posted
Is there someone who has written a short to trhe point article or groups of articles to make people more aware of the lyme problem?
If we could use your name as the author maybe each of us could circ ulate the article to our local papers and get it printed..for may awareness month..
We could all start with the shortest to the point article and after people have been educated by us we could send in the lengthier ones..
All across the nation!.. ..I know many of us including myself don't have the energy to write up something on our own but I DO HAVE enough energy to mail it to the newspaper with a little note about lyme awareness month!
Please anyone with info......thanks
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
Good idea! I'm nearly brain dead myself when it comes to writing letters for the public!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thanks for bring this up again and clearer that I did, daniella.
quote: posted by me a few days ago over in Support on the MAYday thread:
Ok, I know this is the eleventh hour and I've likely waited too long. I am unable to write or research anything coherent for myself these days. (Never mind speak and make sense.)
Can anyone point me in the direction of a short fact sheet or brochure that I could print out and have copied at office depot or something?
I am unable to write something but very capable of stuffing envelopes.
I've been looking around the site for something short enough to print and take to office depot to be copied but all the articles I found were very lengthly and I don't have the capacity to edit right now either.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
ggrrreat article tabby tamer..but I think hurting gma is right...
Any generic letters out there?...that would be appropriate for the entire country?..
the simpler the better...
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I think Tincup probably has something..Look in the archives. There was one for tick awareness month, I think..Think it is something like It is Lyme time. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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I have written a memorandum on Lyme disease in South Carolina that except for a few sentences specific to SC could describe the situation everywhere. It is somewhat technical but it does make sense of what we are in the mess we are and and does explain why the situation is as confused *** it is. If you wish I can either post it again, or you may look it up in the archives or I can send it to you via e mail. The Lyme disease Network of South Carolina are working to get it and other information to as many doctors in SC as possible. You might want to read it and possibly adapt it to your needs. Or it may be too complicated, but believe me Lyme disease is one complicated mess, in the first place. Hope this helps. Cheers. Thomas
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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posted
thanks Thomas! Can you post the article here for us to read? We could remove the parts about south carolina...let's see it. I hear you are a great writer!!!
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
May want to clear it with them but I think they wrote it to be succint and readable by the public.
I hadn't read it for awhile so I just re-read it and I think it will need some modification but it would be a good starting point. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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If you wish to help others, and help us spread the word, you can have 500 copies of this brochure printed and folded at your local printers in black and white for less that $75.00.
It has all the good factual information that would help someone write up a short article of their own...just pick and choose and modify it for what would work in a shorter version to cover the basics.
And if we felt better about 'copying' it one could certainly ask permission, if you feel it need be---but it's offered there for free distribution.
Just a thought, but why reinvent the wheel--- copying is the best form of flattery---
~laserred~
-------------------- "Life is mostly froth and bubble; Two things stand like stone; Kindness in another's trouble; And courage in your own." TTFN -laserred- Posts: 493 | From MidWest NorthWoods | Registered: Jan 2005
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bettyg
Unregistered
posted
Hi! I typed this almost 2 yrs. ago and have made some changes to it.
It was made for 4 COLUMNS on LEGAL size, 8 x 14, paper. When copying it here, it lost its formatting, but feel free to cut/paste in preparing something for LYME DISEASE DAY IN MAY 2006 or whenever!
LYME / TICK DISEASE IN I O W A 2006
LYME DISEASE ASSOCIATION
A non-profit organization; donations are tax deductible.
It is one of the most rapidly growing infectious diseases in the United States, and caused by the cork-screwed shaped bacterium, BORRELIA BURGDORFERI.
It is transmitted primarily through the bite of an infected tick. The BLACK-LEGGED (deer) tick and LONE STAR (also called Lone Stari) tick are the primary vectors. DOG ticks can also transmit the disease. FLEAS and RED ANTS can transmit the bacteria.
BITING FLIES and MOSQUITOES can possibly harbor the bacteria, but current research does not indicate they can transfer the bacteria.
If not diagnosed early, left untreated, or not treated adequately; Lyme disease may develop into debilitating arthritic, cardiac, neurological, digestive, and psychiatric conditions. Lyme disease can cause long-term disability or it can be fatal.
Lyme disease can be passed congenitally from mother to child, causing miscarriage, stillbirth, and birth defects.
Note: Early and late symptoms all come quickly or slowly, and can take several years to begin after the tick bite. ALL species of ticks can carry lyme bacteria! Be alert to gradual changes in your body.
