferi
> in serum from these patients was no greater than that in serum from
> normal controls. The patients had a vigorous T-cell proliferative
> response to whole B. burgdorferi, with a mean ( +/- SEM) stimulation
> index of 17.8 +/- 3.3, similar to that (15.8 +/- 3.2) in 18 patients
> with chronic Lyme disease who had detectable antibodies. The T-cell
> response of both groups was greater than that of a control group of
> healthy subjects (3.1 +/- 0.5; P less than 0.001).
> We conclude that the presence of chronic Lyme disease cannot be
> excluded by the absence of antibodies against B. burgdorferi and
> that a specific T-cell blastogenic response to B. burgdorferi is
> evidence of infection in seronegative patients with clinical
> indications of chronic Lyme disease."
> NOW Dattwyler has this to say:
> Chembio Takes Lead In Rapid-Test Race / First to get FDA
> OK online disease kit By Michael Unger. STAFF WRITER
> Biotechnology executive Tom Haendler says he knew he was in the right
> business when even the monster movie he watched on a TransAtlantic jet
> portrayed home pregnancy tests like the one his Long Island company
> manufactures. While watching "Godzilla" as he returned from a
> medical technology show in Europe last year, the picture's hero goes
> into a drugstore and buys over-the-counter home pregnancy tests to
> determine whether the monster terrorizing New York City is pregnant.
> Said Haendler, president of Chembio Diagnostics Systems, "If this
> [pregnancy test] made the movie, then I'm sure we're on the right
> track."
> Now, privately held Chembio of Medford, in its latest venture into
> the rapidly growing diagnostic-test industry, has a deal with a large
> pharmaceutical company in New Jersey, Carter Wallace, to market the
> first rapid Lyme disease test.
> The worldwide market for rapid diagnostic tests for both home and
> professional use is far more than $2 billion, analysts say. And while
> it is far from being alone in the market of fast tests,Chembio has made
> rapid biotech pregnancy test kits for both the home market and doctors'
> offices, hospitals and clinics for several years. Now it has taken the
> lead in quick tests for Lyme disease.
> The company, formed with venture capital investors headed by
> company chairman Lawrence Siebert, has developed numerous other rapid
> tests for tuberculosis, ulcers and newly emerging diseases and parasites
> now sometimes found in the United States, such as malaria, Chaga's
> disease and Dengue Fever.
> Just last week, Chembio became the first company to win the U.S.
> Food and Drug Administration's approval to market a simple test to show
> whether someone has been bitten by a tick infected with Lyme disease.
> The test shows positive or negative for the presence of antibody
> markers for the Lyme organism within 20 minutes. It also gives doctors
> a signal whether to start crucial antibiotic treatment immediately
> instead of potential delays at an outside laboratory. Even so, the
> FDA recommends that positive Lyme results on the Chembio rapid blood
> test be confirmed with a second test at a clinical laboratory.
> For the moment, Chembio is alone in the field with its Lyme test;
> but other companies are hot on the trail. Chembio's Lyme test is better
> than 95 percent accurate, according to clinical tests, and is the first
> rapid Lyme test to pass FDA muster. It will be marketed starting in
> April, Chembio says, for doctors' offices, hospitals, clinics and
> reference laboratories. An over-the-counter version for consumers'
> home use is in the works. The price has not been determined.
> The test uses technology developed by Lyme disease experts at the
> State University at Stony Brook medical school and Brookhaven National
> Laboratory. It was developed jointly by Chembio and by Brook
> Biotechnologies Inc. in the Long Island High Technology Incubator in
> Stony Brook.
> "That's our test," said Dr. Raymond J. Dattwyler, president of
> Brook Biotechnologies who also heads the Lyme Disease Center at the
> State University at Stony Brook's Health Sciences Center. Dattwyler and
> Dr. Benjamin J. Luft, chairman of medicine at Stony Brook, are the
> inventors, along with Dr. John Dunn of the Brookhaven National
> Laboratory Biology Department. The patents are owned by the State
> University and Brookhaven National Laboratory.
