This is the home of the free Lyme Resource Cd. The zip file was last updated January 14, 2012
Moderator of Lyme_rife yahoo list
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Hi!
This is an open letter that may be shared and reposted, in its entirety.
Chronic Lyme is frequently misdiagnosed as ALS, CFS,
It seems in the world of misdiagnosed Chronic Lyme it's hard to get antibiotic treatment and if you can it’s even harder to get any insurance company to pay for it.
The good news is there are treatments that folks are doing that seem to help and they are way less expensive than antibiotics. And many seem to think they might be safer too!
In no particular order here are some of them: herbal supplements, Rife type electronic machines, Colloidal Silver, Salt/C regimen. They are even more!
Note I am not a doctor and do not prescribe or recommend treatments. But I do collect information on what others are doing and how its working for them.
I have a free Computer text CD of information that I have collected over the last couple years helping my wife fight Chronic Lyme. And yes she is doing MUCH better now than she was then! Praise God! She has not had any regular antibiotics other than an initial short term dosage two years ago.
There is no copyright information on the CD but simply information I have gleaned from reading literally 100s of emails a day form different support groups and other web based data. I pick and choose what seems to me the most relevant. It is not a comprehensive set of data by any means but it does contain allot of gems.
I send the cd out postpaid to anyone in US or
Please send me your free Lyme Resource Cd to:
Scott Adams
And note I never share the private addresses of people with anyone else. I use them only to send out the CDs.
The information is broken down in easy to find categories, such as Related Symptoms, Body, Other Illnesses, Treatments, Research etc. Note this is full of text documents and is NOT a music CD or video DVD.
I am constantly updating it and make a batch a week to send out. It’s a Christian ministry for me and I don't charge for it.
I will respond to every request with an email (usually within 24 hours). If you don't get the email then assume I never got your request and resend it!
Note you can also download the information in a single zip file (About 150 megabytes) from my website at:
I update this file on the website at least monthly and it will usually contain the most recent information.
If you decided to download the file I suggest simply storing it on your desktop. You can then open it as a folder and read it.
If you do get the information from Cd or download and find it useful I would appreciate an email. That way I will know to continue the ministry. As long as folks find it helpful, I will continue.
Scott Adams
The following is from PJ Langhoff and is reprinted here for an example of what is happening to folks with Chronic Lyme disease…
Scott
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This is an open letter that may be shared and reposted, in its entirety.
It went to the IDSA guidelines review panel, along with 10 copies of my new
book The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the
Lyme Disease Paradigm? as well as a 5 page letter including excerpts and
references for the panelists to review. Here is the basic text of the
letter. -- PJ Langhoff
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March 25, 2009
Dear Esteemed Guidelines Review Panelists,
I am a Lyme patient, mother of 2 Lyme infected adults, award-winning author,
advocate and medical researcher who probably acquired Lyme congenitally.
However after our most recent tick bites, my family was forced to wait 13
years for an accurate diagnosis of Lyme disease despite nearly 100 physician
and ER visits. This unnecessary delay occurred despite the fact that I
removed ticks from myself and my then toddlers and we had bull's-eye rashes
and other acute Lyme symptoms.
Over time I progressively lost physical ability to the point of being unable
to walk, work, drive, think, use the left side of my body, etc. I suffered
intractable pain for years. My family and I were sick all of our lives
because no doctors would touch the words "Lyme disease". One physician told
me behind closed doors he was "not allowed to diagnose"
Lyme patients, or put the words "Lyme disease" in patient charts for fear of
reprisals. I spent 10 days at the
Mayo clinic in
refused Lyme testing despite my symptoms and lengthy medical history.
Repeatedly I heard "there is no Lyme in
which was patently ridiculous. Indeed your panelist Yale's Dr. Paul Duray
performed tick surveys on WI military bases around the time my family was
most recently bitten (in the 1990s). Reports indicated that areas of WI were
Lyme endemic at that time. Note I lived just 2 hours from one of those
endemic bases. It is felt that my parents, siblings, and probably children
also have Lyme, acquired congenitally. Many of us have been re-bitten and
have active Lyme infections and progressing symptoms despite repeated
antibiotic treatments.
