Free Lyme Resourcs CD

[Guest guest]

I send this out every 10 days to 2 weeks for new folks who might not have seen it. Sorry to spam but its the easiest way I know to let newcomers hear about it.

This was last sent 7/20/09

---------

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 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 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. If possible please have it in your email in 3 or 4 lines so I can do a quick copy and paste. For example:

Please send me your free Lyme Resource Cd to: 706 Walnut Dell RdPlatteville WI 53818

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:

http://www.msadams.com/Lyme/Lyme_Resources.zip

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.

msadams@...www.msadams.com

----------------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 newbook The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted theLyme Disease Paradigm? as well as a 5 page letter including excerpts andreferences for the panelists to review. Here is the basic text of theletter. -- 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 13years for an accurate diagnosis of Lyme disease despite nearly 100 physicianand ER visits. This unnecessary delay occurred despite the fact that Iremoved ticks from myself and my then toddlers and we had bull's-eye rashesand other acute Lyme symptoms. Over time I progressively lost physical ability to the point of being unableto walk, work, drive, think, use the left side of my body, etc. I sufferedintractable pain for years. My family and I were sick all of our livesbecause no doctors would touch the words "Lyme disease". One physician toldme behind closed doors he was "not allowed to diagnose" Lyme patients, or put the words "Lyme disease" in patient charts for fear ofreprisals. I spent 10 days at the Mayo clinic in Rochester, MN whereby I wasrefused 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. Durayperformed tick surveys on WI military bases around the time my family wasmost recently bitten (in the 1990s). Reports indicated that areas of WI wereLyme endemic at that time. Note I lived just 2 hours from one of thoseendemic bases. It is felt that my parents, siblings, and probably childrenalso have Lyme, acquired congenitally. Many of us have been re-bitten andhave active Lyme infections and progressing symptoms despite repeatedantibiotic treatments.

Later on, as if chronic illness was not enough of an insult to my family, Iwas forced to fight over 12 years in family court to retain custody of mychildren post-divorce, yet eventually lost all parental rights in short,simply because I had Lyme disease. That occurred despite expert physicianwitnesses and laboratory tests clearly showing my family Lyme positive, evenby CDC standards. One judge said I didn't "look sick". One of my childrenended up in a psychiatric ward for observation due to Lyme induceddepression. We have lost homes, jobs, reputations, finances; filedbankruptcy, fought disability providers, and insurers just to getmedications and treatments that were life-saving, covered; and most werepaid out-of-pocket. I have had to endure years of oral antibiotics that donot work, fulminant symptoms, intramuscular and IV therapies, surgicaloperations, the loss of several organs, and CNS, joint, and brain invasionby organisms that could have been successfully treated at onset if thosewhom have been holding the purse strings of information censorship had beenspeaking the truth about spirochetal infections; instead of silencing agrowing epidemic in exchange for what has appeared to be profiteering andnotoriety.

I have fought hard to defend Lyme treating physicians because of what themedical boards are doing to them (pulling their licenses or othersanctions) because they dare to treat patients outside IDSA "standards" of care that are no one's standards - "standards" that are merelyrecommendations, and which clearly do not work. This is a tragic situationwhen our own physicians cannot treat patients in favor of insurancecompanies or a handful of powerful academicians who dictate medical dogma,the former without a license, the latter without practical clinicalexperience. Corporatized medicine serves no one except the profiteers; andcertainly not the ill patient populations.

Sadly, our family's tragic situation is not unique. I contend that ifrestrictive Lyme disease medical guidelines such as those promulgatedunilaterally by the IDSA in 2000 and again in 2006, which deny aspects ofthis illness and minimize others, are allowed to proliferate, then morefamilies will be facing the kinds of tragic destruction, discrimination anddenial that our family has unnecessarily and unjustly, but for the sake ofresearch dollars and promoting for-profit pipelines.

I urge you to carefully consider the long-term consequences of clinicalpractice guidelines that are intended to serve as recommendations and notmandate for treating physicians. The current restrictive IDSA guidelines andprocesses that allow academicians to patent and profit upon technologiesalso allow insurance companies to deny patients a right to become healthyand whole. This is additionally disturbing when we see that some of theacademicians who are also guidelines panelists have conflicts of interestincluding patent holdings, and are paid consultants to pharmaceutical andinsurance companies and witnesses in litigation. That some of theseindividuals have ongoing vaccine and diagnostic test involvement; as well asa role in the establishment of "standards" and information dissemination isintensely troubling when that information denies aspects of illness, as theIDSA guidelines do for Lyme disease. It is clear that some of these partieswell know the severity of this illness but patently refuse to budge on morerecent opinion. Perhaps this is because they and their associates stand tolose much if they admit to the truth about this illness. How unfortunate forthose ill with this disease that power, profit, and reputations appeargreater than the welfare of people globally. You have a chance to changethings for Lyme patients for all of history right now, but only if youchoose truthfulness over ongoing censorship for profit and private agendas.

