Topic: Bettyg's LYME BROCHURE edited by Ann-Ohio 10-25-06
bettyg
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[/B]8-7-06 NATIONWIDE SUICIDE HOTLINE 1.800.784.2433 now please! If you are feeling suicidal, please call the SUICIDE HOTLINE. We care about you.[/b]
LYME DISEASE and OTHER TICK-BORNE DISEASES IN I O W A - 2 0 0 9
The following information is taken from: THE LYME DISEASE ASSOCIATION, INC.
It is one of the most rapidly growing infectious diseases in the United States, and caused by the cork-screw shaped bacterium, BORRELIA BURGDORFERI. It is transmitted primarily through the bite of an infected tick. The BLACK-LEGGED (deer) tick and LONE STAR tick are the primary vectors. DOG ticks can also transmit the disease. FLEAS can transmit the bacteria. BITING FLIES and MOSQUITOES can possibly harbor the bacteria, but current research does not indicate they can transfer the bacteria.
EARLY LYME SYMPTOMS MAY INCLUDE:
FATIGUE, MUSCLE & JOINT PAIN, fever, chilling, headache, swollen glands, sore throat, stiff neck. A rash which may have a variety of appearances including multiple rashes OR the expanding bulls-eye rash. LATE STAGE, CHRONIC LYME SYMPTOMS MAY INCLUDE:
Sensitivity to LIGHTS, SOUNDS, ODORS, motions, blurred vision, or loss of sight. COGNITIVE dysfunction, difficulty organizing or asking decisions, memory loss MUSCLE PAIN, weakness, numbness, tingling, motor dysfunction and paralysis. Stiff neck, severe headaches, loss of balance, dizziness, poor coordination, Bell's Palsy. Irregular heartbeat, palpitations, heart block, chest pain, difficulty breathing. TREMORS, seizures, panic attacks, anxiety, SLEEP disorders, and swollen joints. DEPRESSION, psychiatric disorders. Continued flu-like symptoms with swollen glands, low grade fevers.
Lyme disease, Ld, is often called the ``GREAT IMMITATOR.'' It can mimic many other diseases including: Multiple Sclerosis, Parkinson's disease, ALS, Chronic Fatigue, Fibromyalgia Pain, Alzheimer's disease, dementia, Arthritis, Influenza, Mononucleosis, Lupus, mental illnesses, and other illnesses.
LYME DISEASE CO-INFECTIONS
The tick that transmits Ld often also transmits other tick-borne diseases.
BABESIOSIS - A parasitic malaria-like illness caused by a protozoa, sometimes fatal in the elderly or those with no spleen. May be more severe in patients with coexisting Lyme. SYMPTOMS include: fever, chills, fatigue, headache, muscle pain, and anemia. TREATMENT may be atovaquone with azithromycin or clindamycin and oral quinine.
BARTONELLA - Illness caused by an intracellular bacteria that can be transmitted either by a CAT bite or scratch or a tick bite. When present in combination with Ld, atypical presentations may result including: Visual problems, headaches, significant lymph node enlargement, resistant neurological deficits, and the new onset of a seizure disorder. DIAGNOSIS is made by acute and convalescent antibody titers (IPA) and by PCR (DNA) analysis. TREATMENT may be tetracycline and quinolone.
EHRLICHIOSIS / ANAPLASMOSIS - Human monocytic Ehrlichiosis is caused by Ehrlichia (E) chaffeensis, renamed anaplasmosis, is caused by Anaplasma phagacytophilum. SYMPTOMS include: fever, malaise, headaches, chills, severe muscle aches, vomiting, anemia, lung infection, decreased while blood cells and platelets, elevated liver enzymes, seizures, encephalopathy, meningitis, confusion, ataxia, and cranial nerve palsy. Co-infection with Lyme can cause more severe symptoms. Death can result. TREATMENT is with doxycycline.
ROCKY MOUNTAIN SPOTTED FEVER - Caused by a parasite. SYMPTOMS include headaches, myalgia, and a characteristic RASH usually beginning on wrists, ankles, palms, and soles. TREATMENT is tetracycline.
TULAREMIA caused by a bacterium. SYMPTOMS include chills, vomiting, aching pains, and fever. INFECTION SITE develops into an ulcer, swollen glands, sweating, weight loss, debility. TREATMENT is streptomycin or genamicin.
MULTIPLE VIRUS TYPES - many whose effects are unknown.
