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     The Bakers Dozen & the Lunatic Fringe
The Bakers Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm? by PJ Langhoff  Includes key evidence from the historic CT Attorney General investigation into the IDSA clinical practice guidelines for Lyme disease.


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     DIAGNOSIS AND TREATMENT GUIDLINES
ADVANCED TOPICS IN LYME DISEASE
Guidelines by JOSEPH J. BURRASCANO JR., M.D.
Download PDF File
*************
ILADS Evidence-based Lyme Treatment Guidelines
International Lyme and Associated Diseases Society
Download PDF File

     Translate

     Obituaries
·Remembering Leslie Wermers. Five years ago2013-10-28 18:35:31
·Remembering Leslie Wermers. One year ago today.2009-11-02 20:10:50
·Lyme disease patients mourn passing of well known doctor2009-07-01 04:00:00
·All she lost: My sister's battle with Lyme disease2009-05-19 04:00:00
·Laura Treanor, 19, Lyme disease not ruled as cause of death2009-05-07 04:00:00
·Lila Star Smith Harms, 25, dies from complications of Lyme disease2009-05-05 04:00:00
·Lyme Disease Patients Loses a Hero and Friend2008-11-16 19:57:38
·Nancy L. (Scully) Strayer: March 20, 1946 - March 12, 20082008-04-12 04:00:00
·Bite from tick on holiday led to death leap2008-04-11 06:49:39
·Rugby great, Mike Gregory, loses his battle with Lyme disease2007-11-24 23:51:00
·Missouri teen, 15, dies from Ehrlichiosis2007-09-04 04:00:00
·Steven F. Wells, 45, dies after battle with Lyme disease and ALS2007-08-14 07:03:39
·Bruno C. Malvezzi2007-07-31 21:06:47
·In loving memory of Dr. Edward McNeil2007-07-24 19:45:00
·Lyme disease is a growing problem, Britteny Gallgher, Kansas City, MO2007-05-24 04:10:00
·Lyme Disease Skyrockets In Maryland2007-05-23 04:00:00
·C. Peter Thomas, 46; Sound Engineer2007-05-21 04:00:00
·Jimmy Duarte, gifted musician, charismatic islander, dies at 702007-05-17 15:12:03
·Obituary: Lyme Disease Advocate Karen Johnson ''Rose'' Rose, 1947 - 20072007-04-30 22:50:17
·BETH'S QUEST: Family crusades against Lyme disease2007-04-29 04:00:00
·Tick kit distribution aimed at heading off Lyme disease2007-04-28 12:40:00
·Letter to the Editor: In Memory of Lyme Advocate ''Rose''2007-04-26 11:00:03
·Lyme Advocate ''Rose'' Succumbs to Lyme Disease2007-04-19 18:25:19
·Body of Missing Woman with Lyme Disease Found2007-04-14 21:46:32
·Michael Coers won Pulitzer Prize2007-03-21 10:00:43
·E STREETER IN LYME 'SUICIDE'2007-03-19 12:33:30
·Lost to Lyme Lyme disease facts2007-03-19 04:00:00
·Musician remembered as battler against Lyme disease2007-03-19 04:05:00
·Maine Musician Bill Chinnock Dies2007-03-08 13:45:18
·Obituary - Eric von Schmidt - Singer and painter was in Dylan's circle2007-02-27 11:00:00
·JAMES P. KOCH2007-02-22 00:53:49
·Andrew Spielman, 76, Expert on Insect-Borne Diseases, Dies2006-12-26 04:00:00
·Martin Frank Dumke2006-11-29 04:00:00
·Bill Reynolds: For QB Coen, tragedy lies beneath the surface2006-10-29 04:05:00
·Coen plays on without No. 1 fan2006-10-17 04:00:00
·Librarian was dedicated to students, family2006-09-19 17:02:58
·TORMENT OF BRAIN BUG PROF - Alasdair Crockett2006-09-19 13:43:35
·Widow of Lyme disease victim appeals for help2006-09-18 22:44:57
·Professor commits suicide after catching dementia from tick bite2006-09-17 22:17:12
·Tick talk: Family blames member's death on tickborne illness2006-08-21 04:00:00
·Death of York PA area doctor due to Lyme and ALS2006-04-29 20:40:02
·Emmy-winner Scott Brazil dies of ALS and Lyme disease at 502006-04-22 11:37:59
·Kym Cooper- Dead Woman's Own Letter Tells Her Lyme Disease Story2006-02-05 14:08:53
·Kym Cooper - Worn down by Lyme2006-01-22 01:56:26
·Kym Cooper, 1968-2006, After long battle with Lyme disease2006-01-19 13:51:02
·Tribe leader Francis mourned2006-01-14 18:22:58
·Easton mourns former selectman after fatal accident2005-12-17 13:04:17
·Educator, union leader dies from complications of Lyme disease2005-12-08 09:25:32
·'A TERRIBLE WAY TO GO'2005-10-22 14:39:56
·Leo Bogart, R.I.P. (1921-2005)2005-10-21 15:55:28
·Leo Bogart, 84, Sociologist Who Studied Role of Media in Culture, Is Dead2005-10-21 15:46:44
·Passages: Pat Pepper2005-10-10 01:11:11
·Man loses battle with Lyme disease2005-10-09 10:37:43

