Monday, August 10, 2015


Time to Pray
I got up early one morning
and rushed right into the day;
I had so much to accomplish
that I didn't have time to pray.
Problems just tumbled about me,
and heavier came each task.
"Why doesn't God help me?" I wondered.
He answered, "My child, you didn't ask."
I wanted to see joy and beauty,
but the day toiled on, gray and bleak;
I wondered why God didn't show me.
He said, "But My child, you didn't seek."
I tried to come into God's presence;
I used all my keys at the lock.
God gently and lovingly chided,
"My child, you didn't knock."
I woke up early this morning,
and paused before entering the day;
I had so much to accomplish
that I had to take time to pray.

Author unknown

"The Grotto" in Tobermory

As soon as my health improves, I quickly begin to lose focus and prioritize my own activities before those of actual importance- time spent teaching my children, time with God, restful time to let my body and mind recover. There is always so much to do, you see and apparently I quickly fall into the trap of thinking I am holding up my corner of the world..... So I continue to yo-yo back and forth between times of relative physical strength and setbacks.  I will continue to do so until I learn to pace myself and prioritize my time well.

Overall I extremely happy with my progress.  God has granted me a measure of health that I no longer dreamed was possible!  I am very much appreciating being able to do the activities of regular life that I formerly took for granted.  I am enjoying the summer immensely and am regaining much of my physical ability and stamina.  I am mostly able to take care of my household and children without assistance (although I am getting somewhat worn out with the demands of having all three children home from school during this long summer break).  I receive Vitamin C IV treatment and ozone therapy at the naturopath once a week and use the afternoon of that day to rest and recover.  I am also intending to try bioresonance therapy - there is a clinic in Montreal that offers bioresonace and I am scheduled for treatment weekly during the month of September.  I intend to use it as a tool to aid in the recovery of my immune system.  I have been experiencing immune flare-ups (coldsores, urinary tract infection, yeast infections, mouth ulcers, allergies).  Now that I have killed off much of the Lyme bacteria, we are shifting our focus to strengthening my weakened immune system to be able to maintain an acceptable level of health that will, Lord willing, allow me to live a relatively normal life.  I am currently awaiting an appointment to have my picc line removed so I am very excited that we are moving into the next stage of recovery!  With my picc line out I will also be able to take up swimming which will help me regain overall physical strength.  Praise God - He has been good to us!
Thank-you all again for your ongoing prayers and support.  May God continue to bless our efforts.

The other day I began to write a list of some of the things I am able to do that I haven't been able to for years.  Here are some of the things on that list to praise God for:
- I can stand to shower
- I can stand for long enough to give my husband a hug
- I rarely need to use my stool to sit on when working in my kitchen
- I can do my own groceries with little assistance
- I rarely need to park in the handicapped parking
- I can wait in line at the store without having to sit on the floor
- I can chat at church without leaning against a wall or perching on my cane
- I can go downstairs to tuck my children in bed at the end of the day
- I can walk to the library or the park with my children
- I have the energy to go on dates again with my husband
- I can prepare my own meals
- I can teach my children how to play cricket
- I can play my guitar again!
- I no longer get night sweats
- I rarely have muscle twitching
- Overall I have less muscle and joint pain
- I have packed my cane and walker away
- I am done IV antibiotics
- My brain fog has cleared - I can THINK again!!
- I can have an occasional glass of wine ;)




Falling Asleep in the Sunshine

This morning I was encouraged to listen to a message by Alistair Begg regarding the place of trials and suffering in the life of a Christian.  It was one I have heard before but it was good to listen again, to help keep this life in an eternal perspective.  As we know from Paul's letter to the Corinthians, Paul was given a 'thorn in his flesh' which God refused to remove, although Paul begged Him three times.  We are told that this was to keep Paul from becoming conceited, and cause God's power to become more evident through Paul's weakness.  Sometimes, this answer does not feel like enough for the suffering believer.  We are often more concerned with our own comfort and well-being than the glory of God.  Unfortunately, as Alistair Begg pointed out, we are prone to fall asleep in the sunshine but are alert and awake when buffeted by the storms of life. Apparently many of us need hardship to keep our eyes fixed on Jesus and admit our reliance on God for absolutely every aspect of our lives.  

