Here is YOUR chance to help others.. and yourself.. and make a big splash! May is Lyme Diseae Awareness month. We could use EVERYONE's help!

Let's do it to it and spread the word! Each one, reach one.

Post your suggestions here or tell us what YOU are going to do to spread the word.

Then go for it!

Here is a good site still around where other ideas are shared.

http://flash.lymenet.org/ubb/Forum1/HTML/024620.html

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If you get the choice to sit it out or dance...

What are the rest of you doing?

Peace and healing,
Annie

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Click here to join Lyme Pals.

But I have an idea. It came from the postings about the recent episode of the Fox show "House."

What if we picked a television show that seriously deals with infectious diseases - like House or Medical Investigation - and start a campaign to get good, accurate coverage of Lyme. My vote would be House, since Medical Investigation is about the NIH afterall.

Then, we start a major letter writing campaign. And we make it a campaign that will get noticed. Maybe we send letters in lime green paper? Or we all write or print with green ink? Or write letters on the back of copies of medical bills...

I also am very busy telling everyone I meet about lyme. A lot of people have been asking me about my absolutely lovely bright yellow tinted glasses with an overlay of brown sunglasses for use in daylight/sun. This gives me the perfect opportunity to waylay them and tell them ALL about lyme.

On my street I have given out pamphlets too. No wonder I am tired, talking tires me out now, can you believe that? Well seeing as I can't see too well, so far lyme hasn't affected my mouth too much. At least the tics/spasms/drooling has stopped for now.

The glasses are really eyecatching. Before I was just an old lady with arthritis or thought to be on drugs. Now I am told I look so cool (like john lennon's wife ono), I even have had some people tell me they are going to themselves some of these yellow specks.

I had a young man who I see quite often stop and ask me about my glasses. Well he told me that he went camping 2 weeks ago and that evening when he got home, his mother had to pull about 20 big tics from just his head. I gave him a pamphlet with Dr. M's info on it, he maintained that he would be all right, but he did put the pamphlet in his truck's glove compartment.

I think I am going to paint something on one of my sweatshirts, one of the sweatshirts that my kids hate for me to wear. Maybe if I am outrageous enough, someone from the local newspaper might interview me.

If we should start now - to give them time develop a "timely" story by May. I think we should provide some facts, as well as our stories - inviting them to further investigate the controversy, the political reasons, and our individual stories & how all the "BS" we've had to deal with has effected our personal, professional lives....and what a burden it has placed on our financial well-being as well.

Let them know we are a great number & that other too may be part of the number.

I think that it's important for us to introduce the idea that many people have been misdiagnosed over the years...much to their detriment.

If a big news show / media talent got a hold of this story & really researched it - & reported on it - I think that things would start to change.

(FYI - There was a NBC media talent that hosted the recent "Time for Lyme" fundraising gala in early April. It was an event held to raise funds for the new Columbia Research center for Lyme & it has Amy Tan as the guest of Honor. I think that would be a good point to - to bring attention to the fact that this research center is much needed...)

Only a major media story is really gonna get the attention this disease needs.

One or two people writing letters isn't going to be enough - if we were to SWAMP them - they would be fools to ignore it.

I think the idea about the green paper is a good idea - also a good idea about approaching the medical TV shows.

I really love the House show - altho the main character really ticks me off at times because of his arrogance - especially how he treated a "chronic fatigue" chracter in the past. I would want them to treat it "correctly" and not blow it off to make us look like hypochondriac fools- but to show the devasting effects of late stage Lyme & its potentially deadly effects.

I also think it wouldn't be a bad idea to follow up the media blitz with a letter writing campaign to our elected officials - our FEDERAL officials...and remind them that the mandate they gave to the CDC several years ago about how the CDC needs to be educating the public, docs, labs, etc about how their criteria is for SURVEILLANCE only...yet WHAT HAS THE CDC DONE? Why are the popular insurance approved labs still using the criteria? Have they not been told? Or are they disregarding the CDC - which I think should have legal implications.

I think I had more ideas - but I can't remember them now, and I'm tired of typing.

