Lyme Disease Resources

RESOURCES

Below are various websites to aid you in your knowledge of Lyme disease:  www.LDUC.org

Lyme disease medical education:
www.ilads.org
www.jemsekspecialty.com
www.murakamicentreforlyme.org

www.igenex.com

Psychiatric medical education:
www.thehumansideoflyme.net
www.mentalhealthandillness.com

Medical Lifeline Button: Push a button for Medical Emergency or Burglary or Fire: 1-888-834-8665 --- call your local hospital to see if they offer a Lifeline service.  Often Medicare, Medicaid or Insurance covers this service.

LOW-COST HOTELS: www.hotels.com 1-800-246-8357 Ask for Hospital/Doctor visit rate!

ANGEL FOOD MINISTRIES: Low cost food for everyone! (877) 366-3646  For more information go to: www.angelfoodministries.com

Need to Know Health Info' by Dr. Burrascano:

Bacteria die-off - A Herxheimer Reaction -

·       Why you get worse before you get better http://www.angelfire.com/me2/StarShar/Herx1.html

·       How to interpret your Lyme Western Blot http://www.personalconsult.com/articles/drjonesapproach.html

·       Drug and Supplement Interactions/Contraindications     http://www.drugdigest.org/wps/portal/ddigest

·       Candida/Fungal Overgrowth Symptom Checklist  http://cassia.org/candida.htm

·       Candida Yeast Infection Treatments and Diets from Dr. Podell http://www.drpodell.org/yeast such infectiontreatments.shtml

Foundations That May Help Patients with Medicine Costs:

·       Prescription Hope (IV and oral antibiotics for low-income LD patients) 1-877-296-4673

·       Partnership for Prescription Assistance 1-888-4ppa-now (888-477-2669) http://www.pparx.org

·       Rx Hope 1-877-267-0517 https://www.rxhope.com/about.aspx

·       Needy Meds (meds for low-income patients) – www.needymeds.org  You may also call 1-978-865-4115

·       Rockford Hyperbaric Chamber: Rockford, IL. (1- 815-395-1450)

These websites may help out some people for prescription assistance programs:

·       www.Ppark.org  888-477-2699

Funding aid:

·       www.modestneeds.org or call (212) 463-7042

·        Patient Access Network Foundation  PO Box 221858 Charlotte, NC 28222-1858  1-866-316-PANF (7263)

·       The Health Well Foundation  www.healthwellfoundation.org PO Box 4133 Gaithersburg, MD 20878  1-800-675-8416

·       Patient Medication Assistance Program www.edhayes.com/indigent.html

·       Patient Advocate Foundation Suite 200 -700 Thimble Shoas Blvd Newport News, VA 23606 1-866-512-3861 or (816)-421-2300

·       LymeLight Foundation 1229 Burlingame Avenue, Suite 205 Burlingame, CA 94010 Phone: 650-348-5509 Contact: info@lymelightfoundation.org Website: www.lymelightfoundation.org    

Free Air flights to Doctor’s Appointments

·       Miracle Flights: 1-800-FLY-1711 www.miracleflightsforkids.org (for medical air travel on large airlines– free–if qualified). Will take adults & children

·       Angel Flights: Email:  angel@angelflight.com  Website: www.angelflight.com  Phone: (918) 749-8992

·       Charitable Patient Airline Tickets 888-675-1405 Airline tickets for patient travel that exceeds 1,000 miles or there are reasons a patient cannot fly on light aircraft.

·       Air Compassion America 866-270-9198 Patient travel requires air ambulance and medical monitoring en route

·       Angel Bus 757-333-0084 Angel Bus is a nonprofit corporation dedicated to providing compassionate, non-emergency long-distance ground transportation to patients in need. Angel Bus utilizes motor coaches and their volunteer drivers as well as commercial bus service to fulfill our mission.

·       Air Compassion for Veterans 888-662-6794  Provide medically related air transport services to troops, veterans and their immediate family members.

·       Mercy Medical Airlift (MMA) http://mercymedical.org Mercy Medical Airlift's mission is to ensure that no financially stressed patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of means of long-distance medical transportation; further, to ensure the provision of urgent transportation in situations of compelling human need and homeland security emergencies.

