Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts

Wednesday, February 17, 2016

What to do when you suspect Lyme

There have been a number of people approach me lately with suspicions that they or their loved one may be suffering from un-diagnosed Lyme Disease.
I decided to write a post on the steps to take if you suspect that someone you know may have contracted Lyme.

It is important to catch Lyme Disease in the earliest stages, within the first few weeks of infection. Often Lyme is missed at this stage because it so much mimics a regular flu and less than 50% of those infected with Lyme even recall a tick bite, let alone a rash!  There is much mis-information from public health agencies regarding infection, which further limits the number of people seeking medical help on suspicion of infection.  Only certain species of ticks are being tested for Lyme, although it is very likely that all ticks carry the infection, and it is even suspected that mosquitoes may also transmit the disease.

It is advisable, if you have been bitten by a tick and it is not easily brushed off of your body (meaning that it has been feeding on you for a while) and you experience a rash of any kind or feel unwell, that you contact your family doctor and request (or demand if they refuse your request) three-four weeks of oral antibiotics (usually Doxycycline).  Although the doctor may think this excessive, the alternative is to treat with a two week course of antibiotics (which is not sufficient to completely eradicate the bacteria at this stage) and risk being struck-down at a later date with late stage Lyme Disease.  If you have a strong immune system, the Lyme bacteria may remain dormant in your body for many years after initial infection.  The symptoms of late stage Lyme Disease may come on gradually or suddenly after an immune system compromise (illness, accident, stress).  It is much harder to diagnose at this stage, and much more difficult to treat.  It consists of much more severe symptoms and, although it may go into remission, is not considered curable.

A BULLS-EYE RASH IN ITSELF IS CONCLUSIVE OF INFECTION WITH LYME DISEASE.  IF YOU OR SOMEONE YOU LOVE HAS A RASH AFTER A TICK BITE, OR A POSSIBLE TICK BITE YOU MUST RECEIVE 3-4 WEEKS OF ANTIBIOTIC TREATMENT IMMEDIATELY.

You must also be aware that the testing method currently relied in Canada as an initial screening for Lyme Disease is a blood test that uses the ELISA method.  According to the International Lyme and Associated Diseases Society (ILADS) "The elisa screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity". - See more at: http://www.ilads.org/lyme/about-lyme.php#sthash.jSJwyuSi.dpuf


Lyme disease has been called the great imitator.  It should always be considered as an alternative diagnosis of Fibromyalgia, Chronic Fatigue Syndrome as well as rheumatologic and neurologic conditions and any other difficult-to-diagnose multi-system illness.

So what to do if you have the symptoms of late stage Lyme Disease?

HOROWITZ QUESTIONAIRE  
Fill out the following quiz to assess the likelihood of Lyme:
BLOODWORK 
If you score over 45, it would be wise to get bloodwork done at the IgeneX lab in California, as they specialize in Lyme testing and have developed tests that are more accurate than anything that is done in Canada.
http://www.igenex.com/Website/

You will have to fill out the bloodwork request form, and get your family doctor to sign it:
Then find a local lab to take the bloodwork (following the instructions on the IgeneX website for the specific tests that you are ordering)  I recommend that you do the Complete Lyme Panel – which is #6050

LYME LITERATE DOCTOR
If you scored high on the Horowitz questionnaire, you may like to consider beginning the process of finding a Lyme Literate Medical professional in your area.  When choosing a Lyme Doctor, you might want to consider the exchange rate (which will affect the cost of US treatments) as well as any medical insurance coverage that you may have (which may be covered if treated by a Lyme Literate Naturopathic Doctor – LLND - within Canada).  You will also want a physician that is ILADS (International Lyme and Associated Diseases Society) trained, as they follow the most current Lyme treatment protocols.  I can personally recommend Dr Maureen McShane in Plattsburgh NY, and Dr Eric Chan in Richmond, BC.  You can look on this website for the recommended list of LLMD’s closest to where you live:


