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But You

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52 Page Booklet for Friends and Family. What to Say, What Not to Say and How to Help!

 

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Lyme Disease Information Links

"Lyme disease (LD) is a multi-system bacterial infection caused by a the spirochete Borrelia burgdoferi (Bb). The pathogen was named in honor of the discoverer and a founding board member of the Lyme Disease Foundation, Willy Burgdorfer, PhD, MD (hon). Research has proven that the bacterium that causes Lyme disease has been in the U.S. for over 100 years. These spirochetes are maintained in nature in the bodies of wild animals and is transmitted from one animal to another through the bite of an infective tick. Humans and pets are incidental hosts to ticks. The body does not maintain a natural immunity to the disease. Thus, a person can be re-infected with the disease on subsequent tick bites." Lyme Disease Foundation, Inc. www.Lyme.org

NEWSFLASH 5/1/08: CT Attorney General Blumenthal settled case with IDSA

regarding Lyme Dx and treatment guidelines. More Info

 

Note: IDA does not endorse or recommend any links,

websites or legal groups posted on our site. Please use with your own discretion.

DISABILITY ISSUES:

Unable to work? You may qualify for

the disability benefits you already paid for.

 

Allsup gets what you're going through. We understand the many challenges which accompany a mental and physical disability. With all the worries and stresses that your condition brings, you can sleep easy knowing that Allsup will take care of getting the Social Security disability you deserve. Our 97% success rate is proof of that [Information from Allsup, Inc].

 

Yes, I want a free evaluation to determine my eligibility. Click Here

THE DISABILITY BENEFIT INFORMATION LINKS PAGE! Click Here

THE DISABILITY ISSUES AND WEBSITES LINKS PAGE! Click Here

THE DISABILITY PRODUCTS AND SERVICES LINKS PAGE! Click Here

LYME WEBSITES:

International Lyme and Associated Diseases Society*  www.ilads.org

 

Lots Of Links On Lyme Disease  www.geocities.com/HotSprings/Oasis/6455/lyme-links.html

Lyme Disease Association* (LD Doctor Referrals) www.lymediseaseassociation.org

Lyme Disease Audio Network* www.lymediseaseaudio.com

Lyme Disease Foundation*  (Call for LD Doctor Referrals)  www.lyme.org 

Lyme Disease Network* (features Joseph J Burrascano JR., M.D. diagnosis & treatment protocols) www.lymenet.org 

Lyme Disease Resource Center  www.lymedisease.org

Lyme Disease Survival Page (features hints on how to find a Lyme knowledgeable doctor)  www.execpc.com/~jbehnke

Lyme Truth  www.lymetruth.org

LymeInfo.net* www.lymeinfo.net 

WILDER Network www.wildernetwork.org 

 LYME ISSUES:

"The Scientific Controversy: There has been a long-standing controversy in the medical community as to whether or not Lyme disease is easily diagnosed, treated and cured. One group states that diagnosis is easy and that Lyme is almost always cured with 4 weeks of antibiotics. If the patient is still sick after those 4 weeks, this group claims that either the patient was incorrectly diagnosed, that the continuing symptoms are psychosomatic, or that the patient now suffers from an autoimmune problem which was caused by the original Lyme infection --- and that there is no treatment for this auto-immune problem.

The other side of the controversy is supported by chronic Lyme patients and the physicians who treat us. We contend that the persistence of Lyme disease symptoms beyond the 4 week treatment is due to the persistence of the Lyme disease bacterial infection and/or to the presence of co-infection. We attest to the fact that we do much better when treated beyond those 4 weeks of antibiotic treatment. Our subjective experience is supported by a body of peer reviewed scientific research.