·       Special Lift: 888-675-1405 This special service provides for nationwide "single-point of contact" administration of clinical trial travel requirements in support of special/rare disease organizations and clinical research centers. Persons or organizations concerned with travel assistance arrangements for multiple patients at different time and to different places should investigate this program.

·       Stretcher Patient Transport 800-296-3797 Mercy Medical Airlift operates a Federally-approved stretcher equipped Beech 36 aircraft (the Bonanza) for purposes of transporting patients who must be lying down en route. This service is for personnel who do not require any medical attention en route. Examples of such transports would be; elderly bedridden patient being relocated to a new long-term care facility, child in a full body cast, etc. MMA operates this aircraft under a Federal Air Carrier Certificate and utilizes a cadre of MMA trained pilots. The Bonanza is based out of Manassas, Virginia and serves the Mid-Atlantic States. The service is provided free of charge to eligible patients and families.

·       Airlift Hope America 800-325-8908   Ambulatory outpatients traveling less than 1000 miles departing from North Carolina. Tennessee.

·       Angel Flight Mid-Atlantic 800-296-3797   Ambulatory outpatients traveling less than 1000 miles departing from District of Columbia, Delaware, Kentucky, Maryland, Michigan, Ohio, Pennsylvania, Virginia and West Virginia.

·       Air Charity Network (ACN) Support 757-318-9174 Mercy Medical Airlift has several support initiatives that it undertakes on behalf of and at no cost to the Air Charity Network including nationwide pilot recruitment, government liaison/program development and liaison with national disease and patient support organizations and other national charities involved in patient services. Additionally, MMA operates the www.volunteerpilot.org web site on behalf of the Air Charity Network This web site has referred thousands of potential volunteer pilots to ACN regions.

·       Homeland Security Emergency Air Transportation System (HSEATS) 757-318-9174  HSEATS is the United States civil aviation response to disasters. It is a jointly coordinated program that utilizes aircraft owned and flown by volunteer pilots, corporate business jets, air ambulance services through Air Compassion America and donated airline tickets through Mercy Medical Airlift

·       Charitable Aviation Association Management 757-318-9174 MMA contracts with other charitable medical air transportation organizations at both the national, regional and state levels providing fund-raising, general administration and program services thus achieving maximum efficiency at minimal costs.

·       The National Patient Travel Center  The National Patient Travel Center provides information about all forms (see examples below) of charitable, long-distance medical transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network. Patient Number 1-800-296-1217 Fax Number 1-800-550-1767 Email: info@nationalpatienttravelcenter.org

Department of Human Services (DHS)

Waivers for Chronically Ill Patients:  Call 211 in your state.

·       ILL & HANDICAP waiver

·       Brain Injury waiver

·       Elderly waiver

·       Physically Disabled waiver   

Attorneys:

To locate your State’s Disability Attorney: 1-800-431-2804 E-mail: NOSSCR@ATT.net

Social Security Disability Attorneys— Max Schott & Associates (515) 277-4727 Windsor Heights, IA

Attorneys or Legal Firms who will help Lyme patients with various cases:

1.     Susan Greene (Lyme literate (LL)) – Washington, DC. You can contact her at: sgreen@hardball-law.com or 410-494-7400.

2.     Caryn Jaffe is an RN who does research for lawyers involved in Lyme cases, and can trained non-Lyme literate (LL) lawyers to be Lyme literate lawyers.  You her at: cj2taflute@Gmail.com – 410-913-2742.

3.     Bill L’Esperance – Lyme literate milieu. He will aid with going after insurance companies throughout United States. You can contact him at: walesperance@wwdb.org or 800 (505) 266-8482.

4.     Neil Good – Chicago – is a Lyme literate lawyer and will go after Disability for Lyme disease patients in the Illinois. You can contact him at: neil@neilgood.com

5.     Binder and Binder – national – will go after Disability for Lyme patients. Contact them at 800-662-4633.


Suicide Prevention

Suicide Prevention: 1-800-273-TALK 24-hour phone lines open

National Suicide Prevention Lifeline:  1-800-273-8255

OTHER INFORMATION AND RESOURCES:

·       Now is the time to have a “bug safety kit” prepared. A safe product for the family is BEAT-IT Bug Spray, an all-natural spray. To order, call: 1-800-219-9765

·       TRIAZICIDE - Lawn spray to prevent ticks in your yard: 1-800-917-5438

·       “Frontline” – Best tick-prevention for pets – (at Veterinarian’s office)

·       Best tick non-aerosol for clothing (tick prevention) ---“Clothing and Gear Spray” with Permethrin – check with your local “Outdoor” shop - $15 for 32oz bottle.

