Avril Lavigne, Debbie Gibson, Yolanda Foster, Heather Dolan

What do these strong and beautiful women have in common?  Lyme disease.   Their stories are honest, heart breaking, and real and their voices have brought additional awareness to Lyme disease.  

Debbie Gibson and Avril Lavigne shared their stories in People magazine.  Recently Yolanda Foster and her husband, David Foster, shared a photo of themselves biting a lime and challenging their friends and fellow Bravo stars to #TakeABiteOutOfLyme. The Lyme Disease Challenge raises awareness, but it’s also a great way to raise money for ILADS, the International Lyme and Associated Diseases Society.  

It's simple to participate:

1. Take a photo of yourself biting into a lime.
2. Share one fact about Lyme disease.
3. Share your  photo and fact on social media and challenge three friends.  #LymeDiseaseChallenge. 

I can't think of a better way to utilize social media.  Together we can bring awareness to this awful disease.  

You can also make a donation to:

 http://ilads.org/ilads_media/lyme-challenge/

The chances that you might get Lyme disease from a single tick bite depend on the type of tick, where you acquired it, and how long it was attached to you. Many types of ticks bite people in the U.S., but only blacklegged (deer) ticks transmit the bacteria that cause Lyme disease. The blacklegged ticks need to be attached for at least 24 hours before they can transmit Lyme disease. This is why it's so important to remove them promptly and to check your body daily for ticks if you live in an endemic area.
 

A picture is worth a thousand words....

Lassie is taking a bite out of Lyme for Heather

I get by with a little help from my friends....

The Beatles sang it best and it applies to so many dear friends and my loving family.  I am thankful to everyone that is helping Heather during her journey.  

When she was released from the hospital, with the PICC line, I was able to be at her apartment with her for her first visiting nurse appointment.  It was overwhelming to watch the nurse explain the procedures required to care for the PICC line (having a sterile environment, flushing the line, injecting antibiotics, changing the dressing, protecting it when showering).   I wished at that moment that I could have stayed with her longer and help her adjust to this "thing" attached to her body.  

This is when the script says, "Cue the friends."  Heather's amazing friends were there for her.  They sat with her, they cooked for her, they laughed with her, they let her cry, they went to the store for her, and they helped with every day chores.  

Heather is a very private and extremely independent person.  It is hard for her to ask for and accept help.  The beautiful thing is that she never had to ask for help.  People just did it. 

These were the same friends that accompanied her to numerous ER visits prior to her Lyme diagnosis and sat with her.  It made it a bit easier to realize that so many loving and caring people can put others needs before their own.  For that I am eternally grateful.  

As for my amazing family, they were there for Heather and they were there for me.  My parents had the double whammy - worrying about a daughter and granddaughter at the same time.  Not an easy task.  I am blessed.  There is nothing better than being able to pick up the phone and call your parents.   

As for my friends, I got by with a LOT of help from my friends.

"Oh, I get by with a little help from my friends
Mmm, I get high with a little help from my friends (I wouldn't dare paraphrase the Beatles)
Mmm, gonna try with a little help from my friends"


"Lyme disease is a highly complex disease....it affects every person differently and to different severities. Diagnosis is not simple, treatment is not simple, and the Lyme patient struggles with trying to fight to get their life back and at the same time not complain too much so others don't get frustrated with them. It takes an immensely strong person to battle this disease. And doing it alone is often not an option"

Nerve Pain and Late Stage Lyme Disease

When Heather was 32 years old, she was admitted to the hospital and diagnosed with Lyme in December 2014.  

As I sat bedside, it was impossible to not reflect on other hospitalizations when she was 7 days old and then again at 15 months.  During these times Heather had surgeries to correct an intestinal obstruction and each surgery required a two week hospital stay.   They didn't give her pain meds since they claimed she didn't feel pain, but I watched her furrowed brow as she slept.   

Fast forward to her Lyme diagnosis and this time Heather is able to tell the doctors how awful the nerve pain is.  Her pain management in the hospital was a mix of Lyrica and morphine.  They had to ease her onto the Lyrica, so they temporarily supplemented it with morphine. Even with two strong medicines, I could still see her grimace in her sleep and grab her calves where the pain was most intense.  I felt so helpless, but I was so glad I was there to love her, listen to her, hold her, and reassure her that they would figure out what was happening.

As I reflected back on other illnesses, I reminded myself that my baby girl made a full recovery and she would do so again.  I learned then, that babies are resilient and I know how strong Heather is today.  

Heather is an amazing patient and is staying as positive as she can, given the pain she is experiencing and how this Lyme disease has affected her everyday living.  Nerve pain sucks.  Heck all pain sucks.  We will talk later about the meds, the adverse reactions, and how she coped.

To stay focused, I remember happy times. This picture of Heather at 5 years old embodies my baby girl’s free spirit - with her sun kissed face, enjoying her beach house.    Summer will be here soon and my sun lover will soon be getting some much needed solar therapy.




Common symptoms of Lyme-related neuropathy include pain, numbness and tingling in limbs.  Heather’s began with a prickling sensation in her hands, then her toes, then a shooting pain up both legs.