In all fairness to patients who are to benefit from current and futureguidelines, we request full consensus in writing medical guidelines, evenwhen guidelines are merely recommendations. This process must include allcurrent research (not just that put forth by a few panelists); everydayexperiences of our treating clinicians, and valuable patient input andexperience - and I thank you for the opportunity to provide such input atthis juncture. It is my hope that this open public input period is trulymeaningful and not just a token conciliatory gesture for patients wherebythe end result will be to nevertheless uphold the 2006 IDSA guidelines thatpatients, physicians, and others clearly do not want nor accept aslegitimate. We do not want or need biased, rubber-stamped, diseasedismissing, for-industry guidelines that place profits above humansuffering. And patients will be far more vocal about this the longer itcontinues to occur until these practices cease to exist and those heldaccountable for these practices when they occur. Illness does not equalpowerlessness, and those who are ill, expect and deserve better than what wehave been spoon-fed from previous clinical practice guidelines for Lymedisease and some of its panelists.

After all, we are learning the truth about this disease; from study of allavailable documents, and from personal experience living with theseinfections. From our perspective, the guidelines and some of those who havebeen involved with the Dearborn criteria, the guidelines formation,diagnostic and vaccine technologies, and who also are grant recipients, andpatent holders, currently appear far from truthful about this growingepidemic. The current guidelines are inaccurate and reflect a desire torestrict patient and physician access to life-saving medications andtreatment processes. The unfettered censorship of our physicians by academicmandate disguised as "recommendations" is most unwelcome in thepatient/doctor relationship, and the toying of our health by insurancecompanies who whimsically misinterpret the IDSA guidelines is as dangerousto human life as Borrelia burgdorferi is, when left untreated orundertreated.

Clinical trials and controlled studies are necessary aspects of medicine.However, the practical patient experience has been shifted to the backburner in favor of academic "expert" opinion and research funding, includingby those who do not see patients, or who occasionally do but who have only alimited patient sampling with one or two symptom presentations. Adhering tounilateral thought regarding a limited number of patients in favor ofcontrolled, funded studies over time is an unrealistic approach that iswoefully 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 summarilyexcluded from the IDSA guidelines process, along with a former panelist whowas excused for not agreeing to the "expert" opinion of other IDSApanelists. (Experts who again, do not have practical real time experiencetreating patients in a clinical setting.) The patients are crying out loudlyfor these processes to change, for our welfare, and for the future welfareof 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 LunaticFringe: Has Junk Science Shifted the Lyme Disease Paradigm). I have included10 copies, one for each panelist to receive and review during this patientinput period. I have collected significant research sources, includingobjective peer-reviewed articles, as well as FDA, DoD, NIH, CDC, publishedbooks, CME videotapes, and other sources, and compiled them for patients,educators, physicians, panelists, and others to review. The book illustratesalso the research behind this disease as previously published by many of theIDSA panelists. It clearly shows the IDSA guidelines to be at stark oddswith some of the guidelines authors' own earlier published findings. The fact that earlier claims about theseverity and persistence of Lyme disease by some of these parties do notreconcile with their current guidelines recommendations leads us to questionthe motivations of those who have written them.

That there are tremendous potential conflicts of interest at play does notescape the public. My book helps to illustrate what some of those importantconnections and conflicts may be and how they may be influencing the currentLyme paradigm. It also closely examines the CDC recommendations set forth atthe 1994 Dearborn MI conference that was designed to standardize testing;yet apparently simply provided unilateral opinion that appears unsupportedby scientific evidence - opinion that led to a.) the release of what isconsidered to have been an unsafe vaccine by virtue of OspA sensitivity,chronic treatment resistant arthritis of which certain panelists were awarebefore the vaccine was released [evidenced by research papers]; and b.) hasalso led to the wrongly promoted insensitive diagnostic tests incapable ofdetecting most patients who have Lyme disease for many reasons examined;which has thus led to c.) thousands of people like my family beingmisdiagnosed, undiagnosed, and improperly treated for an organism that couldhave easily been treated at onset that the IDSA panelists published waspersisting and severe; and d.) the refusal by doctors to continue to treatpatients until symptoms are gone due to restrictive guidelines and fear ofreprisals through medical board actions; and e.) the refusal by disabilityand insurance companies to pay for disability and/or treatments while theyconveniently cite IDSA guidelines as mandate and not recommendation in orderto control profit margins.