KIDS AND LYME DISEASE
By Dr. Charles Ray Jones, MD Pediatrician from ``The ABC's of Lyme Disease'', The LDA, New Jersey, ``Children with Ld are tired, wilt easily, have dark circles under their eyes, and are sick. Ld has a profound negative impact on a child's life, cognitive function, and ability to perform maximally in school. Severe fatigue unrelieved by rest results in decreased stamina and a decreased ability to play and to do school work. Insomnia, headaches, nausea, abdominal pain, impaired concentration, poor short-term memory, an inability to sustain attention, confusion, uncharacteristic behavior outbursts and mood swings, fevers/chills,
Joint pain, dizziness, noise and light sensitivity, and difficulty thinking, expressing thoughts, reading, writing, and making decisions, as well as a feeling of being overwhelmed by school work, plague a child with LD. Pain and impaired cognitive function make it difficult to sustain attention and to learn and recall new material.'' DISCLAIMER: Not every child will have cognitive symptoms.
DIAGNOSIS
Early Lyme should be diagnosed ``clinically'' using medical history.
A knowledgeable physician will ask the following questions in making a diagnosis:
1. Have you had a tick bite? 2. Did you have a bulls-eye or any other type of RASH? (A bulls-eye rash shows you do have Ld, but occurs in only about 1/3 of the cases.) 3. Do you have clinical signs and symptoms? 4. Do your symptoms intensify every 4 to 6 weeks? 5. Do you have pets or other domestic animals that may be infected with Ld? 6. Have other diseases been ruled out? 7. Are the Western Blot blood tests for Ld positive? (Negative tests do NOT rule out Ld.) 8. Do you improve when given ANTIBIOTICS?
TESTING FOR LYME
There are tests for Lyme disease, but since antibodies do not form until weeks after the bite, they are not effective in early Lyme disease.
No currently available test is definitive in ruling-in or ruling- out infection with Ld path- ogens, or whether these infections are responsible for the patient's symptoms.
Tests should be used only to confirm diagnosis.
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the most accurate tests for Ld we have to date.
There are reliable blood tests for most co-infections.
Here are the three labs with the most experience in LD and tick-borne disease testing.
The Central Florida Research Lab is CLIA approved and the test has received State Certification. The Lab also runs both the ELISA and Western Blot Antibody test.
Here is the link to the video just placed on UTUBE with the latest information on the CFR NEW LYME TEST.
There are hundreds of people suffering with the symptoms of Lyme disease who now can get a test that is 94% sensitive, and specitivity is 98%. Sharing can save suffering and even someone's life.
Check it out at as they explain the test on UTube.
Ld is treated with antibiotics, given orally, by injection, or intravenously.
Cure is likely if the infection is diagnosed EARLY, and treated adequately with a course of antibiotics; at least 8 weeks or until symptoms subside; can be up to one year.
If a person has had Ld for many months or years, treatment can still be effective, but a longer course of antibiotics may be required. Chronic Lyme develops if a person is NOT treated adequately, and may NOT be cured, but can go into remission. A person who is misdiagnosed with another illness or condition may be given inappropriate or harmful treatment, and will remain infected with Lyme. There are many alternative medicine and herbal treatments which can help support the immune system.
DISCLAIMER The medications listed above are those that are most commonly used for each of these tick-borne diseases, but many Lyme literate Physicians may use other or additional medications as well.
TICK REMOVAL
Grasp the head of the tick with tweezers and pull gently STRAIGHT OUT. (See physician if unable to remove the whole tick.) Wash the site of bite with soap and apply antiseptic. SAVE THE TICK! Ticks can be tested for the bacterium. Save the tick in a tightly closed container with a blade of grass and refrigerate. Note the date and location of the bite. CALL IGX labs at 1..800.832.3200 for further instructions. MAIL TO: IGX Labs (see email address). See your doctor if you develop a rash and/or flu-like symptoms. Do NOT prick, burn, or squeeze the tick during the removal process. Do not smother tick with petroleum jelly or fingernail polish. Do not use bare fingers to remove or squeeze the tick to kill it...use gloves.
PROTECTION
Wear LIGHT colored, long sleeves and pants. Tuck pants into socks or put tape around the cuffs. Apply an insect repellent containing DEET to clothing. Follow the manufacturer's label or spray. DEET concentrations for children MORE than 2 months old are 10% or less; an adult is 12-25% MAX; no stronger. Never apply DEET products to children's faces and hands or let any spray get into their mouths. Consider using new DEET-free repellents, which can be effective for 30 to 45 minutes. PERMANONE on clothes is NOT for children. Permanone is a spray 100% effective against ticks. Stay on trails, avoid contact with vegetation. Check frequently for ticks while outdoors. After an outing, examine your clothing and place in a HOT dryer for 20 minutes. Heat will NOT kill ticks! Check your skin thoroughly, especially the scalp area. Be sure to check your pets and remove ticks.
