If you have Lupus, I’m sure you’ve also had someone come up to you and ask if you’ve been tested for Lyme. My first reaction has always been to start explaining the differences between the diseases and the rigorous testing that I went through for my Lupus diagnosis. But I find it really fascinating to see how God will allow a veil over our eyes to something for a season; now I look back and I think “ah ha”.
I’ve recently received the definitive diagnosis that I have an active Borrelia burgdorferi infection; I have Chronic Lyme Disease.
I’m sure you can imagine what a difficult time this has been. I am pretty devastated, yet also grateful for the knowledge so that I can now get started on treatment. I’ve had some moments where I feel such a deep sorrow and in these times I can do nothing but abide in the grace of God. I don’t always understand why God allows these horrible things to happen, but I trust that he is always compassionate and merciful in it.
“Behold, we consider those blessed who remained steadfast. You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful.”
James 5:11
It has been surprisingly difficult to talk about this new diagnosis. One reason being the vulnerable nature of sharing details of my health, and then there’s the fact that I’m going downhill neurologically very quickly so thinking is difficult, but perhaps the main reason is that I feel like I haven’t learned enough yet. I’m nervous to start talking about something when I still have so many gaps in my understanding. So I’ll humbly share with you how I was diagnosed, how this disease has affected me, and the start of my treatment journey.
For the record, yes I still have Lupus; Lupus and Lyme are different diseases. Lupus is an autoimmune disease (where your body attacks itself) and Lyme is a bacterial infection (a double membrane bacteria that is able to hide itself from your body). Interestingly, the symptoms of both are almost identical - from the extreme fatigue, pain (everywhere!), brain fog, heart failure, inflammation, and oh man the symptom list is a post in itself. It’s important to look for the root cause of your illness and for me, it’s looking like the root cause of my Lupus could be Lyme.
I’ve always been one to shout it from the mountains that I have Lupus - I have no fear or shame about it! But for some reason this Lyme diagnosis makes me feel different. I’ve cried like I’ve never cried over my Lupus. I think one reason may be that there are children involved now; I can take hits on my own, but this is a devastating family problem. Another reason is because I’ve progressively (and exponentially) gotten much more ill over the past several months and historically, people who start treatment for Lyme don’t feel much better for an undisclosed amount of time (years). Lyme has also really affected me neurologically; I’m convinced that untreated, I’m on the road to an MS diagnosis. This is very serious. I’ve lost much of my ability to remember, concentrate, reason, and control emotions. I no longer have any “good days”, only good parts to each day. It’s completely devastating to compare how hard it is to try to get through each day with what expectations I used to have for when I’d be a young Mom. It’s frightening how life-changing this diagnosis really is.
One of the steps in my Lupus Treatment Plan was to look at if I had any chronic infections that could have caused my Lupus or may be triggering my disease activity to increase. I’ve seen so many articles about how chronic infection can be a cause of Lupus but for some reason, it took me four years to get to the point where I took a test. Turns out I have at least six hidden infections… (we’ll save the treatment for these for another day).
But one thing this test showed (an American test - Cyrex Lab) was that my body was producing B-cell antibodies against Borrelia burgdorferi; this could mean I had past exposure or current active infection. So I followed up with a T-cell antibody test (from Germany - Armin Labs) and this showed that my lymphocytes are currently fighting an active Borrelia infection.
I do remember having a bug bite when I was around 12-14 years old. It could’ve been from my backyard, my ballet trip to Winnipeg, summer camps in the US… but I do remember vividly developing a large bullseye looking rash on my leg that had a firm red centre. I figured it was a spider bite and I was afraid of spiders for a long time after that because I believed that they affected me differently than everyone else and I must have an allergy. Knowing my Mom, I’m sure I was taken to the doctor and given antibiotics for it - whether they were the correct antibiotics I don’t know. Either way, I had the typical rash manifestation when I was a girl, symptoms ever since, and a recent positive test for current active infection ~16-18 years later. I don’t understand how Canada wouldn’t recognize this as Chronic Lyme Disease.
In case you weren’t aware, Chronic Lyme Disease is very controversial. Canada doesn’t believe in Chronic Lyme and even one of my most trusted doctors got really angry with me telling me that my symptoms were actually likely fibromyalgia, my bite as a young girl “didn’t count” because there was no Borrelia in Vancouver at that time, it’s not likely a recent infection, these labs were preying upon me while I’m weak and searching for answers, and that my symptoms show that my brain isn’t working properly and that will be fixed if I sleep more.
Most people who go to a conventional doctor hear something similar, but this isn’t all in my head. I’m not crazy. I have a very strong awareness of my body and I believe that the two well-renowned independent labs that gave a positive result are trustworthy and true. In that moment when I was being scolded for being so silly to believe a scam, I stood up for myself. I remembered that I don’t have to blindly do what a doctor says and that I am in charge of researching all options, gathering my results, and deciding what is the best course of action. So after I left, I made sure to find a doctor who specializes with Lyme. In my area, that would need to be a Naturopath.
I’m very fortunate that the Naturopathic team at Catalyst Kinetics has a new member, Dr. Aubrey Shannon, ND. Dr. Shannon has a background with Lyme Disease and is not only extremely knowledgable, but also able to communicate with me clearly and concisely. I will be able to be treated by her as well as a leading Lyme specialist in Vancouver, Dr. Julie Moore, ND. I am so thrilled to have the expertise of Dr. Moore as she takes the lead in my treatment plan, while also maintaining the ability to complete certain treatments from Catalyst Kinetics which is much closer to my home.
Here I am receiving my first IV - a Myers' Cocktail - to help my body rev it's engines for the big fight ahead.
For now, I’m getting started on improving my body’s ability to fight infection and boost my CD-57 score before testing for co-infections. My white blood cells that fight infection (killer T cells) have CD-57 (the guns) and currently, my guns are very low. I believe this is why I have so many other chronic opportunistic infections. We can start to expose the Lyme bacteria once my body will have the ability to fight it.
What Borrelia does is essentially hide in your cells and within your tissues. These buggers can even shut down your body’s ability to see them floating around! So my immune system can sense that something’s wrong - it can’t see it, but it can smell it - so it just starts dropping bombs to try to fight it off. Unfortunately, this is autoimmunity. This is why so many people who have Lyme disease have autoimmune diseases like Lupus, MS, ALS, and Parkinson’s. If you are reading this and you have an autoimmune disease, don’t be like me and wait to get tested. In my consult with Dr. Moore, she told me that she never had an MS patient that didn’t test positive for Lyme; once their Lyme was cured, so was their MS.
Naturally, my next question was to ask if I could expect that after my Lyme treatment, that I would no longer have any markers for Lupus activity? To which she responded “yes”. That was one of the most incredible things I’ve ever heard. It looks like my Lyme infection has resulted in autoimmunity, so curing my Lyme (however long and hard this will be) will also heal my Lupus!
I am absolutely overwhelmed with joy at the way this horrible diagnosis is not just a good thing, but a great thing for my overall healing journey.