> At the Chembio plant on Horseblock Road, several dozen women in
> blue pharmaceutical garb assemble the various kinds of test kits by
> hand. The company's platform technology requires only a drop of blood,
> urine or mucous on a treated membrane strip to show negative or positive
> results. Chembio scientists Sat Nam S. Hanjan, Mewa Singh and Hema Mana
> explain that the biochemical reactions begin to appear on the small
> plastic indicators within a minute or two and usually take no more
> than 15 or 20 minutes to fully develop and complete. The kits are
> manufactured in the Medford plant in batches of 10,000 to 100,000.
> "We're hoping that many of these tests eventually will be available
> for consumer purchase for use at home," Hanjan said. Chembio recently
> won a $100,000 research grant from the federal government to develop a
> rapid biotech test for new strains of drug-resistant tuberculosis. A
> rapid AIDS test also is in the works.
> The company believes it is on the leading edge of the trend toward
> ultra-fast testing. "It's the way everything is going to go," says Avi
> Pelossof, Chembio's marketing director. "It's a great industry to
> be in," said Haendler. "And we're in it at the right time." "
> We patients contend that these UBRS are not spending his time trying
> to discover what works in terms of treatment for Lyme disease by
> virtue of the time they must be spending at SUNY, ChemBio and Brook
> Biotechnologies developing Test Kits. They changed their tune about
> the adequacy of serology in diagnosis (95%) when they had a test
> kit to sell.
> --------------
> Endeavors of Allen Steere:
> Internal letter from a company in CT:
> "Sent: Friday, July 02, 1999 2:59 PM
> Subject: CDC Lyme Disease Study
> "....Dr. Allen Steere will be
> working on a CDC and NIH supported Lyme Disease study for which
> they are seeking patient volunteers. This study has been approved by
> Tufts/New England Medical Center's Institutional Review Board.
> They are primarily interested in patients with physician diagnosed
> erythema migrans, in whom they will be studying pathogenesis of
> disease, histopathology, molecular and genetic diversity of Borrelia
> burgdorferi isolates, cell-mediated immune factors, and serology, in the
> setting of clinical presentation. These patients will have skin
> biopsy of the lesion (small enough to be dressed with a
> bandaid, no sutures) as well as bloodwork on the day of presentation.
> Lyme disease treatment will be initiated at that time. Only one
> follow-up visit is required for convalescent bloodwork, 2 to 4 weeks
> later. The grant provides for a $100 payment to these volunteers..."
> Patients with Chronic Lyme disease contend that if Dr. Steere was truly
> interested in the relative virulence, he would ask the patients to come
> back at 6 months, 1 year, 2 years, etc., to see which strains have
> the worst remaining effect on the patient.
> Steere is looking for new strains. If he finds one, he
> can patent it, like the rest of the people who are making money
> off of Lyme disease.
> Imugen, a lab in Norwood, MA, is in a partnership with CORIXA
> another growing biotech company...Here's why:
>
http://www.corixa.com/parpro/partnered.asp
> Target Product: Reference diagnostic for detection of certain
> tick-borne diseases Status: Development
> Partner: IMUGEN, Inc.
> Corixa and others are looking for markers of infection; to patent
> other commercially viable diagnostic test kit antibodies/ biomolecules.
> -------------------------------------------------------
> From a Corixa Press release, April 7, 1998...
> "...The agreement provides Imugen with an exclusive license,
> including the right to sub-license these recombinant antigens
> for reference laboratory testing in the US and Canada
> in exchange for a share of revenues from any diagnostics
> kits or blood screening tests that are developed as a
> result of this collaboration..."
> ---------------------------------------------------------
> We are tired of all this greed and intrigue. We're sick, so
> we're not even good candidates for vaccines... These people,
> Steere, Barbour, Dattwyler, Luft, Fikrig, etc., biopsy our
> rashes so thay can make money on a new antigen (vaccines) or
> identify new antibodies to identify by test kit.
> Meanwhile, we Lyme Patients and the doctors that help us
> try to keep the infection under control until a cure is found,
> are the worthless by-products of their endeavors.
> We don't want them funded by the US Government any longer. Since
> many now have their own independent research facilities, patents and
> patents pending, they are financially capable of continuing
> research without US Govt Grants.
> We want the majority of future funding for Lyme disease
> to be focused upon requests for grants to study treatment
> modalities and related science.