Lymenaide

Last night I went out to dinner with five amazing women. We all told our Lyme stories and unashamedly talked about Lyme all evening.

As I wrote those first few lines I thought; wow, that sounds like it could quite easily have been a miserable and depressing conversation. It wasn’t. It was intriguing, hopeful, honest and at times a little shocking and scary; there were some very knowledgeable ladies at that table. Despite what we’ve all been through and are going through no one has a negative attitude. We are all shining Lyme lights in my opinion.

I’m not sure how the other patrons in the restaurant would have described us. Six women obviously enjoying each others company as we shared truly horrifying and very personal stories. Not one of us batting an eye at what would cause an outsider’s jaw to drop, or more likely their brain to shut down and dismiss.

Maybe they thought we were new-age hippies talking about energetic healing and experiences you would expect to hear on the psychic hotline not in a legitimate doctor’s office.

The conversation turned to intuition, what has led us to this path we are on and “what we are going to do about it” as one of the ladies was asked point-blank by an influential acquaintance.

There is no doubt that Lyme changes you and alters the path your life is on in unexpected ways. Is it a calling? Are we chosen, as another woman’s practitioner believes? I don’t know. I do often wonder how I could possibly have gone from world traveling ski instructor to hermitesque Lyme advocate so easily. Seriously, how much different could it get?

Is this the path that I am meant to be on? Yes, I think it is. I have to admit that ski instructing was a lot easier and much more lucrative but I wasn’t anywhere near as passionate about it. Trust me I’m not going to ski with you unless you are really really good or you book a private lesson and you better tip on top of the $600 lesson price.  Ask me for help with Lyme disease awareness though and I will do what ever I can and then try to do more.

Last night helped to reaffirm that I am headed in the right direction. There is something that I am meant to do and a lot of the other ladies are right there with me on a clear path that has emerged from our illness. Together there was a pretty powerful team sitting at that table.

Something brought us together maybe it was chance maybe it was good networking skills. Who knows, does it really matter. We are all prepared to be at the forefront of change when it comes to Lyme in our own varied ways, and to support each other through it all.

This is how good things, even amazing things start.

Yes, three of us are actually bloggers for SpiroChicks.com

This morning I read an article online that at first pissed me off. I try to keep an open mind so I kept reading. By the end it only half pissed me off. The article is entitled  Another Perspective on Lyme Disease it was written by David Itkin, an infectious diseases doctor in Portsmouth.

In the first paragraph he defends the IDSA and their Lyme guidelines. Generally I would have stopped reading right there, but he also said that the guidelines work for the majority of his patients. I wanted to know about the minority and his opinion there.

Seeing as I know of thousands of chronic Lyme sufferers I’m going to have to say, “Sorry David, we aren’t that rare.” While it is hard for me to get over my bias of anything or anyone who says the IDSA got it right, I don’t think that Dr. Itkin is actually discrediting us or our illness. He isn’t the first person to say calling it Lyme disease isn’t accurate. Even chronic Lyme isn’t really telling the whole story.

How many infections do you have? How many imbalances? How many active viruses and bacteria unrelated to Lyme? Parasites, amoebas??? Lyme is only one piece of the illness we chronic sufferers are dealing with. Perhaps it was the catalyst, or the straw that broke the camels back but it isn’t our only problem, for many of us it isn’t even the most pressing problem.

It seems like Lyme is the common denominator, the thing that we all share, but after that our illnesses are all unique and vary greatly. Some of us suffer physical pain, some have more neurological symptoms. I have digestive problems, others have heart problems. In my personal case when it comes to treatment, actual Lyme disease has never been a major player. For me it has been Bartonella, viruses and bacteria unrelated to Lyme. Oh and I had those worms and amoebas to deal with too.

Dr Itkin says in his article; “I do believe that there is a true medical condition (or conditions) that we are currently unable to characterize…”

I can live with that. What I think he fails to acknowledge is that we call that condition, Chronic Lyme Disease. An accurate description or not, it has been given a name. Arguing semantics isn’t helping me or anyone else. Stop fighting about what it isn’t, we all know that it isn’t just Borrelia Burgdorferi.

