I really want to get the word out about lyme here. Everyone is so ignorant(including drs) and I dont' want to blow this. I just don't know what to tell her.

I can give our history ect. but I need to know what would be the best info on lyme for the public to read. I am herxing really bad right now and I just don't feel like doing alot of research. I doubt I can even put anything together but hopefully I will feel better before Monday.

I wish I had more time. I'm really excited about this though. We own a business and our customers are always asking me how I lost so much weight and I just say that I have been sick. I just don't want to go into it there but I know so many of them are curious. So now they will know plus get the word out about lyme and how serious it is.

I also will ask to read what she writes before it is printed. I hope she will let me. I know how things can get misconstrued.(Is that a word)? I'm so braindead right now.

I know this belongs on the other board but I figured it would get more responses here. I need help and fast. I'm counting on you.

Thanks,
Sapphire

Don't be afraid to make a written list of a few brief points you would like to make.

Don't be afraid to tell the reporter that the reason you are making a list is that Lyme interferes with your memory at times.

Suggestions for topics to cover:

1.) How Lyme is not just a "flu-like symptoms and bull's eye rash" disease.

2.) How prevalent Lyme is in your state (if you know anything about that, or if you belong to a support group that knows). CDC statistics may only be one tenth of the total in your state.

3.) How hard it is to find a knowledgeable doctor, and insurance problems with paying for treatment.

These 3 suggestions came from myself, my kid who has Lyme, and my partner who edits a daily paper.

Hope that gets you started,
Shaz

With interviews, I've found it's very helpful to have some printed info to give the reporter -
& the reporter likes it, too.

If you have a brochure from the Lyme Disease Association or The Lyme Disease Foundation,
this will give her basic info to include.

Go to www.ilads.org
On the left, click "Basic Info"
Print & give copy to reporter.

Highlight facts like -
Half the people with LD do not remember a tick bite.
Half the people with LD do not have a bull's eye rash (Erythema Migrans - EM rash).

List the most important facts you want to include, so you don't have to remember them.
Also, takes a little of the worry off you.

In my opinion, depending on lab results to diagnose Lyme is one of the biggest problems.

Be sure she includes that Lyme is a "clinical diagnosis" -

The CDC & reliable Lyme Disease organizations say that Lyme disease is a "clinical diagnosis",
based on symptoms but also exposure to endemic areas, history of a tick bite, and test results.

The LDF brochure "Tick-Spread Diseases" says:
"A test may support the diagnosis of LD, but cannot be used solely to make the diagnostic decision. No test can definitively "rule-out" Lyme disease."

If it would help you to read newspaper articles, go to the website for Lyme Disease Network of South Carolina www.sc-lyme.org
Click 'SC News'

You'll find a good many articles, not recent, but info is still good.
I've been very pleased with the final result of the interviews.
The reporters were friendly & easy to talk to. They were extremely concerned & wanted to include as much accurate info as possible.

Be sure to have several reliable websites to give the reporter: www.ilads.org www.lymenet.org www.LymeDiseaseAssociation.org www.lyme.org

I like to recommend 2 books that have been very helpful:
"Everything You Need to Know About Lyme Disease" by Karen Vanderhoof-Forschner
"Coping with Lyme Disease" by Denise Lang

If you have more questions, just ask.
I'll be glad to help you in any way that I can.
I know you'll do great!!

[This message has been edited by cbb (edited 22 April 2005).]
 

I just basically told her my story first (my symptoms, my husband catching it from me, how scared I am that my son caught it from me, how many doctors I went through, what my treatment consists of, etc) and then explained to her the other stuff (you don't have to have a rash, you don't have to remember being bitten by a tick, many patients end up seeing several doctors before being diagnosed, the tests are totally inaccurate, etc).

It took about an hour on the phone.

Then I emailed her links: ILADS, Dr. B's guidelines, Lyme Info and some of the newbie links.

She also called our senator and talked to his assistant who helped her alot with info.

She emailed me back and said she could not believe what a devestating disease Lyme is!

She has been contacted about 7 or 8 times from people who wanted to get in touch with me due to the article or letters other people wrote about the article.

So, expect to have people wanting to talk to you!
 

Take a deep breath. You will do fine.

You've been given great advice.

I think what Jill did - telling her story first - putting it on a personal level is what draws a lot of people's attention...and then given the facts they can understand they are in danger of getting it (or already having it) too.

You'll do fine. And even if you feel like, or look like crap the day of the interview -that's just part of the disease.

Our thoughts & prayers are with you - and remember your efforts - your story - can help the lives of many!

Blessings,

------------------
DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com
 

I definitely will have lots of things written down. I sure can't go from memory right now. I'm so disgusted because I was feeling so much better and now I'm just so sick.

I'm not sure if it's a herx or not. I may have just overdone it and paying for it now. I will have to be better by Monday because we are meeting in person. I prefer it that way myself. I will just postpone it if I'm not. I don't want to chance messing this up.

Any other suggestions would be greatly appreciated.

Thanks,
Sapphire
 

I didn't want to forget anything.

My interview was over the phone.
 

