Well, almost 9 years have gone by since I was diagnosed with Clinically Isolated Multiple Sclerosis. After having my first large attack, I am officially in the relapse remitting group. I’ve had symptoms on and off over the years if I get overheated, but have never had a full-blown flare since my diagnosis.
My first MS flare since my diagnosis started back in February of 2023. It has been similar to my first attack that led to my diagnosis back in 2014. However, this flare lasted a lot longer than I expected and I’ve had new symptoms that I’ve never had before. After 5 months of trying to take care of myself the way that I usually do I finally asked for a steroid treatment in June of 2023 to end the attack.
This time the flare affected the right side of my body as it did initially. My body started to go numb and tingling from my right hand all the way down to my right foot. However, this time the numbness also spread across my abdomen to the left side. I also had Lhermitte’s sign again, so every time I looked down what felt like electric shocks would go down my spine. And last but not least, I had a few weird instances where I would put on a sweater and my forearms from the elbow to my hand would go completely numb and I couldn’t use them. For me, that was the scariest, because the fear of losing the ability to use my arms has been hard to contend with.
My Mind Freaked-Out
What if I lose all use of my arms?
What if I lose all use of my legs?
What if I end up in a wheelchair?
What if? What if? What if? What if?
I thankfully have a really great husband who keeps me grounded in reality.
“You haven’t lost all use of your arms.”
“You haven’t lost all use of your legs.”
“If you do, I’ll take care of you.”
“Stop with the What ifs! They don’t serve you.”
Sometimes I need a kick in the pants to get my monkey brain out of doom and gloom spiralling.
And so began the exploration into why my health sidekick decided to become known again in my body. I began new research and doubled down on the 6 pillars of health to take care of myself and looked into new ways as well.
It’s been a frustrating 5 months and I’ve wanted to share and process things on the blog but I was in the thick of it and didn’t want to share anything I hadn’t properly processed or learned.
Struggling With My Overall Health
I shared that back in April of 2022 I had been dealing with restoring my liver health. Unfortunately, after 2 rounds of TUDCA, I went off of the supplement and my liver enzymes went back up. After making some dietary changes my liver enzymes reduced to healthy levels over the summer of 2022. I went in for routine bloodwork in March of 2023 and my liver enzymes had shot back up. I decided to take 2 supplements that I know are supportive for my liver; dandelion detox supplement and Liver SAP. I was also drinking different supportive teas for liver health in the evenings and getting back into a routine of castor oil packs every other night. This seemed to help and brought my liver enzymes back down by May 2023. Needless to say, something is going on with my liver and I’ve been trying to figure that out alongside dealing with this MS attack. It’s been a lot on the body and mind which has caused me a lot of stress. Let’s talk about stress…
I’ve gone through all the reasons why I might be having a flare and it kept coming back over and over again to stress. I had originally read “When The Body Says No” where I experienced an epiphany that the stress of calling off a wedding and leaving a toxic relationship in 2012 was a huge catalyst to my body becoming confused and me developing MS (which I was genetically prone to in addition to having contracted EBV when I was younger – more on that later). It was exactly 2.5 years from that stressful time in my life to the time of my diagnosis. Cue 2020, pregnant with twins, a plandemic, giving birth to twins, hemorrhaging, PTSD from birth trauma, postpartum depression and anxiety, being ostracized from society, not having community support, and the list goes on. And then 2.5 years after, I’m experiencing my first flare in 9 years. So my inability to process stress or just the build-up of stress contributing to this attack makes sense. The stress of the last 2.5 years has been a lot. So I’m giving myself grace and know that it’s going to take a while for me to take care of my nervous system and learn how to re-regulate again. Ok, let’s go back to EBV…
Alongside liver health, and managing my stress I also dove into the research around EBV which started surfacing and making itself known to me. In January of 2022, the “Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis” was published on Science.org. The link between having EBV earlier in your life and it how it is linked as a causation for MS blew my mind. “They” had finally figured out a key trigger. I still believe it’s a multitude of different factors that will contribute to someone developing MS since not everyone with EBV has MS, but now we know a little bit more about why T cells in MSers’ bodies are confused when they encounter B cells with EBV in them.
And thus began my research into EBV, EBV reactivation and if I could get rid of EBV in my body naturally.
I say naturally because, after one month of the MS flare, I decided to contact my family doctor and the MS Clinic at the Ottawa hospital to ask for steroid treatment to halt my attack. This meant brand new MRI scans and meeting a new neurologist. I will say that the new neurologist was great and really pleasant to talk to but immediately started pushing one of the latest disease-modifying treatments (DMTs) on me. With the advancement in science, the DMT no longer affects your entire immune system but simply acts on eradicating B Cells in your body. The ones where EBV lies dormant in. However, I’m still not sold on the drug and am currently weighing benefit vs. risk. And as I have functioned for the last 9 years successfully always considering natural remedies before something synthetic.
