Yes we finally have some Lyme disease awareness bracelets to help with our fundraising! They are “Lyme” green and they simply say Lyme Disease on them.
If you want to purchase some here are the prices-
20 for $50 ($2.50 each)
10 for $30 ($3.00 each)
5 for $17.50 ($3.50 each)
Under 5 = $4.00 each
We have included the shipping/handling and service fee charges in the price. Please note that a $4.00 payment through PayPal will incur roughly $0.42 in fees $1.22 for shipping plus the cost of the envelope.
To make a purchase send an email to Ashley at ashvantol@lymenaide.com she will give you the link to pay through PayPal or the instruction to pay by check.
Thanks!
PS- The photo is a little dark. The bracelets are very lime green.
I’m stuck between sick and well. See that little person in my illustration? That’s me. See how close I am to tipping my scale toward well? See how close I am to a backslide?
I know that so many of you our there wish that you could only get to the level of health I have now. You believe that you would be happy, content to just have that much. Trust me, when you get here, it won’t be enough. You will want more.
Last year was hard. I was so sick I literally couldn’t do much of anything. I had a hard time speaking and following conversations, my memory was shot, I couldn’t drive myself places. The sensory stimulation in any store was so overwhelming I had to go straight home to bed. I had a lot of pain in my body and my brain was mush.
I had no motivation and no desire to do anything. there was absolutely no energy for it in my body. I missed my old life but I felt so bad it didn’t really matter.
This year is different. I want to do things. I want to go hiking, biking, and rock climbing. I want to go out on the lake, it’s summer I wan to enjoy it! I also want to go back to work.
But, I still can’t do any of those things and it sucks. My body is so weak after a year and a half of doing nothing that even riding my bike on the flats is exhausting!
I did go for a hike with my husband. It was beautiful! I was so happy to be out there hiking again. That was two weeks ago and my back has been a wreck ever since. I took it easy I really did. I walked slower than I have ever walked before. I let every grandma on the trail pass me! I’m just not ready.
I feel more trapped than ever by my illness.
My husband and I struggle financially. His income is not really enough for us to get by on. My parents are struggling to pay for my medical expenses and the needs of my brother and sister. Everyone looks at me and says I should get a job.
I want to, but what can I do? I can’t stand all day, I can’t use the computer all day, I can’t clean anything because of dust, mold and chemicals, I can’t work full-time, I probably can’t even work a full eight-hour day.
It is so hard to figure out what to do. Will going back to work start me sliding backward toward sick? How do I explain my needs to an employer? I wouldn’t hire me.
Sure I do a lot from home on my own projects but I’m on my own schedule. I have insomnia so I sleep late in the morning, I take breaks during the day, I take naps, I make sure to meet all my dietary needs and I take my pills. My only obligations are to take the dog out to pee and… well that is really my only obligation.
I don’t want to be as sick as I was last year, but in some ways it was easier. I knew, and everyone around me knew I was too sick to do anything and I was way too sick to work.
This year is different. I’m stuck between being sick and being well. My getting well is so dependent on the choices I make now. If I over exert myself I run the risk of tipping the scale to the sick side again. There is so much to balance and such big consequences if I don’t balance it well. I’m teetering right there in the center, afraid to make a move for fear of tipping my scale the wrong way.
every well-stocked purse should have a BPA-free water bottle and a book
I just finished reading Healing Lyme Disease Naturally: History, Analysis, and Treatments, a new book by anthropologist Wolf D. Storl. I was totally obsessed with this book and couldn’t put it down. It contains so much information about the history of Lyme, various theories on the disease, as well as treatment methods. Storl’s experience as a well-seasoned anthropologist is evident in his exploration of the relationship between medicine, culture, and politics. He is fairly radical in his assessment of the way that Lyme Disease and ticks are portrayed and the way that the relationship of epidemic disease, advances in medicine and technology, and general cultural trends have effected our relationship to nature. At times, he is quite esoteric, discussing the possibility that ticks are really messengers from the Earth, encouraging us to listen more closely to nature and return to the wisdom of the ancients. He even dives headlong into a discussion of shamanistic tradition, mythology, and the planetary bodies. This book is all over the place – and yet, I think it is totally approachable.
Storl is no stranger to Lyme Disease. He contracted it and suffered all the classic symptoms. As someone intolerant to antibiotics, he sought out care using herbs. Eventually, he found his way to teasel root, and found it to be a vital part to his recovery.
I really appreciated this book. It almost reads like an action novel – the pace is fantastic, and and found myself learning something new with each turn of the page. He looks tirelessly at the history of Lyme Disease treatment, as well as treatments of its spirochete sister disease, syphilis, and a variety of other degenerative chronic illnesses. Throughout the book, he stresses the importance of our connection to nature, and dives into the shamanistic, herbal, and healing traditions of a variety of cultures. And his knowledge of herbalism is admirable. I already desire deeply to study herbs, but this book really pushed me over the edge! The back of the book also contains a helpful herb index, something that I know I will be referencing constantly. What I wouldn’t give to shadow him, man.
