Talk:Morgellons/Nielsp
Cite this![edit]
Message-ID: <46D35707.7010401@gmail.com>
Date: Mon, 27 Aug 2007 15:58:15 -0700
From: nielsp
To: morgellonssyndrome@cdc.gov, Dan Rutz <dwr1@cdc.gov>, boh9@cdc.gov, Barry.Miller@kp.org, Beverly.Hayon@kp.org
Subject: why is CDC using a lyme-denialist organization to study Lyme-related Morgellons?
And why is the CDC specifying all the wrong tests to get to the bottom of Morgellons etiology???
The CDC's Kaiser Morgellons study appears to use the corrupt IDSA Lyme guidelines in its testing protocols. These ensure that not a single tested Morgellons patient will show serologic evidence of Lyme disease, even though the majority of Morgellons patients have Lyme disease when tested by a reputable lab such as Igenex, using ILADS diagnostic guidelines.
In particular, the CDC/IDSA protocol of ELISA-first will ensure a 100% false negative test for all Morgellons patients. This "gateway" to the proper test -- IgG/IgM Western Blotting -- will never be passed by any of the patients you test with the corrupt and fraudulent IDSA guidelines for Lyme. But your doctors will play "stupid" with these tests, which by the CDC's own admission, are for "surveillance" and not "diagnosis." Furthermore, the CDC and Kaiser continue to ignore ILADS significant science-based conclusions regarding the false-negative rate on the ELISA, especially for people infected with Lyme in the three epidemic states for Morgellons -- California, Texas and Florida (as opposed to the borrelial species found on the east coast of the USA).
Since the Kaiser Morgellons study patients will be prevented from getting a Western Blot test, there will be no chance to identify the "telltale bands" of Lyme Disease infection. And even if a patient was able to get a western blot test, the tests Kaiser uses (Unilab) delete significant reactivities seen in most Lyme patients, thereby further ignoring clear signs of infection. The reason for this is the CDC's own complicity in Lyme denialism -- it's coverup of the Lymerix vaccine fiasco and the deletion of bands from Western blot tests to prevent "false positives" from a vaccine that nobody can get because it was pulled from the market. The fact that this study perpetuates that fraud, continues to coverup the LymeRix fiasco, makes the current Kaiser study a complete waste of time and money from the get-go.
Ultimately, this Morgellons study will perpetuate a scientific fraud the CDC is involved in -- denial of chronic Lyme -- and further ensures that patients with clearly visible Lyme symptoms (rashes) will continue to be ignored and misdiagnosed. The CDC's position and the Kaiser study directly contradicts the opinions of doctors treating Morgellons patients. For example, http://www.morgellons.eu/ claims "According to Dr. William Harvey (chairman of the NASA Education Advisory Committee) 94% of people suffering from Morgellons have tested positive for the bacteria associated with Lyme disease, or Borreliosis." The only valid and peer reviewed medical literature on Morgellons also speaks of the connection with Lyme disease ( http://www.morgellons.org/AJCDerm1.pdf ) and is co-authored by the head of ILADS, which is one of the few professional medical societies that recognizes Morgellons and Chronic Lyme.
IMPORTANT: By ignoring ILADS conclusions regarding Lyme disease and Morgellons, the Kaiser Morgellons study represents a SYSTEMATIC VIOLATION OF CALIFORNIA LAW by a large corporation and a federal government entity. This is due to Kaiser's refusal to abide by California law, insisting on using the IDSA guidelines for Lyme treatment and diagnosis, and excluding ILADS guidelines. The issue is that in California, according to California Health and Safety Code, Section 104190 (as amended by SB 772) patients should not be denied the choice of treatment under ILADS guidelines, which are designated medically viable:
> “Medically viable” as applied to treatment alternatives > means a mode of treatment recognized by a substantial part of the > medical profession to be within the scope of current, acceptable > standards, including the longer term treatment approach reflected > in the treatment guidelines of the International Lyme and > Associated Diseases Society (ILADS), “ILADS Evidence-Based > guidelines for the Management of Lyme Disease.”
