Monday, May 11, 2015

One of our Favourite Songs!

"And my God will supply every need of yours according to his riches in glory in Christ Jesus." 
Phil 4:19

Due to worsening neurological symptoms for me this past week, our children were unable to perform in the John Calvin School fundraiser concert on Saturday.  We recorded the song tonight for our family and friends (note - the pj's and the yawns...)  We have loved this song throughout our journey with Lyme disease and have found it very comforting as it continues to point us upwards for strength each day anew.  The constraints of a disease are no match for our freedom in Christ and it is good for the soul to be reminded of that! Having sung and listened to this song over and over on youtube during the past number of years, it was a natural favourite for our children to perform. Here is the link:
https://www.youtube.com/watch?v=x95Y9Y2KrtQ&feature=youtu.be

My brain fatigues very quickly under stress, in busy or stimulating environments.  I have trouble with my vision and focus.  It feels like a similar type of fatigue that I experienced physically so I am not frightened by it.  I am confident that, with the Lords blessing, these symptoms will also be resolved in due time with treatment.  This week I went to Toronto to Queen's Park for a Lyme rally, attended open house for my children at their school, did an interview for the local paper as well as keeping my regular scheduled health appointments. The affect of these extra activities seemed to accumulate on my brain and I had a constant headache and exhaustion by the end of the week.  With a few days rest and quiet, I have been working on detoxifying my body and have had a better day today.

I was excited about the possibility of being well enough to sing with the children, as this was something I thought would no longer be possible before treatment.  While we are disappointed that we couldn't follow through on performing together, we are excited that the possibility was even entertained, as this is a sign of positive progress.

"Many are the plans of a man's mind, but it is the purpose of the Lord that will stand" 
Proverbs 19:21

Queen's Park - Lyme Awareness


With a group of wonderful ladies from our Smithville congregation, I attended question period at Queen's Park in Toronto this week.  The purpose of this trip was to show our support in numbers by wearing lime green while sitting in the gallery during question period.  Mike Mantha from the NDP asked the Health Minister, Eric Hoskins, what was being done to fulfill his promise (made 6 months ago) to make changes to the guidelines for testing, diagnosis and treatment of Lyme Disease in Ontario.
After question period, we gathered on the grass to take part in a 'take a bite out of Lyme' challenge (hence the limes in our mouths).

"Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, unto Him be glory in the church by Christ Jesus throughout all ages, world without end. Amen."  Ephesians 3:20,21

 The group of us with supportive MPP's

Here is a link to the official press release taken the same day for Lyme Awareness

 Taking the 'Bite out of Lyme Challenge' with Mike Mantha


Below is a link to the question period. If you would like to jump to the specific questions and answers regarding Lyme Disease: Toby Barrett speaks at 34:50mins, Mike Mantha speaks at 49:40mins. Eric Hoskins is the Health Minister and responds to both questions. He is the one to whom we addressed our patient and caregiver statements. Thank-you everyone for supporting us as we continue to advocate for better testing, diagnosis and treatment of Lyme Disease!









    Damon helped me tie ribbons in Smithville for Lyme awareness

Thursday, April 30, 2015

MAY IS LYME DISEASE AWARENESS MONTH!



LYME DISEASE IN ONTARIO
TICK REMOVAL
  •  If bitten by a tick – see your family physician to have it carefully removed with fine-pointed tweezers (most tweezers are too blunt on the tips and will cause regurgitation). Place tweezers snugly against skin, with a firm grip on tick’s head, gently pull it straight out with steady pressure.  Apply an antiseptic and wash your hands.
  •  Make a note of date, location on body, geographic location.  Take a picture, especially if a rash is present or appears.  Place tick in a vial with a piece of moist Kleenex or paper towel.  Submit tick to local public health unit for testing.
 SYMPTOMS
  • Lyme Disease has early and late stages; patients may exhibit symptoms from one or both.  Late stages of infection are much more difficult to diagnose and can mimic other illnesses.  Children’s symptoms can vary from adults and may include behavioural changes, declining school performance, fatigue, headache, forgetfulness, comlex partial seizures, depression and may be misdiagnosed with primary ADHD.  For a full list of symptoms please visit www.lymeontario.com.
  • Only 30-50% of people infected with the Borrelia Burgdorferi bacteria (Lyme) will get a rash of any kind.  Of these only 9% will get a classic bulls-eye rash.  Only 10% of children present with a rash of any kind.
DIAGNOSIS
  • Lyme disease is a rapidly spreading illness that is difficult to test for and many cases are missed.  Here in Canada the ELISA method of testing is used to screen for infection.  The ELISA has an accuracy of 4%-65%.   The Western Blot method  (through IGENEX in California) is a more accurate test. However, many people who are actually infected do not mount an antibody response so testing will be negative.
  • Diagnosis of Lyme Disease should be CLINICAL
  • Co-infections almost always accompany the Lyme (Borrelia) bacteria. It is important to identify and treat these co-infections because, if left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme Disease
 TREATMENT
  • A bulls-eye rash is in itself conclusive evidence of a Lyme infection and must be treated with 4 weeks oral antibiotics to prevent re-emergence of the infection months or years later. 
  • Family physicians in Canada will only treat with a standard 2 week antibiotic course if Lyme is suspected or confirmed.  It is up to the patient or caregiver to INSIST on a full 4 week antibiotic treatment course. 
  • Lyme Disease can remain dormant in the body for many years, until a stressor or immune compromise causes it to become active and the patient will then manifest symptoms.  At this point it is much more difficult to treat.
  • You do not need to visit an endemic area to encounter ticks! Migrating birds disperse various tick species Canada-wide.
 FURTHER INFORMATION
  • For additional accurate and up-to-date information on ticks and Lyme Disease please visit
LYME ONTARIO - www.lymeontario.com
CANADIAN LYME DISEASE FOUNDATION - www.canlyme.com
INTERNATIONAL LYME AND ASSOCIATED DISEASE SOCIETY - www.ilads.org

Sunday, April 19, 2015

Thank-you Lord For A Good Week!