Storl also discusses a whole life approach incorporating quality food, exercise, sunshine, and fresh air; it is a refreshing and logical, and there are many excellent suggestions for lifestyle changes that facilitate healing. I find his discussion of how Lyme Disease changes people and causes them to often become more sensitive and have a hightened perception to be absolutely fascinating – and absolutely true for my own experience. Storl also discusses the cultural notion of disease, the identity of disease, and the differences in treating a person vs. treating their symptoms. It is like this book is reading my mind!
A primary focus of the book is the use of teasel root as part of the healing traditions in Eastern and Western herbal medicine. A modest plant with a remarkable history and an impressive medicinal capability, it grows commonly all over the place and can easily be grown in the garden. The way that teasel combats the borrelia bacteria is completely different than the way that antibiotics do, allowing for a more complete recovery and more thorough cleanse of the system. He said treatment can last about 3 months, which is exciting, considering that antibiotic treatment lasts at the very least 6 months and sometimes for years and years (I know some Lymies that have been on broad spectrum antibiotics for more than 5 years). It can be taken as a tincture, as a tea, or as a powder, and has shown incredible efficacy for even very severe cases of late-stage neurological Lyme.
After thoroughly covering teasel, Storl dives headlong into the wide variety of other Lyme treatment philosophies, ranging from the Klinghardt protocol to Salt-C protocol to various “old world”-style treatments. He gives a lot of information about helpful herbs that are useful, as well as nutritional supplements. My copy of this book is already underlined and dog-eared and written in with points to research further. Then he dives into a really incredible description of how syphilis – a fellow borrelia bacteria – completely shaped modern history. It blew my mind. Then he asks a very intriguing and poignant question: will Lyme Disease have a similar effect? The rate of infection is of epidemic proportion and the effect on the body is the same, so how will we start to see the larger, cultural effect of Lyme Disease in the years to come?
The thing that really threw me about this book was his absolute denial of the efficacy of antibiotic in chronic cases. I am currently taking broad spectrum antibiotics for Lyme treatment, along with a variety of botanical medicines. As someone generally suspicious of allopathic medicine, the decision to take antibiotics was something that I felt hesitancy about for all the reasons Storl lists in his book. Long-term use of antibiotics has really negative risks, and I am starting to experience some of them – decreased digestive function, yellowing of teeth, and liver fatigue, to name a few. Those things aside, I have seen massive improvement in my over all health since starting antibiotics, but intuitively, I feel like I need to bring in another tool that we don’t yet have. I tend to think that coming at it from both ways – the antibiotic method and the “natural” method – seems to be effective for my system and my infection. But everyone is different! My naturopath really loves this book, and I look forward to speaking with my LLMD about it in July at my appointment.
After my naturopath appointment this morning, we decided to add teasel to my protocol. I’m building up to a full dose slowly, so we’ll see how I do on it, what kind of Herx reactions I have (they can be rather intense, I hear), and what improvements I see. But my first drops are down the hatch and going to work!
Do you take teasel? What experiences have you had with it?
I would definitely recommend this book to anyone interested in herbalism, natural healing, or the history of chronic disease treatment, and would consider is required reading for anyone dealing with chronic Lyme disease. Storl puts faith in nature’s ability to heal, but also puts responsibility on the patient to create an environment that facilitates healing. His experience and the experiences of the others in the book are inspiring. The book is intriguing, and stimulates you to ask many questions and self-reflect. It has spoken to me so clearly with words that reflect my philosophy and desire for my own treatment. Truly one of the best books I’ve read in ages.
Keeping on the Lyme theme (so much for light summer reading), I’ll be reading Pamela Weintraub’s Cure Unknown: Inside the Lyme Epidemic very soon. I’ll be sure to let you know what I think about it when I’m done. Right now I’m in the middle of Elizabeth Gilbert’s Eat Pray Love, a beautiful, funny, and introspective book that I would recommend to anyone! It is wonderfully timely and poignant, and providing a nice change-of-pace from the Lyme life.
United we stand, divided…
we don’t get nearly as much done.
.
You may have noticed that Lymenaide has taken on a distinctly awareness oriented feel. You might be wondering what happened and why there are so many less personal and informative posts than there use to be. Or, you’ve already put two and two together.
Lymenaide is evolving. When I started the Paint May Lyme Green campaign I had no idea where it would lead. Turns out, I’m pretty good at this awareness stuff. I want to continue to fight for Lyme disease awareness.
So do some of my closest friends. We all met online and we all have our own blogs. We also all have the same goals. We believe that as a team we can accomplish much more than we could individually. We have decided to officially join forces.
Lymenaide is becoming “the organization”, an awareness agency dedicated to helping non-profits spread awareness about Lyme disease and other causes. LymeBites is going to be Lymenaide’s official blog (this is where you will find us posting the personal and informative articles that made Lymenaide so popular). Victorious Vixen is going to be heading up our craftivism endeavors.
Think of it as one organization with different departments. That hopefully explains what we are. Now on to who we are.
Ashley van Tol- That’s me! I started Lymenaide about three months into my Lyme treatment. I was a friggin mess at the time. I couldn’t think straight, had a hard time speaking and I was so sensitive to everything sensory my doctor pretty much told me not to leave the house. To top it all off I was completely and utterly lost and confused about what exactly Lyme disease and everything that went along with it was, and what that meant to me and my life.
