Monday, March 23, 2015

Ride For Lyme

I want to share with you all an exciting event that is happening between May and June 2015!!

Daniel Coroso and Tanner Cookson from St Catharines are embarking on an 8,000km bicycle journey across Canada to raise awareness and funding for Lyme Disease in Canada.  Because of the controversies surrounding chronic/late stage Lyme and the impossibility of receiving treatment and diagnosis here in Canada, media attention, public awareness and doctor education is very important.  Funding for research to find a definitive diagnostic tool and better treatment options is badly needed as our government has so far chosen to put very few resources into anything Lyme related.  What these men aim to do in honour of a friend who is suffering from Lyme is very admirable, and appears to be well thought out and structured.  I wish them every success and, Lord willing, an opportunity to change the prospects of others who will be infected with what is currently one of the fastest growing vector born diseases here in Canada.

It would be wonderful for all of us who are touched by Lyme Disease whether directly or indirectly to support this endeavor!  If you would like to sponsor this ride, raise awareness or hold a fundraising event please check out the details on their website:

 Tanner and Daniel (used with permission)

From the Ride For Lyme blog:
We are two men driven by the opportunity to live a dream and change the lives of Canadians who suffer with Lyme Disease. LD is a debilitating disease that the Canadian Health Department does not recognize, diagnose, or provide treatment for. The thousands of Canadians infected are misdiagnosed, denied the proper treatment, and are ultimately forced to self-diagnose or go out of country and pay hundreds of thousands of dollars for proper care. Our mission is to change that.

The Adelaine Project is an 8,000 km bicycle journey across Canada through which we will bring attention to Lyme Disease and those suffering from it. At sunrise on May 12 of this year, we will depart on our bicycles from Victoria, British Columbia with the goal of reaching St. John’s, Newfoundland by July 7. Along the way, we will be stopping in each province at local news stations, schools, and events to meet with doctors, politicians, victims and the general public to promote our mission.

We proudly dedicate our efforts in the honour of our dear friend and inspiration,  Adelaine Nohara.

Addressing Adrenal Fatigue

I have had three rough weeks - continual stomach pain and severe gas forced me to stop my oral medication and supplements for a week while I gave my digestive system a break.  During this time I worked at encouraging my stomach to heal with easy to digest meals and providing it with only soothing supplements, enzymes and probiotics.  At this point I have been able to successfully wean myself back on the medications that I was forced to stop and so we carry on....  I have lost some ground physically but it is good to be back on track again.  We had help with meals and childcare during March break - thanks so much to all of those who prepared meals or took our children for us!
We had been planning to go to Disney on Ice for quite some time so, although I was having difficulty getting around due to increased pain and muscle cramping on Saturday we took the kids to see the show.  In the end, for me it was a great mental break and eased some tension in my brain.  It was good to get out of treatment routine for a bit and see the kids enjoying being kids!  We made it work - the escalator was broken and I was physically unable to do the stairs so Eric gave me a piggy back - brought back memories of getting around before treatment.... I am so thankful to be walking again - even if my endurance is poor!
Disney On Ice!!

Being back on meds has brought an increase in some of my Lyme symptoms again (more muscle pain/cramping in my legs, neck and back, increased weakness, dizzyness).  We are attributing this to a 'herx' and working to flush the toxins out.  I am keeping a journal now to help me identify what things are contributing to the rise and fall of certain symptoms.  So far we have concluded that excess cauliflower appears to be problematic for my intestines.  We have also deducted that I am not naturally flushing toxins out of my body very well on my own as my symptoms increase in severity when I discontinue activated charcoal.  I also appear to have trouble with breathing every time our furnace turns on.  We think this may be related to our heating ducts (possible mold/water damage in our basement) which could also be preventing me from moving forward with healing so we will address what to do about mold toxicity issues when we visit my LLMD again next week.  It is quite common for those of us with Lyme Disease to be sensitive to mold.

Tyson making me a 'bootiful queen' with 'hair pretties'

My Salivary Cortisol test results are in.  As suspected, I have low cortisol, low insulin and low SIgA. These are probably a result of chronic stress on my system and confirm that my body is in a state of Chronic Adrenal Fatigue.  In addition to these results, I was found to have gluten antibodies.  Having low SIgA means that my gut is not very capable of making antibodies in the first place, and as I have been 100% gluten free for over 8 months now, this is a very puzzling result.  We have bought me a separate toaster so that we do not cross contaminate with other gluten products in our household and have become more diligent about avoiding trace gluten in my diet.