Here is a link to the sermon if you are interested:


 Tyson & I fishing

I asked the Lord that I might grow
In faith, and love, and every grace;
Might more of His salvation know,
And seek, more earnestly, His face.
‘Twas He who taught me thus to pray,
And He, I trust, has answered prayer!
But it has been in such a way,
As almost drove me to despair.
I hoped that in some favored hour,
At once He’d answer my request;
And by His love’s constraining pow’r,
Subdue my sins, and give me rest.
Instead of this, He made me feel
The hidden evils of my heart;
And let the angry pow’rs of hell
Assault my soul in every part.
Yea more, with His own hand He seemed
Intent to aggravate my woe;
Crossed all the fair designs I schemed,
Blasted my gourds, and laid me low.
Lord, why is this, I trembling cried,
Wilt thou pursue thy worm to death?
“‘Tis in this way, the Lord replied,
I answer prayer for grace and faith.
These inward trials I employ,
From self, and pride, to set thee free;
And break thy schemes of earthly joy,
That thou may’st find thy all in Me.”
- John Newton

A Political Disease

Lyme is a political disease.  It's mechanisms are relatively unknown yet and doctors here in Canada are ignorantly relying on inaccurate tests and following inadequate treatment guidelines.  I have seen the devastation that having this disease in Canada causes - especially for people who do not have access to finances to receive out-of-province care. 
We need to tread carefully when discussing the political nature of this disease as the very livelihood of some Lyme patients and the security of the licenses of doctors who dare to treat the disease with the necessary protocol are at stake.  I have met someone with Lyme recently who has a family to feed and only has access to disability payments if he concedes to a diagnosis of depression and anxiety.  Because insurance companies and their doctors are convinced that Lyme is a disease that is 'hard to get and easy to treat', this unfortunate man continues to suffer from Lyme without access to treatment.  Although he has a positive blood test confirming that he suffers from Lyme, he has been told in no uncertain terms that he does not have Lyme and he must discontinue speaking of it's existence or seeking treatment for it.  If he does indeed seek treatment for Lyme (even out-of-pocket treatment), the payments that are keeping his family clothed, housed and fed will discontinue.  This man is in need of IV antibiotics to kill the Lyme bacteria, as oral antibiotics have so far been ineffective.  Having to get treatment 'under the radar' means that he will not have access through his family doctor to CCAC nursing care for his picc line dressing changes, flushes and IV lines.  As he needs the treatment, we have sought the help of local nurses to gather extra hospital supplies so that he can receive the treatment he needs to have a chance to possibly regain his health.  I also have gathered extra supplies over the past year which will be passed on to him.
This is the kind of complications that many people suffering with Lyme Disease experience here in Canada.  I am one of the fortunate ones.  Being a woman, I am not the breadwinner of this family.  Being part of a community of believers, I have access to funds for out-of-pocket treatment and home care for myself and my family.  I am also able to speak openly about the affects of this disease, as I am not constrained by politics, nor am I relying on the whims of a health insurance company.  With my health improving so much recently, God has now placed me in a position to appeal to the government to make changes to our healthcare system.  I have limited energy and resources to make a difference, but I will continue to do what I can.  I met with my local MPP recently to help him understand the complications that those of us with Lyme in Ontario face.  Those of us who are physically and mentally able need to appeal to our local government and health ministry to make the necessary changes to allow for adequate treatment and fund new research before the Lyme epidemic expands further.
In this past month, I have been approached by three different people who suspect they may have Lyme and are wondering how to go about getting accurate testing and diagnosis.  I will write a post about the steps to take if you think you may be infected at a later date....

 Round Table Meeting with MPPs Tim Hudak and Toby Barrett - Take a bite out of Lyme Challenge
Below is the letter that I sent to the Minister of Health, as well as my local MPP.  It will help you understand some of the issues that Lyme patients face and why we currently consider Lyme a political disease:

Dear Dr Eric Hoskins
Minister of Health and Long Term Care,
I am writing to you in regards to my personal experience with contracting Lyme disease and need for out-of-country medical care to treat it.  I am hoping to give a voice to the many patients like me who have suffered as a result of a healthcare system that is ineffective in recognizing and treating late stage Lyme disease.
Prior to being diagnosed with Lyme disease I was vaguely aware of its existence.  I was not aware of the symptoms to watch for, especially late stage symptoms.  Although I had knowledge of how to remove a tick I was unaware of the risk of infection, the low percentage of people who actually notice a bull’s eye rash or the long-term disability that could result.  

Formerly fit, healthy, athletic and energetic, I was active in the community and loved to challenge myself with team and extreme sports.  At no point in my life do I remember having a tick bite or a bulls-eye rash.  However, I loved the outdoors and spent a lot of time in nature, both in my native Australia and here in Canada.  We also adopted a pet dog from a shelter and were not aware enough to check him for potential infection.

In June 2011, after giving birth to my son at the age of 27, my body collapsed physically and I became severely weak in my limb-girdle joints and muscles.  To my horror I and was unable to weight bear through my hips.  My body would simply drop me like a dead weight.  I was sent home half a week later in a wheelchair, with minimal homecare support and a newborn son, 1 year-old daughter and 3 year-old son to somehow take care of. 

