Olympian fought Lyme Disease and won!

Since we're in the thick of the Sochi Olympics, I wanted to bring your attention to a very brave and determined woman, Angeli Vanlaanan.  Angeli is a halfpipe freeskier who made the U.S. Olympic team after a 3 year battle to regain her health.

What an inspiration and message of hope this is for all Lyme sufferers everywhere.  Yes, it is possible to regain your health, your strength, your life. 

To watch Angeli's documentary about her illness, click here.

To visit Angeli's website, click here.

All the best to you, Angeli!  We are very proud of you!

 



A story of hope

I was recently contacted by Cameron Von St. James whose wife, Heather, is a cancer survivor.  Given the nature of her illness and the target audience of my blog, he thought that his wife's story would be a fitting reminder to Lyme sufferers that we need to have hope. 

As I watched the short video, it reminded me of my days as a caregiver to my husband who had cancer, which I wrote about a few posts ago.  The stats for my husband's cancer were not in his favour, and neither were Heather Von St. James' stats.  But we should never place our hope in statistics or the odds, because only God knows how things will play out, and in fact, the Bible states that the outcome is completely in His control. 

And I wouldn't want it any other way!

Does this mean that the results will always be favourable?  No, not always.  Are our prayers always answered?  Yes!  But not always in the way we want.  Regardless, my husband and I trusted God through our illnesses to sustain us, give us courage, provide medical care, and lead us down the right path.  But had He decided that it was time to call us home, well, as scary as that might seem, we were ready for that, too.  Submitting our lives to Him in our suffering gave us the ultimate peace and hope that we needed.

Dear Lyme sufferers, don't lose hope!  The road may be long, winding, bumpy, and sometimes scary, but there is always hope and a Heavenly Father who cares.

Thank you, Heather and Cameron, for sharing your story.  May you be blessed with many more years of good health.  To visit Heather's blog, click here.

 

 



The other half of my story

I know how you feel.  Really, I do!

I empathize with anyone who has ever been sick, and I empathize with anyone who has ever taken care of someone seriously ill.  I've been both the patient and the caregiver over the past 10 years.

I've survived those trials, not just to tell about it, but to hopefully help others navigate the waters, and to give hope and courage and strength to people in similar circumstances.

This blog is mostly about my Lyme disease story, but I thought I'd give you a peek into my role as a caregiver, long before Lyme appeared on the scene.  And the reason I want to share this with you is to let you know what I ultimately learned from this experience.

So here's the rest of my story.....

Ten years ago (2003), when I was 2 months pregnant with my second child, we received devastating news.  My husband, who was 38 years old at the time, was diagnosed with a rare and aggressive cancer called SNUC - sinonasal undifferentiated carcinoma.  The prognosis for this type of cancer is dismal.  We hoped for the best, but prepared for the worst.

As my baby grew within me, I watched my husband endure nasal surgery and a craniotomy, as well as 6 weeks of daily radiation to the head which left him so ill that he was unable to keep food down.  He lost 50 lbs. along the way, but he persevered and survived the treatment, the necessary evil.

Our son was born as my husband was recovering from this medical intervention, and it seemed to be a new beginning for us.  My husband was regaining his strength, which was perfect timing since we had a newborn and a toddler on our hands.  Between breastfeeding and potty training, life was very busy!  Things were looking up, and we knew that if my husband could reach the 3 year mark cancer-free, then he would be considered in remission.  So we waited......and we hoped! 

Two years went by and life was feeling normal again, when my husband suddenly became ill.  He developed a fever one day that just wouldn't go away, and as the days passed, he became more and more lethargic with clouded thinking.  On the 13th day of his fever, I took him to his GP who had him admitted to the hospital for tests since he couldn't figure out the cause.  Neither could the specialists at the hospital.  My husband was given a routine CT scan in preparation for a lumbar puncture (aka spinal tap), and voilà....the scan revealed an orange-sized brain abscess, which is basically a pocket of infected fluid.  My husband had surgery the next day to drain the abscess, and spent the next 12 weeks at home on a PICC line, receiving continuous IV antibiotics.

