Friday, June 11, 2010

Press Kits, Vampires, Giveaway, Oh my!

Giveaway is closed & a winner is being chosen...thank you!  =)

Hi guys!

We've made great progress on the Lyme Awareness front...check out the amazing new Lyme PSA's (Public Service Announcements) that Lymenaide produced!  My favorite PSA is "poppy seed" because it illustrates just how small those pesky ticks are!

I don't know about you, but I've never seen a PSA on TV for Lyme disease, nor did I know about how to protect myself from getting it!  It's growing at an alarming rate across the globe and we think it deserves some air time!  Right now, across North America, there are 203 Lymenaide PSA Press Kits that are making their way into mailboxes & news stations.  46 volunteers in the Lyme community have stepped up & agreed to send their testimonial out with the Press Kits, in the hopes that the PSA will make it on the air.

Ashely, her husband & her dog Lucy all came to help me package up the Press Kits...well, Lucy did her part to recycle the boxes!  It was a steamy hot day in my cramped place, but we managed to get the bulk of the work done that day.  Sorry for the heat guys, I hope the cherries & goodie platter helped some!

PSA Kits are printed & ready to ship out! Who else wants some... on TwitpicAshley working away in the 'sweat shop!' It was steamy hot to... on TwitpicLucy 'helping' us put the PSA press kits together...and Sande... on Twitpic

The exciting part is that we are just getting started!  There are more Lyme awareness & activism projects in the pipeline & I am hope you'll be a part of them.  =)

The Vampire Diaries cast members have been tremendous supporters of our efforts & have been featured in many of the PSA's.  Check out this video montage one of their fans, @TVD_Chloe, made of our PSAs and posted on her YouTube Channel-

Chloe, along with many others, is offering a donation for each follower they receive on Twitter/Facebook, etc, so please check out to for's a simple way that you can help without having to spend any money!  =)

Okay, I'm feelin' all the love here & I do love a good giveaway.  It's high time I did one here on my blog so I'm offering up the last Red, Black & White Optical Delusion wallet of the series.  I sent one off to one of the cast members of The Vampire Diaries, so you'll have the companion to hers!  Have a look at what you can win...
Custom Quilted...   

 Funky Fresh...

Gift Wrapped &
Made with Love...

Here is how you can win!!
  • If you have Lyme, please share when & where you were infected.  
  • For an additional entry, please leave a comment what your first symptoms were.

  • If you don't have Lyme, please watch this trailer for "Under Our Skin," a new documentary about Lyme disease & the controversy surrounding it...then leave a comment.
  • For an additional entry, please share this trailer on facebook & or Twitter & leave me a link to your post.

1 comment = 1 are some extra ways you can enter:
    So that's all folks!  Be sure and leave a comment for each thing that you do for it to count.  The giveaway ends on Friday, 6/18 at 11:59 PM...thanks & good luck!

    Wishing you all the best,
    --Nani   =)


    1. Hi, My name is Jenna and I've known I had LD for about six months. I'm also a Type 1 diabetic, so I think I've actually had LD for over a year - or more, but because so many of the symptoms looked like uncontrolled diabetes, no one would listen to me. We live in the Eastern Panhandle of WV and spend lots of time along the Potomac River. I know that I had a tick attached last spring, but never got a rash. I now have a picc line and started my 4th month of IV abx this week.

    2. Jenna said...first symptoms that we knew weren't diabetes-related...occipital headache (for over a year now), joint pain, vision and hearing loss, brain fog, ST memory loss...looking back there were instances that were probably LD, but were treated as ketoacidosis, because my BG skyrockets when I feel sick.

    3. Natalie Zayas-BazanJune 11, 2010 at 9:08 AM

      I dont have lyme, but i have a birth defect called spina bifida and hydrocephalus and i've seen the first hand effects illnesses can have on families. everyone please spread the word about lyme and the devastation it spreads to its victims and families!

    4. My name is Melissa Hotmer & this is the first time I am telling my story out like this.
      I have been sick for 3 years now. Fevers, chills, fatigue, night sweats, muscle weakness & joint pain, just to start. I have been in & out of the hospital, surgeries, tests, 25+ doctors & now heading in for a bone marrow biopsy.
      Out of all of my tests the only thing that had come back positive was my western block for Lyme. My ID Drs (there have been 3 of them now) keep telling me it is a false poitive & they think I have lupus. When I ask why all of the Lupus tests are negative they say those are false negatives. How does that make ANY sense?? Now I am on to a bone marrow biopsy next to prove it is not leukemia. I can't believe the money being spent trying to disprove a positive Lyme test!

