Date: Wed, 25 Jul 2007 13:05:54 -0700
To: Beverly.Hayon@kp.org, boh9@cdc.gov, Morgellons@yahoogroups.com,
morgellons_bayarea@yahoogroups.com
CC: cisfl2004@netzero.com
Subject: issues with Kaiser Permanente attempting to study morgellons
I posted the following recently to morgellons-watch. It would be useful to get a
response to the issues I raise:
morgellonswatch.com/2007/07/23/cdc-federal-business-opportunity-to-study-morgellons/#comment-34440I have strong issues in having Kaiser selected for studying Morgellons. It seems
like it's corrupt on it's face. Kaiser is a company that strongly backs the
IDSA's non-treatment guidelines for Lyme, and is therefore prejudiced against
the existence of Chronic Lyme disease. Such a company cannot possibly have the
open-mind needed to study this disease and get a proper handle on it's etiology.
Even the the first published paper on Morgellons makes a strong case for chronic
Lyme infection found in the majority of Morgellons patients:
> 1: Am J Clin Dermatol. 2006;7(1):1-5.Links
> The mystery of Morgellons disease: infection or delusion?
> Savely VR, Leitao MM, Stricker RB.
>
> South Austin Family Practice Clinic, Austin, Texas, USA.
>
> Morgellons disease is a mysterious skin disorder that was first described more than 300 years ago. The disease is characterized by fiber-like strands extruding from the skin in conjunction with various dermatologic and neuropsychiatric symptoms. In this respect, Morgellons disease resembles and may be confused with delusional parasitosis. The association with Lyme disease and the apparent response to antibacterial therapy suggest that Morgellons disease may be linked to an undefined infectious process. Further clinical and molecular research is needed to unlock the mystery of Morgellons disease
How is a Lyme-denialist organization like Kaiser (
lyme.kaiserpapers.info ) going to be able to do a study of Morgellons when it doesn't even take Lyme
disease seriously?
Why is a contract being awarded to a company that appears to be violating
California Health and Safety code as modified by SB772 (
info.sen.ca.gov/pub/07-08/bill/sen/sb_0751-0800/sb_772_bill_20070223_introduced.pdf ) by only offering "IDSA" treatment standards when in fact SB772 defines ILADS
treatment and diagnostic guidelines for Lyme as "medically viable." Kaiser
refuses to acknowledge the validity of ILADS guidelines even though the IDSA
guidelines are under legal challenge (
www.the-scientist.com/news/home/49605/ )
After the public sees "Sicko!" and
lymediseasefilm.com I'm wondering how
much of our anger will bubble up into better congressional oversight of the
total mismanagement of health resources that appears to be happening at the CDC.
Morgellons sufferers are urged to begin a letter-writing campaign to achieve
this needed oversight of the CDC and questionable contract expenditure such as
this Kaiser Morgellons contract. Lyme disease sufferers have used similar means
to fight the corrupt medical organizations that refuse to recognize or treat
the disease. Looks like Morgellons sufferers will need to do the same.
> # Niels Says:
> July 25th, 2007 at 12:03 pm
>
> As a Kaiser patient, I have strong reservations about Kaiser
> being in charge of any research regarding morgellons. It’s a
> serious case of “the fox guarding the henhouse” due to Kaiser’s
> longstanding position as “Lyme denialists” combined with my
> personal experiences with Kaiser, and hearing of other patients
> issues with kaiser related to Morgellons treatment:
> (
lymebusters.proboards39.com/index.cgi?board=rash&action=display&thread=1182232750 )
>
> Concerns:
>
> (1) Integrated labs at kaiser may have different “standards” and values than found at other
> health institutions. plus there are conflicts of interest as kaiser has strong financial interest
> in continuing to not treat lyme patients (and by extension, want the same for morgellons)
> see:
www.kaiserpapers.info/co/conten.html>
www.kaiserpapers.info/co/conten.html#VI._Lyme>
> (2) The fact that this is a study to see how much it costs to “not treat” Morgellons/Lyme patients.