Over the next 5 years, he went on to develop another brain abscess, at least 6 cases of bacterial meningitis, and seizures, all of which required hospital stays of a week or more, and weeks or months of IV antibiotics at home.  Each illness was life-threatening.  My husband's cancer seemed to be in remission, but it became evident over time that the cancer surgery must have left him with a small hole in the floor of the brain cavity.  This was allowing bacteria into the brain, which was causing the abscesses and meningitis.

Each time he was sick, our family was thrown into survival mode.  Relatives came to stay with us when they could, but sometimes it was just me with my boys while daddy was in the hospital.  I continued to work as a teacher, care for my children, visit him in the hospital each day, and took over responsibilities that were normally his in our household, like managing the family finances, car maintenance, and grocery shopping.  In addition, there were medical decisions to make, medications to organize and administer, and doctor's appointments to get to.  Having lost his licence for six months due to the seizure, I became the official family chauffeur as well!  It was so much work, but somehow, I did it. 

The time came three years ago when my husband's surgeon urged him to have surgery again, this time to fix the problem once and for all.  After a great deal of reflection and prayer, looking at the pros and cons and weighing the risks, we decided to do it.  This surgery was even more complicated than the first one, as surgeons had to transplant vascularized tissue from his arm onto the floor of the brain cavity, to close up any leaks.  The first few days post-surgery were touch and go, and ironically, he developed a case of post-op meningitis in the hospital which doubled the length of his hospital stay, but he made it through.  That was in the fall of 2010.  Since that time, he has had one seizure episode in the spring of 2011, and nothing since.  Nothing!  It's been 2 1/2 years of relatively good health! 

To God be the glory!
 

These past 10 years have caused me to reflect a great deal.  People sometimes ask me how I managed to keep it together all those years.  My parents often told me how amazed they were that I managed so well during these crises.  But I'll tell you this.....I did not survive under my own power!  God lifted me up, sheltered me, gave me the ability to endure, and gave me the peace that transcends understanding.  He worked through our family, friends, and church to carry our burdens and help us cope.  And all of this taught me a very important lesson: 

God's grace is sufficient for our trials.

 

Cast your cares on Him, dear readers.  God is love, and His grace is available to you, too, for the forgiveness of sins (first and foremost), for growth in godliness, and for help in time of need.

My husband and I have just celebrated our 20th wedding anniversary, and Lord willing, I look forward to many more years with him.

Meet my Lyme friend, Brandi

Brandi and I have been in touch many times online over the past couple of years.  Long before I had my own blog, I came across hers and I couldn't believe the similarities in our situations.  It was comforting to find someone who had been through the same thing, someone who could validate all I had been through.  Chronic Lyme is REAL, not a figment of our imagination as some in the medical community would say about us....and even right to our own faces.  In time (maybe decades from now), we will be vindicated by medical research that will no doubt prove that Lyme spirochetes persist beyond a 1 month course of antibiotics.  Thank you, Brandi, for opening yourself up in this way to help others.  We Lymies are very proud of you!

Check out her interview here:  The Boston Globe, August 18, 2013

Lyme in Australia

Lyme is everywhere.  From Canada, to Poland, to Australia.  It's just so unbelievable to read stories of people, or whole families, affected by Lyme but who are being turned away by the medical community.  And that's happening from one corner of the Earth to the other.

Honestly, does the medical community think we're making this stuff up?  Do they think I've "faked" my recovery after 17 months of antibiotics?  Just what will it take for them to BELIEVE?

I feel for Australians who have been affected by Lyme.  Our situation in Canada is only marginally better then theirs.  But at least we neighbour the U.S. where doctors who treat Lyme are accessible.  Australia is on its own, so the situation is more difficult. 

I was encouraged to see that the Australian family in the video below has found a Lyme-literate medical doctor in Australia to treat them.  They are receiving antibiotics and herbal medications.  I wonder what the rules are in Australia regarding long-term antibiotic treatments for Lyme.  In Canada, a doctor will lose his licence if he/she does not follow the protocol for Lyme treatment which permits only about a month's worth of antibiotics. 

All I can say is that we need to continue to speak up and tell our stories - in newspapers, on the radio, on blogs, on YouTube, on the internet, and on Facebook.  Wherever and whenever we can.  We need to continue to bombard them.  Eventually, things will change; I believe that.  And these social media will have played a huge role in that.

Calling Aussies!