      I don't understand why don't they just treat the Lyme since it is positive? It would have been cheaper in the long run that putting in stents in my ureter, 4 MRI's, 3 cat scans, Lumbar Puncture, X ray after xray, Nuclear tests, endless vials of blood the list goes on & on! Just give me my antibiotic & give me a chance to feel a little better!

      In the middle of all of this, not that it wasn't enough I had a nissen fundaplication. The Valve on my stomach stopped functioning completely & where my doxy was making me nauseaus I was throwing everything up because there was nothing to stop it. They finally did a scope & saw it wouldn't respond at all. Said it was fine 2 years ago, just died out I guess. They had to push a large hernia back down & use my stomach wrapped it up & around the asophogus & back onto itself & stapled it down. As it fills it makes a valve & closes off the stomach. I wasn't on a liquid diet for 22 days. Yesterday they upped my to very soft bland foods only until I go back on 6/30. The neausea is aweful. They have be on Phenergan & zofran for that.

      I feel for all of those that are suffering & live with the "But you don't look sick" attitude everyday. Noone knows the effort it takes just to get up everyday but those that have been through it all. Keep you chin up & your spirits high! There has to be a light at the end of the tunnel! There has to be an answer. The Doctors will wake up as their families are effected.

      Stay Strong friends. Our Story has just begun, there is no end to any of our stories yet, but if we all stick together & are there for eachother what we have is Hope.

    5. I have had Lyme disease since 2001. I was on a camping weekend in Durham, NC when I was infected. I got the bullseye rash. Then my hands began to swell and become extremely painful. I was very lucky, after 5 months of not finding anyone to treat me, I found a wonderful Lyme Doctor. I was in treatment for only 1 year before I went into remission. I was in remission for almost 7 years when I had a major spinal surgery and with my body being under so much stress, the remission was gone and I am now in full blown active chronic Lyme.

    6. Oops! I put all my info into one post. Here is the second one for the second entry.....My first symptoms were the bullseye rash, followed by swollen, painful hands.

    7. ok, here's my 3rd entry...I just became a follower of your blog!

    8. for my 4th entry I just shared your giveaway on Facebook. Not sure how to leave a link here. But we are FB friends and if you look under Diane Ballou, you will see that it's shared.

    9. My name is Suzi and I have been a victim of Lyme Disease for over a decade. I was first exposed to Lyme through a tick bite on the top of my head. I went to the doctor to have it removed and they didn't get the head out...and we all know what happens when you don't get the head out. Anyway, they had to dig it out of my head. From then on I had severe stomach issues and the symptoms just keep coming. In 10 years I have had 8 tick bites and now have about a dozen co-infections. My life has completely changed from being an outstanding athlete to not being able to walk very far without being in utter pain. However, I just started taking Argentyn 23 (Silver) a few weeks ago and I have gained I'd say a huge amount of my life back. No pain, no headaches, no memory loss...I suggest everyone look into it!!!

    10. you're doing such an amazing job of bringing awareness to people about this disease, keep up the great work. my daughter is now reciting bible stories to me about people who died even without a bug bite :P gotta love the attempt to understand such a terrible thing. - Joy

    11. I don't have Lyme disease, but up until about a month ago, I didn't even know it existed. It wasn't until Candice Accola began spreading awareness that I started to understand the harsh realities of the disease. I'm proud to be a part of the efforts to raise awareness and educate more people about something that many know nothing about, and at the same time I'll continue to research it for me with hope that I can prevent myself and those around me from becoming a victim of Lyme.

      Here is my twitter post as an additional entry:

      By the way, your work is phenomenal! I'm in love with everything that I've seen posted here and on your FB!

    12. My name is Brandi and I was infected around 2001. I lived in austin texas and had a rash that was thought to be Lyme, but instead of testing me and treating, they sent me to another doctor who had no idea what it was. Now ten years later, I suffering severely.

    13. My first symptoms were vertigo, twitching, tremors, and weakness on the left side of my body.

    14. I have not had Lyme. Have watched Under Our Skin.
      Have known people with it who had extremely difficult times getting over it. Glad your niece has progressed so well.

    15. My 12-year-old niece was diagnosed last fall. My brother and sister-in-law had to insist that she was tested; the doctors and a nurse practitioner insisted Lyme Disease was not a problem in North Carolina. They were wrong.

      You can read the whole story on my blog here:

      I hope your give-away brings lots of awareness to this horrible disease. You are doing a fabulous job, Nani!

    16. Thank you for all you're doing to raise awareness! <3

    17. I am a retired Nurse Practitioner. It is SO easy to test or treat a suspicious rash - at very little cost and inconvenience. I am appalled at the ignorance nay ARROGANCE of the medical community who turn their heads or insist this isn't a problem.

