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» LymeNet Flash » Questions and Discussion » Medical Questions » Bettyg's LYME BROCHURE edited by Ann-Ohio 10-25-06

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Author 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.

A non-profit organization; donations are tax deductible.
www.lymediseaseassociation.org

 WHAT IS LYME DISEASE?

 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.

IGENEX Labs in California;
www.igenex.com

MD Labs in New Jersey;
www.mdlab.com

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.

http://www.youtube.com/watch?v=T-Ts68DaciM&feature=player_embedded


TREATMENT

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???

http://www.exofficio.com/product_results.aspx?category_guid=9b0c0f2c-996b-4516-a85b-3d2efec4d68b

HUNTERS AND LYME DISEASE

(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

SUPPORT
AND
INFORMATION

Lyme Disease Association
PO Box 1438
Jackson, NJ 08527
1.888.366.6611 info line
www.lymediseaseassociation.org

Lyme Disease Foundation
1 Financial Plaza
Hartford, CT 06103
1.860.525.2000
email: [email protected]
website: www.lyme.org

Lyme Disease Network
43 Winston Road
East Brunswick, NJ 08816
Email: [email protected]
website: www.lymenet.org

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]

[ 05-18-2009, 05:03 AM: Message edited by: bettyg ]

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bettyg
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up for weekend crowd....Bettyg
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edited: put 10% of less back in for KIDS' & DEET forgotten during revision process...
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up for 15 newbies in the last day joining us...
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up for person asking for this in activism...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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added

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???

http://www.exofficio.com/product_results.aspx?category_guid=9b0c0f2c-996b-4516-a85b-3d2efec4d68b

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bettyg
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deleted the top part before the actual brochure... and sent 2 versions to newbie Virginia member for her lyme educational weekend sales. [Wink]
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Lymetoo
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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!

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bettyg
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God bless you TUTU for catching my oversight; my dyslexic typing again! [lol] [group hug] [group hug]

i'll correct my other things so it doesn't happen again! [Wink]

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AliG
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Member # 9734

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Thanks Betty [kiss] [group hug]

--------------------
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.

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bettyg
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ali, glad this was helpful to you on your weekend bite!! [Smile] xox back to you....
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up for MAY LYME AWARENESS MONTH; lots of good useful info here!!
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up for MAY LYME AWARENESS MONTH; lots of good useful info here!!
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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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SandiB
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UPDATE

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.

http://www.youtube.com/watch?v=T-Ts68DaciM&feature=player_embedded

SandiB

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bettyg
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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! [sleepy]

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