I have noticed quite a number of readers of my blog from Australia lately.  I'd love to write a blog post featuring Lyme disease in Australia.  Would you help me by sending me your comments, either by commenting on this post below, or by e-mailing me at astraightpath27@gmail.com?  I'd love to hear from you to get a better understanding of what's happening in your country.  I may use some of the information in my blog post, but will be sure to keep names private.  (And feel free to remain anonymous if that makes you more comfortable.)

I've seen some news reports out of Australia on the internet, so I have a sense of some of the issues.  From what I understand, medical officials deny that there is Lyme disease in Australia, yet there are people with Lyme who have never left the continent!  I know that there have been some demonstrations / protests organized to draw attention to the issue.  I know it's hard to get treatment for Lyme in Australia.

I'd love to hear what your personal experience has been.  If you give me permission, I could even feature your story on my blog.  Please let me know if that would be OK.

Thanks for your help!  Sending warm thoughts and blessings to my fellow Lyme sufferers from Australia.

All we need is hope

It is amazing to see what hope can do for our soul!  Lymies need hope and need to hear success stories to help them persevere through the rough times.  I think it's a fantastic idea that my friend and fellow Lyme blogger from Lymed out has decided to include a 'Success Stories' tab on her blog.  I was honoured to be the first one interviewed for this, and I hope to see dozens more send in their success stories.  We need to hear them, especially when there is so much negativity surrounding this illness, such as:

- Disbelief from our doctors
- Suspicion of U.S. Lyme labs
- Lack of support from family members who do not understand the issue and who have not walked in our shoes
- Fearmongering about long-term antibiotics
- Denial of insurance because your illness is not recognized

And the list goes on.

Be careful what you search for on the internet.  You will find a lot of negative things there.  Search for the stories with the happy endings, and believe that that could be YOU!

One of the first stories that gave me hope was the story of Michelle Backes who made a YouTube video about her struggle with and recovery from Lyme disease.  It really helped me to carry on and understand that there was a real possibility that I could recover!  You can watch it below.

Thank you, Michelle.

Part 1

Part 2

A story you will never forget

It is so worth it to take the time to watch such an amazing story of love, suffering, faith, and hope.  I continue to be in awe of this Canadian couple, following Christa on Facebook.  She continues to do remarkably well and has jumped back into life with both feet.  I am so glad their video is back up on YouTube to show the world the suffering imposed upon Lyme victims by the medical community who is so terribly ignorant of this illness.  Go grab a cup of tea or coffee, and settle in for an hour to share Christa and Justin's journey with them.

Our Story - Life & Lyme

Justin and Christa Vanderham

Dear doctor

Here are letters I'd love to send to some of the doctors I saw in 2011.  Of course, I never will.  But writing them was cathartic, and a reminder of what I was up against in getting proper treatment for Lyme disease.

Dear Emergency Room Doctor #2,

I'm sure you don't remember me.  I was an ER patient in February of 2011. 

The night I came with my husband to the ER was one of the worst nights of my life.  I hadn't slept in about 3 weeks due to insomnia, and had horrible vibrations in my legs and worst of all, head. I had so many awful symptoms.  My husband helped me limp out of my house, drove me to the ER, and stayed with me for who knows how many hours before I was finally ushered into an 'pod'. 

You listened to me, but couldn't piece together all of my symptoms.  You did arrange for an immediate CT scan, though, which revealed nothing abnormal.  Your resident gave me a neurological exam.  You then pulled my husband aside and asked him if I was doing illegal drugs.  He told you NO because, of course, I was NOT!!!  Why did you feel the need, just a short time later, to ask him this same question again?  Why did you not believe his answer?  Did my symptoms appear to you to be some kind of drug withdrawal symptom?  Was I acting like a drug addict?   

You finally decided to put a referral in to Urgent Neuro, but unfortunately I got a call from that department a few days later to say that I did not qualify. 

I left the ER with no answers, and two prescriptions:  Ativan and Imovane.  I was to take them together to help me fall asleep.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Yours sincerely,
Paula 

Dear Emergency Room Doctor #3

I'm sure you don't remember me.  I was an ER patient in March of 2011.

My husband drove me to the ER because I was so physically ill and overcome with anxiety.  Feelings of dread were just washing over me, and I couldn't control it.  I knew I needed help.