[ Read Obituaries ]

     U.S. Army, 1983-1996 Lyme Disease Risk Assessments
U.S. Army, 1983-1996 Lyme Disease Risk Assessments

Table of Contents


 Opinion / Editorial: Distinct pattern of cognitive impairment noted in study of Lyme patients

Opinion / Editorial
Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients Marian Rissenberg PhD & Susan Chambers MD, The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32
From: Melissa Kaplan'sChronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...


Synopsis: This study demonstrates that for the majority of chronic Lyme patients with cognitive complaints, there is in fact a measurable and significant decline in intellectual acuity. The nature and severity of the cognitive impairment is such that it interferes with all aspects of normal functioning: employment, home, marriage, social interactions, and general emotional well-being.


I. Cognitive Characteristics of Chronic Lyme Encephalopathy

On the basis of both a formal neuropsychological study of 49 patients (APA 5/96) and on clinical observation and comprehensive neuropsychological examination of well over 100 patients, a distinct pattern of cognitive impairment occurring chronic Lyme disease can be described. These patients consistently demonstrate deficits in directed, sustained and divided attention, planning and organization of responses, temporal ordering, verbal fluency, abstract reasoning, speed of processing, and motor programming. The overall pattern of intellectual impairment is not unlike that seen with diffuse brain injury, and it most often results in some degree of work-related disability.

Although performance is impaired on measures of cognitive functions associated with specific brain regions -- receptive and expressive language, visuospatial problem solving and memory -- the quality of performance is not suggestive of focal lesions in these areas. Rather, deficits are secondary to impairment of higher level integrative functions, likely mediated by complex neuronal systems. Specifically, the receptive language deficit is secondary to impaired auditory tracking and slowing of mental processing. The expressive language deficit is secondary to impaired word retrieval and response planning, The visuospatial problem solving deficit is secondary to impairment of mental flexibility, conceptualization and the ability to compare and contrast necessary in decision making. Finally, deficits on test of memory function are most often secondary to impairment of the encoding or initial processing of information, which depends on attention, and the retrieval of stored information. The storage of new information, or memory per se, is rarely impaired.

This pattern suggests that cognitive dysfunction in chronic Lyme, while expressed variably across individual patients, results from a common factor -- the breakdown of diffusely represented processes involving both integration and activation, and impacting primarily on attention and reasoning. The fluctuation of impairment over short periods of time suggest that a physiologic rather than a structural mechanism is responsible.

