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» LymeNet Flash » Questions and Discussion » General Support » Letter to Parents about Lyme

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Author Topic: Letter to Parents about Lyme
DJP
LymeNet Contributor
Member # 5893

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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local and regional physicians (even some of the best), as doctors tend to follow the ``standard'' medical texts and outdated guidelines when presented with Lyme.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.


Sincerely,
A Fellow (name of town) Parent

Attachment:

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)
LymeR Primer
ABC's of Lyme Disease
Tickmarks (Bookmarks)
Doctor Referrals
Conflicts of interest in Lyme Disease - http://www.lymediseaseassociation.org/Conflicts.doc

The Lyme Disease Network (www.lymenet.org)
Discussion groups
Support groups
Doctor referrals
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

Labs
You must send your labs to these labs, which specialize in Lyme disease and co-infections testing:

Igenex (www.igenex.com)
MDL (www.mdlab.com)

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


Posts: 441 | From USA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
mlkeen
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DJP-

This is excellant. Very informative and held my attention.

Mel


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bg
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dp, EXCELLENT start needing a few tweaks here and there.

My suggestions are:

Lyme/tick disease at the beginning. Too many people still ask me this week, what is lyme?

You showed rodents; add DEER.

You mentioned testing, please add Western Blot IGM & IGG blood tests should be drawn Mon. or Tues. and afternoon labs show more positives than am.

At bottom where labs are shown, show more on IGX. You must print off their online required form, dr. signs & puts his diagnosis code on IGX report. Write on there you want results FAXED to dr., and snail mail paper copy. Also, it's PREPAY since they don't handle insurance, but will handle medicare.

lyme mimics others....add majority of mental illnesses.

Also, add the link for 300 OTHER illnesses lyme mimics with Natl. Institute of Health citations.

300 OTHER medical condtions mimicking lyme disease w/citations and author's
name, Art Dougherty, Calif., 2001, is at bottom of site page! http://www.geocities.com/HotSprings/Oasis/6455/misdiag-links.html

Hope you each find some good info there. Saw it's from Art Dougherty, Calif. in 2001. http://www.geocities.com/lymeart3/misdiag-links.html#disease

You might show Treepatrol's NEWBIE link also that has his & Tincup's combination links together as he's really added more all the time.

I'd underline lyme literate MD.

BOH, spell this out the 1st time you use it. I had no idea until I read next paragraph...ok.

I'd also show the name of the new children's lyme book out for 8-12 yrs. old, cost, etc. from LDA...might be on this site too. I have not checked.

DP, great letter for the parents! Way to go to educate folks.

Bettyg, Iowa

[This message has been edited by bettyg (edited 19 March 2005).]


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Caryn
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Hi DJP,

excellent letter! i am going to print this out and give it to our school officials. i offered lyme info to the school nurse when my son first started kindergarten 4 yrs ago. she was totally disinterested and a bit hostile. this will help. my daughter got the disease from nursing and my son congenitally. not dx until ages 6 and 9. and son reinfected last yr along with mycoplasma.

i live in southeast PA also (bucks co.). unable to see your email address as my computer isn't clicking on things like personal profile or search. thanks for this letter!


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bg
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up for more parent's responses who have young children w/lyme....

Betty G.


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PinchotGail
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Member # 5066

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DJP,
Great job on the letter! I'm keeping this for future reference.......perhaps we can use this at our school as well.

Glad to see you mentioned mimicing ADHD....teachers seem to recognize those signs, but don't know it could really be lyme!!!

Smart move also including the ABC's of Lyme, those docs did a great job explaining how lyme affects our children, the stomach, the eyes, etc. Perhaps you could order some from LDA?? Not everyone has a computer or will take the time to do additonal searching at their library. But perhaps the BOH you mentioned has that in their packet already? At one point in time someone had a grant to mail them to you for free all you had to do was ask.....Anybody else know if they still do that???

Gail


Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
DJP
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Member # 5893

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PinchotGail,

These are the pamplets that will go to parents with the letter:

LymeR Primer
ABC's of Lyme Disease
Tickmarks (Bookmarks)

Yes, they can be ordered for free, but they accept donations.

They will also be included with the packets of information that I will be preparing for the BOH. I'm kind of educating them as we go so they wouldn't know what to put in. Plus, this is a small town and they are all volunteers.

I will also include the page of Internet resources with the letter and the packet will probably consist of most of the items on the resource page and then some.

My plan is to have them ready so when someone calls the BOH can just stick them in the mail.

This is just the first step in a whole campaign that I working on to get the Lyme info out to my town (to start).

I'm asking the library to order information and videos, planning a booth at the town health fair, giving packets of info to local doctors...and more...

I have a rough draft of my plans if you or anyone else is interested in it. I'm hoping that after all this work others will use it in their towns as well.

Well, I have a stiff neck that is just killing me. I can barely hold my head up, so I'm off to bed.

Thanks to everyone for you comments and suggestions.


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