Lymenaide

Thursday we filmed for the PSAs in Hollywood, CA. Crazy, who would have ever thought that getting Lyme disease would land me in Hollywood working with celebrities!

It was an amazing day that started very early. I was up at 5:30 am to be ready for the day. Not the easiest thing for a Lymie as I’m sure you all know!

We had seven amazing stars volunteer to lend their voices to promote and support our cause. They were all happy to be able help spread Lyme disease awareness.

This was a big production! We were in a real studio, it was huge! We had a full crew of professionals who work in the film industry. All of them donated their time skills and equipment to the PSAs and to spreading awareness about Lyme disease.

All of these people hear us and they want to help us be heard.

The best part is that they are all willing to continue helping in any way they can. Many of them are tweeting about Lyme and the project already!

AND, we have more celebrities lining up to help. We are going to be meeting up with Candice Accola next week. We also have plans to film and interview more celebrities, some who have Lyme, this summer!

It is amazing to see and experience the momentum this project is creating. We are thrilled with the response we have received and are thankful to those who are and those who will be involved.

Here’s the Cast and Crew from Thursday’s shoot-

Amy Paffrath

Andrew Seeley

Davida Williams

Kayla Ewell

Katie Seeley

Lauren Mayhew

Katerina Graham

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Sonya and I filmed a PSA of our stories too!

Sonya Nelson

Ashley van Tol

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(Don’t worry, I rolled my pants back down before filming!)

Our Awesome Crew-

Director………………………………Z.S. Grant -AndWhatProductions.com
Producer…………………………….Chris Latimer
Director of Photography………Paul Samaniego
Art Director………………………..George Nessis
Director’s Assistant……………..Marjorie Cohen -MarjorieCohen.com
Sound………………………………..Luke O’Gara
Script Supervisor………………..Chante Theriot
Teleprompter……………………..Bev Feldman -starprompt.tv
Photographer……………………..Heidi Laughton -HeidiLaughtonPhotography.com
Makeup Artist…………………….Tara Loren

Thanks to Siren Studios for giving us a special rate and making this amazing day possible.
Special thanks to the project non-profit sponsor, PANDORA

Candice Accola

Hi. My name is Candice Accola and I am so grateful to lend my voice to spread Lyme Awareness through Lymenaide.

Almost four years ago I was home in Orlando, Florida, visiting my family, and had the opportunity to catch up with one of my dearest friends, Teri Raser, whom I had grown up with.

In elementary school we performed together in our girl group, Girlzone. In middle school we were going to overnight camps. By high school we were double dating to homecoming.

We found ourselves on a friends porch, a year after graduating, and it felt like our lives were just starting. Teri, enjoying her new life as a student at University of Miami. Me, working to start my career as an entertainer in Los Angeles. We had a blast catching up and looked forward to whatever was next.

When, months later, she told me she was sick, I felt it was unfortunate, but I saw (and still see) my friend as the invincible woman. “It’ll pass”, I thought. With a continent between us and busy schedules, we didn’t keep in touch too often. Texts of “Hello’s” here and there.

Little did I know, while I was going on auditions, Teri was touring the top doctor circuit, reaching all the way to Columbia, trying to find out what was making her sick. What was causing her blackouts, seizers, blinding headaches, heat intolerance, and severe Autonomic Nervous System Dysfunction (can’t stand or sit up without blacking out after a few minutes).

Months turned to years. And years turned into a diagnosis of Late Stage Lyme disease. I could not believe it had been years and, not only was she still sick, but that she had Lyme.

All I had ever heard about Lyme was that you got it from a little tick bite. I never knew this disease was not so little. It has the ability to take over your life. I was shocked to hear about all of her symptoms and what this disease had put such a beautiful young woman and her family through. This disease had taken over my friend’s life.

I was even more shocked to learn of the politics revolving around the disease in the medical community. Doctors who’ve saved the lives of patients with Lyme getting their licenses revoked. Which made it difficult for my friend and her family to find a doctor to treat her. (Difficult is an understatement)

For such a complex disease, for all of those who have it, and for all of those working to find a cure, why do most people only know Lyme comes from a tick bite and NOTHING of what it can grow to become?

Why is almost every personal account of Lyme littered with a list of misdiagnosis’ by doctor after doctor?

Why was I not already aware of the seriousness of this disease when my friend told me she had it?

I admire the strength and solidarity of the Lyme community more than I can say with words. I’m ready to learn. I’m ready stand. I’m ready to lend my voice. Let’s Paint May LYME GREEN!

Please help by DONATING TO PAINT MAY LYME GREEN and participating in awareness activities this May!

Candice Accola plays Caroline Forbes on the CW’s hit series, The Vampire Diaries. Click here to see her CELEBRITY BIO

DONATE TO PAINT MAY LYME GREEN (click here)

Eric

Ashley does such an amazing job at keeping us all informed at what stage in the campaign we are at, what is currently going on, and we all need to do.  She’s leading an army of people involved in one way or another in this campaign.  As a member of the NY Team of the campaign, I wanted to share a little update on some of the things that we have going on here in New York right now for the Paint May Lyme Green campaign, which as you can see is truly a coast to coast project.

For just over 3 days now I’ve been working on a post to give an update on what the NY Team of the Paint May Lyme Green campaign has been up to, and what we have planned.

So I sat down, went over a list I made with some of the team, and started writing.  I had it reviewed by two people, who each gave me their assistance and input on it.  At that point I then had 3 versions of a post I still hated.  I promised myself before my favorite show, Chelsea Lately, comes on at 11 that I would have an update out there.

So I began to print all 3 copies of this post, which you remember I still hate, when I realized the cord for the printer is upstairs.  Well obviously, there is no way in heck I’m about to walk upstairs for the cord, so I closed all 3 copies and I’m just going to give you the basics.

First, let me introduce you to the players:

There is me, I’m Eric.  If you haven’t caught on to that yet then we have a lot of catching up to do, but for the sake of those who are not knew I will proceed (but feel free to email me if you’re new, I love “meeting” and talking to the people who read the site).

So me, Alyssa of Rhinebeck, Kacie of Poughkeepsie, Kim and Heather of NYC make up the New York team of the Paint May Lyme Green campaign.  Let me point out that this is just the original group that signed on to working with Ashley here in NY.  There are hundreds, if not thousands, of other people here in NY extremely occupied in spreading Lyme disease awareness.  Some with their own campaigns, some by doing showings of Under Our Skin, and many who are helping us with our campaign in any way they can.  But after this initial group many people began to join in, supporting us in many ways.  From gathering info on whom to contact, to actually writing letters for us to send to those we needed to contact.

Here’s a quick list of what’s of been happening:

-          We created several different groups on Face book.  One for those of us with Lyme disease here in the Hudson Valley.

-          We joined with Dutchess County legislator Joel Tyner, helping him with a petition and resolution he had presented to the county.  He became involved in his part upon hearing about the grassroots campaign that was started in CA and spreading across the country into his own county.

-          We also created a virtual event on face book, where everyone is changing their profile pictures to something lime green.  It’s not even May and hundreds of people have already begun coming up with amazingly creative ways of painting their profile pictures lime green.  It is exciting every day to see as more and more people join in on that to spread awareness.

-          We have someone working on getting us included in Rhinebeck’s local Memorial Day parade to march in lime green and promote awareness.