·       Monavie—healing juice—enhances immune system - DRCHCGO@aol.com Betty: (641) 990-7806

·       Oreganax (natural antibiotic) North American Herb & Spice Co. 1-800-243-5242

·       Epicor – vitamin to enhance immune system -Chemical Free 1-866-994-9155 or 1-888-401-1105

·       Carnivora – (herb) & Lymph Drainage: www.carnivora.com

·       Vita Cost: www.VitaCost.com

·       Bragg’s Products: www.bragg.com

Alternate sources for Teasel Root tincture made from FRESH Dipsacus sylvestris root include:

·       Pharmacopia Herbals –Oregon www.pharmacopiaherbals.com

·       Jean's Greens - New York State www.jeansgreens.com

·       Woodland Essence -Cold Brook, NY www.woodlandessence.com

·       Walker Farms –Wisconsin www.walkerherbs.com

·       Judy’s Organic Herbs (Canada only) www.earthmedicine.ca

HERBALIST AIDS LYME PATIENTS

LadyB is an herbalist, who is completely recovered from eight separate bouts of Lyme over a 15 year period and has been well for over 8 years now. What she offers is education and empowerment, but not diagnosis or prescribing.Her web site:www.ladybarbara.net  where you will find the story of her own dance with Lyme

Rife Machine:

·       Dan Tracy 518-548-8495, call after 7 pm CST, ~$500

·       Mary, RN (taught by Dan Tracy) 518-734-4166

·       Travis in Michigan (taught by Dan Tracy) www.rifemachinebuilder.com

·       Louellen Gooding 309-426-2339 She is a patient that got well using Rife and antibiotics and will answer questions

Probiotics: Pearls Immune www.organicpharmacy.org ---very cost effective and low cost.  You can find this at:

·       www.riteaid.com

·       www.vitaminworld.com

Herbs For Health www.herbspicetea.com Or call: 800-227-2830---Nature’s Herb Company since 1915

·       Green Energy

·       Colon Cleansing

·       Diet Tea “Naturally”

Morgellon’s Patients information www.gingersavely.com

“Alternative Medicine Magazine's Definitive Guide to Sleep Disorders: 7 Smart Ways to Help You Get a Good Night's Rest” By Herbert Ross, Keri Brenner - $12.71.  The second edition of this comprehensive Alternative Medicine guide outlines seven reasons people can't sleep: toxic overload, poor diet, stress, disrupted body clock, electromagnetic fields, and hormonal or structural imbalances. It then provides an alternative program to reverse sleep problems, which includes treatments such as detoxification, dietary change, and more. Founded in 1994, and entering the web in 1997, Natural Solutions Environmental, Inc. is one of the Internet’s LARGEST, longest running and well established Healthy Living Environmental Appliance Retailers on the web.

·       Herbs

·       Articles on Natural Health

·       Air Cleaners / Purifiers

·       UV Air and Water Sterilizers

·       HEPA Air Cleaners, Purifiers & Filters

·       Water Filters /Shower Filters

·       Vent Duct UV Air Purifiers

·       Portable Air Filtration

·       Humidifiers / Dehumidifiers

·       Food Dehydrators/Juicers/Water Distillers

Health Products and more 1-800-577-7646 … $19.95/year http://www.nsaw.com  PO Box 1056 -Escondido CA- 92033

A LEAP TOWARD HEALTH by Linda Fish – Certified Biofeedback Technician 1 Parkcliff Drive, Suite G Holiday Island, AR 72631 (479)363-6404 or (417)671-2700 Biofeedback is a safe & effective way to teach your body to relax. Biofeedback equipment is tested for safety by the FDA.

