Lyme on the Front Line

Since being diagnosed with Lyme Disease, my brain has been a bit chaotic trying to reconcile it all. There is a lot to process and my ability to do so has been significantly affected by these little buggers! It’s hard to even figure out what’s going on so that I can share it with you. But I really want to keep you ‘in the lupe’ with what I’ve been doing and how things are going so far with my Lyme treatment journey.

This past month, I’ve felt pretty lousy but overall I can recognize improvements especially when I reflect back on how I was feeling at the start of this year. There are still days where I feel like I can’t think or converse, debilitating pain/nausea/lightheadness hits me out of no where, or my body gives out from under me when walking through the kitchen, but there are now some days (or at least moments) where there is light behind my eyes again, I can do some simple chores, and I can drive myself to appointments. 

It’s a little intimidating to share these kinds of extreme limitations because so often, I feel like even close friends gloss over those words without really understanding how significantly chronic illness has affected me. I want to share what Lyme treatment has entailed for me so far, and I really appreciate the love and support you show me by taking the time to learn a little more about my journey. 

When I'm immobilized on the couch, Brooklyn will bring her toys over and cuddle with me. She's got such a warm and tender heart.

When I'm immobilized on the couch, Brooklyn will bring her toys over and cuddle with me. She's got such a warm and tender heart.

Supplement Support
The first thing that I started was support for my immune system with Reishi mushroom capsules. I started taking these to help boost my CD-57 score (those guns for my killer T-cells I was talking about) and they have a bunch of other helpful properties as well such as reducing inflammation, supporting liver detox, blood pressure modulation, balancing hormones, and fighting tumour growth. 

Another new supplement I’ve started is Milk Thistle to help support my liver in the detoxification process. Like the Reishi mushrooms, there are a whole handful of other benefits to this herb like fighting DNA damage, reversing cancer growth, reducing skin damage caused by radiation, lowering inflammation, controlling diabetes, decreasing oxidative stress, and preventing free-radical damage.

To support my adrenals, I’m cutting back on my caffeine and supplementing with Ribes Nigrum in the morning and using Adrenacalm cream in the evening. These help to train my body into a normal cortisol curve. I’m finally feeling like a person in the morning and actually sleeping at night! The first night I used the Adrenacalm, I was actually yawning and feeling my body wind down. It’s been such a welcome change to have a restful night’s sleep!
Side note on coffee: I’ve found that I feel lousy in the afternoons when I drink coffee that may contain mould. The only coffee I feel good drinking is the Bulletproof (tested to be mould-free) coffee which can be found locally at Whole Foods. Looks like my body is sensitive to mould!

I’ve also gotten started on a super probiotic, VSL #3. Most decent probiotics contain around ten billion good bacteria, whereas this probiotic contains 450 billion! All of these good bacteria in my gut will help to crowd out the bad bacteria that are destroying my intestinal lining. When your gut lining gets damaged, this can lead to leaky gut (where gaps form between your intestinal cells and small particles can get through into your blood stream) which can cause food allergies, inflammation, and autoimmunity! 

The newest supplements added to my regime.

The newest supplements added to my regime.

23andMe Genetic Test
Before starting on killing off my infections, we wanted to find out if I have any genetic variables that affect my detoxing ability. This is really important because as the Borrelia bacteria die, they release endotoxins! This creates what is called a Herxheimer reaction if your body is not able to detox the toxins properly. From other people’s experiences, herxing can be 100x worse than a flare - something I would like to avoid if possible by supporting my body in the detox pathways that I’m lacking.

I’m really glad I did the 23andMe genetic test. It’s super easy, you just spit into a tube and the results give you your complete genetic make up! I can now see what types of inherited diseases I am at greater risk of developing (for me personally, Alzheimer’s came up so I’ll be doing everything I can to support my mitochondria to avoid this), what prescription drugs my body doesn’t detox very well, and even what genetic traits I have (they correctly identified my eye colour and level of hair curliness). If you’re into your ancestry, that shows up too. 

But even better than these results is that you can put your genetic sequencing (remember those A, T, C, G’s?) into a program (Genetic Genie) and it provides your complete methylation profile (all of your mutations) and detoxing profile (determining how fast or slow you metabolize medications)! I got these results back and am waiting for my doctor’s interpretation. We can use this information to determine what extra support my body needs and what dosage levels of medicine my body can handle. 

Anyone can order the test kit from 23andme.com - keep an eye out for groupons and special occasion discounts.

Anyone can order the test kit from 23andme.com - keep an eye out for groupons and special occasion discounts.

VCS Test
This is a quick and simple eye test you can do with your phone online that determines your contrast sensitivity. It can suggest if biotoxins or nutritional deficiencies are affecting your vision.


