Okay, I finally have the first draft of a letter that will be sent home with school kids in our town.
I took out some identifying information.
This is a letter with a page of resources attached and will have a couple of pamplets from the LDA attached.
I need it to be short enough so parents will read it, but tried to include some major points.
I know everything is not covered in this letter, but I provided links for them to follow up on if they want.
Thanks and let me know what you think and if you have any suggestions.
March 19, 2005
Dear Fellow Parents:
I am a (Name of my Town) parent of two children ages one and three. Last summer my three year old, two an half at the time, was infected with Lyme disease. Lucky for me, she had a bull's-eye rash so I knew that she had Lyme Disease.
Since she was infected, I've discovered that Lyme disease is a very complex disease and differences of opinions exist within the medical community concerning diagnosing, testing and treatment of the disease.
This has prompted me to share some of the things I've learned throughout my frustrating ordeal, so that you will be aware of some common misunderstandings concerning Lyme and can seek the best treatment.
You may find (as I did) that some of this information may be in conflict with leading local and regional physicians (even some of the best), as doctors tend to follow the ``standard'' medical texts and outdated guidelines when presented with Lyme.
Hopefully, you never find yourself in my position, however if you do, this information will prepare you to make better-informed decisions concerning your children or yourselves.
Here is some basic information that I've learned about Lyme disease:
· There are 9 reported cases in (name of town). However, there are probably many more cases as Lyme is grossly under-reported.
· Lyme disease is the fastest growing vector-borne (transmitted by rodents or pests) disease. It is a bacterial infection and it is often missed entirely, misdiagnosed, untreated or under-treated.
· Researchers believe that you may get Lyme disease from other ticks, mosquitoes, fleas and lice. Current research also indicates that Lyme may be transmitted sexually and through blood transfusions.
· Current research shows that Lyme bacteria can be transmitted within hours after a tick attachment (I was told the tick had to be attached for 24-48 hours).
· If you have the bulls-eye rash, you have Lyme disease, insist on immediate treatment (I was told to wait to see if she developed symptoms). Tests may not show positive until several weeks have passed, so don't wait for test results. Don't miss the chance to treat the early disease because this is when the success rate is the highest.
· Less than 50% of people with Lyme had or remember seeing a bull's-eye rash. Atypical rashes are more common
· If you have a tick bite with a bull's eye rash, insist on no less than six weeks of antibiotic treatment. You should be treated with antibiotics as long as symptoms persists and most Lyme-literate doctors believe that treatment of persistent Lyme should continue for at least two months after all symptoms have disappeared.
· Lyme bacteria rapidly disseminate thoughout your body and can be found in the central nervous system as soon as twelve hours after a bite. Lyme bacteria cross the blood brain barrier.
· You can get co-infections (other tick-borne disease) from the same bite.
· 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 Lyme diagnosis and not for ruling-out lyme disease
· Your test results can be negative, but you can still have Lyme disease
· Pregnant or nursing women with Lyme - Lyme can be transmited in utero, and it may be possible for the baby to become infected from nursing.
· Lyme can cause death occasionally.
Lyme is often referred to as the Great imitator and can be difficult to diagnose because Lyme is muli-systemic (involves multiple body systems and organs) and there is a wide a range of symptoms. Also, the symptoms are similar to those of many common infections and the symptoms can mimic symptoms of other diseases.
Early in the infection, many people experience flu-like symptoms such as fever and chills, malaise, fatigue, headache, stiff neck, sore and aching muscles and joints, backache, nausea and vomiting, sore throat and swollen glands.
These symptoms may clear up without treatment, or they may persist in a waxing and waning pattern. Later symptoms may include problems with the muscles and joints, brain and nervous system, heart and circulation, digestion, reproductive system, and skin
Lyme is often misdiagnosed as MS, ALS, seizures, arthritis, Gulf War syndrome, ADHD, hypochondriasis, 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.
There is a list of symptoms in both of the attached brochures as well as a comprehensive list of symptoms starting on page 18 of Lyme disease and associated diseases, The Basics (see attached list of references).
If you suspect that your child or someone in your family has Lyme disease:
· Contact your physician (immediate treatment may be necessary)
· Contact a *Lyme-literate physician
· Read the attached information and visit the links
· Read ``Lyme Disease and associated diseases, The Basics'' (link is on attached resource page)
· Watch the local cable station for Lyme disease information
*A Lyme-literate physician specializes in diagnosing and treating Lyme disease and other tick-borne illnesses. See the attached resources page for Lyme-literate doctor referrals.
For more information or if you don't have access to the Internet, call the (local BOH and their number) and ask for the Lyme Disease information packet. Office hours are Tuesday and Thursday 8:30a.m - 4:00p.m.
Also, please let the Board of Health know If you are interested in sharing your story, starting a support group or volunteering in some manner to promote Lyme disease awareness.
A Fellow (name of town) Parent
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)
This is a good introduction and is a must read!
Lyme Disease and Associated Diseases - The Basics (www.lymepa.org/Basics2004v4_3.pdf)
Lyme Disease Association (http://www.lymediseaseassociation.org)
ABC's of Lyme Disease
Conflicts of interest in Lyme Disease - http://www.lymediseaseassociation.org/Conflicts.doc
The Lyme Disease Network (www.lymenet.org)
List of links for new members - Search for the ``newbie help links''
International Lyme and Associated Diseases Society www.ilads.org
Basic Information - http://www.ilads.org/basic.html
Basic Information and Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses http://www.ilads.org/burrascano_1102.html
Position statements http://www.ilads.org/position.html
Lyme Disease Info http://www.lymeinfo.net/index.html
You must send your labs to these labs, which specialize in Lyme disease and co-infections testing:
Lyme-Literate Doctor Referrals:
Lyme Disease Association (http://www.lymediseaseassociation.org)
For Online Doctor Referrals, please email [email protected]
For Phone Doctor Referrals, please call 888-366-6611. Go through the menu to the Doctor Referral Box, leave your name and telephone number and you will be called.
Lyme Disease Network (www.lymenet.org)
Click on Support Groups and contact the support group in your area
Click on Flash discussions and post under Seeking a Doctor.
Complexities And Issues Surrounding Lyme Disease
The Complexities Of Lyme Disease http://www.canlyme.com/tom.html
The Lyme Dsease Conspiracy http://www.jersey.net/~joebur/conspire.htm
Lyme Disease: The Unknown Epidemic http://www.mercola.com/2001/jul/25/lyme_disease.htm
The Lyme Wars - time to listen http://www.healthfreedomsolutions.com/lymewars.h