My joint hypermobility increased and my muscles refused to respond to daily physiotherapy.  The physiotherapist assigned to my home signed off after a few weeks as I was not making any physical progress….. No amount of determination could overcome the fatigue in my muscles and joints.  It seemed the more I pushed, the quicker I fatigued.  I would wheel around my home on an office chair, sit to shower and crawl across the carpet.  With three very young children to take care of, I was given no governmental aide either financially or physically and relied on family/friends/church for the care my family and I needed.

For three years my family doctor sent me to various specialists.  I saw a Physiatrist, 2 Rheumatologists, 3 Neurologists, Neuro-muscular specialist, Physiotherapists (out of pocket), Chiropractor (out of pocket), Naturopath (out of pocket), Bowen Therapist (out of pocket), Pain specialist, Cardiologist, Sleep specialist and Geneticist.

Tests done over these three years included: MRI’s – brain, spine, hips, Pelvic X-rays, EMG muscle stimulation, nerve conduction studies, muscle biopsy of thigh muscle, many sets of bloodwork, sleep study, vision testing, chest ultrasound. 
My symptoms included muscle weakness – particularly limb-girdle, severe fatigue, increased joint hypermobility, deep muscle and joint pain, muscle twitching, low stamina/endurance, swollen knees, severe insomnia, trouble concentrating, difficulty with thought processing, air hunger, chest heaviness, dizziness, night sweats, forgetfulness.
In desperation, during a particularly bad bout, we headed to Toronto General Hospital to see if I could gain access to resources and answers from the team of specialists there.  Due to the severity of my symptoms I was admitted but after routine bloodwork failed to show anything, I was sent home and encouraged to ‘follow the advice of the physiotherapy team’.

I was suspected to have:  Myasthenia Gravis, Fibromyalgia and Ehlers-Danlos Hypermobility Syndrome.  Although my symptoms overlap these diseases, I never quite fit any of these fully so I am still technically undiagnosed in Canada.

In 2012 I saw a Canadian Naturopath who suspected that I was potentially suffering from Lyme disease.  At that time I convinced my family doctor to do the standard ELISA test which is the initial screening test done in Canada.  It came back negative.  As I was unaware of the inaccuracy of the testing, both my family doctor and I were content that I could not have Lyme disease. 
In May 2014, through reading a MacLean’s article on Lyme disease in Canada, I was made aware of many more of the symptoms of Lyme disease, many of which fit mine.  The article also informed of the lack of sensitivity of the ELISA test and advised of testing in USA using the Western Blot method.  Currently the Western Blot is the second test used in Canada and the ELISA is the initial screen test, so if an ELISA test is negative the Western Blot will not be ordered.  As my symptoms fit so many of those with Lyme disease, I paid to have bloodwork sent to IGeneX lab in California.  My western blot test came back positive for Lyme disease, although still not according to Canadian standards.  The CDC and the IGeneX lab have different criteria for issuing a positive result.  I was negative by CDC standards, positive according to IGeneX criteria.  Even without bloodwork, Lyme disease is supposed to be a clinical diagnosis.  Bloodwork may be helpful in diagnosis but Lyme disease is supposed to be based on a clinical diagnosis.  Lyme is difficult to find in bloodwork because the body often does not mount an immune response as the spirochete are very adept at hiding in the immune system. 

By this point I was struggling with severe air hunger and becoming increasingly weak.  My family doctor had me scheduled to get a lung function test done next.  We were still chasing symptoms…. She said she couldn’t read the results of my IGeneX lab work but was ‘pretty sure it was negative’.  She admitted that I probably knew more about Lyme disease than she did but yet she was convinced that I did not have Lyme.  In her opinion I was still suffering from some unknown, un-diagnosable, extremely rare condition….She said I could possibly see an infectious disease specialist but that it would take many months for that appointment also.  By now we understood how the system in Canada worked.  We did not have time to wait around as I was going downhill fast…

 I had one more referral to a pain specialist in London that I decided to keep.  I decided not to mention that we suspected I was suffering from Lyme Disease and see what this doctor would come up with.  After examination I was sent back to the waiting room and given ‘one more form’ to fill out.  It was a clinical diagnostic questionnaire for Lyme Disease.  I scored very high and the doctor advised us to seek treatment in the States as he was unable because of government restrictions to help us.  We were told that Canada is about ten years behind the States in treating Lyme Disease so not to waste our time in Canada.