> How much do they cost? How much of a pain in the ass are these patients? How often do
> they sue? How often do they die? What other costly medical complications ensue from ignoring the fundamental disease etiology
> (which is the standard of care for Lyme and Morgellons patients
> at Kaiser) and just treating symptoms.
>
> If you think about it, it’s reminiscent of the tuskegee syphillis experiments…
>
en.wikipedia.org/wiki/Tuskegee_Study_of_Untreated_Syphilis_in_the_Negro_Male> reworked for the age of HMO’s where “Sicko” style patient-abuse has
> become accepted, just like using blacks as lab-rats was ok in recent
> history too… that’s what we’re getting here… a study to see
> how badly this disease messes you up when following standard practice guidelines at HMO’s
> who deny the existence of Chronic Lyme and Morgellons as a real disease of infective etiology.
>
> In my case, I know for certain fact that Kaiser … is not really interested in looking for very much… they ran a panoply of
> panels at my request, and usually explain them away as “borderline ok… everybody has
> different levels”… telling me the abnormal “Low” and “High” marks on my labs are just “guidelines”…
> also I have my suspicions about kaiser’s testing itself — for example my IgA/IgM/IgG levels
> and IgG subclasses 1-4 were really low according to labcorp, but only “borderline low” with
> kaiser… so my LLMD’s recommendation of getting IV gamma globulin was denied, based
> on “lack of need” as backed up by the labs. Now granted I could have gotten a lot
> better due to rifampin/metronidazole/fluconazole.. but I’ve seen one instance where their own labs contradict themselves. I get regular CBC/diff that shows for exampe 0-1% eosinophils… (aka no sign of infection or immune response) … but I got a special “hemogram” alongside a fancier look at my CD57’s and it showed my EOS at 16.5% (whch is “HIGH” and sign of infection or allergy).. I’ve been asking infectious disease docs, hematology, etc why there is this discrepancy… since EOS levels is one of the stupid things they look at to determine if you’re sick or not…
>
> The discrepancy left me wondering how many of our “normal” Kaiser labs are actually normal… versus being another stealth
> aspect of this disease that has been bioengineered to evade detection by standard tests (conspiracy
> hat fully on w/ that statement, c.f. “stealth disablers”).
> Kaiser has already shown their full acceptance of IDSA treatment
> guidelines for Lyme, which basically denies the existence of “chronic lyme” and redefines any
> symptoms following one month of antibiotics as “post lyme syndrome” which is to be treated with
> psychotropics (antidepressants, antipsychotics).
>
> This is exactly the treatment they offer to Morgellons patients
> as well. This study will just help stamp out the “lyme connection”
> because Kaiser will user tests that will guarantee negative
> results and thereby direct future medical practitioners to NOT
> test for Lyme in their morgellons patients.
>
> All they’re trying to do is short-cut past the side-trip to controversial lyme land… they’ll
> claim they “tested 100% of their morgellons patients for lyme” using the ELISA test that’ll
> only have a chance of registering positive if you’ve got bit by a particular variant of lyme found
> on the east coast… which is going to turn into a 100% NEGATIVE rate out in california… so
> they’ll suggest that morgellons patients needn’t be tested for lyme as they’ve found
> no correlation.
>
> That’s the outcome I expect w/r/t the CDC choosing Kaiser Norcal for their “study”
>
www2.fbo.gov/spg/HHS/CDCP/PGOA/Reference-Number-2007-Morgellons/Modification%2001.html>
> And it worries me that they’ve awarded the contract to single
> company that does most of it’s own labs, sending out to labcorp
> or unilab for their guaranteed-false-negative lyme tests.
>
> And FYI, the only way I’ve gotten anywhere with Kaiser at all
> is because I have an LLMD that has diagnosed me with
> “Lyme Disease/Morgellons Type” and i’ve found significant improvement in treating for lyme and parasitic infecton,
> and compensating for endocrine disruptions from that infection.