Later on, as if chronic illness was not enough of an insult to my family, I
was forced to fight over 12 years in family court to retain custody of my
children post-divorce, yet eventually lost all parental rights in short,
simply because I had Lyme disease. That occurred despite expert physician
witnesses and laboratory tests clearly showing my family Lyme positive, even
by CDC standards. One judge said I didn't "look sick". One of my children
ended up in a psychiatric ward for observation due to Lyme induced
depression. We have lost homes, jobs, reputations, finances; filed
bankruptcy, fought disability providers, and insurers just to get
medications and treatments that were life-saving, covered; and most were
paid out-of-pocket. I have had to endure years of oral antibiotics that do
not work, fulminant symptoms, intramuscular and IV therapies, surgical
operations, the loss of several organs, and CNS, joint, and brain invasion
by organisms that could have been successfully treated at onset if those
whom have been holding the purse strings of information censorship had been
speaking the truth about spirochetal infections; instead of silencing a
growing epidemic in exchange for what has appeared to be profiteering and
notoriety.
I have fought hard to defend Lyme treating physicians because of what the
medical boards are doing to them (pulling their licenses or other
sanctions) because they dare to treat patients outside IDSA "standards"
of care that are no one's standards - "standards" that are merely
recommendations, and which clearly do not work. This is a tragic situation
when our own physicians cannot treat patients in favor of insurance
companies or a handful of powerful academicians who dictate medical dogma,
the former without a license, the latter without practical clinical
experience. Corporatized medicine serves no one except the profiteers; and
certainly not the ill patient populations.
Sadly, our family's tragic situation is not unique. I contend that if
restrictive Lyme disease medical guidelines such as those promulgated
unilaterally by the IDSA in 2000 and again in 2006, which deny aspects of
this illness and minimize others, are allowed to proliferate, then more
families will be facing the kinds of tragic destruction, discrimination and
denial that our family has unnecessarily and unjustly, but for the sake of
research dollars and promoting for-profit pipelines.
I urge you to carefully consider the long-term consequences of clinical
practice guidelines that are intended to serve as recommendations and not
mandate for treating physicians. The current restrictive IDSA guidelines and
processes that allow academicians to patent and profit upon technologies
also allow insurance companies to deny patients a right to become healthy
and whole. This is additionally disturbing when we see that some of the
academicians who are also guidelines panelists have conflicts of interest
including patent holdings, and are paid consultants to pharmaceutical and
insurance companies and witnesses in litigation. That some of these
individuals have ongoing vaccine and diagnostic test involvement; as well as
a role in the establishment of "standards" and information dissemination is
intensely troubling when that information denies aspects of illness, as the
IDSA guidelines do for Lyme disease. It is clear that some of these parties
well know the severity of this illness but patently refuse to budge on more
recent opinion. Perhaps this is because they and their associates stand to
lose much if they admit to the truth about this illness. How unfortunate for
those ill with this disease that power, profit, and reputations appear
greater than the welfare of people globally. You have a chance to change
things for Lyme patients for all of history right now, but only if you
choose truthfulness over ongoing censorship for profit and private agendas.
In all fairness to patients who are to benefit from current and future
guidelines, we request full consensus in writing medical guidelines, even
when guidelines are merely recommendations. This process must include all
current research (not just that put forth by a few panelists); everyday
experiences of our treating clinicians, and valuable patient input and
experience - and I thank you for the opportunity to provide such input at
this juncture. It is my hope that this open public input period is truly
meaningful and not just a token conciliatory gesture for patients whereby
the end result will be to nevertheless uphold the 2006 IDSA guidelines that
patients, physicians, and others clearly do not want nor accept as
legitimate. We do not want or need biased, rubber-stamped, disease
dismissing, for-industry guidelines that place profits above human
suffering. And patients will be far more vocal about this the longer it
continues to occur until these practices cease to exist and those held
accountable for these practices when they occur. Illness does not equal
powerlessness, and those who are ill, expect and deserve better than what we
have been spoon-fed from previous clinical practice guidelines for Lyme
disease and some of its panelists.