-          We are also all providing some version of our “story” to be able to share with others come the beginning of May.  We have been able to go to several support groups, in NY and CT and interview people with Lyme disease.  It’s been emotionally taxing at times hearing one devastating story after another, but it’s also humbling to see so many brave individuals willing to stand up and tell their story to help prevent someone else from going through that they went through.

-          We’ve also been able to film several other individuals with Lyme, parents of those with Lyme, and have plans to film a Lyme specializing doctor next.  Each of them sharing their story in an attempt to help raise awareness.

-          We are creating individual pieces of each of the people interviewed, as well as creating several short documentary style pieces using parts of all our interviews.

-          We are providing 2 and/or 10 minute videos telling our own stories in addition to having our written stories plastered all over websites and social networking sites.

-          We have been asked to speak at some of these support group meetings on what the Paint May Lyme Green campaign is, and we’ve been able to go in and explain it to them and what we are going to accomplish with the campaign.

-          We’ve been asked to speak at different viewings of Under Our Skin, and alongside legislators in town and or city meetings.

-          We have been helping to raise the necessary funds for the PSA to be produced, including asking our friends to donate to the cause for our upcoming birthdays instead of gifts.

-          We have organized a few viewings of the film Under Our Skin our local areas, to be added to the many other showings already scheduled.  Dr Steven Bock has agreed to speak at some of the ones we have organized, we are very lucky to have a Lyme expert on hand to answer questions.  The flyers and emails have been going out to many people letting them know how important it is to see this film.  Some of our friends have written heart felt letters pleading with local politicians and media to please attend a viewing of this film to learn info that could save their, or a loved one’s life.

-          We are also joining the hundreds and thousands of people in other states as we put up lime green ribbons, magnets, signs etc for the month of May to make Lyme disease visible.

I think that pretty much gives you an idea of what we here on the NY team of Paint May Lyme Green campaign have been up to.  There’s still quite a few days left before May actually arrives, and then we have an entire month to raise our voices and let people know what Lyme disease can do.  Through this awareness we will save lives, or help others get their lives back.

This campaign is bigger than any of us here in New York, or anyone in any other state.  But it is an amazing campaign, under the creative direction of Ashley of Lymenaide, and so many of us saw what an amazing opportunity it would be to be a part of something so big, and so important…and more important, so possible.  There’s no reason we can’t spread awareness of Lyme disease this month.  So we join with our friends and partners in vision across the country to get ready for May 1, when we will really get the word out about Lyme disease.  There will be no excuses by June to not know about Lyme disease.  We are going to make sure of that!

Stay tuned for more updated as we approach May 1 and what the NY Team of this campaign is doing in conjunction with everyone else across the country.

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Alright, is everybody READY???

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May 1st is 5 days away!!! This is important. If we want to see change in the future we need to do something now.

Every single one of us matters to the impact of this May’s awareness campaigns.

Create a plan for the 31 days of May. Do something everyday!

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.What you can do with out leaving your house:

• Paint your facebook profile lime green.
• Post something about Lyme everyday, target your non-Lyme friends.
• Send a letter to your local newspapers, radio and TV stations. Ask them what they are doing to educate your community this May. (click here for sample letter, feel free to personalize and use)
• Hang lime green ribbons in your yard or put a poster in your window.
• Add your written or filmed Lyme story to learnaboutlyme.com.
• Donate to the Paint May Lyme Green public service announcement production. This is a big one. We haven’t reached our minimum goal yet. Let’s make this happen!!! (follow the donate link to learn more about how to donate)

Feeling well enough to head out and spread some awareness around town!

• Pass out flyers and/or brochures.
• Wear Lyme awareness t-shirts. There are a lot available on ZAZZLE.COM (you can also find buttons, magnets, stickers, hats and more)
• Get a Lyme disease awareness ribbon magnet for your car. RIBBON MAGNETS
• Hang green ribbons, posters, and flyers (with permission) in your neighborhood and town.
• Talk to people!!! Tell them about Lyme disease.

Tips for social media- facebook, twitter, myspace…

• Target your non-Lyme friends. Don’t preach to the choir, share with the people who don’t know about Lyme.
• Make your posts personal, tell your non-Lyme friends why you are posting information and links and why it is important that they read them.
• Don’t inundate them with too much information all at once.
• Spread your posts out over the day, more people will see them this way.

Yes, your home pages and inboxes are going to be filled with Lyme related posts. Our goal is to create an online presence that can not be ignored. If your home page and inbox are not overflowing, we aren’t making enough of an impact. (Don’t worry everything will go back to normal levels come June)

We, the Lyme community, are the educators this May. We are educating people, spreading awareness and the truth about Lyme disease. We can and we will make a difference, please join us!

You can follow this link to read about what I am doing for to spread awareness this May-
My 31 Days of May Plan

Yesterday the IDSA announced their verdict of the “Final Report of the Lyme Disease Review Panel”.

Based on its review of all the evidence and information provided, the Review Panel determined that no changes to the 2006 Lyme disease guideline are necessary at this time.

Were we surprised? No, I don’t think that most of us were surprised at all. That doesn’t mean that we weren’t disappointed.

Does this decision, if you can really call taking eight months to decided to do nothing a decision, mean anything? I’m not sure.

I would hope not. I hope that it just means we are stuck in the same unfortunate position we were in before. I know that sounds bad but honestly I hate thinking about what else this “decision” could mean.

More proof for the disbelievers. More fuel for the insurance and disability denials. More people not being diagnosed, being misdiagnosed and being ignored.

So what do we do?

We posted all day on facebook and twitter commiserating with our fellow Lymies. I’d hazard to guess all those posts went more or less unnoticed by our non-Lyme friends and followers. This is not news in their world.

What may not have gone unnoticed was the number of profile pictures that suddenly turned lime green. I know that I have had more than one non-Lyme friend comment on my new profile shot!

This is the answer, this is how we fight back. Egging the IDSA building or somehow infecting the committee members with Lyme sounds great because we are pissed off. However, these are not realistic or appropriate actions.

We need to fight back by telling our story louder than theirs. The importance of this May’s awareness campaigns just increased exponentially.

Our side of the story needs to be more compelling, more interesting, more personal and more believable. This shouldn’t be hard, I mean seriously, how many people do you know who are going to sit down and read anything that the IDSA said?

I’m sure more of your friends and family will stop to look at your lime green profile shot.

In a competition between posting the IDSA guidelines or your Lyme story, it is going to be you that they choose to read about.

Is the IDSA decision on Lyme going to get any airtime on television? Maybe a little. Is anyone going to notice? Only us Lymies.

How about the Lyme PSAs we are making? The ones with real people and celebrities who are suffering from Lyme or know someone who is suffering from Lyme. I guarantee more people will spend their 30 seconds watching that, and through it they will hear our message.

Yes, the IDSA decision is a setback for us, but we need to continue to move forward. Join us this May in spreading awareness and exposing the truth about this devastating disease.

What You Can Do (colored text = links):

• Participate in the numerous Paint May Lyme Green campaigns
• Change your profile picture to something lime green
• Share your stories and join the viral campaign
• Hang green ribbons, pass out flyers and talk about Lyme this May
• Donate to the production of the Lyme television PSAs we are making

May is Lyme Disease Awareness Month, Let’s Get Heard!

We are starting to compile the list of television stations that will be receiving the final PSA (public service announcement) and Press Kit this May.