    18. My daughter was diagnosed with lyme last fall. We spotted multiple round purple/red rashes on her legs and torso in july. We made 2 trips to the pediatrician to have her tested for lyme. She had all the classic symptoms, neck ache, flu like symptoms several weeks prior to the rash,and she was very lethargic. Even after we described her symptoms, we were told lyme is not an issue in NC. We were told it was most likey some type of summer skin rash. 3 months later she was unable to walk on her leg due to a sudden tenderness and swelling. We took her to an orthopedic dr who drained fluid from her knee. We were sent to the ER and she had emergency surgery to remove the fluid later that day. After 4 days in the hospital we insisted on a Lyme test. Guess what??? She was positive on her western blot. The meds were brutal to her body and it took her all winter to feel herself. She is better...I dont know whether it is in remission or gone. She is terrified of getting another tick. I dont blame her..what she went through was terrible!

    19. A family friend has Lymes disease....and I'm so pleased to see how this is being publicized. I'm glad to know the symptoms because I have two young children and I too want to know the correct questions and tests to request if I should see these symptoms.


    20. The test for Lyme Disease seems to be a "Run only if all else fails" test in the minds of health care givers. My son- in-law, infected in the Pacific Northwest, had four years of symptoms before he was tested, and the symptoms are now so devastating to his daily life and so resistant to treatment that he despairs of ever being able to live life normally or painfree again.

    21. What you are doing here is so needed... thank you. The video is very useful. Good luck to us all...

    22. My first symptoms were severe stomach pains, a fluttering feeling in my head and chest pains. Fatigue and muscle/joint aches soon followed.

    23. I am officially following your blog :) I guess that is entry #3 for me! :) (Suzi Overstreet)

    24. Scary. Thanks for everyone who posted and left their stories. Thanks for spreading the awareness on your blog. I'm off to post on FB and see about watching the movie.

    25. It seems most all has been said and I am without words left with a swelling in my heart for concern for all victims with a strong desire to keep spreading the word on how to help victims and how to keep others from being a victim. Nani, you and your team are doing an outstanding job, beyond beyond. I hope (pray) to see you or Ashley...just anybody, on the air waves soon. I say this as I send a PSA kit to our local channel out of Gainesville, FL. God bless you all and keep the faith!!

    26. I am a 61 year old female who has had LD for app. 40years but was diagnosed in July, 2009. I could write a book on all the "odd" illnesses I have been treated for over the years. I had seizures when I was in my early 30's. They did every test available but found no reason why I had them. Then at the age of 37 they stopped.

    27. In my 40's I had a stroke in my sleep. The blood clot went to my right eye. I was told I must be an old person in a young body because I was to healthy and young to have a stroke. Three doctors and two hospitals did test and never found a reason for the stroke.

    28. These are just two of the many things that have happened to me that no one could find a reason for.Here are a few of the things the doctors have diagnosed me with; cronic sinititis (sinus surgery twice), cronic sleep apnea, hearing loss, brain fog, fibromialga, arthritis, restless leg syndrome, non alcoholic fatty liver,cronic fatigue syndrome, and the list goes on...

    29. There are days when I hurt to bad to even get dressed. I go from the bed to the sofa and my feet hurt so bad I can barely walk. My hands hurt as well as my neck,back, shoulders, and most of the time my whole darn body.
      On the few days I feel better I try to get outside or ride some place with someone. Then I hear comments that really get my blood pressure up: "You don't look sick. It SEEMS like you go alot of place (that is B.S.), and on and on.
      I would just like to say that no matter how I feel, I know there are a lot of people who feel a lot worse. Jesus suffered so much and died for me so who am I to feel sorry for myself?
      The doctors told me to try to keep moving and do as much as I can or my fibro will get worse.

    30. I will sum this all up by saying I am here for anyone who needs a shoulder to lean on, someone to listen, and someone who really understands what LD is all about. Please do not hesitate to contact me on facebook if you need a friend. May God Bless All Of My Fellow Lymies and the people and doctors that are there for us.

    31. Oh and I forgot to mention that I've made multiple donations (both over $5) to Lymenaide, so I guess that counts as my third entry. (I can provide proof of it if need be.) Thanks so much!

    32. Wow Nani, I had no idea it was so wide spread! I need to call you to find out how to protect my kids.. we are going hiking soon with Cub Scouts and I don't want to take a chance. Thank you SO MUCH for your devotion to spreading the word and educating everyone!

    33. Nani, I cannot believe I missed all the work you have done here!! I was aware of Ashley's PSA work, but I missed so much--THANK you for posting the PSAs, your work on all this, and for such clever, clever and important things--e.g. enabling folks w/o Lyme to enter this giveaway by watching Under Our Skin. Fantastic!