After all, we are learning the truth about this disease; from study of all
available documents, and from personal experience living with these
infections. From our perspective, the guidelines and some of those who have
been involved with the
diagnostic and vaccine technologies, and who also are grant recipients, and
patent holders, currently appear far from truthful about this growing
epidemic. The current guidelines are inaccurate and reflect a desire to
restrict patient and physician access to life-saving medications and
treatment processes. The unfettered censorship of our physicians by academic
mandate disguised as "recommendations" is most unwelcome in the
patient/doctor relationship, and the toying of our health by insurance
companies who whimsically misinterpret the IDSA guidelines is as dangerous
to human life as Borrelia burgdorferi is, when left untreated or
undertreated.
Clinical trials and controlled studies are necessary aspects of medicine.
However, the practical patient experience has been shifted to the back
burner in favor of academic "expert" opinion and research funding, including
by those who do not see patients, or who occasionally do but who have only a
limited patient sampling with one or two symptom presentations. Adhering to
unilateral thought regarding a limited number of patients in favor of
controlled, funded studies over time is an unrealistic approach that is
woefully out of touch with the clinical experience. An absence of
"scientific" proof is not proof of absence.
Physicians who treat thousands of Lyme patients were, and are summarily
excluded from the IDSA guidelines process, along with a former panelist who
was excused for not agreeing to the "expert" opinion of other IDSA
panelists. (Experts who again, do not have practical real time experience
treating patients in a clinical setting.) The patients are crying out loudly
for these processes to change, for our welfare, and for the future welfare
of all persons yet to be infected with this devastating illness.
To that end, one of my recent books from my Lyme "It's All In Your Head"
series, was recently released, (titled The Baker's Dozen & the Lunatic
Fringe: Has Junk Science Shifted the Lyme Disease Paradigm). I have included
10 copies, one for each panelist to receive and review during this patient
input period. I have collected significant research sources, including
objective peer-reviewed articles, as well as FDA, DoD, NIH, CDC, published
books, CME videotapes, and other sources, and compiled them for patients,
educators, physicians, panelists, and others to review. The book illustrates
also the research behind this disease as previously published by many of the
IDSA panelists. It clearly shows the IDSA guidelines to be at stark odds
with some of the guidelines authors'
own earlier published findings. The fact that earlier claims about the
severity and persistence of Lyme disease by some of these parties do not
reconcile with their current guidelines recommendations leads us to question
the motivations of those who have written them.
That there are tremendous potential conflicts of interest at play does not
escape the public. My book helps to illustrate what some of those important
connections and conflicts may be and how they may be influencing the current
Lyme paradigm. It also closely examines the CDC recommendations set forth at
the 1994
yet apparently simply provided unilateral opinion that appears unsupported
by scientific evidence - opinion that led to a.) the release of what is
considered to have been an unsafe vaccine by virtue of OspA sensitivity,
chronic treatment resistant arthritis of which certain panelists were aware
before the vaccine was released [evidenced by research papers]; and b.) has
also led to the wrongly promoted insensitive diagnostic tests incapable of
detecting most patients who have Lyme disease for many reasons examined;
which has thus led to c.) thousands of people like my family being
misdiagnosed, undiagnosed, and improperly treated for an organism that could
have easily been treated at onset that the IDSA panelists published was
persisting and severe; and d.) the refusal by doctors to continue to treat
patients until symptoms are gone due to restrictive guidelines and fear of
reprisals through medical board actions; and e.) the refusal by disability
and insurance companies to pay for disability and/or treatments while they
conveniently cite IDSA guidelines as mandate and not recommendation in order
to control profit margins.