If you want to make sure that your local media gets a copy, leave a comment on this post with the following info:

1. The contact name of the person at the station who the package should be addressed to.
2. The address to send the package to.
3. Write a short testimonial to your local media telling them why it is important to your community that the Lyme PSA gets air time.

Tips on your SHORT testimonial. 250-300 words only! Focus on the importance of the message to your community such as:
The risk in your area.

• How many cases of Lyme you know of or have been reported in your area.
• Let them know that May-July is the height of tick season.
• Emphasize that May is Lyme disease awareness month.
• Any known statistics for your area, include your source.

Stations have to air PSAs but they get to decide which they want to air. Your job through your testimonial is to help convince them that this is a present issue affecting your area.
The PSAs are being filmed during the last week of April. They are tentatively scheduled to be sent out the second week of May.

Why the second week? Because, if the news media is seeing a lot of Lyme awareness activity being done by the people in their area, they will be more aware of the issue. When they receive the PSA and Press Kit, they will be more likely to air it because YOU have already convinced them that this is an issue that needs to be addressed in your community.

We will also be sending the PSA and Press Kit to shows like Oprah, Montel, and well, you tell us which shows you think it should go to.

Be sure to include the following 3 elements in your comments.

1. Your SHORT testimonial to your local media or the talk show host.
2. The address where the PSA and Press Kit need to be sent.
3. The name of the contact person that the package needs to be addressed to.

Every element of the Paint May Lyme Green campaign depends on the participation of the Lyme community. You are the people with the power to make this campaign a success. Together we can make a statement and a difference!

You can also email the information to ashvantol@lymenaide.com

Allison's Family

Wow, to capture all the issues I have had through out the course of this disease seems to be an almost impossible task. It all started at the age of 5. I was living in Bohemia, NY. This is about the time I had a strange red ring growing larger and larger on my back. It was believed to be a reaction to a spider bite.

Well, after that there were years of vision problems, memory lose, ear and throat infections and a constant battle with what the doctor thought was the flu. Around age 8, I began to have serious problems with my vision and balance. I began to experience a form of double vision. However, I would not be able to see what was directly in front of me, only the things off to the side. Weird!

Then, the seizures started. I was taken to the hospital and released with the diagnosis of Epilespy. Things continued to get worse for me. I was still sick all the time. To make matters worse…nobody believed that my whole body hurt.

Two years later, at age 10, I was taken off my med. for seizures. That lasted for about 6 months, until I had yet another Gal Mal seizure. This one was really bad! I didn’t come out of the seizure for two hours. After this seizure, my symptoms were significantly worse. However, nobody believed me!

I was hospitalized a couple of weeks after my last seizure and spent approx. 2 weeks in a teaching hospital in NY. Here a whole gambit of tests were run. The conclusion was…I was lying about my symptoms and doing it for attention. REALLY?!?! I could walk, talk, I slept the majority of the day and night away, the vision problems were present, so on and so on….

Bouts of meningitis symptoms plagued my teenage years, along with joint pain. I had two spinal taps by the age of 15 and when the wanted to do another one around the age of 17…I said, “No!”. I knew from past experience that they would not find what they thought they would. I knew that this would also pass.

The problems with joint pain progressively got worse through my teenage years. I was diagnosed with Sciatica. I couldn’t walk when it kicked in! This continued as I entered into my 20′s. When at the age of 20 I collapsed my lower back. When the Orthopedic surgeon had seen my x-rays, he told me that I had the spine of an 80 year old woman. Not good!

At 21, I had my first of 5 children. Yes, I am truly blessed by God! However, after the birth of my first child I started feeling sick again. I had attributed the way I felt to being a new mom. Then, the ear infections started. I battled them for a few months and they eventually went away. However, the joint pain started to come back and wasn’t going away.

The second pregnancy was plagued with issues. I had bladder infections and I had gone into preterm labor at 29 weeks. The doctor thought that I might have Strep B. I was started on antibiotics for the Strep. After delivery, Gabriella wouldn’t breath. For two minutes she gave us a problem. Eventually she came out of it.

To this day, Gabriella has many symptoms that he doctors cannot diagnose as one or two or any particular disease or disorder. It is my belief that she suffers from Lyme, but what do I know? I’m only her Mom! Her tests have come back and she in fact has some bands..but not enough. She does have some antibodies… but not enough. I will also note that this is the same for my other kids that have been tested (3 out of 5).

I had four more pregnancies -one miscarriage and three more children. During these pregnancies, I suffered from bladder infections, issues with veins blowing out in both my hands and legs. I still have that problem. Ugh! By the fifth child I was a mess!

This last bout started in February of this year and has had all the problems I could think of. It started with CFS, Fibro, migraines, noise sensitivity, veins blowing, vision problems – including lots of floaters. Then, slight tremors and poor memory were starting to become an apparent problems. In May, I was hospitalized for what they thought was Cardiac Failure. They found some inflammation around the heart and irregular heart rhythm. I was released with heart meds…. but no answer to my problem. Oh, by this time I had also been suffering from an ear infection for approx. one year. My primary had me on Zithromax for approx. 6 months by this point.

Now the troubles really became severe. My joints hurt to the point that no one could even touch me. I would cry in pain. The noise and light sensitivity was so severe that I could not be around my kids. My heart was getting worse, the tremors were taking over and the vision and memory were so bad that I was really thinking that I could die…and no one would ever know what this was.

I was so feed up that I spent a night on the computer and typed in all the things that I was dealing with. Lyme Disease was the first thing on the list. I had been tested before for it… and well lets just say…I don’t want to go there!!! It was positive. My doctor didn’t believe it! So, I asked for a second opinion. He made me an appointment a month later with a ” Lyme Specialist” a month later. I was in really bad shape. I could barely walk, talk or stay awake. I was admitted that night and spent 10 days in the hospital for Chronic Lyme Disease. Picc line, Spinal tap, lots of pain meds., TEE testing, EKG, Ultrasound, numerous blood tests…that was my 10 days. However, according to my primary…I still didn’t have Lyme. Eight pillows in my bed…. because my body hurt all over and I couldn’t have anything but the pillows touching me…but no Lyme…according to him.

He was very wrong! His own tests proved him wrong. The multiple tests in the hospital prove him wrong! My body is a testimony to how wrong he was…for ten years since the first test he ran! I was positive the whole time.

Now, the insurance battle begins. I was on antibiotics for one month. I was told by the “Lyme Specialist” that that was the standard treatment for Lyme. Anything I had suffered from that day on… I would have to LEARN TO LIVE WITH! “Tell that to my husband and five kids!”

I was back sliding and had no one to help me. My “Lyme Speacialist” was a joke! My primary still denied the diagnosis- even with four groups of Specialist confirming it! I had one week to find a doctor that would help me! However, due to insurance regulations, I had to come off my picc line. I cried and I was angry!! This is so unfair!

With lots of prayer, I was able to find a doctor. He was right here in Orlando. He could restart the IV because the insurance had to have it noted that the treatment failed. I was now a guinea pig! Instead of the Picc, he put me on oral antibiotics. The doctor knew they would fail…but had to do it. I slide even further down.
I was so sick after a month… that I was put back on the picc line. This time for two months instead of one. I was also put on a Lyrica to help with the pain and tremors.