Saturday, July 25, 2015

A Family Affair

As I have steadily been improving in health, my sister Heidi has been struggling with a severe downturn in her health.  After years of being constantly tired and receiving a recent Celiac Disease diagnosis, she is experiencing symptoms very similar to my Lyme symptoms.  Heidi is bed-bound as a result, only able to use a walking frame for very short distances.  In addition to the muscle pain, severe fatigue and weakness, trouble with thought processing and mental exhaustion, she has been having seizures (a symptom I have thankfully been spared).  Heidi and her husband live in Australia.  After much testing and a week spent in hospital, all of the tests the doctors have administered have returned negative.  As a result they have suggested that Heidi is experiencing some psychological issues which have resulted in her body shutting down.  We do not accept this suggestion, as Heidi has always been energetic and full of life, constantly busy and what I have affectionately named a 'super mum'.  As her symptoms overlap mine in so many ways, we strongly suspect Heidi also has Lyme Disease.  She is the same age as I was when Lyme took over my body - 27.  She also has three young children.  Like Canada, Australia is not adept in recognizing, diagnosing or treating Lyme.  We are not sure at this point where Heidi will end up going to receive a diagnosis and treatment.  By the grace of God, she has an appointment scheduled in Melbourne (Heidi lives in Western Australia) with a doctor there who has Lyme himself.  We are hoping he will be able to help her.  Because of the severe weakness, fatigue and seizures, it will be very difficult for Heidi to manage the flight to Melbourne.  We ask that you keep Heidi and her family in your prayers.  We are thankful that, because of my journey with Lyme, we have recognized signs of the disease very early after the symptoms have made an appearance and are hopeful this will speed up the process until her treatment can begin.  Heidi has taken the Horowitz questionaire (link here: http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf), and scored very high which strongly indicates Lyme as the source of her health struggles.

Heidi and her boys 

We have been trying to wrap our minds around how it is possible for two sisters to both have late stage Lyme disease.  I have lived in Canada for 14 years and assumed I contracted Lyme here.  Both Canada and Australia downplay the prevalence of Lyme in their countries.  If Heidi does indeed have Lyme, this will mean that we most likely contracted it as children, as we obviously both lived in the same area back then, and have memories of removing ticks from our bodies.  Lyme is able to lie dormant in our bodies for years at a time, causing non-specific symptoms that we tend to ignore, until a compromise to our immune system causes it to emerge and take over in full force.  A strong immune system is able to hold Lyme back so that those of us infected are able to be symptom free for many years.  It is well possible that this is what has happened with Heidi and I.

Because I was not aware of the Lyme infection within my body when I had children, it is quite possible that I have passed the infection on to my children (this will also be the same for Heidi).  We will have to monitor our children closely for symptoms and treat them as soon as possible, should they arise.  For now, our children appear healthy and strong, and keeping their immune systems strong is their best defense.

I would like to share with you a psalm that was very dear to me during the years when I was very sick.  It seems to put a voice to the inner struggles that we experience during times of intense trial, during the sleepless nights that we battle through, and directs our gaze upwards for hope and comfort:

Psalm 77

I cry out to God; yes, I shout.
    Oh, that God would listen to me!
 
When I was in deep trouble,
    I searched for the Lord.
All night long I prayed, with hands lifted toward heaven,
    but my soul was not comforted.
 
I think of God, and I moan,
    overwhelmed with longing for his help. Interlude

You don’t let me sleep.
    I am too distressed even to pray!
 
I think of the good old days,
    long since ended,
 
when my nights were filled with joyful songs.
    I search my soul and ponder the difference now.
 
Has the Lord rejected me forever?
    Will he never again be kind to me?
 
Is his unfailing love gone forever?
    Have his promises permanently failed?
 
Has God forgotten to be gracious?
    Has he slammed the door on his compassion? Interlude

And I said, “This is my fate;
    the Most High has turned his hand against me.”
 
But then I recall all you have done, O Lord;
    I remember your wonderful deeds of long ago.
 
They are constantly in my thoughts.
    I cannot stop thinking about your mighty works.

O God, your ways are holy.
    Is there any god as mighty as you?
 
You are the God of great wonders!
    You demonstrate your awesome power among the nations.
 
By your strong arm, you redeemed your people,
    the descendants of Jacob and Joseph. Interlude

When the Red Sea saw you, O God,
    its waters looked and trembled!
    The sea quaked to its very depths.
 
The clouds poured down rain;
    the thunder rumbled in the sky.
    Your arrows of lightning flashed.
 
Your thunder roared from the whirlwind;
    the lightning lit up the world!
    The earth trembled and shook.
 
Your road led through the sea,
    your pathway through the mighty waters—
    a pathway no one knew was there!
 
You led your people along that road like a flock of sheep,
    with Moses and Aaron as their shepherds.

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

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:  http://www.rideforlyme.ca/

 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

STOMACH BUG
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!!

SOME NEW ISSUES TO ADDRESS - TOXIN ELIMINATION - MOLD
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'

SALIVARY CORTISOL TEST
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...

PSALM 77 - FOR COMFORT AND ENCOURAGEMENT:
 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.