KIDS AND LYME DISEASE
Per 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.''
DIAGNOSIS
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should be sent to USA's Lyme testing lab (1 of 3 top lyme labs only!):
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com
for their current prices and to print their REQUIRED form, which MUST be signed by the doctor, Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Afternoon lab draws show more positive lyme results.
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers.
Medicare patients do NOT have to prepay! Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
A knowledgeable physician will consider 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?
9. Do your symptoms WORSEN shortly after starting antibiotic treatment? (This is called the Jarisch-``Herx''heimer reaction.)
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 can 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.
A new experimental treatment called the ``Marshall Protocol'' is aiding many chronic Lyme patients. See web site: www.mashallprotocol.com for more details with a wonderful, user-friendly message board for patients and doctors!
See their site about NOIR, no infrared sunglasses needed for our super-sensitive eyes while taking doxycycline !
Another possible treatment, in conjunction with antibiotics, is Colostrom called Immunity Today. See web site: www.immunitytoday. com.
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 (address other side).
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 is 10% or less; adults 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. Check your skin thoroughly, especially the scalp area. Dryer will NOT kill the ticks! Check your pets and remove ticks.
HUNTERS AND LYME DISEASE
See ``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 cooled until well done to kill the spirochete of the tick that causes Ld in game.
IOWA ISSUES
Black-legged and Lone Star (or called Lone Stari) 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 is far lower than that of surrounding states, and does not represent the true incidence of LD in Iowa.
SUPPORT AND INFO
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 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 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 5, 2006 by Betty Gordon, Ames, Iowa
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Here is an article I just wrote that was published in a couple of local newspapers. It's not quite as controversial as what I usually write. :-) If anyone wants to use it they could change a couple of links if that would help it fit more closely to their area.
Lyme Disease : The Great Imitator Marjorie Tietjen
Lyme Disease is the fastest spreading vector borne infection in the world. Living as we do in very wooded areas, most of us have had lyme disease ourselves or know someone who has. There are also countless people who have lyme disease and are not aware of it. The available mainstream testing for lyme disease is much more inaccurate than we are led to believe. There is no current test that can totally rule out Lyme Disease. As a result misdiagnosis is a widespread problem.
I am a member of The Greater Hartford Lyme Disease Support and Action Group in Farmington, CT. Every member has previously been diagnosed with such labels as Multiple Sclerosis, ALS, Fibromyalgia, Chronic Fatigue Syndrome, Lupus, Attention Deficit Disorder, Bi Polar Depression, Arthritis, etc. Even Alzheimer's Disease has been associated with Lyme Disease. Judith Miklossy, a Swiss researcher conducted a study on 14 autopsied Alzheimer brains and 13 controls. All 14 Alzheimer brains were riddled with different strains of spirochetes, including the lyme spirochete, and the controls were completely free of these organisms.
. Because most lyme testing is extremely inaccurate, the Centers For Disease Control states that Lyme Disease should be a clinical diagnosis. This means that a physician should diagnose and treat a patient according to the patient's history and symptoms. The CDC also says that doctors should not use the CDC's diagnostic testing criteria for interpreting the Western Blot Test when determining whether or not a patient has Lyme Disease. The CDC criteria is for surveillance purposes only.
The term Lyme disease has evolved to include other tickborne infections which many of us have never been tested for. These coinfections include mycoplasmas, babesia, erlichia and bartonella. Several of these infective agents can be passed on to humans in a single tick bite. The weaker one's immune system, the more likely we are to acquire a collection of these microbes. This results in multiple symptoms which can affect every body system. What makes this disease complex so frustrating is that the symptoms can change from day to day or even from hour to hour. Due to the fluctuating nature of this disease, doctors, friends and family members may find it difficult to sympathize with the patient or take them seriously....especially if they are misdiagnosed with a nondescript label such as Chronic Fatigue Syndrome or Fibromyalgia.