I was having some pretty good days. However, the IV med was to stop the day after Thanksgiving…and it did. I didn’t feel like that was realistic….. but the insurance will not cover it any longer then that. I was fearful of losing the one thing that four out of seven days is helping me be a wife and mom!

I did lose it. And the story continues….I am back on the IV! The attempt to pull me off my meds failed. To top that… I was told by my current ID doctor that “This is the last time I can prescribe IV for you. I refuse to lose my license over treating you!”

Today, I am lucky to have found a true Lyme Literate Doctor. Dr.J is the best in the field, but he does take insurance because the insurance companies will go after him and have him License taken away. I can not reveal his name, as my will attack him. This fantastic doctor is working to save my life, as I would have died last year.

The hard part of all this is the fact that he doesn’t take insurance. We pay everything out of pocket. This month I may mot be able to see him ; we have depleted all our life savings We have $5,000 for a treatment that will cost $8,000 plus airfare and hotel stay for two nights. As I have been so bad that they told me I a not allowed to leave that same day.Lyme is a life of HELL! What’s worse is no one acknowledges the fact that WE are here, and we do deserve the insurance companies and the IDSA Board (who my have conflict of interest) to acknowledge our disease. I don’t want to die because we have run out of money to save me. I Also don’t want many kids who have Congenital to have the problems I do! We need help in getting awareness out there. I will Rally Against Lyme Ignorance- This is also a facebook group.

Recently there was a misunderstanding about the Paint May Lyme Green campaign and the purpose behind it. To clarify and clear up any confusion we have written the following and included a message from our main non-profit sponsor, P.A.N.D.O.R.A.

What Paint May Lyme Green IS-

Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community.

Paint May Lyme Green was started by Ashley van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public.

Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month.

Under the title “Paint May Lyme Green” Ashley and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month.

Lymenaide and And What Productions (Ashley and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement.

Ashley and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money.

Not being non-profits themselves, Ashley contacted existing Lyme organizations with 501(c)(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations.

P.A.N.D.O.R.A. believed in the proposed project and in the people behind it from the beginning.

P.A.N.D.O.R.A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R.A. go to Paint May Lyme Green PSA project and awareness events.

Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R.A. for use by Lymenaide for future Lyme related projects with Lymenaide, including making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns.

P.A.N.D.O.R.A. has, in keeping with the core values of their organization culture, has supported and encouraged us take steps to contact other Lyme disease non-profit organizations, patient groups and interested stakeholders so they too can have the opportunity to sponsor or participate in the project. This is a nationwide project, which we believe will create an amazing impact with the general public creating greater awareness to the Lyme disease patient community plight.

What Paint May Lyme Green IS Not-

Paint May Lyme Green is not raising money for P.A.N.D.O.R.A.’s general fund or any of P.A.N.D.O.R.A.’s other projects or affiliate projects aside from Paint May Lyme Green.

Paint May Lyme Green is not raising money for research. It is raising funding for an advocacy initiative project, which will educate the general public.

Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R.A. is the main sponsor of Lymenaide’s project making it possible for us to receive tax-deductible donations from others who support our awareness cause.

Paint May Lyme Green is not a P.A.N.D.O.R.A.’s project. P.A.N.D.O.R.A. is Paint May Lyme Green’s viral and PSA campaign sponsor. We are bound to P.A.N.D.O.R.A. donor grant requirements that specifies that we have to abide by the project outline, timeline yielding the intended result: To create a PSA for Lyme Disease.

From Marly Silverman, the founder of P.A.N.D.O.R.A.:

Our sponsorship is transparent and it is quite effective in the process of acknowledgments, honoring and promoting each associated cause we have on Facebook, and in this case Paint May Lyme Green is a very successful one. Any insinuations contrary to what I am stating here is simply a malicious rumor. Effective Non-profit organizations are bound by specific code of ethics regarding professional behavior and conduct. Non-profit organizations, which are 501 c 3 charitable organizations, must also adhere to IRS rules & regulations. Let me be quite clear on this issue: We adhere to both IRS 501 c 3 rules as well as to the professional behavior and conduct of a corporation strong code of ethics. Our organization culture is built by the core values that our mission embraces: collaboration, partnerships, friendship, respect, honor, integrity, grace, and providing financial grants in support of individuals and other organizations that we feel are doing great service to the community they effectively serve or belong.

Simply put, we are a bridge organization. We are facilitators for great talent (as in the case of Ashley Van Tol), and of great initiatives, that indeed will make a difference in the lives of millions of individuals in the U.S. and beyond.

If you have any questions or concerns regarding this project you can contact Ashley van Tol at ashvantol@lymenaide.com

1998 was a year I will never forget…. My mother passed from pancreatic cancer, my brother business burned down and my neighbor’s son hung himself off the back of our shed on new years, my brother and I were slowly regaining our footing after it seemed the rug had been pulled out from under our world.

I was the type of girl who grew up camping hiking sitting in front a bonfire and just enjoying the outdoors anytime I could, that May I noticed I had something on my back I had tried remove it but as I pulled my fingers away I noticed blood on 4 of my fingers, for about 2 weeks I tried to remove a scab that had formed there, on my back but with no luck.  I had my brother take a look for me and help me….. as I lifted the back of my shirt I heard him gasp, all I could do was scream and run, he said “you’ve got to come back here, I have to get it off” he removed the scab and with it came skin and as I turned he showed me the tick that had been encased in its own blood sack it appears it had died on me. I knew nothing about Lyme, or anything else at this time, but something told me to put the dead tick and the scab in a zip lock baggie and keep it.

The summer continued I was raising a beautiful 5 year old daughter alone, and we spent our days swimming and taking field trips into the woods behind our home, climbing trees together… as fall approached I was getting her ready for her first day of kindergarten, I began feeling extremely tired, felt like I had a touch of the flu, by the 3 rd week of September I would get her up for school and as she had breakfast I would lay on the floor hoping I could walk her to school, I felt like every bit of my energy had been taken out of me. I would come home back into bed for a few hours before I needed to head to work,

Then the headaches and stiff necks began chills and low grade fevers, the sweats and the blurry vision, the dizziness and the stiffness in my legs….. I was not one to go to the doctor much at this time in my life but I remember saying I will make an appointment. Sometime shortly afterwards I did got to the doctor he put me and antibiotics for a sinus infection, I started to feel better for about 1 months till the symptoms returned and got worse fast. Another trip back to the doctor more antibiotics this time after I finished the round of meds I didn’t feel much better and returned again……this went on for months, then my stomach began to hurt and my head still pounded and the stiff neck and dizziness became so bad I would just cry, after my daughter was a sleep.

This went on for 4 years.

In 2002 I told myself enough! And I sought the help of a doctor a few blocks away…… I had gone in for my appointment and told her the whole story of the strange things that had been going on, she said I think you have Lyme disease, I said why I had only been bit once in my life why do you think that I could have Lyme? She said because I have Lyme, and I want to run some tests…… 10 days later I went back and she began with you are positive for Lyme and rocky mountain spot fever…… my head just spun around she said I will make an appointment with a infectious disease doctor for you and you will need to go to the hospital in the morning to have a Picc line put in..7 weeks later they took the Picc line out and a year later after taking 2 doxys everyday I felt almost like myself again.

I was like, alright then, I began to Kayak again I could hike and bike and I thought my life is back.