To order Western Blot test kits to test for Lyme disease:

·       IGENEX Labs 1-800-832-3200

·       Fry Labs (for Co-infection testing): 1-480-292-8560 www.frylaboratories.com

·       Clongen Labs (to test tick for LD): 1-301-916-0173

·       Galaxy Diagnosis 919-313-9672 Good for testing different strains of co-infections

·       XMRV Virus Testing: VIP Diagnostics Lab www.vipdx.com (775) 351-1890

IV Care Companies:

All of the companies below are in every state:

·       Coram Health Care www.coramHC.com

·       Nationwide: 1-800-423-1411 Iowa: 1-800-999-2298

·       Option Care - Call general information to get phone numbers in your state.

Iowa: 1-800-879-6137 or 1-319-363-1284

·       Infuserv America:1-800-877-6137 or 1-800-886-9222

·       Apria Nursing Care IV Care – Nationwide; Iowa: (515) 270-0536

·       Wesley Home Health Care; (515) 288-3334

Other information:

·       Alternative medicines – Dr. Scott Taylor, DVM - www.myremedi.com

·       Foot Smart: 1-800-870-7149

·       Dr. Leonard’s Health Care catalogue: (800) 785-0880

·       Sleep Solutions Catalogue: (800) 810-2340 www.shopsleepsolutions.com

·       Home Trends 1-800-810-2340

·       Rejuvenate 1-866-956-9355

·       Swanson’s Catalogue(very inexpensive, yet good source for vitamins): (800)824-4491 www.swansonvitamins.com

·       Lyme patients are saving money in vitamin and herb needs by ordering from a Fargo, ND company: For example, the herb, marshmallow is $3.99 per bottle at Swanson’s, vs. a traditional health food store cost of $10.99 per bottle. Marshmallow is an herb that combats nausea and aids in healing lesions in the stomach, and intestines of Lyme patients. Milk Thistle is another herb that is only $1.99 per bottle. Milk Thistle is an herb which protects the liver, as Lyme patients take large dosages of required antibiotics. Swanson’s Health was established in 1969, and is a family run business

To order Lyme disease literature for your community (there are postage costs - brochures are free):

To order the following from ILADS – Call 1-301-263-1080 or E-mail: lymedocs@aol.com

·       “What Every Primary Care Physician Should Know About Lyme Disease”

·       “Lyme Disease Physician Training Program”

·       Psychiatric Lyme disease”

BOOKS ON DRUGS

Medline Plus: http://www.nlm.nih.gov/medlineplus Medical encyclopedia Drug dictionary

Drug Digest: www.drugdigest.org

Drug interactions Comparison of drugs Rx List, the Internet Drug Index:

--Western & Eastern medicines & side effects: www.rxlist.com

To Order “Under Our Skin” DVD  www.openeyepictures.com

To order Films & Documentaries regarding Lyme disease: “Nuts and Bolts of Ld”

Treatment Guidelines:  www.ilads.org 

READING LIST

·        TREATMENT OF CHRONIC LYME DISEASE by Dr. Burton Waisbren, Sr. M.D., FACP, FIDSA

·       Magazine about Lyme disease www.lymetimes.org

·       Newspaper publication about Lyme  disease— www.publichealthalert.com  (free to read online)

·       Go to www.lymebook.com  to order some of the books listed:

·       Coping with Lyme Disease by Denise Lang

·       Beating Lyme by Constance Bean

·       Treating Lyme Disease by Bryan Rosner (or several others by Bryan Rosner)

·       Babesia by Dr. James Schaller

·       The Use of the Herb Artimesia for Babesia, Malaria, and Cancer by Dr. James Schaller

·       Lyme in Rhyme (for children) by Gerri Rodda, RN

·       Cure Unknown by Pamela Weintraub

·       Cell Wall Deficient Forms by Dr. Lida Mattman

·       Bulls Eye – Unraveling the Medical

·       Mystery of Lyme Disease by Dr. Jonathan Edlow

·       Everything You Need to Know About Lyme Disease by Karen Vanderhoff-Forschner

·       Widening Circle by Polly Murray

·       Lyme Disease Update: Science, Policy, and Law by Marcus Cohen

·       Living a Healthy Life with Chronic Conditions by Kate Lorig

·       Delusions may not always be delusions by Dr. Ginger Savely

·       Lyme Times Magazine -- www.lymetimes.org  

·       The Lyme Disease Survival Guide by Bryan Rosner

·       Baker’s Dozen by P.J. Langhoff

·       Insights into Lyme Disease Treatment: 13 Lyme– Literate Health Care Practitioners Share Their Healing Strategies by Connie Strasheim

·       Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and its Coinfections by Stephen Harrod Buhner

·       The Lyme Diet By Nicola McFadzean, ND Paperback, 214 Pages $24.95 Nutritional Strategies for Healing from Lyme Disease is a must-have book for anyone suffering from such Lyme disease symptoms as fatigue, chronic pain, cognitive deficits, and candidiasis. Written by a naturopathic doctor.