Lyme Disease does not just affect the joints. Many patients with chronic lyme disease are affected very seriously with neurological symptoms. Because mainstream medicine , in general, does not feel that Lyme Disease can be a chronic active infection, many are often given autoimmune disease labels. Our school systems desperately need to be educated as to the extensive symptoms of Lyme Disease. Many children are being misdiagnosed with school phobia, ADD, depression, anxiety and other labels which may be related to Lyme Disease. For a detailed list of possible lyme disease symptoms, please visit the following link. http://www.timeforlyme.org/TFLWebDone/SignsSymptoms.htm
When lyme disease is suspected ,much suffering can be prevented if we are aware of the symptoms and receive treatment as early as possible. We need to become our own advocates. Our medical system is set up in a very specialized manner and many times this prevents accurate diagnosis. For example, I may have all the following symptoms from Lyme Disease..... back pain, wrist pain, memory loss, gastrointestinal pain, tingling and numbness in various parts of the body, muscle achiness, fatigue, jaw pain, increased allergies, etc. Inevitably we are sent to a doctor who specializes in backs, carpal tunnel syndrome, psychiatrists for the memory loss, a gastroenterologist for stomach or intestinal problems, a neurologist for the tingling and numbness, a rheumatologist for the muscle aches, maybe a psychiatrist again for the fatigue , a dentist for the jaw pain and an allergist for new allergies that seem to come out of nowhere. This is not to say that these specialists are not valuable but many times these specialists only consider their part of the body which they specialize in and are not looking for a pathogen which can cause systemic disease ( a disease which has symptoms affecting many parts of the body )
When we present with a long laundry list of symptoms. wouldn't it make sense to first look for an actual cause, such as Lyme Disease, Babesiosis, Erlichiosis, Bartonella, mycoplasmas and other tickborne coinfections? We need better testing but in the meantime the diagnosis of lyme disease needs to be based on the doctor's clinical judgement. If the doctors are not educated in the multiple diverse symptoms of Lyme disease, how can we expect accurate diagnosis?
Prevention of Lyme Disease would be the most ideal solution. There are steps one can take to minimize exposure. People can contact the Lyme Disease Foundation and the state extension service for learning about tick control measures and property management. However, because ticks are so tiny and they are just about everywhere, it is essential that one learns the symptoms of lyme disease, both the subtle ones and the obvious. The sooner a person gets treatment , the less likely they are to acquire complications or chronic lyme. For the moment, the medical establishment is a bit stubborn concerning this issue so we must take responsibility for our own healthcare. We need to be our own advocates and learn as much as we can about this disease. Then we need to try and educate the doctors. Most are well meaning but are not being given the accurate facts concerning Lyme Disease and it's coinfections. There are very few doctors in the area who openly treat chronic lyme disease and there appears to be political and financial reasons for this..so, if anyone wants to find out who they can go to to be treated, you can e-mail me at [email protected]
posted
Most newspapers limit letter to the editor to 200 words or less...which is difficult!
Here are some interesting facts suggested as talking points:
* Lyme disease is almost eight times more commonly reported than West Nile Virus in the U.S., yet the government spends 18 times more money on each case of WNV.
* In 2004, the CDC reported an estimated 19,804 cases of Lyme disease. The CDC admits only 10 percent of cases meeting its criteria for Lyme disease are reported.
This means that 198,040 new cases meeting the criteria occurred in 2004 in the U.S. This doesn't count cases that are never reported (which a Georgia study suggests are 40 times the reported numbers) and it doesn't count cases that are misdiagnosed with another Lyme-mimicking disease like fibromyalgia, chronic fatigue, MS, depression, and even mental illness and hypochondia.
Multiplying 198,040 by 40 gives almost eight MILLION cases per year, and no one knows how many undiagnosed cases there are. Millions more.
* According to a study published in 1993 in Contingencies, an actuarial trade publication, the cost to society for Lyme disease was about one billion dollars per year.
Cases have doubled since then, so today's costs are probably $2 billion or more annually.
The average treatment and diagnosis and lost wages related to Lyme disease was $61,688 per year per patient. [You can mention your own costs.]
* Children are in the highest risk category for contracting the disease (25% of total reported cases).
A CDC study reported that a child with Lyme in New Jersey has a median school absence of 140 days. A Columbia University Medical Center study reported one child had a 22-point drop in IQ from Lyme.
* The ELISA test is unreliable and misses as many as 35% of culture-proven Lyme (only 65% sensitivity).
By definition a screening test should have 95% sensitivity. Yet this is the test used most often by doctors, and patients who are not positive are denied diagnosis and treatment.
* If you had cancer, the doctor would tell you about the benefits and risks of different treatment options and let you choose. This is called ``informed consent.''
People with Lyme should also be able to choose the treatment they prefer, whether short or long term, oral or intravenous, one medicine or many.
