Monday, August 4, 2014

6 weeks of treatment!

I have been in treatment for six weeks now.  We are noticing a huge improvement in my function, strength, pain levels and endurance.  Thank-you Lord!

 After battling against a reaction to the medication and the subsequent weight loss, I have gotten used to taking my Babesia medication (or 'paint' as we call it around here...)
  Mepron is bright yellow in colour and used to treat the co-infection Babesia, which is a parasite that often accompanies Lyme and can cause some of the worst symptoms of Lyme Disease.
It has taken me quite awhile to sort out which medications to take when, as they need to be spaced apart for several different reasons, and taken a few times daily.  The doctor adds more medication/supplements/nutritional support weekly so I just think I have a handle on it when I get thrown a bunch more to add to the mix! There have been weeks when I could not concentrate properly because of cognitive problems from the lyme flare-ups and it was very hard to sort my medication if someone was talking or I was distracted in any way.

I have attached my medication schedule for those of you who are interested, as you can see, taking medication takes up most of my day.... It is a weird concept to be taking care of yourself and not much else all day, every day - it is not my favourite but I am looking at it as my 'job' for now...
 This is now my second week doing my medications at home.  I no longer have to go to America every day for treatment as I am well set up at home and stabilized now.
I am getting quite handy with my nursing duties - the doctor even gets me to mix my own antibiotic IV which personally I think is a little bit of a dodgy idea - but I do my best and I am here to tell the story so I mustn't be stuffing up too much!

During a Herximer Reaction (when the toxin levels rise in my body and the symptoms get much worse due to the dying off of the bacteria) I experience severe worsening of symptoms, pain in my legs, trouble breathing, extreme fatigue, nausea, blocked ears, phlem in my throat, headache, sweats....etc... As I write this I have not had a herximer for a few days.  I have a feeling the doctor will try to induce one with UV light therapy or some more medication when I go on Thursday because it is a good sign that my body is fighting the bacteria.  Not saying it is pleasant - but it helps to know the herx has a purpose.
The hyperbaric chamber is a high pressure oxygen chamber - it delivers concentrated oxygen directly to my cells.  This improves healing and helps with boosting my energy/endurance levels.  I can feel the effects of being in the chamber and because I get such improvement after being in the chamber it is one of my favourite parts of treatment!  We had some trouble at the beginning with humidity/heat in the chamber and I could only last 1.5hrs before getting extremely claustrophobic. The cooler (attached) runs the air through ice before it goes into the chamber so it keeps the heat down from the pump.  We have also figured out that leaving the air conditioner on in the room greatly helps my comfort levels.  The doctor now has me going in the chamber 2X a day for 2hrs each time.  More the merrier I guess!
I now have a hyperbaric chamber at home.  This is one of the reasons I don't have to go to the States for daily treatment - it is much more pleasant in my own environment - the people are friendly, the place is cozy and I am able to enjoy some sunshine in between treatments - in my own gorgeous backyard!  I have help daily with getting in and out of the chamber - volunteers from our church have been unbelievably accommodating - even with my constant re-working of my schedule!

Although we have been disappointed with the level and quality of communication between doctor and patient, we are learning how to communicate effectively and we are very confident in Dr P's ability as a Lyme Literate Doctor.  We love the fact that she treats the body as a whole - combining nutritional support and homeopathic remedies to compensate for the toll that the Lyme, co-infections and treatment take on the body.

It still amazes us how God directed us to Dr P's office and a diagnosis of Lyme disease.  We are not sure why He chose this time to open up a way for treatment but we are so thankful that I now have a new opportunity to regain my health! It is unbelievable how quickly things fell into place once we began to follow the Lyme trail - God has had a hand in it all.  Praise the Lord!
"Because of the Lord’s great love we are not consumed,    for his compassions never fail.They are new every morning;    great is your faithfulness." Lam 3:22-23


  1. Roze, We are thankful that the Lord is with you in this very trying time. We are constantly praying for you, that you may be able to endure all He has given you, and we are thankful that you can still praise Him. Love you lots!

    1. Hey Heidz! Miss you a bit - and the weekly skype dates we were having. No time for that anymore but Lord willing we can pick it up again as soon as I have more than a spare minute in my day. Thanks for your encouragement. XOX

  2. Dear Roze, your sister Heidi shared your story so that we would pray for you. We don't know you, but we are connected by faith in the same Lord, and so that makes you part of our church family. We have prayed for you, and we will continue to do so. Thanks for sharing your story on this blog, and we praise God that through this hard trial, He has never stopped strengthening your faith, and carrying you. And we praise Him for giving you the hope of healing and a way to move forward, and a loving church community to support you. May God bless you and your family, and continue to carry you.
    Brent & Chris, Albany

    1. Thank-you Brent & Chris,
      Sounds like you are good friends to Heidz & Jero - to encourage someone whom you don't actually know shows character. We are blessed to be a part of such an amazing network of believers! Thank-you for your words of encouragement and your prayers. I will have to get Heidz to point you out to me sometime if we are given the opportunity to visit Albany again...

  3. Hi Roze, i'm so glad you started a blog! It's great for us to see what all is involved in your treatment. Your witness of faith is absolutely beautiful! And i (we) hope that if there are others who are suffering with Lyme, you will be inspirational and a great source of information for them.
    We love you and Eric and the kids lots, and we hope and pray that God will continue to grant you healing, and strength each day to persevere on this path.
    Al and Janet

    1. Thanks Janet (& Al),
      You have always been an encouragement to us to carry on and look for the blessings around us in the midst of our struggles. Thanks for sharing your love of music with me - it has filled many hours of waiting through appointments and driving back and forth. Lord willing we will be able to play together again sometime.... xox

  4. Hello exited that you are able to do this. We were just talking about you last night.(..did you get Jan-Willem's e-mail?)
    It is great that you are able to share this so others can have a small idea of what it is that you are dealing with day in and day out.
    Many prayers go up each day for you all!
    Let Him carry you Roze.
    With Love
    Jane-Willem and Jane

    1. Thank-you for your enthusiasm and support! God has allowed us to experience many new contacts and develop new friendships through this journey and we have been blessed with the abundance of love and help we are receiving. I seem to have lost my creativity with food somewhere during this process - Jan-Willem is a bundle of energy and an inspiration to continue to try and make something out of nothing! Hope to see you again soon...

  5. What an amazing God we have. So glad also to hear you started a blog. Gives us a better understanding of what you all go through. Hope and pray that this all helps you. You and Eric are often in our prayers and we will continue to pray for you all.

    1. Thank-you for your prayers (they are precious to us and we know that they are greatly effective...) and for your support. God is surely amazing and we are in the throes of experiencing His goodness in our lives!

  6. Hi Roze, it is great to have the blog and see how you are doing and keep updated on your progress, we pray for you, your treatment and your family but also reading the blog means we can pray for the specific things you are going through. It is also lovely to hear your voice and sense of humour shine through in your writing!
    Sending much love,
    Simon, Teresa and Ned van der Schaaf

    1. Hi Teresa!
      .....I miss you a little - if I was allowed to have a favourite cousin.... Thanks for checking up on me once in awhile these past few years - it has been nice to know that we have remained in your thoughts and prayers. I hope you and yours are well - I would like to meet Ned one day as well, Lord willing. God bless.