My body was literally shaking as I lay on the examining table.  I just couldn't control the shaking or my emotions.

I talked to you about my suspicion of Lyme disease, and you truly convinced me that I needed to forget about this crazy idea and work on my anxiety, and that an SSRI would help me immensely.

You really were a very kind doctor, and I appreciated the time you took with me.  You were calming, and really did have me convinced that this was all the result of the great stressors I had in my life.

I left with a sub-lingual Ativan and an encouragement to go back to my family doctor.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Yours sincerely,
Paula

Dear Doctor of Psychiatry,

Perhaps you remember me, who knows?  I was a patient of yours in the spring of 2011.

I came to you because of the great anxiety I had, because of stressors I had in my life, and because of the inability of doctors to figure out what was causing my horrendous physical symptoms.

You listened, and then explained to me that I had a 'tired nervous system' from all of the stress I had been under in the previous several years, caring for a husband who was seriously ill.  How my tender glands and low-grade fevers factor into this, I do not know.

I talked to you about my fears, and my belief that I had Lyme disease.  You listened, but refused to consider it. 

When I finally received the positive blood test results, I was so elated to finally know what was wrong with me!  I came to my appointment so excited to tell you that I had an answer!

But you didn't want to hear anything about it.

You cut me off.  You scolded me.  You told me that you did not need a lecture on Lyme disease.  You told me to stop treating your office like a medical clinic.  You told me that I must stop talking about Lyme disease in the appointments, and not to come back to see you unless I was willing to work on other areas of my life.

What was the problem exactly?  Was it your pride that refused to believe that you were wrong in your 'diagnosis' of me?  Were you insulted that I challenged your diagnosis?  It was never my intention to sound as though I was second-guessing what you were telling me.  But I had to dig deeper because I just felt so physically ill.  I was truly expecting you to be thrilled for me that I had a positive Lyme blood test.  Instead, you reprimanded me.  I will never forget how you treated me that day.

That was obviously the end of our doctor-patient relationship. 

I just want you to know that I have been on antibiotic treatment for 15 months now, and I'm feeling really good.  One by one, the symptoms started to fade away, and I have regained my strength.  Had you known anything about neuro-psychiatric Lyme disease, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Yours sincerely,
Paula

Dear Neurologist #1,

I'm sure you don't remember me.  I was your patient in January of 2011.

I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep.  I also had vibrations in my legs.
You performed a very thorough examination on me, and couldn't find anything 'wrong'.  You ruled out any debilitating neurological disease such as MS or ALS, but you could not offer any reason for my symptoms.

Out of desperation, I came back to you two months later to ask if there was anyone you could refer me to.  Maybe you could think of a colleague somewhere who might have some particular expertise, and who could help to diagnose me.  Your answer was 'no'.  You explained that sometimes we just don't know why these things happen, and there just aren't any other tests to run on me.

I showed you my positive Igenex test results, and you were very skeptical.  You glanced at them, and told me that you would consider it a 'negative' result.  Why would you say it was negative, when Igenex called it positive?  I have several positive bands on the Western blot.  Do you have any expertise in reading Lyme Western blots? 

I never saw you again.  What more could you do for me?

I just want you to know that I finally did receive a diagnosis of Lyme disease from a physician in the U.S.  I know that doctors in Canada have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  I have been on antibiotics for 15 months, and almost all of my neurological symptoms have disappeared.  Perhaps this information will help others who come to you with unusual symptoms.

Sincerely yours,
Paula

Dear Neurologist #2

I'm sure you don't remember me.  I had an appointment with you in March of 2011.

I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep.  I also had vibrations in my legs.
You performed a neurological exam on me, and looked at my MRI.  You couldn't find any reason for the symptoms I was suffering from.  But you said I looked 'anxious'.  True enough.  But anxiety was NOT the cause of my symptoms.

When I asked if you could refer me to an infectious disease specialist, you said there was no reason for that, as I didn't have a high fever.

When I asked if this could be the result of Lyme disease, you quickly dismissed that idea.  "No, Lyme disease wouldn't cause this."

Well, in fact, it can.  Hundreds, or perhaps thousands, of people have reported symptoms just like mine, and they have tested positive for Lyme disease.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Sincerely,
Paula

Dear Endocrinologist,

I'm sure you don't remember me.  I came to see you in March of 2011.