Nearly a year later I feel almost back to normal. Another reason for there being less posts on Lymenaide and the reason I was able to accomplished so much for Paint May Lyme Green.
From this point on I am going to focus on the awareness projects and fundraising we are planning through Lymenaide. I’m also going to be doing a lot of sewing for our craftivism projects. If you haven’t noticed yet, I love projects! I was the kid at school you always wanted to get stuck with on group projects because it was going to get done and your were going to get an A. I also kicked *ss in home ec. I once got in trouble for sewing too fast.
I will continue blogging as well, mostly about awareness but not exclusively.
Eric Rutulante- I was diagnosed with Lyme disease in June of 2009 after 20 or so years of unexplained illnesses and problems. I began LymeBites in December of that same year, which was about the time the disease began to let go of some of the grip it had on my brain which made it impossible for me to write. LymeBites began to evolve early on, as I met Ashley and began to write for her website along with my own. It was then she had this idea and a vision for the very successful ‘Paint May Lyme Green Campaign’.
I was angry that I had been allowed to get so sick when I grew up in an area that is endemic for Lyme disease. Lyme awareness made the most sense for me to direct my anger towards. I felt of myself as a lost case as far as saving from Lyme disease, but I decided I would be damned if I was going to allow people to go through the living hell that Lyme disease is. If I couldn’t stop my own disease from happening, I could stop others.
The biggest thrill for me in this when we hear of specific examples of people who were prompted by our campaign to get tested for Lyme, only to find out they had it. Through the campaign, and LymeBites I got to work with and get to know Nani and Candice. It’s an honor to work with, and be part of a team of such inspired, motivated and brilliant people. We are committed to save lives through awareness.
Nani Luculescu- Nani may not have Lyme herself but she is an honorary Lymie to us. Her dad has Lyme disease and Nani has become an activist for our cause. She help create some great Lyme facebook groups and she was there helping out with the filming of the PSAs and interviews this May.
Naniis heading up our craftivism department. Through her art and sewing Nani has been promoting Lyme awareness through her projects like Project Lyme Art Quilt. We have lots of plans for the craftivism department! Exciting stuff that you can become involved with. One of the most important goals for this is to raise money for our cause and for the crafter.
Nani will also continue with her efforts contacting politicians and encouraging others to do the same. This is an important piece, as you all know, to our Lyme puzzle.
Candice- I was diagnosed with Late Stage Lyme Disease at age 19, after more than 3 years of suffering mysterious symptoms. By the time I was diagnosed, I was in pretty bad shape, and had to drop out of college at U.C. Davis and move back home with my parents. Upon diagnosis, I assumed that I’d begin to gradually get better, but unfortunately I progressively got worse. Two years after diagnosis, I found myself completely debilitated and completely confined to the house by Lyme, Multiple Chemical Sensitivity and Dysautonomia.
I’m 21 years old now, and have been through the wringer, but over these past couple of months I’ve begun to make improvements for the very first time, and have a new found sense of hope and optimism. Just this past May, I woke up one morning and to my very surprise, found that I could write again. Inspired by Lymenaide and Ashley’s “Paint May Lyme Green” campaign, I started my blog Infectiously Optimistic and began writing for awareness and understanding. I set a goal for myself to touch as many people as I could from my spot on the couch, and to not only educate the community but provide other Lyme patients with much needed hope.
By the time May had ended, I had found myself knee deep in awareness projects, and absolutely loved every minute of it. I was presented with the opportunity to join the Lymenaide team, and didn’t hesitate for a second before accepting. I’m honored to be a part of the team, and can’t wait to see Lymenaide’s bright future pan out.
Others- We aren’t alone in out efforts. We are supported and helped by many people in the Lyme community. The more the merrier we say! If you would like to know what you can do to help us, or you have ideas, send us a message.
Lyme disease has a tendency to consume your life. Not only the sick person’s life, but the lives of our loved ones as well. It is unavoidable.
This isn’t all bad. Our lives are so consumed that it seems no matter who we talk to we eventually end up on the topic of Lyme disease. Which, if nothing else, helps to spread awareness.
Yesterday my car broke down and I had to get towed. Guess what? The tow truck driver had never heard of Lyme disease. He didn’t know that we live in a high risk county. He didn’t even think we had ticks here.
I made sure to tell him all about the tick I found in my hair this April after walking along the paved river trail.
He knew there were ticks about an hour south of us where it is significantly hotter all year long.
“Oh, you mean where the deer and the birds that carry the ticks go for the winter?”
He has decided he needs to do some research.
I’m not the only one who constantly finds myself talking about Lyme, my husband does too. It usually starts something like this, “so, what does your wife do?”, and there he is talking about Lyme disease again.
Today he came home with a story that perfectly illustrates why everyone is at risk of contracting Lyme disease, no matter where they live or how outdoorsy they are.
My husband explained to a new co-worker about how his wife (me) doesn’t work because she has Lyme disease.
These are the basics of the tick experience the co-worker shared with my husband-
A few years back he decided to check out property in Virginia (it is a lot cheaper there than it is here in California). He had some friends out there that he went to stay with.
They went out hunting and came back covered in ticks. Literally from the sounds of it. They brushed them off and removed them, then carried on with life.
A few days later, back in California, the man went to a office where he had some business to attend to. After he left the people in the office started finding little ticks all over the place.