·       Ending Denial: A Canadian Public Health Disaster Edited by Helke Ferrie Paperback, 460 Pages, $29.95

·       Healing Lyme Disease Naturally: History, Analysis, and Treatments By Wolf Storl Paperback, 368 Pages, $19.95

·       Additional reading suggestions~

·       The Makers Diet by Jordan Rubin (healing diet for illness)

·       The Mediterranean Diet by Melissa Cloutier (healing diet for LD patients)

·       The Mediterranean Cookbook by Nancy Jenkins 

FREE CATALOGUES TO ORDER, TO ENHANCE LYME DISEASE CARE:

First Street Catalogue 1-800-704-1210 www.firststreetonline.com

Features: Chi machines for exercise; Foot massagers, Walkers; Bath aids, Stair chairlifts; Leg massagers (compressed air); Games that re-build memory loss

Hammacher Schlemmer *

1-800- 543-3366 www.Hammacher.com Features: Headache wraps; Circulation leg wraps; Heated mattress pads; Mold & germ destroying air purifier; Electronic temple & eye massager

Support Plus: 1-800-229-2910 www.supportplus.com  Has "Biowarfare" Caused Lyme Disease and Other Epidemics?

God Science The Secret World of Rampant Genetics, Hidden Illness, and Biotech Profiteering by P J Langhoffarn about the Other Biowarfare that has been going on for a century! To order: (920) 349-3855 or books@allegorypress.com

Gold Violin: (877)648-8400 www.goldviolin.com

Please see the following Internet for connections that may be of aid to you:

www.lymepa.org/Basics2007v1.2Rev.pdf  - free downloadable Brochure “Lyme Disease and associated tick-borne diseases: The Basics” 5th Edition 2007 by Douglas W. Fearn, of the Lyme Disease Association of Southeastern Pennsylvania. Written in a nontechnical Question-and answer format and was reviewed for accuracy by several prominent Lyme literate physicians.

www.ilads.org  — website of the International Lyme and AssociatedDiseases Society.  Download Dr. Burrascano’s Lyme treatment guidelines and a variety of useful brochures.

www.lymenet.de/literatur/vtsherr_gut.htm -gastrointestinal manifestations of Lyme.

www.mentalhealthandillness.com/lymeArticles.htm -psychiatric manifestations of Lyme.

www.lymeinfo.net/multiplesclerosis.html -Lyme and multiple Sclerosis

www.publichealthalert.com  –monthly newspaper on Lyme and related issues. Read it free on-line.

Website Provides Free Public Access to Full Journal Articles For a number of years the public has been able to read abstracts of peer-reviewed articles published in science and medical journals at www.pubmed.gov .  Now there is a website that provides free access to the entire article, not just the abstract. It is www.plosone.org  – reprinted from Prime Time Lyme newsletter (Nov. 2009) www.lymeinducedautism.com - Lyme and autism

www.lymedoctor.com  - website for the book The Lyme Disease Solution, by Dr. Kenneth Singleton. This is highly recommended as a primer for people needing to learn about Lyme disease, fast.

www.cureunknown.com  —– website for book Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub. This is an excellent explanation of the scientific, medical and political turmoil surrounding Lyme disease.

LYME DISEASE UNITED COALITION DISCLAIMER

The Lyme Disease United Coalition wants it to be known that our officers and volunteers are not medical doctors. We advise you to check with your physician to answer any medical questions. We pass on the names to people with Lyme disease, of physicians educated to treat this disease, but hold no liability for these physicians’ treatment plans and/or care of patients with Lyme disease. We encourage the inquirer to do an interview of &/or check out any physician referred to them.

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