Lyme, Chronic Illness, and Disabilities
Research Topics and Links
Lyme Disease
Disability, Invisible Illness, Chronic Pain
Down Syndrome
Food Allergies and Chemical Sensitivities
Learning Disabilities
Terminal Illness
Vision Processing

Lyme Disease
As health care consumers, we need to be informed whenever we are exploring treatment options for a given condition.  This is ESPECIALLY true with Lyme disease.  Unfortunately this is an illness that is often underdiagnosed, misdiagnosed, and undertreated.

Five years before Dave was diagnosed, he was told he didn't have Lyme. At that point he had only 1/3 of the symptoms to a mild or moderate extent. Five years later he had about 80% of the symptoms in the moderate to severe range. If we can help someone avoid what we've been through, we'd love to be able to do that.

If you have been told you don't have Lyme, you need to know that there is no test that can rule out Lyme disease.  False negative tests are common, something we didn't know when Dave was first tested.  Look for a second opinion from an experienced practitioner.

If you have been diagnosed with Lyme, we urge you to read Dr. Burrascano's Treatment Guidelines.   If your local doctors are not treating accordingly, look for a lyme literate doctor.  When Lyme is caught in the first year, you can get rid of it, but you have to treat long enough. It's worth it to travel to a doctor who has experience diagnosing and treating Lyme disease.  We hope these links will be helpful as you consider your options.

Lyme Disease Links

What do ticks look like?
Pictures of Ticks and Lyme rashes

What is Lyme, what are the symptoms, and how do you treat it?
Tick-Borne Disease Alliance - This site is a must read.  The list of medical advisors is impressive--most of the top Lyme doctors are involved.  For a list of symptoms, check out the link to the Ilads Treatment guidelines and also read the article You May Have it and Not Know it.

Dr. Burrascano's Diagnostic and Treatment Guidelines  This site includes a list of 38 common symptoms (about 1/3 down the page), and treatment guidelines that many doctors follow.

Late Stage Lyme Disease:  Arguments for an  Individualized Approach  This is a really good summary with references of why long-term antibiotics are appropriate in late-stage Lyme.  This is on Dr. James Schaller's website and he and Dr. Jones have put this in their new book.  This is something that could really help if you are having trouble with insurance.  This one is worth printing up and saving with your medical records.

Lyme Disease Association - Lyme Primer, ABC's of Lyme...

Lyme Disease from Wikipedia--this is a goodsynopsis of Lyme including information about thecontroversy in treating Lyme, and the two standards of care.

About 40% of Lyme patients have some kind of neuropsychiatric symptoms:
Neuropsychiatric Assessment Article -Dr. Bransfield (click on the link for the article at the top of the page)

Neuropsychiatric Manifestations of Lyme Borreliosis -Dr. Fallon et al.  This article really encouraged my husband that he wasn't alone in some of those strange symtpoms he was having. (Scroll down this message board to the 7th post to see a complete reprinting. This appears to be the only free version online now--otherwise it's available for purchase.)

Can you test for Lyme Disease? 
Elisa and Western Blot:  Lies that can kill you?
The problem with antibody tests.  Great list defining terms near the beginning.

Testing Labs

Finding a Doctor
Lyme Disease Association Doctor Referral. Also try contacting a local support group for your state or region, and find out who others in your area go to.  This is a great way to learn the pros and cons of various practitioners as well.

Lyme Disease Organizations for Support and Information
Northern Illinois Lyme Resources   NILR, lots of information and links.

Illinois Lyme Disease Support Group

ILADS  International Lyme and Associated Diseases Society - A professional Medical and Research Organization - this link connects to their "articles and presentations" page.

LymeNet  More medical articles

LymeAlliance  Another great source of information, medical articles, info on ticks etc...

Getting Help:
Find a local support group  This link is also on the LymeNet site.

Online Support Groups:
Yahoo Lyme Support Groups  (There are 100's of groups listed.  I've been on Lyme Info, Robynn's list, and Lyme Aid, all were good groups.  Another group is on Delphi, Lyme and other Tick-borne Illnesses.

More information and articles of interest
Tick-Related Illnesses Self-Help Alliance  Nancy, her sons, parents, and dog have all had Lyme and are doing well.  Read their stories and also read info on alternatives to antibiotics (no sales, just information).  Nancy contributed a "Story of Hope" to this site,"Life with Lyme."

Lots of Links on Lyme  Over 12,000 links!

Westfield Academy  "Dedicated to Helping Children Discover and Develop the Gifts They Have been Given."  Also link for help with teaching ADD/ADHD and highly distractible children.