Well that lasted for about 2 years, till the headaches came back and then the seizures began and the stiffness in my legs and the stiffness in my neck, the never ending sinus infections, I knew the merry-go-round had started again, so after the 1st seizure I went to my 1st appointment w/ a neurologist who had a MRI done, when I got those results I knew my life would never be the same…. It seems I have had a serious of small strokes and the white dead matter in my frontal lobes is quite extensive. I can no longer talk with out forgetting what I was saying, I can no longer wake rested, nor has there been a day that goes by where I have felt good, I miss my life as I once knew it.

I wish my story ended there but it does not. My beautiful daughter, now has Lyme she is 17, Her strain of Lyme was found in her spinal fluid, and it seems the nightmare continues, she has had to use a walker for the better part of the past year……….I have learned that there are 300 hundred strains of Lyme in the world with 100 stains here in the United states, it seems the strain that she has is 10 times worse than mine and they tell us she has most likely had rocky mountain spot fever for 10 years and that’s she may have been infected by me… I know now that I was infected by Lyme for 1 reason so that I would KNOW how to help her.

It will take about 2 years for her to recover, she has missed out on a normal school life, and will be getting her GED in 2 weeks, and she was a 4.0 average student till Lyme ruined that for her. How did lightening strike twice here in my home I will never know but I will do what ever it takes to tell everyone who will listen to our story in the hope that it could save them years and years of suffering.

Gail Pueschel-
(I just forgot how to spell my last name)

My name is Tamara Owens. I showed up in this life back in April of 1967. My life was pretty normal when I was younger. I had things to overcome, like anyone else. I have always been artistic and that has helped me appreciate the beauty in the world. I consider myself an optimist. I always try to focus on the good parts, even when it seems to take a sunbeam and a microscope to track them down. I am the “funny one”. The friend and family member who makes light and laughter of any situation. I think all of this has kept me from staying too long on the dark side of my Lyme disease adventure. It is always there for me, but I try hard to avoid it. When it draws me in I sink quickly and it takes days to come back out. I know my life will never be as it was before “it” happened. I miss me. This is my story.

I lived a pretty modest life as a child. My parents would be classified as “lower middle class”. I was adopted by my maternal grandmother and her husband. My birth mom was always around, but in a technical legal “sister” capacity. Every summer my mother would take me and go to the place she grew up. It was a tiny town called DeWitt , Arkansas . This was always the highlight of the year. I loved going to my grandma’s and I had a favorite cousin there to play with. We did this every summer, to the best of my memory. Only two summers stand out in memory above the others. The first being 1978. This was the summer I had a tick stuck to the top of my head. I’m not sure what my mother did to wrangle it out of my skull, but it left quite a scar. On top of my head since then I have had a bump. I have accepted this bump as part of my personal landscape and never given it much thought, unless it itches.

The second summer of memory was 1980. This was the summer I lost my favorite cousin, Joey. On July 5 he was accidentally shot to death by his best friend cleaning an “empty” gun. My family was raised with firearms. My father had over 100. I support gun ownership, but education is the key. The other childs’ parents had not been so diligent. My cousin was two years older than me and my hero. He even taught me how to drive. It was the first real tragic and painful loss of my young life.

Flash forward. I give only these two examples from my childhood because of their possible relevance in haunting my adulthood. Was that the tick that got me? Did I carry Lyme disease all that time? I doubt it, but it was worth considering. I did happen to go to the woods outside of Chicago , Illinois and St. Charles , Missouri in June of 2003, so the tick that got me when I was 11 years old seemed to be coincidence. July 5, 1980, lost my cousin. July 5, 2003, lost my life. That is where my Lyme story begins.

Travel with me. I am not alone. There are thousands of us. I cry to read their stories and long to help. Then I remember no one has been able to help me so how can I help them? All we have is each other. All we can do is listen. Perhaps one day the medical world will figure us out and give us back our lives. Until then we are considered too few to bother with. I began my Lyme adventure in Topeka , Kansas , and I believe nine people were infected in 2003 in Kansas . I often wonder if moving to New England would benefit my medical process, but that seems a dream of Oz.

I woke up July 5 about 5:30 a.m. Much to my surprise, I could not move my neck. It was not a stiff neck. It was not sore. It was locked up completely. It took me thirty minutes to curl up, roll over and do a push-up in order to get out of bed. I drove immediately to the Emergency room. The doctor decided that I had torticolitis, the first misdiagnosis in a line of many. I was given muscle relaxers and sent on my way. A few days later I went to my family practitioner for further assistance. My neck did loosen up after about 3 days, but then things got worse. I explained to her what I was going through and told her my left knee was swollen and tingling. I have had problems with my right knee since I was a teen, but never my left. She did not seem to know exactly what was happening, but did act suspicious. She forwarded me to a rheumatologist. I really got the impression from him that I was too mobile and too young to waste his time. So after a brief range of motion exam, he sent me on my way.

By the end of July I began to feel assaulted by an invisible enemy. Within two weeks of the locking neck episode, I was faced with a numb and swollen right hand ring-finger, a left thumb that felt as though I hit it with a hammer, all of my muscles seemed to move into rigor mortis and my brain was on half capacity. A week after all this came on to me I had to huff and puff and scream to work up enough adrenaline to get out of bed. It was simply too painful. I was still a pretty fast learner though and after 3 days of that I just started sleeping on the couch. Meanwhile, my diligent general practitioner had me lined up with a neurologist for the “acupuncture test” or EMG (electromyography). When things got really tight she sent my back to the rheumatologist. She sent me for an MRI.

While everyone else was busy running this test and that test, I was busy on the internet… EVERY day. I was scared. I “Googled” for hours to match my symptoms to anything, a simple logical process that has since become a way of life. My rheumatologist seemed offended that I gave him a list of possible offenders. He sent me for a spinal tap. My mobility had quickly started to fade. My knees would not bend normally, my right arm was only comfortable in a sling position by my side and no matter how hard I tried to use mind over matter, my body quickly told my mind that it did not matter. I scooted along everywhere I went. I gained tons of respect for the mobility-challenged. I stayed upright, but it was a painful fight to do so.

I was now existing on Skelaxin and Neurontin. My primary doctor said the Neurontin was a seizure drug, but seemed to help nerve stem pain such as mine. These two drugs were the only relief I had, well, except for marijuana. That was the only drug that allowed me to stretch my muscles and relax. I discussed this with the doctors and they could not promote it, but advised caution and moderation. I allowed myself to smoke it only once per day in the evening. I never smoked it during high school, so it was a new experience to me. I would enjoy the hour-long island of relief and then slowly melt back into their world of synthetic “normalcy”.

I had to sign up for FMLA [family medical leave act – U.S. Dept. of Labor] at work. My job was in a call center and not physically demanding, but very mentally challenging. The attendance policy was very strict and I was about to lose my job. Between the appointments, fatigue, pain and medication, I was a shell of myself. The cut-back in hours was a cut-back in income. I had to move in with an ex-boyfriend to save money. My mini-van had locked up and died so he was also my transportation. My independence was checking out at the door with my health and mobility.

My van died two days after my spinal tap. The spinal tap that is to be followed by slow motion and low exertion for three to five days. I had to walk three miles to our townhouse. By the time I got there I thought my head would explode. I called in to work because that is where I was headed when the van died. Two days later they fired me because I was on a final warning and I did not go to work due to transportation, a technicality on their part. I advised them that I was on FMLA, they could not fire me and I did not go to work because of the exploding post-spinal tap headache. I could have secured transportation, they conceded and I hung on to my job by a small technicality. I knew it was a matter of time before they had me.