I would also suggest deciding on 1 or 2 things you really want said in the article. Whether it be that not everybody gets a rash, the unreliability of tests, that if you are still feeling sick it means you need longer treatment. Whatever you think is most important.

Right those 1 or 2 points down at the top of a page. At the beginning and end of the interview, tell the reporter that these are the most important points.

Also, go back to these points during the interview. For example, if one of your main points is the unreliability of tests then, when telling your story, you can say something like "I am proof that a negative Lyme test means nothing. It took 5 years to finally get treatment because doctors refused to consider Lyme after one negative test."
 

Did anyone save a link to this? It would be great to give to a reporter as accurate background information.

Carol
 

She did a 2-part series:

. my/another woman's brief story,
- the symptoms of lyme
. about the white-footed mouse
and I can't remember the other articles she had in it.

. think it had a brief statement from our Iowa Health Dept. about lyme in it.

fyi, the reporter would NOT let me read what they wrote! So anything wrong, write the paper or better yet, if it's online...just post ALL the corrections to your story there since those online can read them too as FEEDBACK to your story!

I couldn't believe there were 12-15 people who responded to mine including 1 man who called from Texas to talk to me & talked to my hubby since I was gone.

THINGS TO EMPHASIZE from my being misdiagnosed for 34 years:

1. 300 OTHER conditions that mimic lyme and giving them this link:

I came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...Alzheimer's/dementia, Parkinson's, Bell's Palsy, MS, FMS, CFS, IBS, etc. and was posted on www.lymenet.org.

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

Also, see Cheryl's www.lymeinfo.net's extensive web sites on LD Diagnosis, Symptoms, and Treatment:
http://www.lymeinfo.net/lymediseasetreatment.html

2. western blot IGM & IGG being tested for all 16 protein bands for ALL strains of lyme at 1 of these 3 labs:

. IGENEX, www.igenex.com
. MD Labs, www.mdl.net
. Bowen,

3. The number of drs. we have seen to get a correct diagnosis refers back to no. 1 I showed above.

4. 2 new books by LDA published 8-04 & 2-05:

LYME DISEASE: History, Laws, and Regulations ... doing this by memory so not sure if I gave correct name....for adults & I believe was $12-$15 including S/H.

LYME DISEASE FOR KIDS 8-12: Let's Have Fun for $6 includes S/H.

I think it would be great that the writer would include the names of both books, author, price.

We lymies recommend getting copies of these 2 books into all school, public, state, and health education libraries.

4. Have pictures showing what ticks look like but show ACTUAL size stating about them being the size of a period, small o, and large O.

5. All diagnoses need to be made to their state's health Dept. and CDC as well as any other infectious disease.

6. Mentioning about the co-infections and them describing what they area.

I may think of more later, and then I'll add more, etc. at that time since I need to leave now for the day.

I know you'll do all of us a good job telling your story.

Bettyg, Iowa
 

LYME DISEASE IN NAME OF YOUR TOWN

When you picture Lyme disease what comes to mind? I used to think of a bulls eye rash, joint pain, a reliable blood test and a cure by several weeks of antibiotics. Boy, was I ever wrong.

In the fall of 2003 my dog went blind. She tested positive for Lyme. Now, in March of 2005 she is still taking antibiotics and her eyes are still red although her sight has been restored.

In the spring of 2004 I began to feel tired and a had a sore throat. My Lyme blood test was negative. As summer passed I grew increasingly fatigued, then in August my back really started to hurt. From August to October I visited a local doctor many times, had blood work done and several expensive imaging procedures. Late in October I went to the ER at a local hospital with a temp of 101.3. They were clueless what was wrong with me. Another Lyme blood test came back negative.

Thank goodness for the Internet. Here I learned that the screening tests for Lyme are often falsely negative and another test, the Lyme Western Blot, is more useful. Bingo! My Western Blot showed exposure to Lyme, matter of fact, it satisfied the CDC requirements as reportable Lyme disease.

Okay, so now you may think I was out of the woods. Wrong. Through local Lyme support groups I learned there were no doctors in the area whom they could recommend. I am now being treated by a Lyme literate MD in BLANK. I have been on antibiotics for 5 months and am only slightly improved. My Lyme doctor recently told me she expects that after another year I will be 80% better.

I never saw a rash, never found a tick and twice my Lyme blood test was negative. According to an article ``The Complexities of Lyme Disease'' by Tom Grier at the Canadian Lyme website(www.canlyme.com) common and frequent symptoms of Lyme are: a stiff, crunchy neck, visual complaints, heart palpitations, muscle twitches (especially in the face), fatigue, depression, urinary frequency and memory problems. Another excellent website is www.lymenet.org.

I am available to discuss this with anyone who would like to know more.

Name and phone # included here

[This message has been edited by janet thomas (edited 22 April 2005).]
 

Janet
 

You and I both know there is alot of lyme disease going on in KY. Aren't you from the Bowling Green area? Is it BG newspaper?

IMO one of best written articles is by Tincup "It's Lyme Time You Knew". I wish search was working, I'd paste it here for you. Maybe someone else has it saved to their favorites and post it for you. It would be great to have a copy of this for the reporter.