There is a whole lot of Dr Itkin’s opinion that I don’t agree with. I give the patients a lot more credit than I feel he does. I don’t think that calling Lyme the carrot to the desperate is fair at all. My doctor’s were very upfront about the illness, the complications, and never once lead me to believe that I simply had Lyme and nothing else. In there opinion it is also an inaccurate name for the chronic illness I have.

My LLMD often talked about my autoimmune disorder more than Lyme disease. My current doctor is treating me because I am ill and we are working to build my immune system back up while attacking any bacteria, viruses or imbalance that arise.

I’m not very good when it comes to politics, but I don’t see how creating legislation to allow doctors to treat patients without fear of losing their medical license is a disservice to patients.

Dr Itkin fears that such legislation would lead to “cookie cutter” diagnosis and treatment. He says, “A compassionate provider may decide on a case-by-case basis that a patient deserves treatment that diverges from standard conventions. A law is not needed for this.”

I think he got that last part backwards. It appears that we do need a law to allow our providers to decide on a case-by-case basis that we need treatment that diverges from standard conventions. Without it we are in danger of only being allowed the IDSA “cookie cutter” diagnosis and treatment.

Nani Luclescu and Ashley van Tol are more than just Lyme awareness activists, they are craftivists. Using their skills and passion for art to help spread awareness about causes close to their hearts.

They both recently posted on their respective blogs about projects they are working on to spread Lyme disease awareness.

Nani has made some really cool Lyme inspired items over the past few months. She is also heading up a project to make a large Lyme disease awareness quilt with the intention raising awareness at events. On her blog www.victoriousvixen.com she posts her creations, blogs about life and Lyme disease awareness.

Here are a few of Nani’s amazing Lyme inspired items, follow this link to see more and to read about what she is doing with them- http://victoriousvixen.blogspot.com/2010/08/lyme-inspired-creations.html

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Ashley just started a Lyme project on her site www.upcycledbyash.com.  Ashley makes bags, wallets and other items out of pre-loved clothing and other materials.

25% of the proceeds of sales from the Lyme fundraiser will go to Lymenaide, another 25% will go to the Turn the Corner Foundation. The remaining 50% will go to Ashley. Sales from the items she make for this site are currently her only source of income.

Ashley’s Lyme project just started, but there are plenty of samples of her work to see what she will be making for Lyme on her website. Follow the link to learn more about her Lyme Project- http://upcycledbyash.blogspot.com/p/lyme-project.html

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Ashley and Nani are currently working on a project for Lymenaide called the Lymenaide Holiday Bazaar. The intention of the Lymenaide Holiday Bazaar is to raise awareness about Lyme disease while helping to promote artist and crafters from within the Lyme community in hope of financial support for them and their families.

We will be posting more about the Lymenaide Holiday Bazaar soon. For now if you have questions about getting involved contact Ashley at- ashvantol@lymenaide.com

Are you working on something to spread Lyme disease awareness? Let us know, we would love to feature you and help promote your projects.

Re-posted with permission from www.gospeedraser.com

Christina Kim

By John Raser

As you’ve probably noticed, lime green is a pretty popular color around here. It’s my favorite color. It’s also become a distinct part of my personal brand. However, it is more than just that. It also represents my little sister, Teri’s, ongoing battle with Lyme Disease.

LPGA Tour star, Christina Kim, and I recently linked up with Pilla Sport to create custom lime green sunglass frames to show our support for the millions of Lyme victims worldwide. Their shades are second to none. Initially designed for the best marksmen and archers in the world, Pilla Sport sunglasses make colors and nuances on the golf course come to life. I’ve never played with such visual clarity.