Yet doctors are being prosecuted by their state medical boards for treating Lyme patients with aggressive, long-term treatments, and insurance companies are refusing to pay for what the doctor orders, in spite of the fact that studies consistently show high failure rates, ranging from 26% to 50%, using short term antibiotic approaches.
* Ticks that have been attached only a short time CAN transmit disease. In one study, 11% of mice became infected after only two days of tick attachment (less than 48hrs.) and one report documents infection after less than six hours of attachment.
Almost 100% of infected nymphal ticks attached until they fall off will transmit the infection.
* According to a CALDA survey, the misapplication of CDC surveillance criteria (either ELISA or WB) for diagnostic purposes resulted in a delay in diagnosis of one year or more for 49% of responding patients.
The average period of delay in diagnosis was almost 41/2 years. A full 81% of patients had physicians fail to diagnose their Lyme disease because of misapplication of the CDC surveillance criteria for diagnosis.
Many of these patients incurred treatment delays as well. ************************************************* Here's a letter I just sent in to my local newspaper...
Many lives on Cape Cod have been forever altered by the bite of a tick. Unbelievable, that a tiny tick could inflict such misery?
One bite can transmit Lyme disease, Babesiosis, Ehrlichiosis, Bartonella, and other diseases as well.
Lyme and coinfections are often missed or misdiagnosed and undertreated and these people end up with a chronic illness.
They are not malingerers, and are often maligned by some in the medical community.
There can be nothing but high praise for those independent thinking physicians who seriously treat these tick-borne diseases.
They understand that, as with other infectious diseases, antibiotic treatment should continue until symptoms are resolved.
Often, physicians may suspect Lyme only if they see a classic bullseye rash and treat only if a subsequent blood test is positive.
Many people never have this rash or a positive blood test and may still have Lyme. If one is lucky enough to have seen the tick and a rash, no test is necessary. Lyme disease is present and needs immediate treatment.
posted
Here's a great article by Lucy Barnes...and she is more than happy to have others use it as well.
The Wait and See Approach to Lyme Disease Can Be Devastating by Lucy Barnes (broken up as best I could!...nan...?? marks indicate quotes)
Reported cases of Lyme disease in 2002 were up nearly 40 percent from 2001, according to the CDC. The phenomena does not appear to be regional, as 95 percent of reporting states showed an increase in reported cases, with a one year doubling seen in some states.
The northeastern states remain a focus of concern, accounting for approximately 90 percent of all cases.
With 23,000 new cases of Lyme reported last year, it is becoming apparent that the disease is a much larger problem than many had originally thought. CDC statements acknowledge the extent and seriousness of the disease: ?
(Lyme disease) ...is greatly under-reported?, and may be, ?.. severe, chronic, and disabling?.
Complicating matters, the CDC confirms what front line physicians and chronically ill patients painfully discovered years ago, ?...some patients present with later manifestations without having had early signs of disease?.
Speedy diagnosis and treatment is now urged as the unrecognized long-term severity of the disease is finally being acknowledged.
The CDC has confirmed what the world?s leading organizations have been documenting for years, ?...early diagnosis and proper antibiotic treatment of Lyme disease are important strategies to avoid the costs and complications of infection and late-stage illness?.
In Maryland, a high risk area for tick born diseases, the Lyme bacteria causes approximately the same number of illnesses per year as the common Salmonella bacteria found in soil, water, food, and our homes.
Tick borne diseases in Maryland are more common than many other chronic and disabling diseases that require government monitoring and intervention.
In 2002, reported cases of Lyme and tick borne diseases in Maryland were:
* Two times higher than the total number of Hepatitis A, B and C combined
* Over two times higher than the number of Tuberculosis cases
* More than five times higher than all three types of strep infections combined
* Over twenty times higher than the number of West Nile cases
* Over eighty times higher than the number of cases of mumps
* Fifteen times higher than Legionellosis cases
* Eight times higher than the number of malaria cases
NOTE: CDC published studies estimate for each reported case of Lyme disease in Maryland, 7-12 go unreported.
Symptoms associated with Lyme disease, according to the CDC, may include: fever, malaise, fatigue, rash, headache, muscle aches (myalgia), and joint aches (arthralgia).