I have begun an new protocol from Dr Lam to help with my Adrenal Fatigue.  Unfortunately this consists of more work and incorporating more things into my already overwhelmed daily schedule as I continue with my restricted diet, IV antibiotics, oral supplements and medications, enzymes and probiotics...We are finding a way to make it work...

Some of the new challenges:

  1. Flax Seed Slime - made from boiled flax seed - helps with hormone regulation
  2. H2Nano in Distilled Water - a gentle detox 
  3. Bone Broth - alternate between Chicken and Beef - 4 cups daily - nutrient rich, bone broth is a great way to provide direct nourishment and better absorption to a stomach that struggles with digestion
  4. Oil Pulling - swishing olive oil my mouth for 12 minutes each morning - pulls toxins out of the body.
  5. Adrenal Breathing Exercises - provide oxygen to cells and release tension from body and mind
  6. Diet  - I am on the right track with eliminating gluten, dairy, sugars, nightshade vegetables, GMO products, starches, grains.  A protein rich snack (nuts/chicken/eggs) is important before bed as well as upon night time awakenings to help keep cortisol levels more stable and prevent blood sugar dropping.
  7. Rest - No more exercising for now - heart rate must not increase during exercise so short walks or yoga is ok as tolerated.  Time to listen to the body!!
  8. Eat! - As often as needed - do not deprive the body.  For me that is every 2 hours at the moment due to a quick metabolism as well as poor digestion and absorption of nutrients. 
  9. Decrease Stress - I am seeking more help with the children as needed, ignoring work in the home that is not absolutely necessary and that I do not have sufficient energy to complete.  I am also spending more time in Biblical study and devotion to help me keep life in perspective and receive strength and encouragement to continue doing what needs to be done to care for my family while participating in treatment to the best of my ability.  I have realized that I need to work harder on 'letting go' of things that are out of my control and leaving them to God.  A continuing struggle for me and much against my human nature...I tend to panic a bit when looking ahead (also as Eric returns to work after being home much during the winter months)  This is why the Lord urges us to take ONE DAY AT A TIME!!“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." Matt 6:34
  10. Decrease screen time - TV and computer - especially before bed.  I print off material that I am interested in reading as much as possible.
  11. Soft Hyperbaric Chamber - 2-3X weekly - supplies oxygen to the muscle and tissue cells in a form that the body is able to absorb more rapidly.
  12. Infrared Sauna - 3X weekly on alternating days to Hyperbaric Chamber.  No more than 10mins in Sauna after body begins to sweat or the body will be drained and eliminated toxins will be reabsorbed.
  13. Detox Baths - Epsom salts and Hydrogen Peroxide - No more than 20 minutes at a time to prevent toxin re-absorption.  Water must be warm but not too hot.  Approx. 3-4 baths per week.
I have received a whole bunch of new supplements from Dr Lam and will be incorporating them into my routine as well over the next number of weeks.

I will continue to share this journey as much as possible in hope that it will help someone else searching for solutions to this complicated disease. I know it is different for each person struggling with the multi-system effects of Lyme as Lyme Disease reacts differently with individual body chemistry.  However, many of the root causes of our symptoms are the same and need to be addressed.  Whatever the outcome after all of this, may God give us the grace to be content with His will...

 I cried out to God for help; I cried out to God to hear me.
 When I was in distress, I sought the Lord; 
at night I stretched out untiring hands and my soul refused to be comforted.
 I remembered you, O God, and I groaned; I mused, and my spirit grew faint. 
You kept my eyes from closing; I was too troubled to speak.
 I thought about the former days, the years of long ago;
 I remembered my songs in the night. My heart mused and my spirit inquired:
 "Will the Lord reject forever? Will he never show his favor again?
 Has his unfailing love vanished forever? Has his promise failed for all time?
 Has God forgotten to be merciful? Has he in anger withheld his compassion?
 Then I thought, "To this I will appeal: the years of the right hand of the Most High."
 I will remember the deeds of the LORD; yes, I will remember your miracles of long ago.
 I will meditate on all your works and consider all your mighty deeds.
 Your ways, O God, are holy. What god is so great as our God?
 You are the God who performs miracles; you display your power among the peoples.
 With your mighty arm you redeemed your people, the descendants of Jacob and Joseph.
 The waters saw you, O God, the waters saw you and writhed; the very depths were convulsed.
 The clouds poured down water, the skies resounded with thunder; 
your arrows flashed back and forth.
 Your thunder was heard in the whirlwind, your lightning lit up the world; 
the earth trembled and quaked.
Your path led through the sea, your way through the mighty waters, 
though your footprints were not seen.
You led your people like a flock by the hand of Moses and Aaron.