Myers’ Cocktail IV Therapy
I started receiving vitamin and mineral support via IV therapy. I take a bunch of supplements but it turns out that you only absorb about 10% of the supplements you take orally and my body is not capable of getting those nutrients across my cell membranes effectively. So by having vitamins and minerals injected, this creates a pressure gradient that forces the high concentration into your cells so you can finally put those nutrients to good use! For example, if I supplement with 300mg of Magnesium, my body will absorb about 30mg whereas I’m getting 500mg in my Myers IV.
Eventually, my body will be well enough that I can start bringing those nutrients into my cells again on my own. This just eases the burden a bit in the meantime. 

I can already feel like these treatments are helping! I started by getting a “gentle Myers” and I would feel a lot more energetic that evening and next day (like play with the kids downstairs or walk up the street to the mailbox). After a few times, my veins are no longer collapsing and I’m feeling more energetic for a few days after. I was even able to help Zach with some gardening this weekend! It’s really exciting that these IVs give me glimpses of how a little bit of energy can make me feel more like myself again. 

A Myers IV of vitamins and minerals takes around 30min.

A Myers IV of vitamins and minerals takes around 30min.

Kicking Candida
Before starting antibiotic treatment, it’s important for my body to gain some control over my systemic Candida overgrowth because taking antibiotics can make that worse. To do this, I’m completing a month of intentional Candida treatment including a herbal formula called Cadaclear Four, a prescription anti-fungal called Nystatin (which we got compounded to avoid the junk fillers), and of course the infamous Candida diet. I’m over half way through this 30 day treatment and I’m already noticing big results! Zach also did a less intense 30 day Candida treatment and 15lbs just fell off about a week after. Fingers crossed this can make as big of a difference for me!

The first couple weeks were pretty brutal to be completely honest with you. The die off of Candida also releases endotoxins and my body felt like I was losing the war most of the time. I’ve been really thankful for my detoxing support! As I’m on the second half now, it’s not as severe of a struggle, but the diet is still pretty tough. 

I’m aiming to eat around 20g of carbs a day including grains and fruit! For a visual, this looks like 1/3c of cooked quinoa or 1 piece of fruit for the whole day. It is super hard. Thankfully my diet is already free of refined sugar and dairy but cutting the sugars down even more is nothing short of traumatic. Okay, maybe I’m being a BIT dramatic, but I dare you to try it for one day. Sugar is addictive! And it’s really difficult to kick that addiction. I’m super glad to be eating a ketogenic diet now though and I can see the higher ketone levels on my blood work so I know my body is responding well. I’m feeling a lot better with my body using fat for fuel instead of the main source coming from glucose.

If you think you may be suffering from Candida overgrowth, I encourage you to do a 30 day treatment with diet and gentle herbs. It’s hard, but so worth feeling energetic, sharp, and less bloated. Some main symptoms of Candida include: exhaustion, sugar cravings, bad breath, brain fog, hormone imbalance, joint pain, low libido, sinus and allergy issues, gas/bloating, low immune function, and UTIs.

Zoodles have become my new favourite Candida diet-friendly meal. Simply sauté garlic and onions in ghee, throw in some cherry tomatoes, then add pre-cooked organic chicken, spiralized zucchini, toasted pine nuts, lemon juice, and home made pesto (keep on heat until warm). 

Zoodles have become my new favourite Candida diet-friendly meal. Simply sauté garlic and onions in ghee, throw in some cherry tomatoes, then add pre-cooked organic chicken, spiralized zucchini, toasted pine nuts, lemon juice, and home made pesto (keep on heat until warm). 

Family Testing
If you’ve been following along on Instagram, you would’ve seen that our family went to Germany again last week (well, our blood did!) for my Armin Labs co-infection test and Borrelia tests for Zach and Brooklyn. 

If you weren’t aware, Borrelia and co-infections can be transmitted sexually and across the placenta. There are lots of research studies that support this hypothesis and many spouses and children of infected mothers have been found to carry the same strains of Borrelia (there are over 300 strains!). It’s been our prayer that Zach and the children aren’t infected but based on what makes sense biologically, they probably are. We’ll be getting those results back fairly soon. 

Here's Brooklyn getting her blood drawn for her Lyme Disease test. She was so brave.

Here's Brooklyn getting her blood drawn for her Lyme Disease test. She was so brave.


Thanks for bearing with me on such a detailed update! I really appreciate all of the support and encouragement in this super difficult journey. The next step will be to start antibiotic treatment. I’m hoping that I start feeling better from it, but it’s completely possible that I may struggle with Herxes and feel worse before things start to get better. Please keep me in your prayers!

 

**Update: Zach tested negative for Borrelia, Brooklyn tested positive for Borrelia, Caleb is about to be tested, and my co-infection test results are not back yet.

Ticked Off By Lyme

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. My family MD and Rheumatologist never supported me down this route, but it was part of the original treatment plan with my Naturopath. 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 my normally sweet Rheumatologist got really angry with me telling me that my symptoms were actually 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 that my current Naturopath referred me to a Naturopath who specializes with Lyme. 

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. 

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.