They report early Lyme infection may appear as a disease of the nervous, musculoskeletal and/or cardiac systems. Possible Lyme symptoms, as reported by the CDC, include:
Musculoskeletal: migratory joint and muscle pains with or without objective signs of joint swelling
Cardiac: myocarditis and transient atrioventricular blocks
Multiple deaths have been attributed to Lyme and other tick borne co-infections. Those who may have been exposed should, according to the CDC, ?...promptly seek medical attention if they develop any signs and symptoms of early Lyme disease, ehrlichiosis, or babesiosis?.
According to recent studies, increasing numbers of Lyme patients are found to be co-infected with Bartonella, an organism rarely considered or even tested for in Maryland.
The diagnosis of Lyme disease is to be ?...based primarily on clinical findings? (CDC). It cannot be overemphasized that treatment should not be withheld while waiting for lab test results.
The wait and see approach has been devastating for many, and it is slowly being recognized that the organisms causing tick borne diseases often are not eliminated after a single regimen of antibiotics are prescribed.
Leading Lyme disease organizations around the world agree with the CDC statement, "...it is often appropriate to treat patients with early disease solely on the basis of objective signs and a known exposure?.
Unfortunately, many patients, including thousands of children, have been misdiagnosed or were originally improperly treated for Lyme or co-infections.
In addition, physicians' failure to follow the basic CDC guidelines has led to serious health complications for thousands of patients and has elevated treatment costs into the millions of dollars for lifelong management of the chronically ill.
Some areas, such as Maryland, have been slower to acknowledge risk and adapt treatment than regions traditionally associated with higher infection rates.
Some patients misdiagnosed with the aforementioned conditions have since been tested by experienced labs that specialize in tick borne diseases and have been found to be not only infected with Lyme disease but often one or more co-infections.
Growing numbers of patients are now being properly evaluated and receiving extended courses of antibiotics, antimalarial and/or antiviral therapies to combat their infections.
While for many these therapies prove effective where past treatment has failed, for some, this is not the case. Once the infection is disseminated throughout the tissues and organs of the body they can become quite difficult to treat.
Prompt, proper treatment of the disease is absolutely necessary to avoid the possibility of chronic illness.
At a minimum, physicians in all fields must learn to clinically identify the various stages of tick borne illnesses in patients.
Dependence on false negative blood tests from inexperienced labs may very well be the source of many patients being misdiagnosed, which in turn may lead to improper treatment protocols, disabling illness, or death.
Proper diagnosis and continued treatment of patients suspected of having infection with tick borne diseases is imperative.
Too many patients with lingering health problems and active infections are being dismissed when symptoms return after inadequate treatment. They are often prescribed anti-depressants and/or other medications to mask symptoms, as if this treatment alone will magically result in curing infectious organisms from the body.
The CDC literature acknowledges the chronic nature of this disease, stating, ?...treatment failures may occur and retreatment may be necessary?.
The many doctors and patients intimately involved within the tick borne disease community would affirm the preceding statement, though most would vouch that not only are treatment failures for this disease a possibility, but they are often a harsh reality.
posted
Here is a letter I wrote (several kind people from here helped edit it) and sent out to all residents in our town with the support of the Board of Health in our town. I included the brochures from the LDA.
I only had a few people call, but I think it's worth it because the more people see this info the better.
We run a business from home and I read somewhere that on average people have to see your company name/info seven times before they will take action.
We had many calls this year from people who mentioned they had seen our marketing materials in various forms and places.
Anyhow, The Board of Health is having a Health Fair in the fall and have reserved a "Lyme Disease" table for me.
I'm trying to prepare little by little so by the time fall gets here I'll be ready (and hopefully able). 3 Good luck
Dear Fellow name of town Residents:
It is tick season and you need to be aware of it because Lyme Disease (LD), which is transmitted by deer ticks, is in name of town. There are 12 reported cases of LD in name of town. However, LD is under-reported by ten to fifteen times, so there are probably many more cases. Ticks are most active March through November, although ticks can be active anytime the temperature is above 40 degrees. Please take the necessary precautions to prevent being infected with this potentially debilitating disease.
Lyme disease is referred to as ``the hidden epidemic''. It is the fastest growing vector-borne (transmitted by rodents or pests) disease worldwide and you can go out in your back yard and get it. According to the enclosed Lyme Disease Association (LDA) pamphlet titled ``Lyme{R}Primer'', ``Lyme can cause death occasionally''.
LD is a complex and controversial disease and it is often undiagnosed, misdiagnosed or under treated. There is much debate within the medical community concerning, diagnosing, testing and treating the disease. Therefore, you need to educate yourself so you will be prepared to make informed choices concerning your health should you become infected with LD.