And since the current IDSA guidelines appear written in a manner supportiveof this kind of discrimination, thousands have been disabled, killed, orhave 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 continueto defend guidelines that dismiss meaningful research and clinical evidence,and contraindicate access to life-saving treatments. Lyme disease is aserious epidemic that requires open-ended treatments with combinationantibiotics to the benefit of patient wellness as long as, and as frequentlyas is necessary until symptom resolution. Treatment benefits are nonexistentunder a therapeutic schedule with limited duration that abruptly ends by apredetermined calendar date. And one which then magically changes allremaining spirochetes into some "post-Lyme syndrome", a term that is notonly hyperbole and conjecture, but also complete and utter nonsense. Ioutline 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 thathas long been studied by the military in collaboration with academicinstitutions as a bio-weapon; and that some of these parties, afterpatenting the organisms and processes, now publish contrary to some of theirearlier research on these same organisms, is unconscionable in the publicopinion of mass majority. That some of these parties would also be allowedto patent, profit and promote these processes by developing vaccines andinsensitive/ineffective diagnostic tools in order to promote a vaccine whichfailed; while simultaneously holding patents on tests with a greater abilityto diagnose Lyme patients but refusing to develop these more accurateprocesses, is also unthinkable.

Patients are imploring the current panel members to reconsider carefully theinput of patients, their treating physicians and the scientific facts thathave been formerly ignored during previous IDSA guidelines processes. Thetrue research evidence is in fact present and easily accessible to all whochoose to read same. Lyme disease is serious, persistent, chronic anddebilitating; and even previous IDSA guidelines panelists published thesefacts - even if they choose to minimize or flatly ignore their own findingswithin past and current guidelines and recent publications. For that reason,I urge you to read fully, or at the very least, glance carefully at thesections in my new book that discuss testing, patenting, grant funding, theguidelines processes, persistence, testing standardization and failures, theIDSA guidelines inadequacies/errors and the earlier research published bythe IDSA guidelines authors and their associates. Likewise, considercarefully all submissions by those outside the IDSA academic "club" duringthis public input period.

Only when you see the truth about Lyme disease, in the form of the publishedresearch, the patient and the physician clinical experience, the revelationsof conflicts of interests in former panelists, and the extent by which theparadigm is exploited for profit over patient welfare can you objectively,mindfully, and responsibly create guidelines that are clearly in the bestinterests of the patients they are supposed to serve - something for andabout which, many believe that the former and current IDSA guidelines forLyme disease have failed miserably.

It is a tragedy that patients have had to endure the kind of prejudice andcensorship that we have had over the past several decades - at times by thevery parties who are sworn to "first do no harm". We have trusted unfairlythose in the academic world who have had the power to keep us ill in favorof research funding. We are far more educated about our illness now, withfull awareness of the political and scientific issues. Sources like the film Under Our Skin, the CT Attorney General'sinvestigation, and books like mine are helping others to find those truthsand bring them into the spotlight. You merely have to look at them andconsider the impact of forcing populations to remain ill by perpetratingongoing 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 standidly by and accept what we know is not truthful. With great respect for whatyou are about to( undertake, but with the personal experience that thisdisease has long afforded me through decades of dealing with same, myresearch work and privileges in physician and patient advocacy, I formallyrequest that you read the content of my new book, and put the patients firstin your guidelines review process. Remember to "first do no harm". I include on the following pages someexcerpts from my book to facilitate your study - a book with more than 1,060references. I collected this over a 4.5 year period, while ill, frompublicly accessible sources. My research was included in the CT AttorneyGeneral's anti-trust investigation into the IDSA guidelines, and part of itwas shared with producers of the film Under Our Skin. Of note is that mybooks are available and selling internationally through popular booksellers. This information is not being taken lightly by your peers or bypatients and physicians the world over. And in turn we expect and requestthat in a similar manner, that this information not be taken lightly by theesteemed 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 athttp://www.amazon.com/ and http://www.allegorypress.com/