August passed by with a litany of tests and supposition. The tests that were being given were coming back “ok”. Nothing was wrong with me at that level. I told them to keep testing. I kept doing research. They kept telling me that I did not have whatever malady I threw their way in guesses. Finally, one day in early September, I asked the rheumatologist to test me for Lyme disease. I think he laughed quietly to himself as he pompously questioned why I would think that. That is “rare” in Kansas . I told him I was in the woods for many hours in June. He wanted me to produce my bulls-eye rash. I could not. I looked him in the eye and asked, “Do you know what IS wrong with me?” He could not answer affirmatively. So why not try anything and everything, no matter how geographically ridiculous. I guess I knew he concurred when he called me on a Saturday night while I was bowling. I had a special eight pound ball made with five holes drilled in it. I would slide up to the line and give it a push, but I loved to bowl. When you get a call from your doctor on a Saturday night, you feel special…and mortal. The good news was the bad news and it was Lyme disease.

He wanted to start a twenty-one day IV (Rocephin). So the IV began on Monday. The first few days I left the shunt in my arm, but soon grew tired of Saran wrapping my arm to shower. By the seventh day I just had them take the needle in and out. We went through diarrhea and improvement. I ate a lot of yogurt and the diarrhea became so bad after one week they took me off off the IV for two days. Then we started again. After three weeks, there was improvement. There was never full recovery to the pre-Lyme me, but I did gain more mobility. I was still in a lot of pain. My brain still did not function properly. I still lost my job, my home, my car, my sanity, my patience, my hope and my pride. I moved in with my birth mom.

A year later I went to truck driving school and have tried to do that ever since. That year off was a blur of pain, alcohol and depression. I have filed a disability claim and am currently in appeal. I am too young and can do other things, that is what they tell me. Well, I tell them, sure, then what if I have to take a nap? What if I am in too much pain to go to work? What if I urinate too often? What if I become ill at work? I cannot stand very long, cannot sit very long, get tired easily, become confused easily. I can no longer multi- task. I have zero patience in a customer service situation — obviously, I was fired.

Now I am living in and out of insurance, getting my medications most of the time, begging once more for a diagnosis. Once again having a list of suspects, but no one will commit to me, to it, to us. Lupus, MS, CRPS, sarcoidosis or any of many diseases “de jour”. Along with this I have old things such as scoliosis, advanced degenerative disc disease and general allergies. The worse part of it all is my sleep pattern has never recovered. I NEVER sleep more than two hours at a time. I wake up. Sometimes I stay awake and other times I go back in for another two hours. The sleep is never restorative.

A year and a half ago I began to have problems breathing and developed pink lumps on my legs. This has been tested for many options, but no definite decisions. COPD and erythema nodosum is all “they” will commit to. Chronic fatigue, insomnia, confusion, frustration and when I wake up I have visual halos. The less I sleep, the larger the halos. I carry a bevy of medications to cover any emergency. Advair, Combivent, Albuterol, Neurontin, Soma, Cymbalta, Excedrin and Claritin. I am currently pursuing non-synthetic options. I am doing research on herbs and supplements. I am seeking resolution and peace.

I know there are thousands of us. I know I am one of many. It offers some consolation, but it does not offer us help. It nearly destroys our hope. I often cannot even believe this is what my life has become. I have not given up completely, but I am doing everything I can to take care of myself. Ultimately we are our only defense. We may not get a fancy diagnosis, but we can experiment with things that bring relief in a stable way. I am not condoning or suggesting the use of any of my remedies because I am a work in progress. I am telling you my story. May we all find time to appreciate what we have and try not to give too much power to what we have lost.

-Tamara
www.airllusion.com/lyme/mylyme.html

Donna Falcone Ed.M. recently posted a great article called 10 Things You Need To Know About Lyme Disease. A lot of people have been asking about a flyer that they can print to hand out this May. Donna and I altered her original post and created a printable flyer for that purpose. We left the flyer very simple to make for easy at home printing. Jazz it up and make it demand attention by printing it out on lime green paper!

Lyme Disease awareness month is next month. May has been named Lyme Disease Awareness Month in an effort to raise awareness about this potentially life threatening disease which is on the rise in dramatic fashion.

It’s time to stretch our legs, get out into the sunshine, and enjoy the beautiful spring time weather. It is also important to know that Lyme Disease presents a real and present danger if left undiagnosed and untreated, and that reported cases reveal a disproportionate number of children with the infection.

Over the next few weeks we will explore vitally important issues regarding Lyme Disease and young children. In these United States we are blessed with beautiful parks, woodlands, and wildlife. While we don’t want to stop enjoying this beautiful countryside, we need to learn how to protect our children and ourselves from Lyme Disease.

..-Donna Falcone Ed.M. Click here to read Donna’s original article.

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Click the image to download the PDF file

10 Things Flyer

My story begins in the summer of 2000. I had just moved to Austin Texas after graduating from the University of North Texas. I starting working as a nanny for a wonderful family. I loved Austin because it was so different than Dallas and Denton, so much to do outside, so much nature. My apartments were even settled in a woody area that was backed up against the Greenbelt. (a stretch of wooded area with trails and creeks) I was also involved with a local church and I remember going on a youth camping trip (in Austin).

It was either at this camping trip or somewhere around my neighborhood that I got bit by a tick. (I never saw a tick and didn’t have the classic Bull’s Eye Rash) I woke up with a strange rash over my chest, back, and face. I went to the local Emergency care place, and the doctor said he didn’t know what it was. One of the nurses looked at me and said, “Honey, I think you have Lyme Disease.” But instead of testing and treating me for it, they sent me on my way with a recommendation to see a dermatologist.

I had no idea what Lyme disease was, so I went ahead and got an appointment. The dermatologist had no idea what my rash was either, and wanted to take a sample of my skin for testing. Meanwhile, I emailed my old dermatologist and asked her what her thoughts were. She said that Lyme rashes are not usually on the face, and it was probably a benign rash. She even had a fancy name for it. Well, I trusted her judgement, since I didn’t have any other symtpoms and my rash was fading. I eventually went on with my life. I never would have thought that those decisions would haunt me ten years later and I would be fighting for my life.

It was exactly 3 weeks after giving birth. We had a 3 year old, a two year old, and now a newborn. I went to bed and noticed my finger start twitching. It was just really annoying, although I didn’t think much of it. After a couple of days, the twitching spread to my toes. After a week, the twitching spread to all over my body. I was starting to freak out and do some research online.

I kept getting information for Parkinson’s, MS, and ALS. We went to my regular MD who thought it was a vitamin deficiency. Negative. I also had extreme weakness on my left side of my body, and I couldn’t do any fine motor skills with my hands. She referred me to a neurologist. I had some nerve tests done and some MRI’s of the neck, spine, and brain. She was ruling out MS and ALS, or any neck injury. I was convinced I was dying of either MS or ALS even though all my test came back negative.

I went to a second neurologist that specialized in Multiple Sclerosis. I had every blood test under the sun. I even had a Lyme test done, and although the first part, the Elysa, was positive, I didn’t have enough bands on the Western Blot to be considered positive. I was told that it was negative.