People are already starting to take notice. Christina and her Pilla sunglasses were featured in a “Style Watch” article that was recently published at LPGA.com. Fans continuously ask her about them and it gives her a chance to speak about the horrors of Lyme Disease. It’s awesome to see CK rocking her bright green shades out on tour because as she explained in her book, Swinging From My Heels, she has never before felt compelled to get behind a specific cause.

Christina has even taken her new role as Lyme Disease advocate a step further…

I am pleased to annouce that a portion of all proceeds from every sale of Pilla Sport’s new lime green sunglass frames will be donated to Turn The Corner Foundation to help find a cure for this horrible disease.

I can’t think of a more bold and vibrant spokesperson, who is anxious to speak her mind and fight for what’s right. Thanks to Christina and the folks at Pilla for taking action and making this happen!

Please thank John and Christina for their amazing support-

www.gospeedraser.com
www.thechristinakim.blogspot.com
Twitter @johnraser @TheChristinaKim

Learn About Lyme

Learn About Lyme is the website Lymenaide created as the call to action site for the Paint May Lyme Green PSAs we did with PANDORA. It is a great and growing resource in the Lyme Community.

Rather than being filled with the same information that you can find on most Lyme Organization websites, Learn About Lyme has collected, organized and links you to those already existing resources.

There are separate pages dedicated to every state in the United States, as well as International pages, listing the Lyme organization that exist in the individual states/countries. We believe that finding the most local resources to you is valuable information. Those organizations should be able to best direct you to the local help you need.

In addition to the Organization/Group listings, there are pages linking you to; Lyme blogs, patient stories both written and video, books and movies. The site is also set up so that you can leave links to your favorite Lyme organizations, your blogs, and your stories. Someone from Lymenaide will review the comments and add your links to the listings.

We are dedicated to spreading Lyme disease awareness and helping those with Lyme find the resources they need to get well.

Visit Learn About Lyme- http://learnaboutlyme.com/

Talia and Dov - The Wellspring

The Lyme disease community is becoming truly blessed with wonderful supporters. Today we want to introduce you to one of our newest supporters, Talia Osteen and her band The Wellspring, which includes herself and Dov Rosenblatt.

Back in May Talia was one of the first celebrities to sign up to star in the Lyme disease public service announcements Lymenaide produced. Unfortunately timing didn’t work in our favor. She was bummed and we were bummed, but we promised to keep in contact and make something happen in the future. True to her word, Talia has stayed in touch with us and in making Lyme disease awareness an important message.

We sent Talia and The Wellspring one of our celebrity press kits. We also asked them if they would like to get involved with our Lyme celebrity upcycle fundraiser this Fall. They said yes! If you don’t know about the upcycle fundraiser you can read more about it here- http://upcycledbyash.blogspot.com/p/lyme-project.html. We are humbled by the support of our celebrities in helping us, and thankful for The Wellspring’s participation in our fundraising efforts.

We are also excited to announce The Wellspring performed at a benefit for the Gulf in NYC on July 25th and released  The Wellspring EP on iTunes on July 29th. They are extremely talented and their music is good for people of all ages no matter what genre of music you prefer. Their EP release is amazing and we’re sure you’ll enjoy it as much as we do. Please check them out and show them the same support they are showing the Lyme Community. You will be healing more about them and their Lyme disease support soon!

More from The Wellspring- http://www.reverbnation.com/c/fr5/artist_646848?eid=A646848_4988981

Get The Wellspring EP on iTunes for only $4.95- http://itunes.apple.com/us/album/waterproof/id381765335?i=381765354&ign-mpt=uo%3D4

Talia Osteen

Thank you again to The Wellspring for their wonderful music, as well as a special thanks to Talia for taking part in our Lyme disease awareness projects and fundraising. Help show your appreciation for their support, here’s the link to their fan page on Facebook: http://www.facebook.com/welovethewellspring Twitter:@_TheWellspring We truly appreciate those who use their talents and voices to support those of us in the fight to raise awareness of this disease that causes so many to suffer so needlessly.

Congrats to The Wellspring on your release, we wish you much success!