Since there is no definitive test to show when someone has Lyme disease and/or is cured of it, since our symptoms persist past the standard four week treatment, and since we have significant scientific literature supporting that the Lyme bacterium can survive this standard treatment, we protest any attempt by the OPMC to repress the right of physicians to treat chronic Lyme disease patients according to their best clinical judgment which has been informed by the scientific literature." www.Faim.org/lyme.htm  

FAIM* (Political issues of Lyme) www.faim.org/lyme.htm

The Dirty Truth About Lyme Disease Research http://fairfieldweekly.com/articles/lymedisease.html 

Lyme Disease Conspiracy* (explains Burrascano’s theory about the lack of Lyme literacy)  www.jersey.net/~joebur/conspire.htm

Why the Controversy Over Diagnosing and Treating Lyme Disease? by Thomas Grier, MS (article web address no longer known).  

LYME INFORMATION:

Spirochetes in blood

 

But They LOOK So Good! - The Paradox of Feeling Bad, but Looking Good. Excerpt of Part 1 of the booklet, "But You LOOK Good"  www.myida.org/theylook.htm

CDC Division of Vector-Borne Infectious Diseases: Lyme Disease: Introduction www.cdc.gov/ncidod/dvbid/lymeinfo.htm 

Clinical Infectious Diseases, Electronic Edition www.journals.uchicago.edu/CID/journal/ 

The Complexities of Lyme Disease by Thomas M. Grier, MS www.wildernetwork.org/complexities_of_Lyme.html 

Disabled? You Don't LOOK Disabled! - Unmasking Society's Depiction of People with Disabilities. www.myida.org/disabled.htm 

FDA Requires Direct Patient Warning of Anti-Malaria Drug Side Effects www.mercola.com/2003/jul/30/malaria_drugs.htm 

For Friends and Family: How to Help - Article from the MSFocus Magazine © the MS Foundation, excerpted from But You LOOK Good! www.myida.org/help.htm 

I Never Know What to Say or Do! Learning How to Encourage and Help Someone with a Chronic Condition. Excerpt of Parts 2 and 3 of the booklet, "But You LOOK Good" www.myida.org/sayordo.htm 

Insurance, Disability and Lyme www.geocities.com/HotSprings/Oasis/6455/insurance-links.html 

 

JAMA www.ama-assn.org/sci-pubs/journals/archive/jama/vol_280/no_12/toc.htm 

 

Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia
www.immunesupport.com/library/showarticle.cfm/ID/3579  

Learning to Live With Lyme Disease www.angelfire.com/hi/angelscloud4/lyme.html 

Looks Can Be Deceiving! - Understanding the Debilitating Pain and Limitations on the Inside, Despite What You Can See on the Outside. www.myida.org/looks.htm 

Lyme Disease - Home Page www.santel.lu/SANTEL/diseases/lyme.html 

Lyme Disease and Human Granulocytic Ehrlichiosis in a New York City Park www.cdc.gov/ncidod/eid/vol3no3/daniels.htm 

Lyme Disease relief...without antibiotics http://cassia.org/ 

Lyme-New and Noteworthy News www.sky.net/~dporter/new.htm

Lyme Page (LD victim testimonies) www.tisd.net/~jeand/lyme.htm  jeand@tisd.net

Lyme Disease Risk Assessments: U.S. Army at various military installations www.utech.net/users/10766/lyme.htm 

Lots of Links on Lyme www.geocities.com/HotSprings/Oasis/6455/lyme-links.html 

No Cast, No Cane, No Pain? Explains accessible parking rights & needs for people with "invisible" disabilities. www.myida.org/hndcpark.htm 

Notes and Observations on Cell-Wall Deficient Forms by Thomas Grier, MS (article web address no longer known). 

Prodigy Health Home: Lyme Disease http://my.webmd.com/ 

Sex and Lyme Disease by Robert C. Bransfield, MD www.mentalhealthandillness.com/Articles/SexAndLymeDisease.htm

Studies of Chronic Lyme Disease www.nymc.edu/lyme/overview.htm 

Vitamin C: A Lyme Patient's Friend or Foe? (article web address no longer known). 

