A Diagnosis

As most of you know, I have recently been diagnosed with late-stage Lyme disease. Meaning it was not treated within the first month following the infected tick bite and it became a much bigger problem. We are not sure how long I have had it, but I have memories of pulling many ticks off myself growing up. Knowing now what the signs and symptoms are and looking back, I am thinking it's possible I contracted it sometime in my teen years, but there's no way to know for sure. With a strong immune system the bacteria can lay dormant in your system for decades sometimes until a “stressor” comes along and compromises your immune system, giving the bacteria a chance to reproduce and spread. At this stage it is very difficult to treat.

We are very thankful for the many answered prayers and for God leading us to a diagnosis after over twenty months of relentless chronic pain and often debilitating fatigue, among many other symptoms. At the same time we are quite overwhelmed as we discover what it exactly is that we are dealing with. Since getting this diagnosis we have been getting asked a lot of questions about Lyme and I hope this post will answer most of them for you. We are both new to learning about Lyme as well and are pretty overwhelmed and discouraged about what we are finding about treating Lyme disease, especially in Canada.

How we came to the diagnosis:

Sometime in Spring 2015 two friends recommended a blog to me, Living and Lyme, written by a lady in Ontario who has Lyme disease. One recommended it to me because many of her symptoms seemed to match mine and it raised a red flag for her. The other because she thought I would find comfort in reading another Christian's health journey and be able to relate to how long it also took her to finally get a diagnosis. While many of our symptoms matched, her's had progressed further so I didn't think too much of it, but I ended up mentioning this to my naturopath doctor in August, not because I thought I had Lyme myself but because I was interested in some of the therapies she was receiving for some of our similar symptoms. After I mentioned this my naturopath doctor seemed to suddenly take into serious consideration the possibility of me having Lyme disease. He explained that I do live in a Lyme-endemic area. Wanting to look into this possibility further I then contacted the author of that blog in Ontario and she said if I was considering Lyme for myself I should do the Horowitz Lyme Questionnaire (created by Dr. Richard Horowitz, which you can find online) as it is a helpful tool for determining how high your probability of having a tick-borne illness is by calculating your symptoms.

I scored just over double the amount that would be a high probability, so after seeing this I took the questionnaire to one of my medical doctors and he admitted he knows nothing about Lyme disease but that he does know some people who have it and that it is serious, so after looking it up on his phone in his office he was confused and paged an infectious disease specialist. After he spoke to him he sent me for the standard Canadian ELISA test that day. A month later when he called me and told me the Canadian test came back negative he said it had a note on the bottom that said if I contracted Lyme any longer than six months ago it could be a false negative as it only detects recent infection. We already knew that if I have Lyme, I have had it much longer than just six months as I had been sick for nearly a year and a half by that time. Yet he would not do any further testing for me. In Canada they only do the Western Blot test if you “pass” the first screening, which rarely happens, and from what I understand the Canadian Western Blot test is also not very good. The infectious disease specialist also said he would not see me with the initial test being negative. My doctor did not tell me I don't have Lyme, as I hear most doctors in Canada do at this point, but that he believes its very hard to diagnose in Canada and advised me to just wait for my upcoming Rheumatologist appointment in March that I have been waiting for for quite some time now, as I may be able to convince her to bend the rules and order further testing. Thankfully we were aware of the inaccuracy of the Canadian tests so I still reluctantly (and ended up putting it off for a while as I was discouraged from the unending runaround and search for answers), sent away blood tests to IGeneX in California, the current best lab in North America for Lyme disease testing. Three weeks later the IGeneX Western Blot test came back positive by both the labs standards and CDC standards.

 Canadian medical doctors do not treat late-stage Lyme:

It was not until I completed the Horowitz Lyme Questionnaire that I realized for the first time that all my symptoms could possibly be due to having late stage Lyme disease, and that all this time doctors missed these signs and symptoms because they are not trained to look for them in Canada. I was also unaware of the signs and symptoms to look for and am thankful for those who have put much effort into raising awareness for this debilitating and ever-spreading disease. I went a year and a half since I went downhill before getting a diagnosis. The author of Living and Lyme went three years. I read the average Canadian with Lyme goes undiagnosed or misdiagnosed for six to eight years.

We do not have Lyme Literate Medical Doctors (LLMDs) in Canada but in BC they do have Lyme Literate Naturopath Doctors (LLNDs) as they have different regulations in that province than the rest of the Country and are able to prescribe antibiotics and other medications that are often needed to treat Lyme.

For more information on why Canada is so far behind in Lyme testing and treatment, and why Lyme disease is spreading in Canada, I recommend you watch this 45 minute CBC documentary:
Ticked off: The Mystery of Lyme Disease
I will also link a few more resources to the right sidebar that we found helpful in explaining Lyme disease.