The man was horrified. If he had left ticks all over the office, he must have left them all over the plane and airport as well!
He knew about Lyme disease. While he doesn’t appear to have been infected, he knows the possibility exists that one of the ticks that hitched a ride on him may have carried Lyme. One of them could have bitten and infected the next person it came into contact with at the airport, in the plane or back here in California.
Back in March I wrote a post about Magnesium- MAGNESIUM, FRIEND OR FOE. I wrote about the importance of maintaining adequate magnesium levels and the debate about whether or not Lymies should be supplementing magnesium when Magnesium is one of the building blocks of biofilms and the concern is magnesium may be helping Lyme to thrive in your body.
In the original post I did not delve into what kind of magnesium to take or how to take it.
After the post a company that sells a product line called Ancient Minerals contacted me. They have a range of topical magnesium products and they asked if I would like to try it and write a review. I of course accepted and went straight to the internet to read up on transdermal magnesium supplementation.
There are quite a few doctors that recommend transdermal vs. oral supplementation and not just when it comes to magnesium. (1)
Magnesium chloride, when supplied in sufficient quantities, can kick start cell physiology in a very powerful way. Few know that magnesium chloride is an impressive infection fighter and even fewer know that the best way to deliver magnesium to all the cells is through the skin. -Mark Sircus, Ac., OMD (2)
One of the first things I learned was that my believed Calm magnesium’s supplement was, yes, a wonderful laxative (the reason I love it so much) but that right there is one of the biggest problems with oral magnesium supplementation.
The tendency for oral magnesium to create a laxative effect, hinders the bodies ability to actually use that magnesium. It just passes through you so fast the body can’t capture and use it.
There is also the whole balancing of calcium and magnesium that gets confusing to those of us who may not have failed, but definitely didn’t grasp chemistry. How am I really supposed to know if I got the right ratio between all my supplements and food? I didn’t study food science either.
This is probably my favorite point made by topical magnesium proponents: Your body will absorb, through the skin, what it needs and not more. Perfect! My body needs magnesium for sure but I don’t want to over do it for fear of “feeding the Lyme”.
The Products-
I was sent Ancient Minerals Magnesium Oil, Gel Plus, and Bath Flakes.
Epsom salt baths have been my stand by on this Lyme journey but I have to say I like the Magnesium Bath Flakes better.
Epsom salt baths relaxed my muscles, I think any bath would, but left my skin a bit irritated. I always had to shower off after a salt bath. Not what I wanted to do since standing up after a bath tends to leave me light headed and out of breath.
I don’t feel the need to shower after the magnesium bath. I feel more relaxed than I ever did after the Epsom salt baths. I can just crawl out of the bath, into my PJs and straight into bed ready to sleep.
So, conclusion- I love the Magnesium Bath Flakes.
The oil and the gel were not as easy to judge. My doctor, who I asked about the products before I tried them, told me the gel would be great for muscle pain.
I don’t suffer from much muscle pain anymore I haven’t for months. Do you ever notice when you say something like that, something happens to prove you wrong? Well, I guess the Lyme heard me and thought, “Oh well, we’ll show you muscle pain”.
Last week I went for a little hike with my husband. I don’t know if that is what threw out my lower back or if I just slept wrong, either way it was miserable. I couldn’t even stand up straight.
I pulled out the magnesium gel. I had my husband lather that stuff all over my lower back.
Did it fix it? No, of course not, it isn’t miracle gel. It did relieve the pain and tension in my back though. I used the spray oil a few times too just to mix it up.
My conclusion on the Magnesium Gel and Oil- I will use it for muscle pain in the future. I understand the function of the gel and oil as a topical supplement but the mineral residue that is left when the product dries is a bit too much for me. The residue is normal. It is recommended that you use the oil 20 minutes before showering, and rinse or wipe off the gel as well. That one extra step plants the Bath Flakes firmly in first place for me.
Here are some of the benefits Ancient Minerals advertises for their products. (Note that these are benefits of magnesium in general.)
To begin, let me tell you a bit about Twitter. According to Wikipedia – Twitter, “is a social networking and microblogging service that enables its users to send and read messages known as tweets. Tweets are text-based posts of up to 140 characters displayed on the author’s profile page and delivered to the author’s subscribers who are known as followers.”
Okay, what does that have to do with anything? Ashley and I have spoken at great length in our awareness campaigns as to the importance of social networking and media sites in getting our message out. Look at May. The simple idea of a campaign for Lyme awareness literally blew up across the country and hundreds then thousands of people joined in. Do you know how many people became aware in May? Do you know how many lives were saved because of that awareness? A great deal of credit has to go to Facebook, Twitter and the other social media outlets for their help in helping us spread our message.
Yesterday we received quite a surprise from Chloe, or in Twitter terms @TVD_Chloe, as she agreed to donate $.05 for each new follower following her on Twitter. Wow…we were quite taken aback, but not surprised because of the amazing support the fans of The Vampire Diaries have given us since the stars of the show helped out with the PSA’s.
Then suddenly today I saw the following tweet (that’s what they’re called for you non-Twitterers): @luckytobesilver is donating $.10 to the campaign for every new Twitter follower she gets.