CLOTHING PERMANONE IMPREGNATED INFO 10-25-06
I spoke with the tick expert folks at the Lyme Disease Assn. conference.. who were from Aberdeen Proving Grounds in Maryland.. great people helping our military men and women!
They showed me samples of permanone impregnated clothing. I smelled it to detect odors.. which there were none.. and felt it. Looks, smells and feels like the real thing.
You (civilian) can order clothing now.. like what the military folks wear to protect themselves... but it is prettier. It has the tick stuff already in it, so no mess at home doing it yourself. It is for sale at the site below .
Also.... Aside from the best protection you can get... it saves money .. as the cans of spray to treat clothing can run from $6.00 to $8.00 each.. and only is good for 2 weeks.
There is NO scent... so it is good for chemical sensitive folks and hunters in the woods .
The site below shows a selection of women's clothing.. and if you look at the top of the site.. you can click on buttons for men's and children's clothing. Christmas is coming???
(First, read the ``Protection Section'' above.) Wear gloves and a hat. Permanone spray on clothing is 100% effective against ticks. Use a tarp to haul game; never have game near your body. Keep game several feet from house and hang over a pail of bleach & water for 12 hours. Hunters should remove their clothing after the hunt, place in dryer at HIGH heat for 30 minutes. A tick can live through the washing machine cycle. After drying clothes, place in washing machine. Check body for ticks, take a warm shower & wash hair. When butchering game, wear rubber gloves, goggles, and a rubber apron (or place trash bag over body). Refrigerate butchered game immediately. All meat should be cooked until well done to kill the spirochete from the tick that causes Lyme disease in game.
IOWA ISSUES
Black-legged and Lone Star ticks can be found throughout Iowa and current tick studies have documented infected ticks. Ticks are transported throughout the state by deer, mice, other mammals, and migratory birds. Iowans can contract Lyme disease within the state.
The number of LD cases reported to the Centers for Disease Control (CDC) from Iowa is far lower than that of surrounding states, and does not represent the true incidence of LD in Iowa.
The CDC acknowledges that Lyme Disease is the most under diagnosed and under- treated disease in the United States. www.cdc.gov
International Lyme and Associated Diseases Association P.O.Box 341461 Bethesda, MD 20827 - 1461 www.ilads.org
BOOKS
THE SINGING FOREST, A JOURNEY THROUGH LYME DISEASE, 2006, by PJ Langhoff is now available at: www.lulu.com/lyme (special offer for organizations and physicians, see bottom of notice) Foreword by James L. Schaller, MD, MAR-whose own family was affected by Lyme disease With a dedication to Dr. Charles Ray Jones, Lyme pediatrician for kids. A compelling, honest story of one American family already struggling with undiagnosed Lyme disease that is hauled through the family court system and crucified for having that illness. The story touches on the very real aspects of a complex and controversial disease.
A MUST-READ for Legislators, Medical Review Board Members, Physicians, Lyme patients and their families, and anyone wanting to learn more about the far-reaching effects of this complex disease.
Organizations & Physicians: Earn a donation for every book sold or promoted through your organization. Contact the author for details.
CONFRONTING LYME DISEASE: What Patient Stories Teach Us, 2005, by Karen P. Yerges and Rita L. Stanley, PHD. 14 TRUE stories written by those patients having chronic lyme disease. ``This book represent patients who are seen on a daily basis by physicians, like myself, who treat Lyme disease. Physicians, who courageously treat these incredibly sick patients, deserve the highest respect from the medical profession rather than the condescending and scathing criticism to which they are subjected almost daily. There is a silver lining: a growing group of legislators and lawmakers, who are recognizing this injustice and forging the way for change'' by Lesley Ann Fein, MD, MPH, West Caldwell, New Jersey.
LYME DISEASE UPDATE: SCIENCE, POLICY, & LAW, 2004, by Marcus Cohen. A must for busy physicians who lack time to read the peer-review on Ld, and for patients who have been refused treatment or even a Lyme diagnosis; the doctor perhaps citing a negative test or the patients' lack of conformity to the CDC criteria, which are meant for surveillance purposes only, references are cited in Lyme Disease Update. Patients planning an insurance appeal will also find this reference book useful, as will those struggling to understand the complexities of this disease.
NOTE: Order directly from the LDA, paperback book is $8 plus $2 postage/handling: Send your name, address, and make check or money order PAYABLE to: Lyme Disease Association and mail to: LDA - Attn. Update, PO Box 1438 Jackson, NJ 08527, or order by credit card on their website above; 6-8 weeks delivery.
