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| DIAGNOSIS AND TREATMENT GUIDLINES|
|ADVANCED TOPICS IN LYME DISEASE
*************ILADS Evidence-based Lyme Treatment Guidelines
|·Remembering Leslie Wermers. Five years ago||2013-10-28 18:35:31|
|·Remembering Leslie Wermers. One year ago today.||2009-11-02 20:10:50|
|·Lyme disease patients mourn passing of well known doctor||2009-07-01 04:00:00|
|·All she lost: My sister's battle with Lyme disease||2009-05-19 04:00:00|
|·Laura Treanor, 19, Lyme disease not ruled as cause of death||2009-05-07 04:00:00|
|·Lila Star Smith Harms, 25, dies from complications of Lyme disease||2009-05-05 04:00:00|
|·Lyme Disease Patients Loses a Hero and Friend||2008-11-16 19:57:38|
|·Nancy L. (Scully) Strayer: March 20, 1946 - March 12, 2008||2008-04-12 04:00:00|
|·Bite from tick on holiday led to death leap||2008-04-11 06:49:39|
|·Rugby great, Mike Gregory, loses his battle with Lyme disease||2007-11-24 23:51:00|
|·Missouri teen, 15, dies from Ehrlichiosis||2007-09-04 04:00:00|
|·Steven F. Wells, 45, dies after battle with Lyme disease and ALS||2007-08-14 07:03:39|
|·Bruno C. Malvezzi||2007-07-31 21:06:47|
|·In loving memory of Dr. Edward McNeil||2007-07-24 19:45:00|
|·Lyme disease is a growing problem, Britteny Gallgher, Kansas City, MO||2007-05-24 04:10:00|
|·Lyme Disease Skyrockets In Maryland||2007-05-23 04:00:00|
|·C. Peter Thomas, 46; Sound Engineer||2007-05-21 04:00:00|
|·Jimmy Duarte, gifted musician, charismatic islander, dies at 70||2007-05-17 15:12:03|
|·Obituary: Lyme Disease Advocate Karen Johnson ''Rose'' Rose, 1947 - 2007||2007-04-30 22:50:17|
|·BETH'S QUEST: Family crusades against Lyme disease||2007-04-29 04:00:00|
|·Tick kit distribution aimed at heading off Lyme disease||2007-04-28 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 Disease||2007-04-19 18:25:19|
|·Body of Missing Woman with Lyme Disease Found||2007-04-14 21:46:32|
|·Michael Coers won Pulitzer Prize||2007-03-21 10:00:43|
|·E STREETER IN LYME 'SUICIDE'||2007-03-19 12:33:30|
|·Lost to Lyme Lyme disease facts||2007-03-19 04:00:00|
|·Musician remembered as battler against Lyme disease||2007-03-19 04:05:00|
|·Maine Musician Bill Chinnock Dies||2007-03-08 13:45:18|
|·Obituary - Eric von Schmidt - Singer and painter was in Dylan's circle||2007-02-27 11:00:00|
|·JAMES P. KOCH||2007-02-22 00:53:49|
|·Andrew Spielman, 76, Expert on Insect-Borne Diseases, Dies||2006-12-26 04:00:00|
|·Martin Frank Dumke||2006-11-29 04:00:00|
|·Bill Reynolds: For QB Coen, tragedy lies beneath the surface||2006-10-29 04:05:00|
|·Coen plays on without No. 1 fan||2006-10-17 04:00:00|
|·Librarian was dedicated to students, family||2006-09-19 17:02:58|
|·TORMENT OF BRAIN BUG PROF - Alasdair Crockett||2006-09-19 13:43:35|
|·Widow of Lyme disease victim appeals for help||2006-09-18 22:44:57|
|·Professor commits suicide after catching dementia from tick bite||2006-09-17 22:17:12|
|·Tick talk: Family blames member's death on tickborne illness||2006-08-21 04:00:00|
|·Death of York PA area doctor due to Lyme and ALS||2006-04-29 20:40:02|
|·Emmy-winner Scott Brazil dies of ALS and Lyme disease at 50||2006-04-22 11:37:59|
|·Kym Cooper- Dead Woman's Own Letter Tells Her Lyme Disease Story||2006-02-05 14:08:53|
|·Kym Cooper - Worn down by Lyme||2006-01-22 01:56:26|
|·Kym Cooper, 1968-2006, After long battle with Lyme disease||2006-01-19 13:51:02|
|·Tribe leader Francis mourned||2006-01-14 18:22:58|
|·Easton mourns former selectman after fatal accident||2005-12-17 13:04:17|
|·Educator, union leader dies from complications of Lyme disease||2005-12-08 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 Dead||2005-10-21 15:46:44|
|·Passages: Pat Pepper||2005-10-10 01:11:11|
|·Man loses battle with Lyme disease||2005-10-09 10:37:43|
[ Read Obituaries ]
| U.S. Army, 1983-1996 Lyme Disease Risk Assessments|
|| People don't understand lyme disease|
Lexington, KY USA
June 1, 2014
by Julie Newland
Delaware, OH: I hesitated writing this. Then I realized I must.