Ashley and I set about to telling people, as we were getting messages on Facebook as people were adding these people on Twitter (and raising money for our awareness campaign at the same time), we suddenly saw another Tweet pop up! @Christi_Roberts joined forces and is offering $.05 for every new follower.
Ashley and I can’t help but be astounded at this additional boost of support. It is a huge help to the campaign, and to what we are trying to accomplish.
But then suddenly, I couldn’t leave my computer to go to the bathroom without more people joining onto the cause!!! People were joining in so quickly (and Twitter kept crashing today, AKA the epis whale fail, also in Twitter lingo) Ashley and I couldn’t even keep up with sharing the information with each other, let alone to keep retweeting it and sharing on Facebook. It was wonderfl! But to make this easier, I am simply going to list out all of the following people who are participating in this fundraising project for the Lymenaide and LymeBites awareness projects we are planning. As this expanded it now includes Twitter and Facebook and regular websites.
Less than half of these people have Lyme. The others became friends to the Lymenaide/LymeBites awareness cause through the Public Service Announcements that we did as part of Paint May Lyme Green. Through their new understanding of this terrible disease, they have been prompted to action.
Twitter @TVD_Chloe is donating $0.05 for every new follower on Twitter from 06/08-06/15 @Christi_Roberts is donating $.05 for every new follower on Twitter from 06/09-06/15 @luckytobesilver is donating $.10 for every new follower on Twitter from 06/08-06/28 @icarusalsoflew is donating $.50 for every new follower on Twitter from 06/09-08/04 @Shannahg22i s donating $.05 for every new follower on Twitter from 06/09-06/20 @CAccolaWeb donated $20.00 today, which was for her donated $.40 for the first 45 people to follow her on Twitter @lailakhangi is donating .20 euro for every new follower on Twitter from 06/09-06/30 (she is also donating .20 euro to Gulfaide) @thelymegarden will donate $.06 for every new Twitter follower fro 06/09 until they receive 60 followers (the donation will be split between Lymenaide and CanLyme)
Blogs Alyssa’s Blog – http://simplyalyssadreaming.blogspot.com - for every person that subscribes to her blog from 06/09-06/16 she will donate $.05 June 9 and June 16 she will donate .05 cents to the Lymenaide campaign!!
Facebook The Lyme Garden – Facebook Page will donate $.06 for every new follower of their Facebook page for the first 120 fans (The donation will be split between Lymenaide and CanLyme) Craig Bancoff – Facebook Page will donate $.50 between 06/10 and 06/17 for every new follower of his Facebook page or new member of his website, you can Register Here for Craig Bancoff\’s Website. Now in addition, for those who do not know ,Craig “is a musician suffering from chronic, neurologic, late stage Lyme disease and would like to show our support by helping raise money for Lymenaide.” So beyond the amount he will donate for new followers, but for the same dates if you purchase the digital download of his CD he will donate $5.00 to the campaign! If you purchase the CD from iTunes or CDBaby he will donate $3.00 for each purchase of the CD. To get the digital download go here: Craig Bancoff – Merchandise.
And as a show of good sport, I will donate $.10 to the Lymenaide/LymeBites campaign for the first 200 people to register with the LymeBites website. Click Here To Register With The LymeBites Website
This is where you come in. Are you on Twitter yet? If not, please join and create at Twitter account at www.twitter.com. Then go into search and enter all of the names above on Twitter and follow them. Just by doing that you will have raise a lot of needed money for our campaign. I actually figured out that if you did each of the things listed above you would raise about $7.00 for Lymenaide and LymeBites awareness campaign. If we get just 500 of our collective followers and readers to actually do all of that, we could raise $3,500 for the awareness campaign without even having so spend a cent! What could be better than raising money for a worthy cause without spending money? It just takes a few minutes of your time, and we really need the additional funding to be able to complete our upcoming projects.
If you are already on Twitter then please add the people listed above also.
And to all of these fans of the campaign, as well as those with Lyme who have gotten involved, we thank you so much for your support of this cause, your help in raising awareness and understanding, as well your assistance in raising the much needed funds to continue with our awareness campaigns and save lives.
If you’d like to make a contribution directly to our campaign through a different form of payment, there is a ‘Chip-In’ section in the top right of the LymeBites homepage, you can make a secure donation via PayPal or credit card there. For other ways to make contributions via checks*, etc., or about sponsoring our awareness projects as well as questions about our campaign please contact Ashley at ashvantol@lymenaide.com or myself at LymeBitesDotCom@yahoo.com for more information.
Together we can continue to build the strength and momentum of our awareness campaign as we prevent another generation of illness. We can’t let that happen, please help us prevent it!!
P.S. Please check out the montage of all the PSA’s we did that was put together by Chloe to the right of the post.
*Donations made by check to Lymenaide are not subject to any service fees. All other donation avenues; PayPal, Chip-In, Causes have services fees of between 3% – 12%. That money is taken away from your donation and goes to the payment service, and credit card fees. Checks can be made out to Lymenaide and mailed to: Lymenaide – PO BOX 290 - Tahoe City, CA 96145. Direct payments to Lymenaide are not tax-deductible. The only way to make a tax-deductible donation is through the Lymenaide Awareness Causes Page on facebook sponsored by PANDORA.