      I got Lyme near Plum Island in the late 60s. I was reinfected in the DC area around 2003 or 2004--can't recall, bec. since then I have been very, very sick. MUCH better now, much, thanks to the rarest of rare blessings: my doctor, who is a Lyme Literate Medical Doctor.

      The Poppy Seed is my favorite too.

    34. I do not have Lyme, but i try my best to help lyme diseise foundation and i aware people of the dangers of ticks. My blessings to all and i hope that they find a cure soon <3

    35. Every little thing that everybody is doing to help raise the awareness to this epidemic, Lyme disease, is doing great things in making a difference. You and your colleagues, for instance the PSA creations, are just another example.

      I was infected in either 1999 or 2005, many health issues from the year 2000 on and I finally had a major health crash in May of 2006. Six months later I was finally diagnosed with several infections that make up Lyme disease and have since been struggling to eradicate the infection. In the last 4 years I've completed one year with relapse, followed by 2+ years of aggressive treatment to eradicate the infection and year by year I have made great progress in health improvement. I am grateful for having found the way to regained health.

      Vancouver, BC Canada

    36. I first became ill with the first of several pneumonias in 1985. I'd had a bout with "ringworm" on my left bicep that I didn't report to anyone since I'd be forced off work until it cleared.

      Blood work done for my "walking" pneumonia showed that I had chronic relapsing Epstein-Barr (aka "mono"). No treatment other than rest.

      In '89, I was diagnosed with Fibromyalgia as a consequence to a bad rear-end accident.

      In those dark-ages of Fibro, nothing prescribed worked.

      An a retired RN, I believed in healthcare and medicine. That conviction has slowly been eroded.

      Seeking more help, I started seeing our local CFS guru who did lots of tests and prescribed lots of scripts. Included were ten runs of IV IgG which was supposed to cure me. It only emptied mt wallet. (And probably was detrimental.)

      He did find that not only did I have Epstein-Barr, but also HHV-6 and mycoplasma. Those were treated with a succession of antivirals but the only one that lessened my fatigue was the most expensive - gancyclovir.

      In late 2000, my doc was getting ready to do Phase III trial of Ampligen. While I couldn't afford to participate, his patients who were getting it had to have Lyme ruled out. Of those 25 patients, 24 tested positive for Lyme.

      Overnight, our CFS guru became our Lyme guru. He tested almost all of his patients and most of us had "equivocal" or positive results. Since my tests wre equivocal, I had to start oral Biaxin.

      My joint pain dramatically resolved, I sold my motorized wheelchair since I no longer needed it, and I recaptured my brain.

      I stayed on that oral antibiotic for about 4 years and seemingly had better results with far fewer problems than those who were placed on IV Rocephin.

      I became the President of our local 300-member Lyme Support Group. Our group eventually disbanded as former FMS and CFS patients began seeing improved quality of life with their Lyme treatments.

      Wanting to help, I still maintain a telephonic support and referral service for callers from all over the country.

      My doc surmised that the "ringworm" was my bull's eye rash so that dates my bite to 1985.

      However, I may have been re-infected in 2003 since I developed a circular rash on the inner aspect of my right ankle.

      My LLMD have parted ways a few years back and I'm praying my new Internal Medicine doc will step up more strongly and start testing my immune deficiencies and treat them.

      Last Fall, I realized I was in a relapse and after almost 4 years off, have returned to Biaxin, Flagyl and acyclovir for my high Epstein-Barr and Herpes Simplex virus titers - all with excellent results.

      I pray that everyone with Lme gets better testing, better research, and beetter treatments

    37. I had no idea it was that serious... This really opened my eyes!

      I wish more people were like you and Candice, helping other people realise about this disease.


      PS Here's the link to my tweet. =)

    38. Hey there!! My name is Crystal Dix, and I have had Lyme and a bunch of co-infections for 20 years!! I have had Lyme longer then I haven't had Lyme!! It has taken so much of my life, BUT now maybe it will give me something back by giving me a chance to win this awesome wallet!! LOL!! It's about time I reap some kind of reward from this yucky disease!! Don't ya' think?!?! LOL!!

    39. Awareness is being spread in our area too!! We just had our first annual Lyme Awareness Walk in the High Desert (Victorville/Hesperia/Apple Valley area)in Southern California!! Supposedly an area where Lyme does not exist!! Ya' right!! It was a huge success and so many people were amazed and informed!! Prevention can save lives!!

    40. I am a HUGE-MONGUS fan on Facebook and love to check out all of your creativity on there!!


    I love your comments...tell me what you think! =)