II. Neuropsychological deficits in chronic Lyme disease
(A study presented at the annual meeting of The American Psychiatric Association , May 1996)

The neuro-psychological characteristics of 49 patients with Lyme disease were examined. The study set out to answer three

Posted by Editor on Thursday, January 24 @ 10:49:06 EST (2578 reads)
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 Opinion / Editorial: Did Adam Lanza Have Lyme Disease?

Opinion / Editorial
A Tick-ing Time Bomb?
Did Adam Lanza Have Lyme Disease?
by JESSICA BERNSTEIN

As the nation has been questioning how Adam Lanza could have committed such an unfathomable act, mental health issues have been at the forefront of the discussion. However, knowing that Newtown is located in a highly Lyme-endemic area, many in the Lyme community recognize that neurological lyme disease could be part of the answer to what led to the Connecticut shooting.

Although most people or animals with Lyme or other tick-borne diseases are not violent, a small percentage have demonstrated violent behavior. Many may remember the chimpanzee named Travis who attacked the woman and tore off her face. That chimpanzee had Lyme disease and lived in Connecticut.

Psychiatrist Robert Bransfield, M.D. estimates that aggressive behavior has been a significant issue for ...

Posted by Editor on Saturday, January 12 @ 08:29:44 EST (1833 reads)
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 Opinion / Editorial: Will false claims by Lyme disease associations backfire?

Opinion / EditorialLymeBlog News
Lexington, KY USA
By Mac McDonald, Editor, LymeBlog News

An anatomy of misinformation and Internet harassment by Lyme disease associations
Although researching organizations and Action Alerts is not an easy task, we all need to check the facts before firing off phone calls, faxes and emails to politicians

I would hope that everyone reading this article would know by now that when they receive emails containing false information that they have not really won the Nigerian Lottery, that Microsoft will not really send them thousands of dollars if they forward an email to 8 people, and that the little boy who is dying will not really receive money if they forward the email to everyone they know.  Most of these misinformation emails are familiar to all of us.  These emails are worded in such a way as to motivate the reader to action out of hope of personal gain or a desire to help someone.  The old saying is, "When something sounds too good to be true it usually is."

Recently there has been a rash of misinformation email and Internet campaigns with various political agendas spread by persons representing major political parties.  Unlike the notices above, these email campaigns contain information meant to enrage the reader and motivate them to take action.  These online, political, misinformation campaigns often sound "too bad to be true", but they must be.  How else could someone put them on the Internet? 

There must be laws which require that information on the Internet be factual, right?  Wouldn't someone who spread false information harm their own credibility and, therefore, hurt their own cause?

What follows is this journalist's attempt at dissecting the anatomy of just one such case of a false information campaign: spread using the Internet to one small, special interest group of followers and resulting in well meaning people harassing politicians and spreading a false rumor to everyone they know.

In my opinion, this particular misinformation campaign has damaged the credibility of the perpetrators rather than helping their cause.
In the age of the Internet anyone can claim to be an authority on a subject and quickly spread false rumors to thousands of people
I think I see a formula in most political disinformation campaigns on the Internet:

  • Step 1 of a disinformation campaign: Claim to be speaking for a large number of people.
  • Step 2 of a disinformation campaign: Issue a public statement, press release, media interview or letter that contains false, inflammatory, statements or true statements, intended to be inflammatory, which are not relevant to the subject being discussed.
  • Step 3 of a disinformation campaign: Express indignation and spread emails or Internet announcements, again with false statements or true statements which are not relevant, and ask others to join your fight and spread the word.
  • Step 4 of a disinformation campaign: Use words and terms in your documents that will incite outrage in your Internet audience with false statements or true statements which are not relevant.
  • Step 5 of a disinformation campaign: Keep your attacks simple and include very little, or no, actual explanation of your position. 
  • Step 6 of a disinformation campaign: Make it necessary for the object of your attack to make lengthy, complicated responses or explanations which most people will not understand.
  • Step 7 of a disinformation campaign: If the object of your misinformation campaign: responds, escalate your attack.  Keep repeating the false statements or true statements which are not relevant.
We are looking at an "Action Alert" from someone claiming to represent a national organization.  If the communication contains inflammatory wording and logical accusations the reader is motivated to spread the word to everyone they know and, in the Internet age, that requires little more than clicking on FORWARD in their email program.