Many of you might know me or know of me. Marion (Ohio) was my home for my life. I was very active there in food drives and politics. I tried to help my town. I was energetic, happy and never still. Then one day, it began to change.
Imagine losing your balance, getting vision problems, severe joint and muscle pain, stiffness, and having tremors and twitching like mad. You also lose a lot of cognitive abilities. I went from ballroom dancing to being home and needing help within a year. I was at the top hospitals in Ohio. I saw so many neurologists, cardiologists and other doctors. No one had an answer. They had ideas, but none proved to ...
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|| Opinion / Editorial: Distinct pattern of cognitive impairment noted in study of Lyme patients|
|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
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|| Report on the IOM Meeting Regarding Lyme Disease|
“Medical progress should no longer be impeded by the polarizing controversy that has characterized Lyme disease research in the past. The dialogue must continue and encourage mutually respectful collaboration across scientific disciplines and among researchers, clinicians and patients, even when view points differ, if we are to make progress.”
(Gregg Skall, Womble Carlyle Sandridge & Rice, PLLC)
Report on the IOM Meeting Regarding Lyme Disease
Lexington, KY USA
From: National Capital Lyme & Tick-Borne Disease Association
Phone & fax: 703-821-8833
– Thursday, April 21, 2011. The Institute of Medicine (IOM) released their report on April 20, 2011, on “The Critical Needs and Gaps in Understanding Prevention, Amelioration and Resolution of Lyme and Other Tick-Borne Diseases.” The report confirmed what Lyme patients have known for years – that Lyme disease is a serious illness, and significant gaps remain in our understanding of the disease.
At the request of the National Institute of Allergy and Infectious Diseases (NIAID), the IOM was entrusted to plan and hold a two-day workshop to assess the state of the science of Lyme and other tick-borne diseases. A committee was formed, which provided a forum for broad scientific and public input, and produced a summary report on the critical needs and gaps in research.
Although we share the concern with many in the Lyme community that treatment was not included in this workshop, we are pleased that other critical themes were addressed. The National Capital Lyme Disease Association (NatCapLyme) would like to thank the IOM for completing this arduous task with integrity within the guidelines they were charged to respect.
Pamela Weintraub’s powerful presentation at the IOM workshop last October made a notable impression on the IOM Committee. In its preface, the IOM Committee wrote: “Pamela Weintraub spoke eloquently about her personal experience and her family’s challenges with Lyme Disease.” Echoing Pamela Weintraub’s call for research, the IOM report states that “a new environment of trust and a better environment for more constructive dialogue [is required] to help focus research needs and achieve better outcomes.”
We commend the IOM for so effectively establishing the convergence of science with real-life situations and highlighting both the need for more scientific knowledge and the serious societal challenges that need to be addressed.