Furthermore, SB772 speaks of "outdated CDC surveillance criteria" and makes it clear that the misdiagnoses fostered by the CDC are medically significant:
> Some persons affected by the advanced stages of Lyme > disease have suffered irreparable damage to their health, career, > and family. Many victims suffer permanent physical or mental > damage due to misdiagnosis or ignorance of the disease. Lyme > disease can be fatal.
For more info: http://info.sen.ca.gov/pub/07-08/bill/sen/sb_0751-0800/sb_772_bill_20070223_introduced.pdf http://lyme.kaiserpapers.info
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The IDSA guidelines used by the CDC and Kaiser are under legal challenge by the Connecticut Attorney General. If Blumenthal's case succeeds against the IDSA, all the Kaiser Morgellons study patients would need to be retested under ILADS guidelines, which would invalidate all the Lyme findings of the study. This means that in addition to the decade or so that the CDC has been "sitting on it's hands" ignoring Morgellons reports, the outcome of this bogus Kaiser study will also miss a significant aspect of the etiology of this disease AND WASTE AN ADDITIONAL YEARS' TIME AND MONEY.
For more info, see: http://www.the-scientist.com/news/home/49605/ http://www.ilads.org/publications_cameron_11_2006.pdf http://www.ilads.org/files/press_release_10_25_06.pdf
Based on this ongoing "controversy", the Kaiser Morgellons study should "play it safe" and test patients under both ILADS (aka use Igenex IgG/IgM western blotting and ignore the CDC's bogus "surveillance" rules for how many bands need to be positive) and IDSA/CDC guidelines (aka all the Morgellons patients that didn't contract Lyme on the east coast will come up as negative and won't get IgG/IgM tests). That way, when the IDSA guidelines are shown to be the result of corruption and scientifically invalid, valid conclusions may still be drawn from the study patients' Igenex test results.
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In summary THIS MORGELLONS STUDY BREAKS THE LAW!!
(1) THE CDC/Kaiser STUDY VIOLATES CALIFORNIA LAW AND IGNORES CALIFORNIA HEALTH AND SAFETY CODE SECTION 104190 as per SB772. (2) THE CDC/Kaiser STUDY is based on IDSA/CDC guidelines which are currently the subject of an antitrust/corruption lawsuit by the Connecticut Attorney General.
WHY IS THE CDC VIOLATING CALIFORNIA LAW? WHY IS KAISER VIOLATING CALIFORNIA LAW?? Why is the study predicated on Lyme guidelines which appear to be corrupt? Why should the taxpayer waste money on a study which is predicated on corrupt guidelines that has the potential of invalidating the entire study??
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Finally, in reviewing the tests Kaiser will be performing on patients, it is clear the CDC has specified a number of serologic tests which will always come back "normal" for Morgellons patients. This will probably be used to fraudulently establish that Morgellons is "Somatization Disorder" -- which is Kaiser's current misdiagnosis of Morgellons and Chronic Lyme, a kinder and gentler "delusional parasitosis." Kaiser will want to continue this conclusion because properly treating and curing Lyme and Morgellons patients will take years of antibiotics and antiparasitics, and will be very expensive. It is financially expedient to let patients suffer with palliative treatment. This will be the conclusion the Kaiser study will reach, based on Kaiser's purposeful non-recognition of Morgellons/Lyme disease etiology, and Kaiser's refusal to run tests which might indicate a chronic infective condition.
In contrast, there are doctors treating Lyme/Morgellons who have published their findings to date. Why is the CDC and Kaiser ignoring this important information and pretending that this knowledge does not exist within the medical community?