Take care,

Pam
 

She weighs 80lbs. Originally dog was only given doxy 300 mg once a day for 6 weeks. Also corticosteroids because retinas had detached.

Good list for TBD and dogs is [email protected]
send a request to join list.

The vet on this list recommends doxy for 8 weeks at a dose of 10 mg/lb of dog's weight.
Example-40 lb dog gets 400 mg of doxy per day divided into two doses of 200 mg each.

My dog's eyes were not improving even at this dose (she weighs 80 lbs so got 400 mg doxy with breakfast and again with dinner.)

I gave my vet lots of info about ketek and she prescribed it for my dog, 400 mg once a day. Dog seems to be holding her own. She's 11 yrs old and I expect she'll be on abx for life.

--Tell your own story . Mention your hopes
and dreams you have or had for your life
and what Lyme has done to them.
Tell people this is serious stuff.
Maybe mintion --Pinster-- that he had
50 people on lyme net beg him to get
help-- but he just decided to BLOW OFF
lyme disease --like it is no big thing.
Tell what has happened to you-your family-
your job- your plans for the future.
Give the lymenet web site for sure--several
times-- Make sure people know that they
have to act fast--days not weeks--.
Tell of the pain-
the worry- the time-and future lost.
Tell what it dose to kids--to there
young lives-to sick to play-
to sick to have friends- to sick
to go to school- to sick to have
a future to look forward to.
Tell how it dose this to young
and old rich or poor.

--Tell how this could all be stopped--
-- that doctors MUST be trained
on this disease NOW.
Earily treatment it can be stopped.

-Tell people that All it takes is-
One Tick Bite and YOU GOT IT.
-----------------------
Remember--It is the reporters job
to tell your story--to orginize it
but remember its your story.
- be prepaired-
--Write it down-- notes--
Have all address- names -web sites
written down clearly on a paper to
give to the reporter to keep.
Make copies of info.
Be as clear as you can-
Keep in mind that the reporter and
the readers know very little about
this disease - so you fill them in.
---- 101 You will DO GOOD--Jay--

Thanks so much for all the suggestions. I appreciate it very much.

Sapphi
 

Stick with really obvious symptoms and stress that they make it physically hard for you to earn a living, since there is nothing in the entire world you want more than to be a productive citizen who earns an honest wage.

In other words, don't give a list of symptoms that can be confused with clinical depression, manic depression, or vague "female complaints," like inability to concentrate, listlessness, twitching, feeling tired during the full moon, etc. NOTHING about being sad or depressed, NOTHING about feelings, nothing about being tired or lonely or being forced to stay indoors all day long. If you are taking 50 anti-depressants a day, keep it to yourself. If you have an altar to the Goddess in your living room, put it in the basement.

Say NOTHING about friends who have deserted you, employers who have fired you, or how you now drink essence of toad from your local witch doctor because establishment doctors have been mean to you.

Instead, you want to make sure the reporter knows that you are a winner. Say something along the lines of:

"I used to work, run my own business and make $80,000 a year. I was very social and had lots of friends I loved. I climbed mountains, lifted weights, jogged 10 miles a day. I have a family. I used to volunteer with 20 social service organizations, since nothing is more important to me than being an active member of my community (play this up.)

Now I can't walk, I can't see, I have arthritis at age 28, I had to turn down a Harvard scholarship, I can't support my aging parents who need my help, I spend exactly $2500 a month on medication and doctors' visits, I've gone through my family's life savings, I make $5 a week from disability. I would do anything to be an active, productive member of my community again."

If you used to be athletic, talk about sports you played, exercise you once did. If you had academic or work achievements, or made a lot of money, stress that. If you've lost a lot of money because of Lyme, give the reporter a number.

Hard facts, numbers, black-and-white details, injustice to hardworking citizens. No fuzzy details. Detailed research won't get you nearly as far as a clear, simple, straightforward story of events that took place in your life.

[This message has been edited by liz28 (edited 23 April 2005).]
 

These are all great suggestions here, but I can't help but put in my two cents worth.

Your own story will, of course, stick with people and help them recognize their own symptoms. The need for early and CORRECT treatment will come across.

I would try to get them to put the Lyme Disease
Association website on the screen (www.lymediseaseassociation.org) and the Lymenet website so that people know where to go for information AND for referral to an LLMD.

The ILADS guidelines are a good idea.

One point I think is important is that the US Government has accepted the ILADS guidelines as one standard of care.

A group that's part of the Department of Health and Human Services has a website where they put recommended guidelines - and theyve put the ILADS guidelines there.

Check out http://www.guideline.gov/summary/summary.aspx?doc_id=4836&nbr=3481&string=lyme

THIS MEANS ILADS GUIDELINES ARE NOW AN ACCEPTED STANDARD OF CARE FOR LYME DISEASE!!!!

This just happened a few months ago and it puts our
doctors in an entirely different light than before.
There are now two accepted standards of care - the
disgusting standards of the Infectious Disease Society
AND the terrific ILADS guidelines.

This is something we should let everyone know so they can no longer act like we are fringe lunatics.
Ellen