The path we're choosing at this time:

From what we understand there are basically two different ways you can go about treating late stage Lyme disease. One is using long term antibiotics to kill off as much of the bacteria as you can, or using both antimicrobial herbals and other various therapies that boost your immune system and get those to do the killing. We've also been looking into bioresonance therapy as we've heard Lyme patients are seeing fantastic results with them. We would like to avoid long term antibiotics if possible and only go that route if no other treatments are working. I have already struggled with a systemic candida imbalance for quite some time because of the Lyme in my system and antibiotics will exacerbate that issue, but we will discuss this with the doctor before deciding which treatments are best for me.

We were advised to see a doctor who is experienced in treating Lyme and co-infections as it is a complicated disease to treat and those who try getting treatments through their regular doctors in Canada, while they mean well, do not make much progress because they are not trained to treat this disease and there are regulations preventing them from doing necessary treatments. We were recommended to two reputable LLMD's in the states, and a reputable LLND in Richmond BC who is also part of ILADS (International Lyme and Associated Diseases Society). We have since contacted the one in Richmond BC and have an appointment booked for the end of January. We chose to stay in Canada for a few reasons. Seeing as both the LLMDs in the US as well as LLNDs consider alternative treatments from antibiotics depending what's best for the patient, we decided we might as well stay in Canada. The dollar is not good right now so treatment will be more costly in the states than treatment in BC, and if I end up needing to travel on my own it will be easier for me to stay in Canada. Kyle's Mom also lives close enough to Richmond that this will also eliminate the need for hotels and most likely car rentals.

What I'm already all doing:

Currently I am receiving IV therapy through my ND in Winnipeg which is mainly vitamin C and alternating glutathione (to encourage detoxing) and hydrogen peroxide. When you receive vitamin C in high doses intravenously it not only gives your immune system the building blocks so it can work more effectively but your body also produces high levels of hydrogen peroxide, a known toxin to things like cancer cells, bacteria, fungus, viruses etc. Therefore making them very susceptible to damage. We are hoping these will help get my immune system in good shape for treatments and possibly start killing off some of the Lyme bacteria. I have been feeling increasingly lousy as this month goes on and my naturopath doctor is thinking this is due to a herxheimer reaction from all the IVs this month. I also find the days I receive glutathione I do a bit better. The following is a copy and paste from google:
  

"The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. This is a normal — and even healthy — reaction that indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off. The biggest problem with the Herxheimer reaction is that people stop taking the supplement or medication that is causing the reaction, and thus discontinue the very treatment that is helping to make them better. Although the experience may not make you feel particularly good, the Herxheimer Reaction is actually a sign that healing is taking place."

I'm also currently receiving LDI and LDA (low dose immunotherapy and low dose allergy) to help with candida and Lyme symptoms, but we aren't sure if I'll continue this depending what the LLND says and if this can be done in combination with his treatments as well. 

For most of the last year and a half I have also been on a very strict diet through my naturopath which has helped with the intensity of my symptoms. I went off the diet for about five months earlier this year and in that time I went downhill physically rather quickly, August to October being the most dramatic downturn. Recognizing this I went back on the diet in October and will continue this and will make any changes necessary depending on what the LLND recommends. From the reading up I've done on the diets required during Lyme treatments they seem very similar to what I am on now, so I am thankful that this shouldn't be too much of an adjustment for me. Now knowing that I have Lyme we are quite amazed over the reason the diet likely helped me so much. The Lyme bacteria feeds off of foods like sugar, dairy, fermented foods, processed foods etc, so I was cutting off the very food sources this bacteria needs to reproduce, unknowingly delaying the progression of this disease. I probably wasn't killing much, or any of it off, but there was a reason I felt so much better avoiding those foods! I'm interested to see what the LLND says about this and if he also thinks this is why the diet helped me and if it could be the reason I am not disabled further at this point.

The only other main question I didn't address here is my symptoms and how much this disease has disabled me at this point. I hope to put something together that I am comfortable with sharing publicly and think it's better as a post on its own so that instead of just listing symptoms I can also explain them and what I all can and cannot do now.

I hope this letter answers at least most of your questions. We thank you all for your prayers and various ways in which you've supported us and continue to do so. We are so grateful and overwhelmed by how Christ is showing us his love, mercy, and care for us through all of you!! The communion of saints is truly wonderful. May God bless you.

Love, Nadine and Kyle Bysterveld.

I would also like to share with you a psalm that I have read over many times as I receive much comfort from it throughout this time of illness:

Psalm 13

"How long, O Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I take counsel in my soul
and have sorrow in my heart all the day?
How long shall my enemy be exalted over me?
Consider and answer me, O Lord my God;
light up my eyes, lest I sleep the sleep of death,
lest my enemy say, "I have prevailed over him," 
lest my foes rejoice because I am shaken.
But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.
I will sing to the Lord,
because he has dealt bountifully with me."