Webmedic 4U - Lyme and Infectious Disease Information Center http://home.earthlink.net/~webmedic4u/index.htm

Why Are We Still Sick? by Thomas Grier, MS www.wildernetwork.org/why_r_we_still_sick.html  

Why Don't They Just Take Something? - Living in the Gap Between Saved and Cured. Loved ones often assume that if their friend or family member is still sick, they must be failing to do what their doctor is telling them to do. This article is a window into why this is not always the case! www.myida.org/take.htm

Will There Ever Be An Accurate Test for Lyme Disease? by Thomas Grier, MS www.wildernetwork.org/accurate_test.html 

Neuropsychiatric Lyme


Dr. Robert Bransfield, psychiatrist, presents on the behavior changes of people who become infected with Lyme on February 28, 2006 at the Jackson Municipal Building. Read several of his documents here!

 

 

 

 

Aggression and Lyme Disease by Robert C. Bransfield, MD  www.mentalhealthandillness.com/Articles/AggressionAndLymeDisease.htm

 

All in Your Head www.mentalhealthandillness.com/Articles/AllInYourHead.htm

Brain Problems Seen in Lyme Disease http://www.msnbc.com/news/765484.asp#BODY

Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients www.anapsid.org/cnd/diffdx/rissenberg.html

Lyme Disease and Cognitive Impairments www.mentalhealthandillness.com/Articles/LymeDiseaseAndCognitiveImpairments.htm

Lyme Disease, Depression and Suicide by Robert C. Bransfield, MD www.mentalhealthandillness.com/Articles/LymeDepressionAndSuicide.htm 

Lyme Disease and Neurological Manifestations www.geocities.com/lymeart3/neurologic-links.html 

Microbes and Mental Illness by Robert C. Bransfield, MD www.mentalhealthandillness.com/Articles/MicrobesAndMentalIllness.htm

 

Neuropsychiatric Manifestations of Lyme Borreliosis (Powerpoint Presentation by Dr. Brian Fallon, MD) http://cpmcnet.columbia.edu/dept/nyspi/lymevid/lyme-fr.html

Neuro-psychiatric Lyme Assessment www.mentalhealthandillness.com/tnaold.html 

Overview of Neuropsychiatric Lyme www.columbia-lyme.org/flatp/lymeoverview.html#adult-cogn

Psychotropic Management of Late Stage Lyme www.mentalhealthandillness.com/Articles/

ThePsychotropicManagementOLateStageLymef.htm 

 

Spirochetes on the Brain by Robert C. Bransfield, MD www.mentalhealthandillness.com/Articles/SpirochetesOnTheBrain.htm

 

What is Brain Fog? www.geocities.com/HotSprings/6028/brainfog.htm 

What Psychiatrists Should Know About Lyme Disease www.ilads.org/PsychiatristBrochure.pdf

NEWSLETTERS:

The Lyme Times www.lymenet.org

Lyme Truth Newsletter www.lymetruth.org/ 

SUPPORT GROUPS:

Lyme Disease Foundation  (Call for LD Doctor Referrals)  www.lyme.org 

TESTING:

IGenex, Inc.  Lyme Disease Overview www.igenex.com/lymeset1.htm 

Lyme Disease and False Negative or False Positive Blood Test Results www.geocities.com/HotSprings/Spa/6772/false-neg-pos-index.html 

IgeneX
Palo Alto, California
http://www.igenex.com/
415-424-1191
800-832-3200

North American Laboratory
New Britain, CT
203-826-1140
800-866-NALG
203-223-6279-fax

New Jersey Laboratories
New Brunswick, NJ
732-249-0148

Tick Research Laboratory
Kingston, Rhode Island
401-874-2650

TREATMENT PROTOCOLS:

"ILADS is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

Strategic Goals: Improve physician understanding of Lyme disease.Review, develop and implement clinical research programs that enhance the management of Lyme and its associated diseases. Advance the standards of care for Lyme and its associated diseases. Review, develop and implement programs for physician and other healthcare provider support (i.e. Materials, advice and education)" www.ILADS.org