I went to a third neurologist (highly recommended), and he tested me for HIV, Lyme, and did a Lupus panel. My Lyme test had the same results, positive on the Elysa yet not enough bands on the western blot. My ANA test was positive (showing that my immune system was fighting something) but the Lupus screening was negative. He sent me to a Rheumatologist, who retested me for everything.

He had no explanation for my symptoms and when I asked him about Lyme Disease, he said, “It’s NOT Lyme Disease”. When I told him about my rash ten years ago, he said, “There is NO such thing as Chronic Lyme Disease.” I knew that was untrue because I had heard of a girl that went on seven years of antibiotics because of her Lyme Disease. He did insist I start some antidepressants. I refused. I knew I wasn’t depressed. I was scared because nobody could figure out what was wrong with me. Needless to say, I stopped going to those doctors.

I got online and started researching Chronic Lyme Disease and how standard test are unreliable. I also learned about the controversy surrounding this disease, yet I still didn’t know how hard the battle would get. My MD ordered the blood test and sent it to a special lab in California and I was positive for Lyme, Babesia, and Ehrlichia. I found a Lyme Literate Doctor and starting treatment.

I know there is no cure for Chronic Lyme Disease, but I still want to give it a fighting chance. I have come a long way from where I was, and I am able to function as a wife and mother again. I do realize that I might have to be on antibiotics for the rest of my life. Hopefully, my story can help gain awareness to this horrible, devastating disease so that people can get better testing, get better treatment, maybe we can find a cure someday. I pray that for everyone, especially my family.

-Brandi Mommalyme
lymebites2010.blogspot.com

I have always enjoyed the beauty of the outdoors.  I also have always been a very social person and active in bicycling and hiking.  I have worked mostly jobs where there’s has been a lot of manual labor, creativeness, brainstorming, multi tasking, driving, and long hours. My last job was at a local television station as a Photojournalist/Videographer. I was the person going out with the reporters to gather the news stories of the day.

In the spring and summer of 2008, Wisconsin had lots of major flooding.  Some towns were closed down completely because of it.  I was out everyday covering the effects of the flood waters.  I was contently in the elements.  I ran on adrenalin because I wasn’t getting much sleep since I was working extended and double shifts.

I started getting sick in June.  I thought it was exhaustion from the constant work.  I had bruises all over my body and didn’t know what had caused them.  A couple of them looked really odd.  They were discolored in the middle, lighter than on the outside.  I didn’t know it at the time but they were target rashes.  I was working in places that were/are infested with ticks.

I was having night sweats, fatigue, dizziness, achiness, and headaches.  The doctors found that I was anemic so they gave me iron pills.  But I continued to feel sick and was getting SO frustrated.  I let my doctor know about my exposure to highly populated tick areas and that I even found a tick in my bed.  I pleaded with them to test me for Lyme disease.  I gave a lot of blood and thought for sure they’d figure something out.  Everything came back negative including the ELSIE Lyme test.

At the end of October I’m STILL sick and missing tons of work.  I begged my Primary doc to treat me for Lyme despite the test results.  She said she would treat me with an antibiotic for two weeks.  I started getting better, so I called and begged for another two weeks.  She said she would but made sure I knew she wasn’t diagnosing me with Lyme.  I took what I could get and I got a lot better, but it didn’t last.

By March of 2009, I took a voluntary layoff form my job.  I just couldn’t do my job anymore and they needed to lay someone off anyway.

I went back to the clinic and was referred to the Infectious disease clinic. But they wouldn’t see me since my Lyme test came back negative.  I had to wait to get in to the rheumatoid clinic.  It’s now August of 2009.  That was the WORST doctor appointment ever!  It’s all in your head.  There’s no way you have Lyme disease.  I walked out of his office balling my eyes out.

That was the day I decided to get on the web and reach out to online Lyme support groups.  I got several recommendations for the same Lyme doctor. Only 2.5 hours away, but still, I was going in the right direction.  I made my appointment that day.  I had to swallow my pride and get a cane.  Most days I couldn’t get out of bed.  I was so depressed.

Sept. 8th 2009, a friend drives me to see my Lyme Doctor.  I was clinically diagnosed that day.  I started treatment and almost right away some of the most resent symptoms started falling off.  The Lyme bacteria moves around in your body so some symptoms will get better and then others will appear.  It can also hide in places antibiotics can’t get to.

It’s been a long road already, but it will be longer.  Because I wasn’t treated right away I now have Chronic Lyme Disease.  I have depleted all my savings because of the treatment and not being able to work.

Staying positive is hard, my life has completely changed.  Each day is a struggle.  I’m thankful that I can get out of bed and can shower, eat and taking all my meds.  I’m extremely limited to what I can do.

I’m thankful for the friends I have met around the country through my computer that also have Lyme disease.  I wish/pray that no one has to go through the nightmare of Lyme.  I have so much anger because I suffer each and every day with a disease that could have been avoided if I would have been treated right away.

Della Haugen – Madison Wisconsin

There is one thing that is more important than anything else when it comes to the success of this May’s Lyme disease awareness campaigns.

People need to know about them!!!

Seriously. We will have no impact if no one participates. If you are reading this and you follow Lymenaide or Lymebites you are probably thinking, “what are you talking about, everyone knows about it, you post about it everyday!”

Well that is not the case. Yes I post  something about it everyday somewhere. BUT everyday I get messages from people who have been my facebook friends or followers of Lymenaide for months saying, “Wow this campaign is so awesome, I had no idea about it until today!”

We need to do more so that people know about the awareness campaigns for this May. There are a lot of them. I have tried to encompass as many as I know about into Paint May Lyme Green. I’m sure there are others out there.

Here are the ones I know about and because I know about them, I promote them as Paint May Lyme Green (it sounds catcher than Lyme disease awareness month).

• Ribbons Across America
• Victorious Vixen Lyme Art Quilt Project
• The Viral Video Campaign
• Writing to your Newspapers
• Writing to your Representatives
• The Production of a Lyme Public Service Announcement
• Lyme Awareness Items for Purchase at Online Stores
• Flyers/Brochures to Handout

If you are doing something that I haven’t listed, tell me!!! I will help promote any and all campaigns for Lyme disease awareness month!

But, I need you to help. How many people do you think really see what I post? Things move through your home pages so fast on facebook and twitter. Unless people are sharing, re-posting, and re-tweeting you really aren’t being heard by very many people.

We only have three weeks left until May. We need to reach all the people who haven’t heard about the Paint may Lyme Green campaigns.

HOW-

Twitter

• DM, direct message, your Lyme followers and ask them to participate. Include a link to a campaign.
• Do this more than once! Try for sending everyone something once a week.
• Post a few links to awareness info and campaigns everyday and encourage participation
• Tell people what you are going to do and ask them what they are going to do.

Facebook

• Don’t just post on Group and Page walls. This does not reach very many people.
• If you are the Administrator of a Lyme Group, message all members about campaigns and how they can participate. Send them links to more information. Don’t over do it, but 1 or 2 messages a week for the next 3 weeks is reasonable.
• If you are the Administrator of a Lyme Page, write a note and tag 30 Lyme friends to help share it! Include links to campaigns for more information. In the title of the note include the words PLEASE SHARE.
• If you are the Administrator of a Lyme Event, send everyone a message about campaigns with links.
• Post and Share on your personal facebook profile page. You can customize who the message gets received by. It does not have to show up on all of your friends’ home pages.