Specifically, the CDC is ignoring the following important diagnostic information:
(1) According to Dr. Harvey's "PHYSICIAN PROTOCOL, BORRELIA-ASSOCIATED ILLNESSES CURRENT DIAGNOSIS AND TREATMENT" ( http://www.dstressdoc.com/Morgellons/skin%20physician%20protocol.htm ). suggests the following:
> • IgG subclasses (Often S-C 1 and 3 are low. Occasionally Total IgG is low) > > • EBV panel (IgGs always elevated) > ... > Testing for Borrelia-associated agents > > WHERE these tests are done is crucial. Borrelia and its associated agents can be > difficult to find even with the most recent, carefully crafted tests. Rationale > is brief here but stems from the initial test criteria being set 10 years ago, > where inclusion criteria of specimens were for recently-infected individuals with > high antibody levels, where test positivity depended strictly on antibodies (then > state-of-the-art), and where two of five crucial Outer Surface proteins (P31, > P34) were removed for vaccine research. Detection methods now available are for > antigenic material, and are more sensitive and specific, such as PCR and DFA. > > The following specialized laboratories are recommended because they have given us > the highest correlation with successful treatment, and greatly minimized the > number of tests presently needed to find these agents at "standard" commercial > clinical laboratories. See relevant attachments. > > • Igenex Laboratories
(2) According to Burrascano (http://www.ilads.org/files/burrascano_0905.pdf ), the CD57/NK1 test is often low in Lyme patients, and this is backed up by people on "lymebusters" Morgellons board posting their CD57 results. For more info, see Stricker RB and Winger EE Immunol Lett. Decreased CD57 Lymphocytes Subset in Patients With Chronic Lyme Disease 2001 feb1;76(1): 43-48.
(3) According to http://morgellonstreatmentsteps.com/Morgellons_Medical_informat.html the following tests are recommended
- CD-57+ NK (natural killer cells) (Lymphocyte Subset Analysis) - IgG (188) and IgM (189) from IgeneX (Western Blot Antibody Assays for B. Burdorferi) - CBC (Complete Blood Count)4 - CMP (Comprehensive Metabolic Panel)4 - ESR (Erythrocyte Sedimentation Rate)4 - CRP (C-Reactive Protein)4 - ANA (Antinuclear Antibody)4 - RA (Rheumatoid Arthritis) or CCP test4 - CPK (Creatine Kinase–MB)4 - T-4 (Thyroxine)4 - TSH (Thyroid-stimulating hormone or Thyrotropin)4 - RPR (Syphilis detection test)4 - ELISA-WB4 - B-12 (Vitamin B12 or Cobalamin; Folic Acid, RBC folate)4 - Heavy Metal Screen4 - Hb A-1-C (hemoglobin)4 - Insulin Assay4 - SPEP (Serum Protein Electrophoresis)4 - IgG-A-M levels4 - IgG subclasses4 - Herpes Panel4 - C1q (auto-immune marker)5 - IL-6 (Interleukin-6)6 - TNF (tumor necrosis factor)7 - Chlamydia pneumoniae IgG/IgM
Of these tests, it is particularly important to test Morgellons patients immune systems, as IMHO, Morgellons is an opportunistic infection brought on by Chronic Lyme's damage to the immune system (and also, possibly through chronic chalmydia pneumoniae infection).
In summary, the Kaiser Morgellons study completely "misses the boat" because the following tests will not be performed on patients:
- CD-57+ NK (natural killer cells) (Lymphocyte Subset Analysis)2 - IgG (188) and IgM (189) from IgeneX (Western Blot Antibody Assays for B. Burdorferi)3 - SPEP (Serum Protein Electrophoresis)4 - IgG-A-M levels4 - IgG subclasses4 - Herpes Panel4 - EBV panel - Chlamydia pneumoniae IgG/IgM
(4) According to Dr. George Schwartz, author of "Lisa's Disease, Fiber Disease, Also known as Morgellon's disease: Origins, staging, clinical course, treatment, case histories, decontamination of house--much more" -- testing for microfiliaria should be done via microscopic examination of a peripheral blood smear.
My own research indicates that "ONCHOCERCA VOLVULUS" and it's Blackfly vector may be present in areas considered Morgellons endemic and may be a significant aspect of morgellons etiology. In Florida, this is backed up by Trish Springstead, RN, who appeared on a recent Florida News segment on "Body Bugs" ( http://www1.wsvn.com/features/articles/investigations/MI46364 ). In California, Morgellons endemic areas such as Los Angeles county have had longstanding problems with blackfly: http://www.lawestvector.org/black_flies.htm
Although it is repeatedly claimed that onchocerca volvulus is not found in the USA, there are scattered reports in the medical literature indicating otherwise. Furthermore, the presence of Morgellons in Blackfly endemic areas of the United States, indicates that these claims need to be updated for the 21st century.
