Tuesday, June 24, 2014

A Diagnose - Letter to Family & Friends

June 24th 2014

Dear Family and Friends,

By now many of you may have heard that I have been diagnosed with Lyme Disease.  For the past couple of months I was struggling with breathing due to weakness in my rib cage.  This led to further weakness and extreme fatigue and in the weeks before I sought treatment I was going steadily downhill - struggling to breathe, napping often during the day and barely able to walk again.  I went to my doctor in Canada several times struggling to breathe but she was unable to help as she has exhausted our resources in the medical community here.  It was a scary time for us but we had already sent away bloodwork to America for testing at a lab there so we had an idea that this may be Lyme Disease.  I had been tested under Canadian standard testing over a year ago for Lyme but my test returned negative so we assumed I did not have Lyme.  Eric was reading an article in a magazine about the inaccuracy of the testing that is done in Canada, and how it only catches approx. 30% of cases.  It prompted me to do more research and find out which test I had taken the past year.  As soon as we discovered it was the flawed Elisa method of testing we immediately sought and paid for a blood sample to be sent to a reputable lab  (IgeneX) in America for testing.  

The Lord guided things in such a way that we had a contact through Damon's former kindergarten teacher who was able to put us in contact with a Lyme Literate Doctor in the States.  As I was struggling so much and going downhill so fast she got me in for an appointment the following week.  My blood work results had returned by that point and I tested positive for Lyme Disease (by American standards - not Canadian...)  Coupled with my symptoms it was obvious to the doctor that I have Lyme so she began IV antibiotics immediately after our consult last Tuesday morning.  For added confirmation, I faxed the president of the Canadian Lyme Foundation to take a look at my bloodwork and there was no doubt in his mind that I have Lyme disease.  

It has been a week now since I have started treatment for Lyme disease.  I have been travelling back and forth to Buffalo USA almost every day.  It has been a whirlwind week - I was fitted at the hospital with a picc line - a direct line to my heart through my arm so that I can be treated intravenously without having to re-administer the IV line each time.  This also allows me to administer the IV myself at home over the weekend or days that I do not need to be in the clinic.  The doctor suspects that I have co-infections (commonly connected with the Lyme bacteria) so we have sent away further blood work to see if we can identify which ones I might have and treat accordingly.  We have also discovered that I have become lactose-intolerant (also apparently a common co-condition of people with Lyme).  I have to adhere to a very strict diet - no gluten, sugar, fungus plants (ie mushrooms), milk or milk products, alcohol (sigh....) or fermented products.  The Lyme bacteria feeds off gluten and sugar so we want to stop it from growing as we kill it off.  The diet is not a stretch for me as I enjoy salads and the plain taste of fresh food anyway.  Cappucino's, chocolate and wine I will miss....Emoji

My immune system is repressed - which is why I have had so many reoccurring infections in the past couple of years, my adrenal glands are not functioning properly (apparently I always sit with my legs up to prevent myself from passing out or falling off the chair! - I always thought I did this because I was uncomfortable but it is an unconscious and automatic response of my body) and I have very low blood pressure (even lower upon standing up - causing weakness and dizziness...)  The little Lyme spirochete have certainly been busy little fellas!  The doctor is confident that with a multi-system approach to treatment I should be able to return to health again - thank-you Lord!

Treatment consists of IV antibiotics, IV vitamins and supplements, 5 other prescription antibiotics, approx. 20 probiotic and vitamin supplements and 5 homeopathic remedies.  As they all need to be taken several times a day and at intervals from each other, taking medication has taken over my waking hours lately.  I am hoping this will only be temporary (no longer than 6 months or so).  I have worked out a 1/2 hourly schedule which works to follow and allows medication taking to become more automatic and less of a thoughtful effort. 

I have also done UV light therapy on my blood.  This therapy boosts my suppressed immune system.  The doc was hoping that I could have this done 2X each week but as my herx (bacteria die-off) reaction was so bad (this is a good thing - means my body is responding to treatment!) she has scheduled it for once a week instead.  We need to detox my body daily and weekly so that the dead bacteria is removed from my system.  I also went in a high-pressure oxygen chamber three times last week for about 1.5hrs a time but because of fluid behind my ear it was no longer safe.  

I am injecting myself once a day to clear up my allergic reaction to milk, which should in turn decrease the fluid in my ear.  In about two weeks I will be able to try the hyperbaric chamber again, Lord willing.  I would like to do this therapy as it returns noticeable energy to my muscles and joints and allows me to walk better, as well as relieving the pressure of my ribs on my lungs.  It should speed up my recovery process.  I experienced a high amount of pain in my muscles while in the chamber on my last day.  The doctor has also attributed that to a 'herx' reaction, which is expected at this point in my treatment. 

Since I began treatment, my ribs have relieved much of their pressure on my lungs and I am able to breathe properly again.  I am also beginning to feel a return of energy and spark (watch out world!Emoji)  I have been struggling for so many years, it is exciting to feel a return to my own body - my legs are beginning to feel attached again!  I forget how I used to be - I have had a glimpse (especially today) of what things could be like as I continue to improve and I am very excited about that possibility!  I am already making plans about things that I would like to become involved in again and the ways I will be able to better take care of my children, husband and home....slow down Roze!!  May God not let me forget the lessons I have learned from this experience and continue to remind me to take one day at a time.

 "Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own." Matt 6:34

1 comment:

  1. Hi Roze (and Eric!)

    You most likely have no idea who I am, but Eric and I went to school together. My best friend, Jenn, goes to your church, and I have asked her often in the past years how you and Eric were doing. What relief to know that after years of struggling not only with your health but with the unknown as to why, there is a diagnosis!! And then to read that the treatments administered have already made a difference - wow! Praise God! We pray that the treatments may continue to have their desired effects. We pray that you will continue to look to Him for all things, and that you may very soon get to pick up the things you've had to lay down in the last years. May you and your family be given what you need day in and day out. (Ps. while I don't have Lyme Disease, I do have the Pride Disease, a disease that flares up often, even when I know what the perfect Treatment is for it. Thank you for reminding me of God's answer to Job - such humbling chapters. Our daughter's name is from Job, as this book in the Bible has played a key part in our lives as well. Not only is God's answer humbling, it is also so comforting. He is sovereign!! May we continue to rest in that knowledge.)