Can you believe the amazing response we got on twitter today of people, most who do not have Lyme supporting us and pledging to donate to our cause?
All you have to do is follow these people on twitter and they will donate to Lymenaide for our awareness projects!
Please follow these wonderful people and ask everyone else to as well. All colored text links to profiles, facebook pages, blogs or specified online location. So easy; just click the link and follow the person, follow all of them!!!
We are spreading awareness and raising money to spread even more awareness. Thank you everyone involved for caring and supporting our cause!
I have been making a lot of new friends online lately who surprisingly, don’t have Lyme disease. Seriously for the past year everyone I have met, I have met because we both have Lyme. I know you all know exactly what I am talking about.
Now I am meeting people, still because of Lyme, but not because they have Lyme. These people want to help Lymenaide with our awareness campaigns because they believe out cause is a good cause.
One of my best new friends is Chloe. Chloe didn’t know anything about Lyme until this May. Well, that isn’t entirely true. She knew that you could get Lyme from a tick.
Chloe’s eyes were opened to Lyme disease because of out Paint May Lyme Green Campaign. She found out about Lymenaide through Candice Accola and the other Vampire Diaries cast members who stared in our Lyme disease PSAs.
She was a huge help this May, tweeting and re-tweeting to her followers about Lyme disease. She wanted to do all she could to help spread Lyme disease awareness. May is over, but Chloe is still devoted to helping us with our cause.
For the next week (June 8 – June 15) Chloe is donating $.05 to Lymenaide for every new follower she gets on twitter! If you tweet, follow @TVD_Chloe! If you don’t tweet, sign up today! There is a great community of Lyme tweeters and our supporters there.
Chloe is determined to use her voice in the V.D. (Vampire Diaries) community to spread Lyme disease awareness and to help our cause.
From Chloe-
Thank you for what you are doing with Lymenaide. I hope my contribution of $.05 a follower for the next week will influence people to follow in my footsteps. I really just want to help at least one person to be diagnosed, or who has no idea what Lyme is. Thanks again!
From Chloe about the Lyme PSAs-
I think every single one of them gives an EXCELLENT message. They are all informative and easy to understand. The people that have never heard of Lyme disease that watch the PSA’s will be dumbfounded. The little facts in each one are absolutely unbelievable to most people. It’s a very strong and powerful message and I applaud you for bringing Lyme disease out of the dark. I found out about Lyme because of Lymenaide.
Check out this video montage Chloe made of our PSAs and posted on her YouTube Channel-
Today is the last day of our first ever Lymenaide prize giveaway. Tender Corp was kind enough to send us samples of their products to use for our giveaway. TENDER CORP
Natrapel 8 hour insect repellent and After the Bite Kids/Outdoor itch eraser combo pack.
Winners will receive both the repellent and combo pack. Just in time for summer to help protect you and your loved ones from Lyme disease.*
To enter simply leave a comment here telling us which of the Lyme disease public service announcements we made this May is your favorite and why. Your email will only be visible to you and Lymenaide admins.
While you are there please subscribe to our awareness channel! AND, share our PSAs with everyone you know!!! You can help us spread awareness by posting these Lyme disease awareness commercials on all your internet sites- facebook, twitter, your blog, your YouTube channel… You have our permission to re-post the Lyme PSAs anywhere you want.
Today is Invisible Illness Awareness Day. I am reposting my Invisible illness questionnaire from last August and adding updated answers for where I am now in my health and understanding of my illness. The current additions are in italics.
1. The illness I live with: Lyme disease. Which is much more than just borrellia. I have 4 tick borne illness, food intolerances (much better now), hormonal imbalances (also much improved), and really a slew of other issues that come and go because of a compromised immune system.
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 1999
4. The biggest adjustment I’ve had to make is: not working. I’m still not working, but the biggest adjustment is redefining who I am.
5. Most people assume: I’m lazy. I don’t think anyone assumes I’m lazy anymore. Now they think I am a Lyme activist and that is what I do, therefore whatever I tell them seems to have more credit now than it use to. Those who know me realize I am sensitive and I think that is frustrating for them because they want the old me back.
6. The hardest part about mornings are: The pain in my body. Not pain anymore. The whole getting up part. I still don’t sleep well so getting up in the morning is not high on my list of things to do.
7. My favorite medical TV show is: these are way to scary.
8. A gadget I couldn’t live without is: my computer
9. The hardest part about nights are: I’m not tired
10. Each day I take 80 pills & vitamins. (No comments, please). Less most of the time, but still a lot.
11. Regarding alternative treatments: I am thankful my doctor is open to them. My protocol is mostly alternative and it is working for me.
12. If I had to choose between an invisible illness or visible I would choose: visible. Some days I wish people could see how sick I am. Most of the time I am glad the illness is invisible. To have to look at myself in the mirror and look sick everyday would be harder. I’m glad that I look good and healthy, I think it helps my damaged self-esteem.
13. Regarding working and career: I’m doing what I can. I am reinventing myself and doing what I can for Lyme disease awareness. I found out that I can do a lot and I’m good at it!
14. People would be surprised to know: how effected I am by Lyme each day. Effected I have been by the illness.
15. The hardest thing to accept about my new reality has been: how small my world has become. My world has grown significantly in many ways now. Not having the money to pay our bills is the hardest thing about my reality now.