BULL'S-EYE: UNRAVELING THE MYSTERY OF LYME DISEASE by Jonathan A. Edlow, 2003, hard cover. A compelling mystery and a riveting account of science in action...Robert B. Parker.
LYME DISEASE IS NO FUN: Let's Get Well!, 2005, by Mary Wall, written for 8-12 year old children by Mary who had children's LD. Cost is $6 including postage & handling. Order from LDA also; see 1st column for details.
COPING WITH LYME DISEASE: A PRACTICAL GUIDE TO DEALING WTH DIAGNOSIS AND TREATMENT, 1997, by Joseph Territo, Denise Lang, paperback. A good guide to diagnosis, treatment, and recovery.
EVERYTHING YOU NEED TO KNOW ABOUT LD AND OTHER LD TICK-BORNE DISORDERS, 1997, by Karen Vanderhoof-Forschner, et al, paperback. A complete review of the disease and the issues from the Chairperson of the LD Foundation Board of Directors.
May 18, 2009 by [chronic lyme patient & typist BettyG, Iowa]
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up for weekend crowd....Bettyg
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bettyg
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edited: put 10% of less back in for KIDS' & DEET forgotten during revision process...
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bettyg
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up for 15 newbies in the last day joining us...
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bettyg
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up for person asking for this in activism...Bettyg
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bettyg
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REVISED: I added the CONFRONTING LYME DISEASE: What 14 Patient Stories Teach Us by Karen Yerges and Rita Stanley, PHD. ... excellent lyme stories! Bettyg
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bettyg
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CLOTHING PERMANONE IMPREGNATED INFO from Tincup 10-25-06
I spoke with the tick expert folks at the conference.. who were from Aberdeen Proving Grounds in Maryland.. great people helping our military men and women!
They showed me samples of permanone impregnated clothing. I smelled it to detect odors.. which there were none.. and felt it. Looks, smells and feels like the real thing.
You (civilian) can order clothing now.. like what the military folks wear to protect themselves... but it is prettier. It has the tick stuff already in it, so no mess at home doing it yourself. It is for sale at the site below.
Also.... Aside from the best protection you can get... it saves money .. as the cans of spray to treat clothing can run from $6.00 to $8.00 each.. and only is good for 2 weeks.
There is NO scent... so it is good for chemical sensitive folks and hunters in the woods.
The site below shows a selection of women's clothing.. and if you look at the top of the site.. you can click on buttons for men's and children's clothing. Christmas is coming???
posted
deleted the top part before the actual brochure... and sent 2 versions to newbie Virginia member for her lyme educational weekend sales.
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THE SINGING FOREST, A JOURNEY THOUGHT LYME DISEASE, 2006, by PJ Langhoff is now available at:
I think you mean THROUGH ?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
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God bless you TUTU for catching my oversight; my dyslexic typing again!
i'll correct my other things so it doesn't happen again!
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks Betty
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
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ali, glad this was helpful to you on your weekend bite!! xox back to you....
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bettyg
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up for MAY LYME AWARENESS MONTH; lots of good useful info here!!
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bettyg
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up for MAY LYME AWARENESS MONTH; lots of good useful info here!!
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bettyg
Unregistered
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up for MAY LYME AWARENESS MONTH; lots of good useful info here!!
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bettyg
Unregistered
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up for MAY LYME AWARENESS MONTH; lots of good useful info here!!
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The Bowen Lab closed down 2 years ago. However, a new test in Florida which also looks for the antigen like the Bowen Q-RIBb test is available.
Here is the link to the video just placed on UTUBE with the latest information on the CFR NEW LYME TEST. PLEASE add it to your Web pages, Blogs, MySpace, Facebook, and Email to your friends. There are hundreds of people suffering with the symptoms of Lyme disease who now can get a test that is 94% sensitive, and specitivity is 98%. Sharing can save suffering and even someone's life. The Central Florida Research Lab is CLIA approved and the test has received State Certification. The Lab also runs both the ELISA and Western Blot Antibody test.
Check it out at as they explain the test on UTube.
SandiB
Posts: 991 | From USA | Registered: Aug 2001
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bettyg
Unregistered
posted
sandi, thank you for reading thru this; yes, an oversight; i had this new info in my former newbie package links, but forgot to check my info here.
i'm way behind on lyme books as well.
2 more labs could be added too:
fry laboritories in phoenix
clongen
again, thanks for taking the time to read thru this and alerting me of changes to be done!
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