I realize it has been awhile since I posted last.  After a good week, where I have experienced a return in some of my spark, energy and abilities, I am ready to update again.... There are times lately when I feel very 'normal' and it gives me great encouragement that one day, Lord willing, I will return to full health again!

NEUROLOGICAL DIFFICULTIES
For many weeks before this past one, I have been very much struggling with neurological difficulties. I have had an increase in trouble with my vision especially over the past month, and an inability to focus adequately.  My brain and my eyesight seemed not to align, so that a busy view (a crowded room, a department store, cars on the highway) exhausts my brain.  I would glance around without really focusing on anyone or anything.  In such a visually stimulating environment, I arrived very quickly at a point where I needed to shut my eyes and nap.  This poses some difficulties in common areas of my life - I have been unable to process in my mind where to start at the grocery store, or what I even need!  I have also been unable to see the minister clearly in church, and the sea of faces makes me dizzy.

Do you recall one of the first games to come out when computers were introduced? A disk bounced around the four corners of the screen, and the job of the player was to prevent the disc from touching the bottom of the screen by moving a float back and forth across the base.  I often feel like that disk is bouncing around in the same manner inside of my brain - it constantly whizzes back and forth without giving me a moment of true rest.
...Brekky while running my IV on the road to Plattsburgh

BABESIA/PROTOZOAN INFECTIONS
According to Dr McShane, these symptoms are caused by the co-infections that accompany Lyme Disease, in this case particularly the parasite Babesia, (a protozoan infection) which is apparently still active in my brain.  Thanks to this parasite, my mind is also unable to shut down during the night, which is why I am awake every hour or two and have trouble returning to sleep.  It is also the reason why my attempts to address adrenal fatigue have been so far unsuccessful - I have too much active infection remaining which is interfering with the possibility of adrenal recovery.  I have since discontinued my work with Dr Lam (Adrenal specialist), until I am further along in treatment.  Our goal since my last appointment was to wait out this flare-up of symptoms while upping my antibiotic dose so that I will be strong enough within 6 weeks to begin a treatment that will address this protozoan infection more directly.  Specifically the new treatment protocol will aim to break up the bio-film that this organism creates (using the fats ingested in my diet) to protect itself from my immune system.

PROGRESS
The good news is - we have made progress this past week!  The changes that may have contributed to my increase in energy and abilities:

  1.  I am now receiving double dose of the IV antibiotic Clindamycin - a 600mg dose twice a day.  
  2. I have also been receiving Ozone therapy 2X weekly from Dr Um at Naturomedic in St Catharines.
  3. Time of year - We are pulling through early spring, which in addition to the late fall, has in the past number of years for me been a more active time of year for the Borrelia bacteria.
  4. I have begun to implement a low-fat, plant-based diet.  I am slowly changing my diet to prepare for the new treatment protocol, which will require me to be 100% fat free and eating only plant-based foods.
A Typical Green Lunch

OZONE THERAPY 
Info shared from http://www.chroniclymedisease.com/ozone-oxygen-lyme-disease

Ozone mitigates the negative effects Lyme Disease has on the body. It re-establishes healthy bio-terrain and neutralizes neurotoxins. It also combats the acidic condition created by Lyme Disease because it is alkalizing.
Ozone provides:
1. Able to kill spirochetes as well as ANY other pathogenic microbe – virus, bacterial, yeast, mycoplasma, parasite, prion, etc., contacted. In fact, is ATTRACTED to them by polarity.
2. Able to destroy infected cells, as well as mutated, malignant cells.
3. A powerful treatment for Candida.
4. An effective adjunct treatment for heavy metal chelation.
5. Pathogens are unable to build a resistance to it.
6. An effective treatment for brain, eyes, ear areas (using ozone applied locally to those areas).
7. As a by-product, provides bio-available oxygen to cells, to start a cascade of metabolic actions toward healing and rejuvenation and galvanizing of the immune system. Ozone breaks down into oxygen and singlet oxygen inside the body.
8. As a by-product, oxidizes toxins, including neurotoxins – THUS MARKEDLY REDUCING HERXES EVEN WHILE KILLING PATHOGENS.
9. As a by-product, scavenges free radicals and helps reverse the extensive free radical damage from a severe systemic infection like Lyme Disease.
10. The oxygenation provides for a more energized state.
11. Helps move pH toward alkaline from the acidic pH induced by chronic disease.
12. Potentiates other remedies, supplements, protocols.
13. Is natural, does not have side-effects, toxicity, or cumulative effects.





Duct cleaning in our home resulted in better air quality - I noticed that I struggled to breathe every time the furnace turned on.  As a result, our house was kept very cool over the winter.  Cleaning the ducts has proved to be a perfect solution!





A note pinned in McShane's office informs that a EM rash, although only present in 50% of people infected with Lyme, is diagnostic of Lyme disease.  Be AWARE!!  Lyme Disease is TREATABLE when caught early....







GOD CONTINUES TO CARRY US


Serenity Prayer
God grant me the serenity
to accept the things I cannot change; 
courage to change the things I can; 
and wisdom to know the difference.

Living one day at a time; 
enjoying one moment at a time; 
accepting hardships as the pathway to peace; 
taking, as He did, this sinful world
as it is, not as I would have it; 
trusting that He will make all things right
if I surrender to His Will; 
that I may be reasonably happy in this life
and supremely happy with Him
forever in the next. 
Amen.
       
Alanah 'fishing'
Climbing trees at the local park