16. Something I never thought I could do with my illness that I did was: help others. Something so amazing as the public service announcements!
17. The commercials about my illness: non existent. They exist because I made them with the help of the entire Lyme community!
18. Something I really miss doing since I was diagnosed is: being active
19. It was really hard to have to give up: everything
20. A new hobby I have taken up since my diagnosis is: blogging. Creating and executing Lyme awareness projects.
21. If I could have one day of feeling normal again I would: Go climbing or skiing with my husband. I have these days now but not the strength to actually be active.
22. My illness has taught me: what is really important
23. Want to know a secret? One thing people say that gets under my skin is: You are so luck, you can eat anything without gaining an ounce. Not anymore. I think I have official passed from skinny to thin. Some of my pants are much tighter fitting now than they were last year!
24. But I love it when people: visit me. Join me in creating Lyme awareness and encourage me with everything that I am doing
25. My favorite motto, scripture, quote that gets me through tough times is: when life gives you lyme, make lymenaide. Just do it.
26. When someone is diagnosed I’d like to tell them: educate yourself and join support groups. Don’t let depression ruin what life you do still have. Find ways to keep yourself sane and happy.
27. Something that has surprised me about living with an illness is: how invisible you become. How much one person can do to change Lyme disease awareness. Just look at me and Eric Rutulante as examples. We have done more than we ever imagined possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: my laundry and cleaning. Made me dinner, walked my dog, kissed my forehead, cleaned the house… My husband is awesome!!!
29. I’m involved with Invisible Illness Week because: It hurts to suffer silently. I want to make a difference in the way these illness are viewed.
30. The fact that you read this list makes me feel: acknowledged. Empowered.
We are working on growing the Lymenaide and Lymebites sites so that we can get corporate sponsors, donations and advertisers for the Lyme disease awareness projects we have planned.
We want to be able to get funds from others places so that we don’t have to solely rely on the Lyme Community who have done so much already.
We can’t do this without growing the blogs, facebook pages, twitter accounts and YouTube channel. We have to prove that we are big, important and have a large following in order to be attractive to “corporate” money.
We need your help to make this happen. Please help us grow these sites by encouraging everyone to join and subscribe. This is the biggest thing we can all do right now to make future awareness projects happen AND, best of all, it is free.
If we can’t get the support from the Lyme community, we will never get it from outside the community. Without that support future awareness projects like the PSA campaign can’t happen.
I really want to continue with these efforts but I can’t do it alone. I need your help to reach new people.
I currently have potential projects in the works with both Turn the Corner and PANDORA. They won’t happen if we can’t fund them. Interviews with Celebs who have Lyme, and a short film just to name a few. These are powerful ways to spread awareness but they aren’t cheap or easy to produce.
Please help us grow. This means continually seeking out new people to join our cause. Posting once on your facebook profile or wall isn’t going to be enough. This is a continual part of what needs to be a major part of our awareness efforts.
YouTube- http://www.youtube.com/user/lymenaide
We have a prize giveaway going on for the next 4 days on the YouTube channel. Subscribe to the channel, watch the videos, and leave a comment telling us which PSA is your favorite and why. Easy!
Thanks so much for all that you have already done to help us bring Lyme disease to the Public Eye and for all that I know you will continue to do. Working together as a united front we can accomplish anything!
The last few times I’ve seen my doctor he has not detected Lyme in me. This does not mean it is gone. It could be, but it is more likely hiding out in cyst form. He still detects my co-infections and a myriad of other unwelcome visitors to my body.
I am, he believes, about 85% back to health. I would agree. I have felt, for a Lymie, fantastic for the last six weeks. I have had a few rough days but they were easily attributed to menstrual cycle or readjusting to altitude. I spent the last five weeks at sea level and only arrived back at altitude 2 days ago. The adjustment was much easier this time though.
Anyway back to the purchase. I have been feeling so well I asked my doctor about exercise. Seriously I want to start getting fit again! No more huffing and puffing walking up the stairs. Bring me back the muscle strength to carry my niece for longer than 5 minutes.
He agreed, it is time to start working back toward my previous fitness level. Slowly, very slowly, like snail pace slowly. Yoga and/or Pilates, walking (no big hills) and biking on the road (no big hills). Most important I am not allowed to bring my heart rate up to aerobic level. He recommended a watch with heart rate monitor.
I find this rather amusing. I use to work at an outdoor store in Australia where we sold these types of watches. Marathoners, tri-athletes and wannabes would purchase them to make sure their heart rate was staying with in the target aerobic training zone for optimal workouts. I never once sold one to someone to make sure they weren’t getting real exercise. We use to lay down in the store with them on to see how low we could get out heart rate. We would then jump up really quickly to see how high it would go.
But, there I was in REI picking out a watch with heart rate monitor to make sure I wouldn’t actually be doing any real exercise when I went out on my walks and bike rides.
It is a good thing these watches have come down in price since I was selling them. It was also money saving that I could opt out of the versions with GPS. Although, come to think of it a watch with GPS might come in really handy on some Lymie days: how do I get back to my house again?