How to customize your facebook posts-

• Click the security lock icon that is next to the share button
• Choose customize

This is easiest if you have your friends organized in lists
How to organize your friends in lists-

• go to Account (upper right corner)
• choose edit friends
• your can create, edit and add to your friends lists here

Believing that something needs to be done about Lyme disease awareness and actually doing something are two different things. If you are not part of the solution, you are part of the problem.

Help us spread the news about this May’s campaigns and PARTICIPATE!

It is going to take all of us to make a difference. A handful of us can not do it on our own. We need your help and your support.

Learn more about this May’s campaigns here-
http://lymenaide.wordpress.com/paint-may-lyme-green/

Ashley Bouck

We were asked to write our story of Lyme, but I really don’t know where to start.  Do I start the first time I was bitten by a tick, at age 10?  Or do I start when I first started to get symptoms at age 25?  I think I will start at 25; that will be easier for my Lyme brain to remember.  Here’s the short version of a very long story.

One of the weirdest of my symptoms is my total inability to regulate my body heat.  It can be freezing outside and I’m sweating, and it can be a tropical day, and I’m freezing.  One of the first things I consciously noticed was my weird body heat dilemma.  I vividly remember lying in my bed, when I lived in Spokane, in the middle of summer, freezing.  Now, if you’ve never been to Spokane, it gets mighty hot there in the summer.  It’s a temperate Ponderosa pine desert, for a lack of a better description.  On this particular day, it was about zero humidity and about 95 degrees F out.  I was laying face down on my bed, with sheet, two blankets and a comforter over me; my arms pulled in to my chest, and my trusty cat, George, lying on my back.  I think he always knew something was wrong, my George; after all, we were two of a kind.  He had the feline version of HIV and I had taken care of him for years.  My sick kitty was now worried about his sick human; curled perfectly where I needed him to keep me warm.  I was shivering, so cold it hurt; in 95 degree weather.  I knew something was wrong, really wrong, but according to the doctors, nothing was wrong with me.  How can nothing be wrong when I’m freezing and it’s Africa hot out?  Preceding the chills were severe hot flashes, lasting hours and making me so nauseous I would sometime vomit.  I knew, if I got hot, the cold would follow.  I still get these episodes.  I told doctor after doctor, something was wrong, and was brushed off.  One even laughed in my face and called all the nurses over to laugh at the 25-year-old going through menopause.  Bitch.

So, I gave up.  I didn’t go back to the doctor for two more years.  My symptoms got worse.  I was tired, and dizzy.   Hot, cold, nauseous, dry skin, itchy and sick all the time.  I had had unsafe sex when I was younger, and HIV came to mind.  Crap.  I got tested; negative.  Are you sure, test again; negative.  What the hell is wrong with me?  One person gets the sniffles around me and I’m sick for a week!  I’m so tired, I hurt, what is wrong with me?  I can’t concentrate, can’t think, so tired, so tired.  Ignore it!  There’s nothing wrong with you!  It’s all in your head!  Don’t go to the doctor, they’ll just laugh at you, tell you you’re a freak, it’s all in your head, there’s nothing wrong with you.

I went through Forestry college with undiagnosed and untreated Lyme disease.  When I started, I maintained honor roll.  For three years, my grades didn’t drop below a 3.5 (4.0 is the highest you can get).  Then, late junior year, I crashed.  The Lyme caught up, only I didn’t know what it was.  Nothing was wrong with me.  I was in so much pain.  Muscle pain, joint pain, my skin burned or froze, neither one was very pleasant.  I was so tired, and my ADD got so bad that I couldn’t think of any one thing at once.  It was like an angry mob was screaming in my head.  So many voices!  My grades dropped to a 1.8.  1.8!  Holy crap!  I’d never gotten a D in my life!  Now, D was my average.  I was flunking out of college, and I was almost done.  I couldn’t let this happen!  I needed a 2.0 to graduate.  I did it, barely, with help from every dang teacher and counselor I could get help from.  The day I got my degree, I had a 2.01 GPA.  Crap grade, but it was passing, and I was dieing.  Always sick, always tired.  I trudged on.  Because nothing was wrong with me.

I graduated with a degree in Forest Resources, and went to work.  Great job, very physical.  I was in pain all the time.  I worked through it.  So tired.  So painful.  My co-workers would go out after work, it was all I could do to drive home after work and not crash the car.  They stopped asking me to go.  I couldn’t.  If I wanted to go out, it had to be on Saturday night, and I couldn’t do anything Saturday.  If I wanted the energy, I had to store it up.  If I went out, I didn’t even get dressed until a few hours before I left.  If I did, I would end up doing something else and not have the strength to go out that night, and I would have to say I couldn’t go…again.

Long story short, I went to Wisconsin to participate in the AIDS Walk there with my friends Bob and Teresa in 2009.  They introduced me to their friend Della.  Della saved my life.  During the walk I was in pain, and dizzy.  I was so dizzy I held on to Teresa so I could continue walking.  I felt like an idiot.  There’s nothing wrong with me!  Afterwards, we went to lunch and I was rubbing my legs when Della asked what was wrong.  So I told her.  My legs were on fire.  They felt like boiling hot water had been poured over them, and they hurt.  Rubbing them helped.  Della gave me a couple pamphlets on Lyme and made me promise to get tested.  Della has Lyme disease and recognized one of her own.

When I got home, I went to the doctor and did the lab tests.  $700 worth of blood tests, which aren’t covered under any insurance; not that I have insurance anyway.  The doctor called me in and said the lab tests confirmed her prognoses.  I had “glaring” Lyme disease.  Old antibodies, new antibodies and almost every symptom on the charts.  I was off the charts.  How was I still alive?  I’m healthy…except for the Lyme.  That’s the only thing that kept me alive.  Parents who taught me to eat right and pay attention to my body, my drive to keep pushing no matter what and a physically demanding job that whooped my ass…yeah, those kept me alive.  The same vocation that probably gave me Lyme, saved me by forcing me to be healthy.  I love my job and will keep doing it.

So now, I take up to 18 pills a day, plus anti-inflammatories when needed.  I take a liquid multi-vitamin because the pills make me even more nauseous than I already am.  I am on a gluten free, high fructose corn syrup free, sugar free, soy free diet.  I shouldn’t eat soft fruit or drink fruit juice either, because of the sugar content, so I don’t.  I can eat meat, fish, eggs, dairy, green veggies, avocados, tomatoes, brown rice, nuts and quinoa.  I’ve gotten very inventive with my food; and I’ve learned a whole new world of cooking.  Most things that are pre-made, have something in them that I can’t eat, so I HAVE to cook.  I don’t have a choice.

I will have Lyme forever.  I don’t have the kind that can be cured, it’s in my tissues and my blood; it’s in everything.  If I have children, it will pass on to them, so I have made the decision that I will not have children.  I may be able to pass Lyme to my partners, so I will tell my partners that the evidence of Lyme being an STI is inconclusive, so that my partners can make up their own mind about it.  And I will tell anyone who will listen my story, and the story of Lyme.  I founded a non-profit to help fund my speaking.  My first venue is at the University of Washington to my fellow Forestry Students.  I will fight, I will survive and I will live because a tiny bacterial spirochete, in its quest to make me weak, has made me strong.

-Ashley