Blessings,

In my town my family is kinda the poster child for Lyme disease. Everyone knows I and my 2 children have Lyme. So we get all kinds of calls and visits from people seeking information about Lyme...

Just last month I helped a mom get her daughter who was suddenly unable to walk or talk, to see an LLMD. (Her PCP told her it was all in her head...she is only 16 years old!!.)

She has Lyme and is now on treatment. She is now walking with a walker and talking, though she does stutter and has trouble saying what she is thinking.... It is stories like this that make me work over time to help get the word out about the dangers of lyme.

I often think I was cursed with this wretched disease so I could help others...

As myself and two children all have Lyme, we have been busy working on ways to continue to help get the word out about the dangers of Lyme and also to help educate not only the public, but ignorant doctors as well.

Here is what we have planned:

1.We just got a new shipment of the Pfizer and ABC's of Lyme brochures and I made 50 copies of an information packet I received at the Lyme Conference I attended last summer.

We have made them into little packets of info about Lyme and are leaving them in 10 different doctors office in our county. We are also distributing them to the local schools, veterinarian, Library and town halls.

2. When I attended the Lyme conference last year, I picked up a folder full of info for doctors about lyme, testing , Igenex, co-infections etc. I have made 20 copies and I am sending them to all the incompetent ducks my children and I have seen these past 4 years.

3. We are donating the Lyme Education tape to both my doctor's office and my children's pediatrician's office. The pedi has a VCR and movies for people to watch, and he has agreed to have the tape displayed for public use and will allow me to put the lyme info packets there, for the month of May for Lyme Awareness month.

4. For the past few years, I have donated a copy of the Lyme Education tape to local libraries. This year we will once again donate copies to 2 public libraries, as well as the high school and elementary school.

5. I have asked and was given permission to do a mini speech about the dangers of Lyme, to both my son's Boy Scout Troop and my Daughter's Brownie Troop.

I will again hand out my info packets, as well as some neat bookmarks with pictures of tick on the front and symptoms & dangers of lyme on the back.

6. We are working on setting up a Lyme Disease Awareness booth at our local state fair in October. It cost $300.00 for the booth, so we are trying to earn money for the booth to display information about Lyme.

Lyme tried to ruin our family, but we are beating it. We want to help other families by educating them and their doctors so hopefully they won't have to endure all we have...

God Bless and Spread the word!

(quote)
Ticks will make you sick

May is traditionally Lyme Disease Awareness Month. But we can't just forget about it as we head into the months of summer. Ticks are thriving and hungry, in spite of a cold winter, and will be all year.

Many ticks, just-hatched, are carried by migrating birds and salted across the state as they finish their first blood meal and drop off their flying hosts. We also have ticks which wintered over as immature and adult ticks, and all those ticks which hatched out here - up to 5000 per egg cluster from one tick!

They all need a blood meal from any host animal - including your pets and you - in order to turn into the next stage of their lives. And most will need another feast before summer is out to turn into adults and reproduce.

Ohio has all kinds of ticks. The black-legged tick can transmit Lyme Disease, Babesiosis, Ehrlichiosis and Bartonella. It is a very small tick. The American dog tick can infect with Rocky Mountain Spotted Fever and Ehrlichiosis. The Lone Star tick can pass on Lyme disease as well as Ehrlichiosis.

Rocky Mountain Spotted Fever and Ehrlichiosis can both be fatal if not treated properly and promptly. If left untreated, Lyme disease can lead to severe chronic, debilitating illness and eventually to death .

Ohio tick-borne diseases and their symptoms:

Lyme disease, the fastest growing infectious disease in the U.S. is found in all 50 states and around the world. Over 18,000 cases are reported yearly in the US - the real number being at least 10 times that, as thousands of cases go undiagnosed and unreported, according to the Centers for Disease Control. Ohio usually ranks 12th to 16th on the CDC list.

Symptoms? A rash, sometimes looking like a bull's-eye, expanding in size, is seen in only about half the people infected, and can show up anywhere from 3 to 30 days. This kind of rash means you absolutely have Lyme disease and should be treated immediately. No need to wait for test results.