At this point we realized that our only hope of diagnosis and treatment was to seek out a Lyme literate specialist outside of Canada.  My bloodwork, coupled with my symptoms bore testament to the fact that Lyme disease was the cause of my health issues.  I was diagnosed with Lyme and clinically co-infections Bartonella and Babesia.  By this time the disease was in a late stage and would require aggressive, long-term treatment to eradicate.  I began IV and oral antibiotic treatment immediately in America, crossing the border and paying out-of pocket for the chance to return to life and living again.
The complication with having very few doctors who are daring enough to risk their medical licenses to treat Lyme Disease is that there is a market for doctors who wish to exploit patients with Lyme Disease.  After a few months, with the bills piling up at a ridiculous rate, we realized that the doctor we were seeing (although knowledgeable of Lyme and co-infections) was charging us much far more than she should have for treatment.  I was given a reputable referral to a new Lyme Literate Doctor (also in America) and have continued successful treatment with her since September 2014.
We have spent over $100,000 out of pocket on treatment for this disease over the past seven months.  We receive financial aid from family, friends and our church community.  Without their help this disease would have already devastated us financially.  There are many people suffering from Lyme disease that cannot afford the treatment that I am so fortunate to receive.  I have made great improvement and am able to walk again but am still currently undergoing aggressive treatment as I have a long way to go to become fully functioning again. 

My family doctor did not support a Lyme disease diagnosis.  She preferred to think of it as a psychological disorder because she had exhausted her resources and nothing had shown up in the testing I had done here in Canada.  We have had to leave her care as she will not support me during my treatment for Lyme.  Without her support I was not able to access weekly bloodwork that was needed during treatment, CCAC nursing care to take care of my picc line dressings or the intravenous equipment to administer my daily medications. 

The Canadian Health Care System has failed us. We saw many taxpayer dollars wasted on unnecessary blood-work, expensive tests, doctor and specialist visits.  We waited in hope for months between each specialist appointment, only to be disappointed when my symptoms did not fit the mold. We were certain that if all of the specialists put their heads together they would be able to figure out my apparently one-of-a-kind case.  It is now apparent that my symptoms are actually very common for one suffering from Lyme disease.  Since beginning treatment, I have been back to see some of the specialists that saw me at my physical worst.  I have been laughed at and was told in no uncertain terms by my neurologist that the diagnosis of Lyme and treatment I am currently receiving is as ridiculous as it is harmful to my body.  In her opinion the huge strides I have made in physical strength since then can apparently be attributed to the placebo effect.
Although treatment is certainly no walk in the park and I am aware of the side-effects and damage that long-term antibiotics can do to my body, I am satisfied that this aggressive treatment is necessary to destroy the disease.  I am balancing the destructive effects of treatment with supplements, probiotics and a strict diet to keep my body as healthy as possible.  I am working hard to stay positive and focused during treatment. 

The negative effects of treatment are outweighed by the abilities that I am regaining.  I am hopeful that there will be a better cure for Lyme disease than aggressive antibiotics in the future.  I am also hopeful that those of us who suffer with Lyme disease will be supported by the government and healthcare professionals here in Canada so that we are not forced to go to America for treatment.

I would like to see the following changes to our government and healthcare system in regards to lyme disease diagnosis and treatment:
·         Shorter wait times for specialists. It took three years for me to find out that I didn’t have anything recognizable to Canadian doctors.
·         Better communication between healthcare professionals – accurate information sharing would save time, money and frustration and get results in a timely manner.
·         OHIP coverage for things like physiotherapy/naturopath/Lyme specialists.  These costs should not be shouldered by the patient.
·         Financial or physical assistance to take care of the dependents of those disabled and debilitated by lyme disease. 
·         Education for doctors and specialists who should be the first to pick up the signs of lyme disease in their patients – especially late stage symptoms.
·         More scientific research to find an accurate diagnostic tool and possibly a cure for lyme disease.
·         Stop threatening the careers of those who wish to diagnose and treat lyme disease.  Give the doctors and patients the power to do whatever is necessary to treat a disease that is devastating in its effects on the lives of patients and their loved ones.
In my opinion, warning people to watch for flu-like symptoms and a bulls-eye rash is not enough.  Bulls-eye rashes are reported in less than half of people infected with Lyme disease.  Flu-like symptoms are ignored by most folk who lead a regular life and are not hypochondriac in nature.  These symptoms are only a beginning of the many that follow – those who miss these early symptoms or perhaps do not get the early symptoms are not even aware there are any others to watch for.  Those of us with late stage Lyme have even further difficulty getting a diagnosis and treatment because the healthcare professionals in Ontario are not aware of the late stage symptoms to watch for, or the fact that many of these symptoms overlap other diseases! 
Please consider my voice as one who is experiencing first-hand the horrors of this disease, horrors that are amplified by the lack of support from a country which has ample resources to recognize and adequately treat what is becoming an increasing epidemic in Canada.
Roze R
An online campaign for Lyme Ontario