"UNDERTREATMENT:
  1. Because the diagnosis is not being made, for reasons partly outlined above.
  2. University based and government endorsed treatment protocols are empiric, insufficient, refer to studies involving inadequate animal models, and are ignorant of basic pharmacology. They are not based on honest systematic studies or on the results of newer information.
  3. After short courses of treatment, patients with advanced disease rarely return to normal, yet many can be proven to still be infected and can often respond to further antibiotic therapy. Unfortunately, Lyme patients are being denied such therapy for political reasons and/or because insurance companies refuse to pay for longer treatment, upon the arbitrary and uninformed advice of these physicians, who are on the insurance company's payroll.
  4. Long term studies on patients who were untreated or undertreated demonstrated the occurrence of severe illness more than a decade later, reminiscent of the findings of the notorious Tuskeege Study, in which intentionally untreated syphilis patients were allowed to suffer permanent and in some cases fatal sequelae.
  5. The Lyme bacterium spreads to areas of the body that render this organism resistant to being killed by the immune system and by antibiotics, such as in the eye, deep within tendons, and within cells. The Lyme bacterium also has a very complex life cycle that renders it resistant to simple treatment strategies. Therefore, to be effective, antibiotics must be given in generous doses over several months, until signs of active infection have cleared. Because relapses have appeared long after seemingly adequate therapy, long term followup, measured in years or decades, is required before any treatment regimen is deemed adequate or curative.
  6. When administered by skilled clinicians, the safety of long term antibiotic therapy has been firmly established.
  The very existence of hundreds of Lyme support groups in this country, and the tens of thousands of dissatisfied, mistreated and ill patients whom these groups represent, underscores the many problems that exist out in the real world of Lyme disease. I ask and plead with you to hear their voices, listen to their stories, and work in an honest and unbiased way to help and protect the many Americans whose health is at risk from what now has become a political disease. Thank you." By: Joseph J. Burrascano, Jr. www.jersey.net/~joebur/conspire.htm

M.D.Burrascano's Pages  http://dwp.bigplanet.com/eojlyme/pages/view/index.nhtml

Burrascano Treatment Guidelines*   www.ilads.org/burrascano_1102.htm

The Detoxx System: Detoxification of Biotoxins in Chronic Neurotoxic Syndromes www.mercola.com/2003/aug/9/detoxification_biotoxins.htm 

Integrative Treatment of Lyme Disease (By Steven J. Bock, M.D.) www.patientsamerica.com/cond_xment/lyme.htm 

Neutraceutical Breakthroughs In Lyme (Luis Romero, Joan Vandergriff, Patricia Kane, Sue Massey) 

www.samento.com.ec/sciencelib/addons/ARGFocus_Jan04.pdf 

 

Summer Tick Tip from a nurse in AZ: You can purchase Flowers of Sulfur from a drug store. It is a powder you can apply like talcum powder. Dust your sock, inner pant legs and shoes and they won't land on you and bite. Patti Woodridge

VACCINE ISSUES:

Lyme Vaccine (ABC Report)   www.abcnews.go.com/sections/living/DailyNews/

lyme_vaccine0516.html

 

LINK DISCLAIMER: IDA does not necessarily agree with information contained in these links. By listing these links, IDA is not endorsing or promoting their content! Information contained in this or any other site should NOT be construed as medical or legal advice! Use your own discretion and seek medical or legal advice from a professional.

EXCHANGE LINKS! If you would like to exchange links and you have an organization, foundation, association or informational site, please contact IDA. If you have a personal site, please consider adding your site to one of the WebRings or our Personal Site and Support Group Bulletin Board. Don't forget to add a link to IDA on your site!

 

By: Sherri Connell

But You LOOK Good! 

 

A Guide to Understanding and Encouraging People Living With Chronic Illness and Pain

 

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