And since the current IDSA guidelines appear written in a manner supportive
of this kind of discrimination, thousands have been disabled, killed, or
have ended their own lives thanks to intractable pain, severe depression,
discrimination and other factors caused by Lyme disease. If there is no
"illness-for-profit" paradigm in play, then there is no excuse to continue
to defend guidelines that dismiss meaningful research and clinical evidence,
and contraindicate access to life-saving treatments. Lyme disease is a
serious epidemic that requires open-ended treatments with combination
antibiotics to the benefit of patient wellness as long as, and as frequently
as is necessary until symptom resolution. Treatment benefits are nonexistent
under a therapeutic schedule with limited duration that abruptly ends by a
predetermined calendar date. And one which then magically changes all
remaining spirochetes into some "post-Lyme syndrome", a term that is not
only hyperbole and conjecture, but also complete and utter nonsense. I
outline how this is so within my new book which is provided for your review.
That there are those who continue to deny the existence of an organism that
has long been studied by the military in collaboration with academic
institutions as a bio-weapon; and that some of these parties, after
patenting the organisms and processes, now publish contrary to some of their
earlier research on these same organisms, is unconscionable in the public
opinion of mass majority. That some of these parties would also be allowed
to patent, profit and promote these processes by developing vaccines and
insensitive/ineffective diagnostic tools in order to promote a vaccine which
failed; while simultaneously holding patents on tests with a greater ability
to diagnose Lyme patients but refusing to develop these more accurate
processes, is also unthinkable.
Patients are imploring the current panel members to reconsider carefully the
input of patients, their treating physicians and the scientific facts that
have been formerly ignored during previous IDSA guidelines processes. The
true research evidence is in fact present and easily accessible to all who
choose to read same. Lyme disease is serious, persistent, chronic and
debilitating; and even previous IDSA guidelines panelists published these
facts - even if they choose to minimize or flatly ignore their own findings
within past and current guidelines and recent publications. For that reason,
I urge you to read fully, or at the very least, glance carefully at the
sections in my new book that discuss testing, patenting, grant funding, the
guidelines processes, persistence, testing standardization and failures, the
IDSA guidelines inadequacies/errors and the earlier research published by
the IDSA guidelines authors and their associates. Likewise, consider
carefully all submissions by those outside the IDSA academic "club" during
this public input period.
Only when you see the truth about Lyme disease, in the form of the published
research, the patient and the physician clinical experience, the revelations
of conflicts of interests in former panelists, and the extent by which the
paradigm is exploited for profit over patient welfare can you objectively,
mindfully, and responsibly create guidelines that are clearly in the best
interests of the patients they are supposed to serve - something for and
about which, many believe that the former and current IDSA guidelines for
Lyme disease have failed miserably.
It is a tragedy that patients have had to endure the kind of prejudice and
censorship that we have had over the past several decades - at times by the
very parties who are sworn to "first do no harm". We have trusted unfairly
those in the academic world who have had the power to keep us ill in favor
of research funding. We are far more educated about our illness now, with
full awareness of the political and scientific issues.
Sources like the film Under Our Skin, the CT Attorney General's
investigation, and books like mine are helping others to find those truths
and bring them into the spotlight. You merely have to look at them and
consider the impact of forcing populations to remain ill by perpetrating
ongoing myths that nobody believes or is buying except for the minority,
"Baker's Dozen".
I urge you to consider your choices carefully. Patients will no longer stand
idly by and accept what we know is not truthful. With great respect for what
you are about to( undertake, but with the personal experience that this
disease has long afforded me through decades of dealing with same, my
research work and privileges in physician and patient advocacy, I formally
request that you read the content of my new book, and put the patients first
in your guidelines review process.
Remember to "first do no harm". I include on the following pages some
excerpts from my book to facilitate your study - a book with more than 1,060
references. I collected this over a 4.5 year period, while ill, from
publicly accessible sources. My research was included in the CT Attorney
General's anti-trust investigation into the IDSA guidelines, and part of it
was shared with producers of the film Under Our Skin. Of note is that my
books are available and selling internationally through popular book
sellers. This information is not being taken lightly by your peers or by
patients and physicians the world over. And in turn we expect and request
that in a similar manner, that this information not be taken lightly by the
esteemed review panel.
(references, excerpts etc. listed on 2 additional pages not included here)
PJ Langhoff's books, including The Baker's Dozen & the Lunatic Fringe:
Has Junk Science Shifted the Lyme Disease Paradigm, are available at
http://www.amazon.com/ and http://www.allegorypress.com/