Thus in addition to standard peripheral blood smears for microfiliaria, blood collection should occur through a "bloodless skin snip" as suggested by http://www.mssushi.com/stuff/medschool/notes/micro/other/GKHelminths.doc . That document also suggests "microfiliaria migrate through dermal lesions" therefore the skin snip and blood collection should probably occur from a morgellons lesion and not uninfected skin.
There is also a Lyme connection to Microfiliaria. After all Dr. Burgdorfer discovered borrelia by accident while investigating microfiliaria in ticks:
> A microfilaria of exceptional size from the ixodid tick, Ixodes dammini, from > Shelter Island, New York Beaver, P. C.; Burgdorfer, W. 1984 > > Journal of Parasitology 70(6): 963-966 > > Thirty or more microfilariae 0.70-1.32 mm in length were recovered from the > haemocoel of an unengorged adult tick, Ixodes dammini, that was collected from > vegetation on Shelter Island, New York, USA. Among approximately 500 I. dammini > collected from the same area only one other was similarly infected. Outstanding > features, in addition to size, were absence of a cephalic space and the presence > of nuclei in 2 or 3 irregular rows extending to the end of a bluntly rounded > tail. The microfilariae apparently were ingested in a blood meal that was taken > when the ticks were larvae or nymphs, and had persisted alive without > development.
For more info, see http://lymebusters.proboards39.com/index.cgi?action=display&board=rash&thread=1186564783
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PS: Unfortunately, I cannot expect the CDC to be "reasonable" in its position on Lyme disease (and by extension, Morgellons), given the organization's complicity in a coverup of Lyme disease and it's ongoing conflicts of interest with Lyme vaccine manufacturers (see http://www.canlyme.com/Conflicts.doc and http://www.canlyme.com/cdc_implicated_2006.html ):
For instance, the CDC and SmithKline Beecham worked together on the Lyme-disease vaccine. A 1992 CDC activity report, obtained by UPI, says the agency had an agreement "with SmithKline Beecham that currently funds three positions at (the CDC) for the purpose of providing information of use in developing advanced test methods and vaccine candidates." > In June 2001, the General Accounting Office delivered a report on the issue to Senator Chris Dodd, (D-Conn), that noted that CDC employees "are listed on two Lyme-disease related patents" including "a 1993 joint patent between CDC and SmithKline Beecham Corporation." The report also said that six of 12 consultants working for the CDC on Lyme vaccines "reported at least one interest related to a vaccine firm." > According to CDC meeting transcripts where the committee weighed its recommendation, 3 had conflicts of interest with SmithKlineBeecham. The LYMERIX lyme-disease vaccine was approved by the CDC on February 18, 1999, and by October of 2000, more than 1.4 million people had received the vaccine. > But 18 months later, according to UPI, in February 2002, SmithKline Beecham pulled the vaccine off the market claiming that sales of LYMERIX were insufficient to justify the continued investment. However, according to UPI, the company also faced hundreds of lawsuits by people who said they suffered side effects from the vaccines. > The government's database at the time, listed possible side effects from LYMERIX as 640 emergency room visits, 34 life-threatening reactions, 77 hospitalizations, 198 disabilities and six deaths after people took the shots since the CDC endorsed it, according to UPI.
Thus, I see the CDC's Morgellons study as further corruption and coverup of Lyme disease. I expect the study to be a complete waste of money, and another scientific fraud that the CDC will perpetuate.
This is why I'm requesting all Morgellons and Lyme patients to contact their senators and congressmen, especially the ones involved in budget and oversight of the CDC. The CDC is wasting our taxpayer dollars on this bogus study, and has been complicit in the suffering of millions of taxpayers who are supporting the organization financially. The selection of Kaiser for this study is pure corruption as they have a vested interest in perpetuating the status quo of ignoring Chronic Lyme and Morgellons sufferers symptoms as psychosomatic.
This is the most egregious case of "the fox guarding the henhouse" I've witnessed to date. The congressmen, senators and their constituents have all heard about or seen Michael Moore's "Sicko!" in which Kaiser figures prominently. We, the taxpayers funding this study are thus angry, and we're not to allow this medical fraud to continue unchallenged.