Tuesday, March 10, 2015

The Missing Puzzle Piece - Adrenal Fatigue

 Nurse Alanah - School Career Day!

I am now well into my ninth month of aggressive antibiotic Lyme treatment.  I have seen significant progress in the eradication of many of my Lyme related symptoms.  Night sweats, muscle twitching, air hunger, memory loss/forgetfulness, joint stability and overall strength have improved.  It seems we are winning the battle against these intruders!  
So it has been very puzzling why I am not regaining endurance and stamina.  I am constantly exhausted, fatiguing quickly, still suffering with insomnia and non-restorative sleep and have also been dealing with dizziness, a feeling of being constantly wired but tired, heart palpitations, very cold hands and feet, below normal body temperature, consistently low blood pressure and incessant hunger (I MUST eat every 1-2hrs).  We were determined at our last LLMD appointment in Plattsburgh to address these lingering issues that I was becoming more and more convinced were not specifically Lyme related.

Dr McShane ordered a salivary cortisol test and thyroid bloodwork to determine if my adrenal function is compromised.  We are awaiting the cortisol test results yet but the bloodwork showed that I have hypothyroidism - apparently stemming from my pituitary gland.  In this case, hypothyroidism would be secondary to Lyme Disease, and caused by the disease itself, as well as the effects of treatment and constant physical and mental stress.  My adrenal function has crashed - triggering a condition called adrenal fatigue.  My body has been functioning in a state of constant high alert for the past four years and is no longer able to produce the amount of energy needed to repair itself or sustain even basic daily function.  

Looking back at my treatment this past year, I noticed that I regained function very quickly when the antibiotics began killing the Lyme bacteria.  My energy and function returned at a rapid rate initially.  Unfortunately, as the doctor continued to add medications and supplements, my body was unable to process the sheer load of medications, supplements, dietary changes, strict daily routines and stress of treatment both physically and mentally and I began going downhill.  In alarm, my Lyme doctor at that time (Dr P.) responded by adding more supplements and medications, changing my treatment protocol weekly and creating further stress on my poor immune system which (understandably) can only handle so much.  My body responded with periods of crashes and recoveries (a familiar pattern for me these past few years) until I reached this point of adrenal fatigue from which my system seems unable to recover.  

These past few weeks have been difficult - trying to decide whether or not to stop or slow treatment.  The pros? My body will appreciate a rest from the heavy treatment regime and I could focus on rebuilding my immune system.  The risk with stopping treatment? Because my immune system is so compromised it will not be able to fight against the remaining Lyme bacteria, and they will have an opportunity to reproduce while my body is weak.  Somehow we need to regain my adrenal function and rebuild my immune system while continuing to keep the Lyme bacteria at bay. 

Our new plan: Rest, recover, repair immune function with natural therapies, supplements, decreasing stress load on my body and brain and if absolutely necessary thyroid medication temporarily.   The balance between giving my body the tools to repair itself and not causing it to overstimulate beyond it's ability to recover is a very delicate one.  I have just begun working with a specialist in adrenal fatigue (Dr Lam - to tailor a program that will slowly work to rebuild my immune system one slow and delicate step at a time.  This will take many months to accomplish but the good news is it is possible!  Once my adrenal function is regained, my immune system rebuilt and some strength and stamina have returned, we will work towards decreasing my antibiotic load with the intent that my immune system will be strong enough to keep the Lyme bacteria from reproducing.  At this point I should be able to return to a new normal level of functioning, which will be adequate for daily life but will probably not involve extreme or team sports...  I will always need to pace myself, a concept that I very much struggle with but am realizing is necessary if I am to ever have hope of a complete recovery.

With my Type A personality *wink* I love to follow a plan so for me working with two protocols (Lyme and Adrenal Fatigue) is much more manageable than pushing through without clear direction or guidelines and knowing that a mysterious missing puzzle piece is holding me back from recovery.....  Lyme Disease - multi-systemic and multi-complicated! 

A puzzle for you: Are Type B personality types susceptible to contract Lyme or suffer from Adrenal fatigue?  One person's character strength may be the very source of struggle for another... hmmm...
...A very special Valentines Day! xox