Other early symptoms include severe flu-like illness, pain that goes from joint to joint, headaches, swollen glands and overwhelming fatigue. Early treatment with the proper antibiotics for at least 30 days leads to probable complete recovery from Lyme disease. If not treated soon enough and long enough, Lyme disease becomes chronic and debilitating.

Tests? Antibodies do not form for up to 6 weeks. The FDA recently sponsored a study of the available tests for Lyme disease and concluded that none of them are reliable. The diagnosis of Lyme disease is still a clinical one.

Vaccine? The only vaccine for Lyme disease has been withdrawn from the market.

Rocky Mountain Spotted Fever, on the rise in Ohio, 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. Ohio had at least one death last year. Immediate treatment with antibiotics is needed.

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.

Take precautions:
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.

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.

Know what to do if bitten:
Do not use gasoline, nail polish, or a hot match to remove a tick.
Use a pointed tweezers or a special tick lifter, grab the tick's mouth part close to your skin and pull straight out.

Save the tick (a zip-locked bag will do) to show it to a doctor. Be sure to swab the bite area with antiseptic and wash your hands thoroughly.

The Vector-borne Disease Program of the Ohio Department of Health will identify and test any ticks sent to their offices. (Call 614-752-1029 for directions.)

Here's a link telling about a school district that is sending home green pamphlets about ticks and their dangers & how to remove ticks, etc, etc.
http://www.newtownbee.com/Features.asp?s=Features-2005-04-14-12-46-51p1.htm

What a great idea - to educate the children (& hopefully their parents!)

I think another person indicated they'll reteach a class - which is aljways good.

But we all aren't school teachers - and even those of us that are - we don't always feel good or sane enough to go back...BUT it doesn't take much effort these days to send info to a school district's superintendent thanks to the internet.

Not all superintendent's may be as receptive as others - but sometimes you can't worry about where a "seed" lands - only that you cast it out.

Nothing grows though, if you keep your seeds in your pocket.

OK - sappy analogy. Hey, I'm tired & in pain, cut me some slack!

Blessings,

I can't tell you how angry I am. How long would it take out of everybodies lives - 20 minutes?

Have had some health emergencies taking precedence..

That upsets me too - I'm so sorry the principal isn't understanding.

How understanding is the school board, and the superintendent?

I'm not saying you need to stir up a bee's nest here, but if you approach the "educators" with the sense that this is something of great imporantance to the STUDENTS - like knowing how to avoid LD, recognize the signs so they can get immediate medical attention and not suffer much like your child has - then maybe they might be more receptive, and your targeted audience might grow a little bit larger?

At the very least, do you think they'll let you distribute info about it?

Just an idea.

Unfortunately, it's a private school. We put him in a small school after he got lost in public school. He had too many problems so we thought it might help him get more attention. Instead the teachers just think he is a screw-up. He has had the worst year, hates school, believes that his teachers think he is naughty and has gone from A's to F's.

We're not sure what our rights are there. I have been doing some research recently to find out, The disabilites act talks about a fair education for children with disabilites in public education; but I did come across something called "Part III" today that may have some vague rhetoric

For example, they won't let my son go to bathroom when he as to go (how about those diarhea cramps on the abx? does that count has a bathroom trip?; won't let his therapist talk to the teachers (even though they want to) becauses of all his neurophsych problems, etc. I guess you can just call me Dr. Smartmouth (and I know they are just sick of me and my families problems). I am fighting for my other son's rights as well since he has lyme also.

I am trying to pick my battles, but am becoming exhausted by the lack of concern. The irony is that I just diagnosed one of the teachers with lyme.

regards
paisley

She said that she thought that his class needed something to ground them and give them perspective and a cause. I said that I would get the ABC;s of Lyme for everyone in the class and get one of the green silicone bracelets for alll of the kids since that's what this kids are into right now. I guess she was pretending to care that day. I got in trouble by her one day for parking in someone's designated parking spot because all of the handicapped spots were filled. Shame on me for not walking that day!

I'm adding to my to-do list: write a scathing, intriguing letter to Michael Moore - movie director of controversial subjects.

I started another thread with that info, if any are interested.