Also, here's an example of the kind of constant wrangling I need to engage in
order to get either Lyme or Morgellons to be taken seriously at Kaiser:
> (associated links:
>
www.the-scientist.com/news/home/49605/>
info.sen.ca.gov/pub/07-08/bill/sen/sb_0751-0800/sb_772_bill_20070223_introduced.pdf>
www.ilads.org/publications_cameron_11_2006.pdf>
www.ilads.org/files/press_release_10_25_06.pdf> )
>
> ..........
> A letter I recently sent to Kaiser Permanente:
> ..........
>
>
> Kaiser's letter of 4/20/07 states "care is appropriate and available with
> Kaiser Permanente." I strongly disagree. I certainly have no complaints
> about the quality or delivery of the care I've received to date through
> Kaiser. The issue is that not one single doctor I've seen knows enough
> about either Lyme disease or Morgellons to make any recommendations about
> treatment. This causes a cruelly slow process where I pay $XXX.00
> out-of-pocket to see Dr. <<LLMD>> once every month-or-two. Dr. <<LLMD>>
> writes prescriptions and requests tests. In turn, I convey his treatment
> plan to my primary and specialist doctors -- and parts of the plan are
> rejected as "too dangerous" (e.g. fluconazole... which after months of
> wrangling, I filled the prescription at Costco for $25.00, again
> out-of-pocket). <<DELETED ...>.
>
> Only one Kaiser doctor of the many I've seen -- Dr. <<RHEUMATOLOGIST>> --
> showed any concern or compassion for how painful and disabling this disease
> can be -- apparently she treated a Lyme/Morgellons patient at her previous
> workplace prior to Kaiser; she also at least knew how Lyme intersected with
> her fibromyalgia and arthritis patients in rheumatology. Unfortunately, I
> don't even understand how I ended up with a rheumatology referral, but it's
> indicative of how inappropriate the "referral" and "specialist" process is
> for a patient suffering from a multi-systemic disease like Lyme. Given the
> symptoms I've had, I'd need referrals to a neurologist, rheumatologist,
> immunologist, allergist, podiatrist, ENT, endocrinologist, dermatologist,
> etc. For each specialist, I'd have to explain
> infrequently-recognized/diagnosed/treated Lyme/Morgellons issues, only to
> find that the specialist knows nothing about how Lyme disease intersects
> their specialty (except Dr. <<RHEUMATOLOGIST>>). The analogy would be
> sending an AIDS patient around to a series of "specialists" who have never
> heard of AIDS, nor know anything about the disease; each doctor would note
> an increased propensity towards infection in their organ of
> specialization... each "specialist" adding an incomprehensibly small piece
> of the overall puzzle based on their myopic "specialty"... ignoring the
> big-picture until the patient succumbs. Regarding Morgellons, the analogy
> is sending a patient with tertiary syphillis (presenting with skin lesions)
> to a dermatologist -- and having the dermatologist offer only topical
> treatment, while referring the patient out to a long series of pointless
> neurological, cardiovascular, endocrinology consults.
>
> The multi-systemic, immune-evading aspects of Lyme/Morgellons require the
> services of a Lyme specialist -- a "Lyme Literate Medical Doctor" -- that
> recognizes the breadth and dynamic nature of symptoms found in Lyme
> disease, and has practical solutions based on both experimental evidence
> and clinical practice experience. That is the reason why I see Dr. <<LLMD>>
> for my treatment on Lyme/Morgellons and want to continue having him treat
> me, with coverage of my prescriptions, therapies, and tests related to this
> condition.
>
> Unfortunately, at Kaiser, the "specialists" are so unaware of Lyme disease
> that they do not even know the controversies involving Lyme
> testing/diagnosis/treatment, that the complete lack of accuracy in testing
> meaning that Lyme is a clinical diagnosis made by a specialist, using
> testing as an adjunct to diagnosis. The Kaiser specialists cling to
> guidelines developed by the Infectious Disease Society of America (IDSA)
> which are so completely wrong-headed and misleading that they are currently
> under challenge by the Connecticut State Attorney General -- for details,
> see attachment: CT-Atty-General-IDSA-Lyme-Guidelines-Antitrust-Suit.doc.