If the false "Action Alert" calls for the reader to contact a politician and includes suggested wording for an email, fax, or telephone call it makes that action that much easier.  If the names, phone numbers, fax numbers, and email addresses of the politicians are included it makes it almost an effortless task on the part of the reader to take action.

What if the false information comes from someone who claims to speak for anywhere from 4 to 35 organizations depending on to whom they are making the claim?

SR-133 in New Jersey and Lyme disease:

When New Jersey State Senator Christopher “Kip” Bateman (R-16) decided to sponsor a resolution to urge the Governor to encourage a private business to locate their research center, dedicated to chronic neuroendocrine immune disorders or NEIDs (Senate Resolution no. 133) in the State of New Jersey he must have thought it would be a "slam dunk".

Senator Bateman is a conservative, “Taxpayer Champion” who does not shy away from expressing his opinion on controversial issues.  He has 15 years experience in state government.

But this resolution should not be a controversial issue.  This should not require a lot of the Senator's time or staff resources.  After all, his co-sponsor is from the other side of the aisle, Senator Loretta Weinberg (D-37), so there should not be opposition along party lines.  There should not be any opposition from the federal government, both the National Institute of Health and the Centers for Disease Control and Prevention approve of the research center.  Patient advocate groups should be supportive, after all, the more research into their ailments the better.  Easy job, write the resolution, get it through committee and get a vote to pass it.

Beside, this is not like a bill, this is not trying to pass a law, this is basically asking the Governor to encourage a private industry to locate in the Garden State.  It is good for the economy which is good for his constituents.

I can only imagine the Senator's surprise when he received a letter dated October 6, 2009, from a person claiming to be the president of the "national Lyme Disease Association" (note that national is not capitalized in the letter therefore is not part of the official name of the organization).  This letter is supposedly representing the views of 35 affiliate organizations.  The letter is signed by Patricia V. Smith, President, Lyme Disease Association, Inc.
  • Step 1 of a disinformation campaign: Claim to be speaking for a large number of people.
Smith includes a list of 33 organizations with the name of the ...

Posted by Editor on Tuesday, December 07 @ 03:00:00 EST (5168 reads)
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 Opinion / Editorial: NatCapLyme: Don't let IDSA be only voice at workshop!

Lyme ResearchLymeBlog News
Lexington, KY
By LymeBlog News Staff

September 23, 2010

Dear Lyme Community:

As you know, some Lyme advocates have chosen to pull out of the IOM Lyme Disease workshop http://www.iom.edu/Activities/Disease/TickBorne.aspx. They are legitimately concerned that the agenda is heavily biased against the patients’ interest.  We respect their concerns and their decision to pull out of the workshop.  However, upon careful consideration, we have decided to participate in the IOM workshop to represent the Lyme patient’s perspective and show support for our presenters.  While we have our own reservations, we are working hard to improve the agenda. Here are some facts and thoughts to consider in making your own decision:
  1. The IOM Lyme workshop is not a forum to debate whose science is right or wrong.  It is, rather, an assessment of the state of the science as presented from all points of view, for the purpose of determining the science and research still needed.  This workshop is not designed to draw conclusions, but to determine where future research needs to go.
  2. If Lyme patients and Lyme doctors fail to participate, the only perspective presented will be that of the IDSA.  If our Lyme doctors and advocates don’t participate, the committee can’t include them in the record and it will appear in the report as if we don’t exist or care.
  3. The IOM committee will accept comments for the record up to 3 or 4 days after the workshop.  If you don’t know what was said at the workshop, you cannot draw intelligent comments.
  4. Clinicians will have a microphone reserved solely for their use, with extra time allocated to their questions or comments which will be included in the final report. Lyme doctor participation is critical or the IDSA clinicians will be the only ones at the microphone and on record.
  5. A Congressman worked hard for the appropriation to fund this project. Abandoning this workshop is abandoning him, and will compromise his future ability to argue successfully for Lyme patients in Congress. This Representative needs Lyme community support at this workshop. We cannot “burn our Congressional bridges” with the very people who are critical to our cause.
  6. When you withdraw from the Washington process, you won’t be asked back again. Each time this happens, we lose our ability to be taken seriously.  History shows that progress is made when we work within the system, not when we abandon it. Admittedly, it is by nature, a long and arduous process.
Bottom line: the workshop will proceed with or without our community; without representation we concede to the IDSA.  We can’t let that happen!  If the situation warrants it, there will be time to write a minority report. Please attend this workshop and explain your views on the gaps in science and the research you think is needed.  For example, the gaps in diagnosis that caused your disease to go unrecognized; the lack of uniformity in approaches of the states; the problem of underreporting; the unreliability of testing and the other issues you believe should be addressed by the science.