Sizzle Bop!  Where Highly Distractible People are Celebrated, Encouraged & Empowered.  This is the place to come to if you are the parent of a highly distractible child or the spouse of a highly distractible mate. This is also the place to come if YOUare the highly distractible person.

HelpGuide  Lists symptoms & ideas to help both adults and children.  This is a great site for many learning disabilities

Mildmay International  specializes in HIV/AIDS care, education, and training.  Mildmay International’s mission is to improve the quality of life of adults and children living with or affected by HIV/AIDS, primarily in resource-limited countries and communities.

Autism Research Institute  Devoted to conducting research, and to disseminating the results of research, on the causes of autism and on methods of preventing, diagnosingand treating autism and other severe behavioral disorders of childhood.

Gluten Free Casein Free Diet  Dietary intervention for autistic spectrum disorders.A free resource for any parent who needs support implementing the GFCFDiet.  It provides a central location for finding other parents who are also using Dietary Therapy.

Disability, Invisible Illness, Chronic Pain
Rest Ministries  This is a wonderful, must-see site!  Great articles, newsletter, support groups, brochures and information.  Sponsor of the National Invisible Chronic Illness Week (4th week in September).

Invisible Disabilities Advocate  "Do your loved ones have a difficult time understanding your illness, because to them you 'LOOK' fine? IDA helps friends and family see the courage and determination it takes to live with a debilitating illness, amidst the challenges, frustrations and losses!"  Another incredible site, amazing links!

Disability Insurance Assistance  A Yahoo group that helps people understand disability insurance procedures, requirements and paper work.  The people on the list aredisabled and are willing to share what they have learned about how to present one'scase to social security and other insurers.  Hope you don't need this, but if you do, understanding the paperwork and appeals procedures can make the difference between your claim being approved or denied.

Computers for Disabled  Freebyte's guide to free computers

Parents Protecting Children (United Kingdom)  a loose alliance of parents, professionals and politicians working mainly by e-mail to raise relevant issues in Parliament and in the media and where possible to support families wrongly accused of over anxiousparenting or similar forms of supposed child abuse.

Where is God?  "Finding God's strength amidst chronic illness and pain."

Down Syndrome
Down Syndrome: What to say What to say when your friend has a child with Down Syndrome. This article was written by a parent.

Down Syndrome Encouragement This site has encouraging information for the parents, not just medical what-your-child-won't-be-able-to-do.

What is Dyslexia?

Dyslexia Symptoms

All About Spelling An incremental, multisensory program that takes the struggle out of spelling.  It's been a huge blessing for our kids--check out my blog review.

All About Reading  All About Reading is a scripted, open-and-go program developed for busy parents, teachers, and tutors who want to teach reading in the most effective way possible.

International Dyslexia Association  A non-profit organization dedicated to helping individuals with dyslexia, their families and the communities that support them.

Stealth Dyslexia  by the Eides. A great read for people whose kids don't struggle with reading but do struggle with spelling or math or vocabulary...  I also really like the Eide's book, The Mislabeled Child.

Food Allergies and Chemical Sensitivities
Food Allergies  Nickie Dumke is the author of The Ultimate Food Allergy Cookbook and Survival Guide and other books. Nickie contributed a "Story of Hope" to this site, Waiting to Fly.

Gorden and Jacki's Place  Includes the Health risks of perfume (did you know that known carcinogens and items on the EPA's Hazardous Waste list are used in makingperfumes?), and information on chemical sensitivities.

Allergy Associates  An Internationally recognized clinic that treats allergies and chemical sensitivities through sublingual immunotherapy (sometimes called neutralization therapy).

MCS Referral And Resources  Professional outreach, patient support, and public advocacy devoted to the diagnosis, treatment, accommodation, and prevention of Multiple Chemical Sensitivity Disorders

Chemical Injury Information Network  Education and research on Multiple Chemical Sensitivities

Endometriosis Association  For information on infertility and endometriosis.

Learning Disabilities
The Mislabeled Child  An excellent resource!  From their website:  "to help you, as parents, teachers, or other child-care professionals to find the right names for the challenges keeping children from learning to their full potential."   Includes real-life examples and practical tips for helping your child.

HelpGuide  Lists symptoms & ideas to help both adults and children.  This is a great site for many learning disabilities

Terminal Illness
Dream Foundation  "The first national organization granting dreams to terminally ill adults"

Vision Processing
College of Optometrists in Vision Development  If your child struggles with reading, writing, or math, or with coordination, this site is a must-read.

Lane Learning Center

Vision Care Center