I was referred to you because I was having strange vibrations in my head and body, and the head vibrations prevented me from falling asleep.

You were very kind, and you spent a lot of time with me.  You said that there was nothing endocrine-related that would cause symptoms like this.  But you told me to keep searching and to leave no stone unturned.  And that is what I did.  Thank you for that advice.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Sincerely yours,
Paula

Dear Infectious Disease Specialist,

I'm sure you don't remember me.  I had an appointment with you in May of 2011.

I was referred to you because I had a whole host of strange symptoms which I presented to you in a typed document.  I had also received a positive Lyme blood test from Igenex.  I was so hopeful that I would find some answers at this appointment and finally receive treatment.

You spent a lot of time with me, listened patiently, and spoke thoughtfully.  However, you did not believe I had Lyme disease despite my positive blood test.  You felt that it was improbable, and said that our medical system works on probability.  You believed that it was more likely that my symptoms were caused by anxiety.  I'm still not sure how tender glands and low-grade fevers factor into anxiety.  I'm also concerned about the 'probability factor' in diagnosing someone.  This would overlook quite a number of people who have rare conditions, would it not?  I'd rather be treated as an individual, not a statistic.

I told you about my risk of exposure, that I had been walking through the woods of a certain provincial park where we had actually received literature on the way in regarding ticks and Lyme disease.  Your response was, "So?  I have a cottage next to that park."  Am I correct in my understanding that since you have never come into contact with ticks at your cottage, it therefore means that I could not have come into contact with any at the adjacent park?  I'm not following the logic.

You are very skeptical of U.S. for-profit labs, believing them to be some kind of scam.  You said that they make their tests more sensitive.  Isn't sensitive actually better?  Have you researched this lab?  Do you know their track record?  Do you know the results of government inspections on the lab?  If you looked into it, I'm sure you would be satisfied with their reputation.

I had several positive bands on my Western Blot, and one particular band (31) which is highly specific for the Borrelia bacteria, had a triple positive reaction (+++).  Surely you know that bands 31 and 34 were removed from other standard Western Blots because the Lyme vaccine was based on them.  And here I was, with a triple positive for band 31 - a very strong reaction.  And I've never had a Lyme vaccine.  But you just ignored all of this valuable information.

You were prepared, however, to offer me a 3-week prescription for doxycycline to 'ease my mind'.  I thank you for that, truly!  Not that 3 weeks would have cured my illness, but it confirmed my self-diagnosis when I had a herxheimer reaction on day 3 of the treatment.  The herx lasted for 6 days.  It was another piece of evidence to present to the two U.S. Lyme-literate doctors I saw a month later.  So thank you.

You were really very kind to me, but still, I have to hold you to a higher level of accountability because this is your specialty, after all.  And yet I was left to suffer.

I just want you to know that I began treatment for Lyme disease in June 2011, and continue on antibiotic therapy 15 months later.  Almost all of my symptoms have disappeared.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms and a positive Igenex blood test. 

Sincerely yours,
Paula

One week down.....

 

Well, it was back to work this week.  Back to my regular job as an elementary school teacher.  And I have loved every minute of it!

 

I had no idea, until I became ill with Lyme disease and was forced to take over a year off work, just how satisfying and therapeutic it is to work.  It's funny, because prior to my illness, I had been thinking about how wonderful retirement would be, and I secretly wished I would win a lottery or something and be able to quit this very busy and often stressful job and spend my days in leisurely activity or caring for my home.             

 

I did experience a few months of that 'freedom' towards the end of my sick leave, when I was stronger and felt better.  My kids are in school full-time, so I had a fair bit of time on my hands during the day.  But to be honest, it wasn't what I imagined it would be.  I really wasn't motivated to 'care for my home' like I thought I would.  Laundry piled up, and I constantly felt 'behind' in everything.  And that was very weird for me, who is usually extremely organized and on top of things.

 

One thing I learned about myself is that having an excess of time on my hands is actually a de-motivator.  Because I knew I had lots of time in my day, I felt I could put off various household chores until later.  My 'to do' list got quite long, and things just weren't getting crossed off.  Then, I started to get stressed out about that, as well as my lack of motivation!

