(No subject)

[Guest guest]

I send this out every 10 days to 2 weeks for new folks who might not

have seen it.

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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, FMS, Parkinson's

and many others. Please see the open letter appended to the end of this

document. Perhaps you or a loved actually has Chronic Lyme instead of

one the above? If so there is HOPE and a way towards health!

It seems in the world of misdiagnosed Chronic Lyme it's hard to get

antibiotic treatment and if you can its 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 paticular 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 year 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 Canada who sends me a

mailing address.

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

http://www.msadams.com/Lyme/Lyme_Resources.zip. I update this file on

the website at least weekly and it will always 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 form 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.

msadams@...

www.msadams.com

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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

- -

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 Rochester, MN whereby I

was

refused Lyme testing despite my symptoms and lengthy medical history.

Repeatedly I heard " there is no Lyme in Wisconsin "

which was patently ridiculous. Indeed your panelist Yale's Dr.

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 Dearborn criteria, the guidelines formation,

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 Dearborn MI conference that was designed to standardize

testing;

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/