Thank you,
Monte L. Skall
Executive Director, the National Capital Lyme & Tick-Borne Disease Association
 
Linda Lobes
President, Michigan Lyme Disease Association
 
Lisa Torrey
President, National Tick-Borne Disease Advocates
 
Judith Weeg
President, Lyme Disease United Coalition
    Affiliates:
    Lyme Disease Association of Iowa
    Minnesota Lymefighter’s Advocacy
    Nebraska LDUC
    Ohio LDUC
    South Dakota LDUC
    Nevada LDUC
    Indiana LDUC
    Kansas Lymefighters, Inc.
    Oklahoma LDUC
    Washington (State) LDUC
    North Dakota LDUC
    In the Lyme Light, MN LDUC
    Wright County Minnesota LDUC
    Georgia LDUC
    Annondale MN LDUC
 
Tracie Schissel
Chairman, Minnesota Lyme Fighter’s Advocacy
Vice President, Lyme Disease United Coalition
 
Tina J. Garcia
Founder, Lyme Education Awareness Program

Mac McDonald
Editor, LymeBlog News



Note: By the Editor
  • This letter is regarding the: Lyme Disease and Other Tick-Borne Diseases: The State of Science

  • Activity Description
  • At the request of the NIH, National Institute of Allergy and Infectious Diseases, the IOM will convene a committee to plan and conduct a scientific workshop to assess the state of the science of Lyme and other tick-borne diseases. The workshop will represent the broad spectrum of scientific views on Lyme disease and should provide a forum for public participation and input from individuals with Lyme disease as requested in congressional appropriations report language in House Committee Report 111-120 and Senate Committee Report 111-66. The product to be delivered will be a committee authored meeting summary that highlights workshop presentations and discussions.


Posted by Editor on Friday, September 24 @ 13:05:48 EDT (2226 reads)
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 Opinion / Editorial: Lyme disease film ''Under Our Skin'': UNDER OUR SKIN makes the Oscar “short list

Opinion / EditorialLymeBlog News
Lexington, KY USA
By LymeBlog News Staff



The Academy of Motion Picture Arts and Sciences today announced that UNDER OUR SKIN was selected as one of the 15 finalists competing for “Best Documentary Feature” in the 82nd Academy Awards®.

Unfolding like a real-life thriller, UNDER OUR SKIN exposes the hidden epidemic of Lyme disease and reveals how our corrupt medical system is failing to address one of the most serious illnesses of our time. Open Eye Pictures is thrilled that the Academy has honored the courageous Lyme patients and physicians whose stories are told in this film. And we hope that this nomination will help spread awareness about this devastating disease and serve as a catalyst for fixing our country’s broken health care system.

The Documentary Branch Screening Academy Committee viewed all eighty-nine qualifying documentaries during the preliminary round of voting. Academy members will now select five nominees from among the 15 titles on the shortlist, and Academy Awards nominations will be announced on Tuesday, February 2, 2010.