>
> The bogus IDSA guidelines are parroted by infectious disease doctors, and
> further oversimplified into "if you've been on antibiotics for more than a
> month, you no longer have lyme." This is probably the thinking behind
> Dr. <<INFDZ#1>>'s patient-file statement that he sees no evidence of Lyme
> disease. Likewise Dr. <<INFDZ#2>> is suggesting I stop my antibiotics,
> despite relatively recent Lyme symptoms, ongoing skin lesions, and a
> recommendation to the contrary by Dr. <<LLMD>>. I understand his position
> -- an infectious disease doctor going against IDSA guidelines is a
> career-limiting move. That is one of the reasons why people with Lyme
> disease who actually want to get better eventually end up at a "Lyme
> Literate Medical Doctor" if they are lucky. Such doctors diagnose, test,
> and treat Lyme according to International Lyme and Associated Diseases
> Society (ILADS) standards of care, basing treatment length on persistence
> of symptoms, as well as ongoing tests of CD57 levels (aka Stricker Panel,
> which no Kaiser doctor I've seen knows anything about). Lyme doctors
> typically aren't "infectious disease" specialists and thus are not forced
> to follow the corrupt guidelines of the IDSA to retain their specialty --
> they follow ILADS guidelines.
>
> The state of California, recognizing the apparent benefit of long term
> antibiotic treatment, recently amended sections of its Health and Safety
> Code to formally recognize the kind of treatment provided to me by
> Dr. <<LLMD>>. California Law now officially recognizes the ILADS position in
> the California Health and Safety (CHS) Code:
> (SB772, p4, line 40 to p5, line 5)
>> "Recent cogent scientific and clinical experience reviews of Lyme disease
>> have documented that long-term antibiotic therapy, varied by clinical
>> symptoms has, in general, substantially improved patient health and that
>> discontinuation of such therapy while clinical symptoms remain commonly
>> results in relapse and further disability."
> (SB772, p5, lines 22-28)
>> (c) "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."
>
> In apparent violation of CHS code, the current IDSA-based recommendations
> from Kaiser's infectious disease doctors dictate that I discontinue Lyme
> therapy, despite the fact that clinical symptoms remain. Meanwhile, CHS
> code observes such early discontinuation "commonly results in relapse and
> further disability." As per CHS code, not treating Lyme is far more
> dangerous than any of the risks of long-term antibiotics: "Many victims
> suffer permanent physical or mental damage due to misdiagnosis or ignorance
> of the disease. Lyme disease can be fatal."
>
> Despite being spelled out as "medically viable" in CHS code, the Kaiser
> infectious disease doctors do not recognize the ILADS diagnostic and
> treatment guidelines under which Dr. <<LLMD>> practices; they do not
> recognize Dr. <<LLMD>>' diagnosis or treatment plan as falling under the
> purview of "evidence based medicine." The reality is that the IDSA
> guidelines purposely ignore significant "evidence based medicine" because
> it interferes with insurance companies' profits -- see attachments
> ILADS-demands-retraction-of-IDSA-guidelines.pdf
> cameron-on-idsa-guidelines.pdf
>
> In other words, without actually knowing anything about Lyme disease or
> Morgellons, without ever having diagnosed or treated a single Lyme patient,
> Kaiser's "specialists" appear to be disagreeing with Dr. <<LLMD>> -- A Lyme
> disease specialist with a number of Lyme patients displaying Morgellons
> symptoms. A Lyme disease specialist that is well known in California,
> regularly speaking at conferences and <<DELETED ...>; a co-author on a
> seminal paper on Lyme disease testing; a doctor with a practice spanning
> <<DELETED...>>.
>
> Kaiser is claiming "care is appropriate and available" regarding my
> Lyme/Morgellons issues. I have not found this to be true in
> practice. SB772, p4, line 19 states "Lyme disease patients have identified
> fewer than 30 California physicians who regularly diagnose and prescribe
> effective treatment for persistent Lyme disease." Which of these 30
> California physicians work at Kaiser? -- none. That is why proper care of
> my condition requires me to continue treatment through Dr. <<LLMD>>.
>
> Sincerely,
> Niels <<deleted>>