Importantly, the IOM Committee noted that “the burden of disease is a growing concern.” The Committee recognized that “tick-borne diseases (TBDs) represent some of the world’s most rapidly expanding arthropod-borne infectious diseases, yet significant gaps remain in our understanding and knowledge about them.” Some of the themes discussed in the IOM report suggesting greater emphasis and more research are:
· A national integrated research plan for advancing the science on tick-borne diseases;
· A long-term study of Lyme disease and other TBD patients; Educational programs for the public;
· The current status of diagnostic tests and biomarkers for tick-borne diseases;
· Biorepositories for tick-borne diseases; Biological understanding of persistent symptoms;
· The impact of coinfection in severity of human TBDs;
· The role of immune response to tick-borne infection and its effect on bacterial load and disease manifestations;
· Animal models that explore mechanisms of pathogen persistence following antibiotic treatment.
A diverse group of scientists and physicians with expertise in tick-borne infections discussed a breadth of scientific topics. Some profound insights shared by several of these presenters include:
· “Science is not belief, but the will to find out” (Benjamin J. Luft, M.D.)
· “Everyone is studying the early stage of this infection, no one is studying the persistent phase of this infection.” (Stephen Barthold, D.V.M., Ph.D.)
· “You do not require an antibody response to develop this disease” (Janis J.Weis, Ph.D.)
· “Treat the patient, not the test” (Juan Olano, M.D.)
· “[For the child] long-term effects last 50-70 years” (Richard F. Jacobs, M.D.)
· “…the poor understanding of the true incidence and geographical distribution…I don’t think we have a clue” (Richard F. Jacobs, M.D.)
· “How can you say, ‘I’ve treated you for four weeks and therefore you no longer have Lyme disease.’ The fact is, we don’t know!” (Sam T. Donta, M.D.)
· “Under-powered studies which purport to demonstrate universal efficacy need to be viewed with circumspection” (Sam T. Donta, M.D.)
· “All that shouting drowns out all the complexity and the nuance and the work that needs to be done” (Pamela Weintraub, senior editor at Discover magazine, and author of Cure Unknown: Inside the Lyme Epidemic)
In addition to thanking all the presenters, we want to express our gratitude to the Lyme community for supporting our effort to see this workshop through. The thousands of Lyme patients who responded to our surveys and allowed their stories to be shared in “The Human Dimension of Lyme and Other Tick-Borne Diseases: The Patient’s Perspective,” the NatCapLyme paper commissioned by the IOM, provided a valuable contribution to the IOM workshop and report.http://www.iom.edu/Reports/2011/Critical-Needs-and-Gaps-in-Understanding-Prevention-Amelioration-and-Resolution-of-Lyme-and-Other-Tick-Borne-Diseases.aspx
We strongly urge each of you to continue the process that IOM initiated by reading the IOM report so that you can extract from these works what is beneficial to your specific case in your quest to achieve wellness and to overcome the negative effects of Lyme disease. http://www.iom.edu/Reports/2011/Critical-Needs-and-Gaps-in-Understanding-Prevention-Amelioration-and-Resolution-of-Lyme-and-Other-Tick-Borne-Diseases.aspx
The IOM workshop brings us another step closer to improving the lives of Lyme patients and their families who have been profoundly impacted by tick-borne infections, and who have been caught in the crossfire of opposing views for such a long time. The next logical step is collaboration between all stake holders to fill in the gaps uncovered in this workshop concerning diagnosis, addressing the topic of treatment, and the need for a consistency of language in discussing Lyme disease. “Medical progress should no longer be impeded by the polarizing controversy that has characterized Lyme disease research in the past. The dialogue must continue and encourage mutually respectful collaboration across scientific disciplines and among researchers, clinicians and patients, even when view points differ, if we are to make progress.” (Gregg Skall, Womble Carlyle Sandridge & Rice, PLLC)
We implore Congress to fund and the IOM to convene a second workshop that would address research needs for effective treatment for persistent Lyme disease.
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|| Opinion / Editorial: Will false claims by Lyme disease associations backfire?|
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
- 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
- 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.
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.
- 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.
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.
Smith includes a list of 33 organizations with the name of the ...
- Step 1 of a disinformation campaign: Claim to be speaking for a large number of people.
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