Exercise is important to Lyme recovery. In his guidelines, Dr Burrascano states-
Despite antibiotic treatments patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
He goes on to say-
The program must evolve into a graded, ultimately strenuous exercise program that consist of a specific regimen of non-aerobic conditioning.
I am soooooo happy to be at this point. If you have read my Lyme story or know anything about the person I was before I got sick, then you know that active is a word that would have to be used in any description of me.
Today I woke up and did yoga. Later I am hoping to go for a gentle bike ride. Mother Nature needs to get on board with my plans for today and bring out the sun to dry up all this rain!
How to calculate your target heart rate for maintaining (or not reaching) aerobic training-
I used the Karvonen Formula to estimate my minimum and maximum heart rate for aerobic training. Remember that the minimum is the only important calculation at this point as we DON’T want to reach the min. bpm (beats per minute). We need to keep our heart rates below the aerobic training level.
This example is based on the calculation for a 23-year-old person with a resting heart rate of 65 bpm. To get your resting heart rate take your pulse for one full minute.
220 – 23 (substitute your age) = 197
197 – 65 (substitute your resting heart rate) = 132
132 x .65 (65% of 132) = low end of heart rate, 85.5
132 x .85 (85% of 132) = high end of heart rate, 112.2 85.8 + 65 (substitute your low end & resting heart rate) = 150.8
112.2 + 65 (substitute your high end & resting heart rate) = 177.2
The target heart rate zone for maintaining aerobic training for this person would be between 150.8 – 177.2. The target for this person if they were a Lymie would be to staybelow 150.8.
Consult your doctor before starting any exercise program.
This year’s paint May Lyme Green awareness campaign has opened up a lot of doors for us. We have a lot of momentum and we plan to keep it moving.
The first opportunity we have that we would like to act on is interviewing celebrities that have or have had Lyme disease. We already have authors, actors and models who have said they would like to take part in our campaign. I actually had to stop contacting celebrities because so many were interested in helping out. I still have a long list of celebs left to contact. All we need is the funds to make it happen
Another door that opened was to possibly produce a short film about Lyme to submit to a film festival. This would be a story not a documentary.
Of course we also have a handful of other celebs including professional athletes, actors and models who are willing to do more PSAs for us.
In addition to the press kits we are currently sending to TV stations, we will be creating and sending out a slightly different kit with the PSAs to talk shows and other influential people. We predict more doors to open as a result.
Exciting isn’t it! We also have some non-celebrity oriented goals for the coming year. We want to create a brochure that will be made available for anyone to order and send out. The goal is to make this free of charge.
A general awareness kit available as a PDF download is in the works.
AND, a possible summer 2011 tour to cross the country spreading awareness in state and national parks. I can’t think of a more appropriate place to educate the public about Lyme
We also have ideas for fundraisers to help bring in the donations to make these projects possible. Nani, of Victorious Vixen and I are working on some craftivism ideas. We are hoping to get some help from our Vampire Diaries friends on this one. Stay tuned for more information about that.
We need some help to make these projects come to life. Funding is the #1 obstacle we face. We are going to continue to ask for donations, but we also want to attract corporate sponsors. To get sponsors we need to grow our brand.
The “brand” when it comes to our awareness projects is Lymenaide. That encompass the blogs, facebook pages, twitter and YouTube accounts of Lymenaide, Lymebites and Victorious Vixen. We need subscribers, page hits and comments to attract potential sponsors. You can help by visiting, subscribing and sharing these sites and pages with your friends and followers.
Enter Eric-
You’re probably thinking to yourself “but guys, I’ve already donated to the May campaign, now you want more money?”
To answer you, yes. We want you to help us to raise money. The great thing about the awareness we spread in the month of May is that now more and more people know about Lyme disease. It has been leading news stories across the county, it has been on the front page of newspapers… there are a lot more people today on June 1st that know about Lyme disease than there were on May 1st when we kicked off the campaign.
Thanks to so many generous donations throughout the month, we were able to put the gears in motion and because of that get the attention that we needed for more people to know about Lyme disease. As I’ve said, we are like a snowball that is just picking up speed and strength. So now we need to take what we did in the month of May and project it onto a much larger scale. We need people all across the country to think of ways to raise funds to help continue the awareness. We need people to join us in finding people and organizations to sponsor and donate to the cause.
But just as important, we need each of you to continue spreading awareness of this disease. The month of Lyme disease awareness may have ended, but Lyme disease season is in full force. So continue doing the things you did in May to tell people about Lyme disease.
Has your local television station or newspaper done anything on Lyme? If not then contact them and ask them to. You’ll be amazed at how eager they may be to hear your story. And if you can’t tell your story, there’s someone else where you are that will tell theirs. But you need to let the media know that this is important and you want them to cover it.
As you continue spreading the word about this disease, and more and more people who have been impacted by this disease get involved with the campaign and fundraising, then we can continue to ride the wave of momentum we picked up during the month of May.
The one thing all of us involved in Paint May Lyme Green know for sure is that this is one very creative group of people wanting to raise awareness. Now is the time to use that outstanding creativity to come up with fundraising ideas so we can move forward with all we have planned and help save the lives of thousands of people.
If you have any ideas or if you know of anyone you think we should contact about becoming a sponsor, please send an email to- ashvantol@lymenaide.com or erut10@gmail.com.