Director’s Statement

My journey into the depths of the Lyme disease controversy started by accident. A friend of mine in San Francisco was getting sicker and sicker with severe and progressive neurological illness. She was first diagnosed with multiple sclerosis, and then ALS or Lou Gehrig’s disease (which is basically a death sentence). But she kept looking for possible explanations and, finally, was diagnosed with Lyme disease. Lyme disease?! I recalled that my twin sister in Upstate New York suffered from it years ago. I remember she was always tired and achy, even though she looked just fine. So I never took it seriously, like most people, and I believed it was just an East Coast disease, if a real disease at all.

So I was shocked that Lyme disease could be so debilitating, even life-threatening. I discovered that the prevalence of Lyme disease in the U.S. may be at least ten times greater than HIV, West Nile virus (and now swine flu) combined. Like its genetic cousin, the "great imitator" syphilis, it mimics other illnesses, including chronic fatigue, fibromyalgia, rheumatoid arthritis, lupus, MS, ALS, Alzheimer's and autism. I learned it could be transmitted from mother to child in utero and that sexual transmission has not been ruled out.


 	
Lyme patient Marlena Connors suffers a seizure in UNDER OUR SKIN
Photo: Under Our Skin

Lyme patient Marlena Connors suffers a seizure in UNDER OUR SKIN
Photo: UNDER OUR SKIN

Ben Petrick, once a Major League player, is now sidelined by Lyme disease
Photo: UNDER OUR SKIN

Ben Petrick, once a Major League player, is now sidelined by Lyme disease

Sean Cobb tends to his wife Mandy Hughes as she suffers a seizure
Photo: UNDER OUR SKIN

Sean Cobb tends to his wife Mandy Hughes as she suffers a seizure

Jordan Fisher Smith surveys his medications
Photo:UNDER OUR SKIN

Jordan Fisher Smith surveys his medications

UNDER OUR SKIN  Senior Producer Kris Newby and filmmaker Andy Abrahams Wilson receive trophies at the International Health & Medical Media Awards
Photo: UNDER OUR SKIN

UNDER OUR SKIN Senior Producer Kris Newby and filmmaker Andy Abrahams Wilson receive trophies at the International Health & Medical Media Awards.
Photo: UNDER OUR SKIN

Under Our Skin
Directed by Andy Abrahams Wilson
See below for August showings
Runtime: 103 min.



Worse still: standard tests seem hopelessly inaccurate, and most physicians are untrained to diagnose or treat the illness. Furthermore, physicians who do take on chronic Lyme patients risk the suspension of their medical licenses. On the patient side, I found variations of the same story repeated thousand-fold: doctor after doctor, years of misdiagnoses, hundreds of thousands of dollars exhausted, denial of insurance coverage, accusations of hypochondria and, finally if ever, a long road back to health.

What was going on? What if my friend had stopped after the ALS diagnosis? Would she still be alive today? What if my sister didn’t persevere until she proved wrong those (like myself) who thought it was all in her head? Sometimes I think the film is my way of making penance for the way I treated my sister when she was sick. After all, William Osler, considered to be the father of modern medicine, once said, "If you listen carefully to the patient they will tell you the diagnosis." Our patriarchal, good-old-boy medical system is coming up against its limits of knowledge and arrogance, threatened by "internet activists" (mostly women) who are taking their family's healthcare into their own hands, sharing community and resources, and demanding help.

After four years of research and production—and over 375 hours of footage, what we uncovered is a chilling tale of microbes, medicine and money. Deregulation of scientific research and conflicts of interest in medicine are poisoning healthcare, denying our citizens health, and costing our citizenry profound loss of productivity and resources. We need an overhaul of our medical research, health delivery and insurance systems. Lyme disease is the canary in the coalmine and a case study for what's wrong and needs to be fixed. UNDER OUR SKIN is an essential contribution to the current national debate about healthcare reform.

Posted by Editor on Wednesday, November 18 @ 22:32:12 EST (4337 reads)
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