Thank you social media for world-wide awareness

Anyone who knows me well, is aware that I didn't use social media.  I am an old school girl that prefers to talk on the phone, write a letter, or visit in person.  Sure I have a Linkedin account, but that was for my career and business networking.   In the last few months a few celebrities shared their Lyme journey.  Their stories were poignant and rather hard to read - some of their Lyme experiences mimicked what Heather was dealing with.   It was then that I realized how necessary it was for anyone affected by this terrible disease to share their experience. Each journey is different, but if my blog helps one person, than I feel that I have been successful.  

I have shared my blog on Linkedin, and Heather has shared it on her Facebook page.  In the 24 hours that my blog has been live, it has been read by people in the United Sates, Ireland, United Kingdom, Vietnam, Australia, Russia, India, Canada, Hungary and Israel.  

I am humbled.  Please feel free to share this blog with anyone.  I am by no means an expert, but I am determined to help educate and share Heather's journey. 

Did you know Lyme disease was first recognized in the United States in 1975 after an unusual outbreak of arthritis near Lyme, Connecticut.

My page views by country

"Take a Bite Out of Lyme Disease"

In December 2014, my 32 year old daughter was diagnosed with Lyme disease. 

Before her diagnosis, I never knew how terribly debilitating this disease could be. I will share her Lyme journey on this blog -but for now I wanted to share the “Take a Bite Out of Lyme Disease” Challenge that kicked off March 1st, 2015.  The purpose of the Lyme Disease Challenge is to raise awareness and funding for improved Lyme Disease diagnosis and treatment.   Here are the instructions from the website - http://lymediseasechallenge.org/



 Lyme Facts

• Studies show that up to half of all patients with Lyme Disease received false negative results. This delayed diagnosis means they don’t receive needed treatment in a timely manner.
• Fewer than half of patients with Lyme disease recall a tick bite. Likewise, fewer than half of patients with Lyme disease recall any rash. Although the bulls-eye red rash is considered a classic sign.
• Infection with Lyme disease bacteria alone can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes, while long-term symptoms can lead to problems related to the central nervous system, including the brain, as well as the heart, joints and other musculoskeletal problems.
• Children are at the highest risk of contracting Lyme Disease and are more vulnerable to central nervous system infections.
• The CDC estimates that there are 300,000 new cases of Lyme Disease each year in the United States, 10 times more Americans than previously reported!  Some experts believe the actual number of new cases could be as high as 1-2 million new cases per year in the US alone.
• Lyme Disease has been called “the great imitator” and can be mistaken for numerous diseases such as ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s Disease, autism and other difficult-to-diagnose multi-system illnesses.
• Lyme Disease is prevalent across the United States and throughout the world.  Lyme disease has been found on every continent except Antarctica.

When Life Hands You a Lemon - or Lyme

If you had asked me last year about Lyme disease, I would have told you that a tick bites you, you see a bulls-eye rash, you feel achy, then you take a two week course of antibiotic pills and you are healed.  

Sadly, that is not the case for everyone.  Studies show that 1/2 of those bitten by the tick never see the tick or the rash.    Heather was that person - she never saw the tick, she never had a rash.  

It is still unclear when she was bitten.  Was it during her summer beach trip to the Outer Banks, a trip home in August and September, or one of her many trips to Long Beach?  She will never know.

Looking back, she started to express concerns about fatigue in Fall of 2014, but this seemed somewhat normal considering her 60+ hour work week.  From late October until Thanksgiving, Heather was diagnosed and treated for the flu and several kidney infections.   

It was Thanksgiving day when the tingling appeared in her fingers and toes.  Within a week, the symptoms progressed and one day she was unable to feel her toes and she had a stabbing severe pain that shot up from her feet to her knees.  It was then that Heather was admitted to the hospital and within days she was diagnosed with Lyme Disease. 

Until then I never knew about Borrelia burgdorferi, a type of bacterium  that is carried by a deer tick.   I never knew that it could affect your central nervous system.   

Keep in mind, Lyme is not easy to diagnose - I am sure you have heard that it is the great imitator.  In Heather's case, even with the diagnosis, there were still concerns that she had another autoimmune disorder.  

After a five day stay in the hospital, Heather was released from the hospital with a PICC line and she started a four week intravenous course of Ceftriaxone.  

The American Lime Disease Foundation provides the following checklist of common symptoms seen in various stages of Lyme Disease. 

Localized Early (Acute) Stage:

• Solid red or bull's-eye rash, usually at site of bite
  
• Swelling of lymph glands near tick bite
  
• Generalized achiness
  
• Headache
  

Early Disseminated Stage:

• Two or more rashes not at site of bite
  
• Migrating pains in joints/tendons
  
• Headache
  
• Stiff, aching neck
  
• Facial palsy (facial paralysis similar to Bell's palsy)
  
• Tingling or numbness in extremities
  
• Multiple enlarged lymph glands
  
• Abnormal pulse
  
• Sore throat
  
• Changes in vision
  
• Fever of 100 to 102 F
  
• Severe fatigue
  

Late Stage:

• Arthritis (pain/swelling) of one or two large joints
  
• Disabling neurological disorders (disorientation; confusion; dizziness; short-term memory loss; inability to concentrate, finish sentences or follow conversations; mental "fog")
  
• Numbness in arms/hands or legs/feet