Below is some basic information about LD. The backside of this sheet has a list of Lyme related Internet sites that will address the following topics: symptoms of LD, diseases that Lyme Disease is misdiagnosed as or mimics, how to protect yourself, how to protect your property, Lyme-literate doctor referrals, labs that specialize in LD testing, support groups and other useful information.
Current research shows:
* Lyme bacteria can be transmitted within hours after a tick attachment. * LD is contracted from deer ticks and possibly other ticks mosquitoes, fleas and lice. * Lyme bacteria may be transmitted through breast milk, from pregnant mother to baby, through blood transfusions and possibly sexual transmission. * You can get co-infections (other tick-borne disease) from the same bite. * If you have the bulls-eye rash, you have Lyme disease. Take pictures of the rash with a ruler to show the size. Insist on immediate treatment. Don't wait for test results because the success rate is highest when treated early. Antibiotic treatment should be no less than six weeks. Antibiotics treatment should continue as long as symptoms persist and most Lyme-literate doctors treat LD for at least two months after all symptoms have disappeared. * Fewer than half of LD patients recall a tick bite and fewer than half recall a bull's eye rash. Atypical rashes are more common. * Testing is unreliable. Lyme is a clinical diagnosis, meaning that it is based on symptoms, history and examination. Testing should be used to support a LD diagnosis and not for ruling-out LD. * Your test results can be negative, but you can still have Lyme disease. * Lyme can cause death occasionally. * LD is often mis-diagnosed as other diseases such as Rheumatoid Arthritis, MS, ALS, seizures, Gulf War syndrome, ADD, ADHD, Hypochondria, Fibromyalgia, Chronic Fatigue, IBS, Depression, Lupus, Parkinson's, Alzheimer's, Crohn's, Sclerosis, Carpal Tunnel, TMJ and other various difficult to diagnose multi-system syndromes.
If you don't have Internet access, call the Hubbardston Board of Health at 978 928-1404 and ask for the Lyme disease information packet. Also, please let the Board of Health know if you are interested in starting a support group or volunteering in some manner to promote LD awareness.
Sincerely, A Fellow name of town Resident and the name of town Board of Health
Lyme Disease Resources This is just a very basic list of resources and you will find more links on these sites.
The Lyme Disease Association of Southeastern Pennsylvania, Inc. ( www.lymepa.org) Lyme Disease and Associated Diseases - The Basics (Intro,symptoms, misdiagnosed)! (www.lymepa.org/Basics2004v4_3.pdf)
Lyme Disease Association (http://www.lymediseaseassociation.org) Lyme {R} Primer, ABC's of Lyme Disease, Tickmarks (Bookmarks), Lyme literate doctor referrals, Protect Yourself Conflicts of interest in LD - http://www.lymediseaseassociation.org/Conflicts.doc
The Lyme Disease Network (www.lymenet.org) Discussion groups, Support groups, Lyme literate doctor referrals List of links for new members - Search for the ``newbie help links''
Labs Labs should be used that specialize in testing for Tick-Borne Diseases (Lyme, Babesiosis, Ehrlichiosis, Bartonella, etc). IGeneX Lab in California www.igenex.com Medical Diagnostic Lab in New Jersey www.mdlab.com
Books Everything You Need To Know About Lyme Disease - Karen Vanderhoof-Forschner Coping With Lyme Disease - Denise Lang
Posts: 441 | From USA | Registered: Jul 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I send out a press release to all the major papers in Ohio every year. [See below]
Here is last year's version. 1 page. I try to get everything possible on one page, so the copy may look a bit solid and hard to read here, but it works on paper for reporters to use.
[I tried to use indentations at beginning of paragraphs, but couldn't get it to work here. I have split it up, which will probably make it more than 1 page if you copy it out. But if you just use indentations without spaces between paragraphs, it will fit on one page. I promise!]
You can use it. Just take out the Ohio references, put in your own, update the CDC numbers for your state and the country - I posted a list here earlier- and go for it.
One more thing I think I will do this year is to ask people to be ready to be interviewed and send along a list with the press release of those people with ways to contact them.
Reporters will have no excuses then. I will have done over half their work for them!!!
