Post by cliffmickelson on Aug 31, 2007 22:38:57 GMT -5
This letter is a "must read" for anyone wishing to truly understand the concerns of the Morgellons community over the CDC award of the morgellons etiology study to the giant west coast HMO Kaiser Permanente. The following letter was excerpted en toto from its original location at lymebusters.com. The original can be seen there. This letter, written by Niels, is very well constructed. It is an important contribution to the ongoing struggle of the Morgellons community for validation and justice.
-Cliff Mickelson
Niels' letter to CDC
--------------------------------------------------------------------------------
Date: Mon, 27 Aug 2007 15:58:15 -0700
From: "Niels"
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,
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 (
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:
info.sen.ca.gov/pub/07-08/bill/sen/sb_0751-0800/sb_772_bill_20070223_introduced.pdf
lyme.kaiserpapers.info
.....
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:
www.the-scientist.com/news/home/49605/
www.ilads.org/publications_cameron_11_2006.pdf
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.
.....
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??
.....
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" (
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
morgellonstreatmentsteps.com/Morgellons_Medical_informat.html the
following tests are recommended
> - 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
> - 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" (
www1.wsvn.com/features/articles/investigations/MI46364 ). In California,
Morgellons endemic areas such as Los Angeles county have had longstanding
problems with blackfly: 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
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
lymebusters.proboards39.com/index.cgi?action=display&board=rash&thread=1186564783
....
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 www.canlyme.com/Conflicts.doc and
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.
-Cliff Mickelson
Niels' letter to CDC
--------------------------------------------------------------------------------
Date: Mon, 27 Aug 2007 15:58:15 -0700
From: "Niels"
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,
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 (
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:
info.sen.ca.gov/pub/07-08/bill/sen/sb_0751-0800/sb_772_bill_20070223_introduced.pdf
lyme.kaiserpapers.info
.....
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:
www.the-scientist.com/news/home/49605/
www.ilads.org/publications_cameron_11_2006.pdf
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.
.....
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??
.....
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" (
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
morgellonstreatmentsteps.com/Morgellons_Medical_informat.html the
following tests are recommended
> - 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
> - 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" (
www1.wsvn.com/features/articles/investigations/MI46364 ). In California,
Morgellons endemic areas such as Los Angeles county have had longstanding
problems with blackfly: 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
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
lymebusters.proboards39.com/index.cgi?action=display&board=rash&thread=1186564783
....
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 www.canlyme.com/Conflicts.doc and
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.