 

The solution to this was.......going back to work and getting busier!  How ironic.  Returning to my job has forced me to be up and dressed at the same time each day, keep up with the laundry and household chores, and plan my time well.

 

I also realized just how much I missed the adult, social interaction of work.  I like my colleagues, and it was so nice this week to be in my old, familiar environment.  I've spent the past 13 years at this school, so it's my home away from home. 

 

I've also been so happy to meet my new students and have some fun with them this week as we get organized, get into our routines, and get to know one another.  So far, the classes I teach have been lovely.

 

This is not to say that there won't be stressors along the way this year.  Report card season comes to mind, when teachers work non-stop at home for a couple of weeks.  Behaviour issues with a few students are bound to crop up, too.  I'll have to find ways to de-stress.  I know how important it is to keep the stress under control so that one's immune system doesn't weaken and give the Lyme a chance to gain a foothold.

 

Adequate sleep, regular exercise, and healthy eating will need to become priorities in my life to keep this illness in remission.

 

So all in all, this has been a good week.....a great beginning to a new chapter in my life.

 

I'm grateful for my job.  Just one more lesson that Lyme has taught me.

 

Faces of Lyme

Thank you to these 4 women who participated in this short video interview by The Poughkeepsie Journal.  I believe that it is our stories that are causing politicians and the public to sit up and take notice of this illness.  And this is one of the reasons for my blog - to add my story to the thousands of other stories out there.

How can we continue to deny all of this clinical evidence for chronic Lyme disease?  Well, the answer is, we can't.  There are just too many people with the SAME story to ignore! 

As I listen to these women, I feel like it is 'me' talking.

Faces of Lyme - If the video does not appear when you click on the link, you will see a search bar on the website.  Just type in Faces of Lyme, and the video should appear in the group of recommended videos.  Click on it from there.
*I seem to be having trouble accessing the video a second time from my computer.  I think it may restrict multiple viewings because they want subscriptions.  Please let me know if you are not able to access the video.  I have had no trouble accessing it from Facebook.  Go to the California Lyme Disease Association on FB, and find the status update there.

A story with a happy ending

One thing people love is stories, especially happy stories with happy endings.  They lift us up and give us hope.  And I'm not sure how many of us would be able to get up in the morning, and carry on, without some hope in our hearts.

Lyme disease CAN be managed!  Whether or not it can be truly 'beaten' remains to be seen and to be researched.  But it IS possible to recover and live a normal life again.  Sometimes, it takes years, but it CAN happen.

Do not give up hope!

Here is a great article that I read on LymeDisease.org.  So encouraging.  So uplifting.  I love how the 14 year old girl, and the 20 year old woman (both the same person!) are juxtaposed.  So well done.  So effective. 

TOUCHED BY LYME: 20-year-old’s advice to her 14-year-old self: “You gotta have hope” 1st May 2012

The young woman in the photograph is doing a cartwheel—something she couldn’t do six years ago, when she was wheelchair-bound from Lyme disease. At that time, her body was wracked with pain, 24-7. She had a cascade of other symptoms as well, which made it impossible to go to school, to carry on with normal daily activities, and often, even to get out of bed. Life seemed bleak indeed.

Yet, out of her pain and misery, Rachel created a gift that has just recently resurfaced. In March 2006, she spoke to a video camera about how she was feeling and her frustrations with doctors who refused to recognize that Lyme disease even exists in California. It is a visual record of a young teenager trying to make sense of her desperate situation. Her demeanor seems calm, but if you study it closely, you can see the fear and vulnerability trembling below the surface.

But here’s the twist. Last weekend, after she re-discovered her earlier footage, Rachel recorded her present, healthy, walking self, responding to the same questions her younger self had answered. She edited the old and new together, cutting back and forth between 2006 Rachel and 2012 Rachel.

Together, the two Rachels have valuable wisdom to impart. Take a look:

Rachel currently attends college in northern California.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.