Ann - OH
Press Release: (name, contact info) Determined demons cause diseases
Ticks are one of the world's most tenacious critters. These tiny crawlers can hold on for days with a barbed mouth part that hooks into the skin, cemented in with a glue-like spit that also contains blood-thinner and anesthetic! You may never know what hit you until you are sick with Lyme disease, Rocky Mountain Fever, Human Ehrlichiosis, Babesiosis or Bartonella - or a combination of those diseases.
Most common is Lyme disease. Nearly 24,000 cases were reported in 2002, the last CDC report. This is about 1/10 actual cases as the disease is very under diagnosed and under reported. If lucky, you may see a red blotch, sometimes looking like a bull's-eye, which spreads in area, usually doesn't itch, and is warm to the touch. You must get immediate treatment with antibiotics, now recommended for 4 to 6 weeks, to stop the infection.
Half the people bitten, never see the tick or the rash. After days or weeks, their first experience of the bite is a wicked "flu," followed by persistent joint and muscle pain that roves from area to area, severe headaches and extreme fatigue. If treated soon enough and long enough, you will recover. If not treated until later, Lyme can become a chronic and debilitating problem requiring long-term treatment and care.
Rocky Mountain Spotted Fever causes chills and fever and a peppery rash all over, usually beginning at wrists and ankles, and even covers the palms of hands and soles of feet. There have been several deaths in Ohio. Immediate treatment with antibiotics is needed.
Human Ehrlichiosis has a fever, too, but no rash. Tests show low platelet and white blood cell count. Immediate treatment with antibiotics is necessary, as Ehrlichiosis can be fatal.
Babesiosis symptoms resemble those of malaria, high fever, headache, fatigue and severe sweating.. Blood tests can diagnose babesiosis. Treatment includes drugs used for malaria and antibiotics. Can be fatal if victim has no spleen.
Bartonella symptoms include fever, headache, crusty rash resembling chickenpox, swollen lymph glands and fatigue. Antibiotics are the usual treatment.
If you see a tick, remove it by grasping the head part with a pointed tweezers next to your skin and pulling slowly and steadily. DO NOT use Vaseline, nail polish a hot match; the tick will panic and regurgitate all its gut contents into you and infect you for sure. Save the tick in a closed container to show the doctor.
Your best defense is an insect repellent containing the chemical DEET; under 33% is plenty. Read the directions carefully. There are special repellents without DEET for kids. Apply to clothes or skin. Just be sure to wash it off and check all over for ticks before bedtime. If you dress in light-colored clothes, you can see ticks on you and brush ticks off before they bite. An hour in the dryer will kill ticks clinging to your clothes.
A tick-killer preparation, containing the chemical permethrin, can be applied to clothes (just like water-proofing sprays) and allowed to dry before wearing. It lasts for several weeks, even through several washings. Read directions carefully.
You and your pets are at risk of tick-borne disease, so enjoy the outdoors, but be careful and be aware of ticks!
There are some good suggestions here. I am always surprised at the number of people who see these things in the newspaper! Invariably I get calls from people who recognize that they may have lyme after reading my letter.
The thing I find difficult is the fact that they limit the words in a letter to the editor to under 200. SO hard to condense all you want to say!
Hope people will give this a try. I think it's especially important if you live in an area where there's no lyme!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
A Press Release is different from a letter to the editor. One page is the best.
You should have an officious sounding name on it, "Lyme Support" would do. If you are asked about that when contacted, say you don't have a group, but you are a phone contact for people who need help.
Be sure you have your name address, Phone and e-mail on the page, too.
Sometimes they will actually publish the whole thing as an Op Ed piece. That is the best because all or at least most of your piece gets published.
Most of the time the Press Release is given to a reporter (if it isn't chucked!)and they are asked to look into it and write a piece.
That is when knowing who to interview is important, so that is why I will try to give them some people to contact.
I will try to post a letter-to-the-editor- ready piece, too.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
who has written a short to trhe point article or groups of articles to make people more aware of the lyme problem? ![[Big Grin]](biggrin.gif)
maybe each of us could circ ![[woohoo]](graemlins/woohoo.gif)
ulate the article to our local papers and get it printed..for may awareness month.. ![[group hug]](graemlins/grouphug.gif)
..I know many of us including myself don't have the energy ![[toilet]](graemlins/toilet.gif)
to write up something on our own but I DO HAVE enough energy to mail it to the newspaper with a little note about lyme awareness month! ![[hi]](graemlins/hi.gif)
![[bow]](graemlins/bow.gif)
![[kiss]](graemlins/kissing.gif)
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