Interview with Jim Wilson of CanLyme on the CBC

The CBC strikes again - in a good way!  If you have followed my blog, you may know that CBC radio is close to my heart because it was an interview I heard on their station in 2010 that helped me to self-diagnose my Lyme disease.  The CBC continues to shine a light on Lyme.  Today, the CBC aired a 1 hour segment on Lyme disease with guest Jim Wilson, founder of the Canadian Lyme Foundation, or CanLyme.  They also took numerous calls from Ontarians afflicted by Lyme disease.  The majority of those people, like myself, have had to travel to the U.S. for treatment.  Jim Wilson, a former Lyme sufferer, is so knowledgeable, and a very calm, rational speaker.  His foundation has helped to provide guidance to Elizabeth May's team in preparing the bill.  The segment also featured a short interview with an infectious disease specialist from Toronto who pretty much toed the old party line - the one we're trying so desperately to change!!!

Click here to listen to the program on CBC's Ontario Today.

Click here to visit Jim Wilson's excellent website, CanLyme.

Thank you, CBC!

I am so thankful for the CBC's openmindedness in reporting on Lyme disease several times in the past couple of years.  Had it not been for an interview I heard on the CBC in 2010, I don't think I would have my Lyme diagnosis.  Here are some recent CBC reports on Lyme disease that I found on the CanLyme website.  Thanks, CBC!

Lyme disease victim in Fredericton (July 5, 2012)

Lyme disease: Dealing with the disease no one believes in (July 6, 2012)

Lyme disease comes to Fredericton (July 9, 2012)

Elizabeth May Tables Lyme Bill

Well it finally happened TODAY!  Elizabeth May, Green Party leader, tabled a private member's bill to develop a national strategy for Lyme disease.  I'm ecstatic, and even a little teary.  I can hardly believe this day is here, finally.  It is 40 years since the first diagnosed cases of Lyme disease, in Lyme, Connecticut.  It has taken THIS long for people to finally come to the realization that this is a health crisis.  So many people are suffering, needlessly, due to lack of education and understanding.  I'm not going to even go into the whole political mess of Lyme disease - the corruption, the conflicts of interest, the insurance companies.  I'm just going to enjoy my evening and breathe a huge sigh of relief, knowing that someone in a position of power has finally gotten the ball rolling on this.  Praise the Lord!

Lyme in Norway

It has been one year now since my Lyme disease diagnosis.  It was great to feel validated, at last.  Two doctors, in two different U.S. states, affirmed what I had been strongly suspecting for months - that I had a borrelia burgdorferi infection.  My treatment could finally begin!  But we had to prepare ourselves for what we would be facing in the coming year. 

Going to doctor's appointments that are 3 hours from my home, that require a hotel stay, that require arranging childcare for the kids, and that require payment for services has been an inconvenience, I'd say.  Taking antibiotics long-term has been a concern, despite the fact that I understand the need for it.  Having a physician who was so far away was a worry, as well, in case something went wrong. 

To put this into perspective, I remind myself often that there are so many people who travel much farther than me to receive treatment, and many people who can't find ANY care at all for their Lyme disease.  Some people suffer for years before they are diagnosed, whereas I was sick for only 5 months before starting treatment.  I really am grateful for the care I have, despite the inconveniences.  Sometimes I stumble across a video that reminds me of these things.  Here is a news report of a man from Norway who could not find the proper diagnosis and care in his country. 

I hope that one day these stories will be history, and that Lyme disease will be properly recognized in the medical community here, and around the world.

How LONG will it take?

As I scan the internet, I come across more and more stories of Canadians in the same boat as me - people with debilitating symptoms, with a negative Canadian ELISA, with a positive U.S. Western Blot, with doctors unable to put the puzzle together, with a health care system unwilling to recognize the illness DESPITE so much clinical proof.  Thousands of people suffering.  How long will it take for the government and medical bodies to recognize this?

The following video is of Christine Heffer from Corunna, Ontario, whose Lyme struggle has prompted Sarnia MPP Bob Bailey to put forth a private member's bill in the Ontario Legislature.  If you would like to help the Lyme cause, you could print off a copy of the petition here, have people sign it, and send the original to Bob Bailey whose address is on the petition.  I'm in the process of doing this right now.



The next 3 videos are of individuals affected by Lyme, speaking at a press conference in 2008.  Yes.....2008.  What's been going ON in the past 4 years?  What sort of proof is needed to get things moving?  Sadly, the Canadian physician who greatly helped those 3 individuals to resume a normal life, has been forced into retirement due to pressure from the medical authorities. 



Just what is going on here?  How LONG will it take?