During this time my frustration with Naturopaths also began. I have always been a huge fan of them in the past and have always sought out their help before conventional doctors. I had to start working with a new Naturopath when we moved back to Ontario from BC in 2021 since my former Naturopath had decided to specialize in fertility. I began seeing one at BioHeal Ottawa and received a few recommendations on supporting my liver health. She was the one that had recommended TUDCA so I went back in to see her to discuss if I could naturally get rid of EBV in my body. I was put on a few tinctures and sent on my way. However, something didn’t feel right. I was simply being put on more supplements and I didn’t feel like they were addressing the root problems in my body. I also felt very rushed and dismissed in my last appointment with them.
I was battling with a lot of exhaustion, depression, and a lack of motivation and energy during the summer of 2022. So I decided to start working with a nutritionist who was talking about things like iron overload in the body and how it stresses the liver. Some light bulbs started to go off for me since I had received iron transfusions after giving birth to the twins. And I thought that maybe my liver hadn’t been able to handle the extra iron and was protesting.
The nutritionist was successful in helping me combat exhaustion and depression but had also urged me to go off of my vitamin D supplementation and had put me on a desiccated liver supplementation which another naturopath had questioned if I should be on based on the iron overload issue in my body.
I decided to go back to a clinic that I had been at before and started seeing a new Naturopath. After the initial 90 min intake appointment I received a bunch of recommendations I was already doing and one new supplement. So I went on that supplement and then found out I shouldn’t be on it long-term.
Thus began my search for another Naturopath. And this time after the initial 90 min intake appointment I received no information and was told I needed to book another appointment to receive any recommendations or a protocol. I had since reported that Naturopath to the Ontario college since I truly have never encountered any Naturopath who works that way.
I have yet to find a Canadian Naturopath who specializes in EBV and EBV reactivation. When seeking support and help from my IG followers, someone mentioned I should look into Dr. Kasey Holland and while going through her website and profile I discovered bits and pieces of information that led me towards new research. She mentioned that there could be several things that contribute to an EBV reactivation such as dealing with parasites or mould. More on that later…
So after diving into EBV information with Dr. Holland and seeing an IG reel from the_detoxmama showing a video with Dr. Lee Merritt talking about autopsies on MS parasites showing a prevalence of parasites in the body… I decided to dive down the wormhole of MS lesions in the brain actually being caused by parasites.
Here are several references for you to look into as well.
LDN Research Trust and F1000Research and Dr. Lee Merritt: found that in a recent autopsy study, 10 out of 10 patients had nematode small worms in the brain. Thus began the line of questioning: Are the lesions in my brain caused by inflammation or parasites?
After months and months of frustration with practitioners and naturopaths, I’ve decided to take matters into my own hands with guidance from Melissa Ramos for Sexy Food Therapy. I’ve registered for her Sexy Autoimmune Academy and will be doing an intensive GI-map test to see if we can discover parasites in my stool. If that’s the case, then I’ll be doing a parasite cleanse to support my body in getting rid of them as my next step.
Additionally, I’ve been diving into research around mould exposure causing EBV to be re-activated as well. So since I know that I’m positive for EBV I’d like to understand if that is also potentially causing this recent flare. I’ll give you an update once I’ve figured out the testing and share the results.
There are a few things that I’m really good at. Creating lifestyle routines that work for me is one of them. And I know I needed to get strict with some lifestyle routines to support my body in getting out of this flare. However, breaking habits that don’t serve me well is definitely a struggle.
While I’ve been really good at waking up at 5 am, tongue scraping, oil pulling, meditating, journaling, drinking lemon water with a pinch of salt, eating a meat stick for protein intake before working out, getting in a morning workout, showering, doing a facial massage all before my first cup of coffee. I’m also really, really good at staying up just a bit too late watching trash TV on my phone or in our bedroom.
My evening routine has really suffered over the last few years. I find myself desperate to escape into TV which really doesn’t serve me and I’m still in the process of undoing these bad habits.
So in the last month I’m being religious about my evening routine:
- Having an Epsom Salt bath with added Boron 2 – 3 times a week (I’m deficient in Boron so I’m adding a bit of Borax powder to my baths)
- Head into the Infrared Sauna (dry brush before w/ essential oils) 2 – 3 times a week
- Hot Yoga one evening a week, then a cold shower
- Date Night one evening a week
Other things to note:
- Lights off at the latest by 9:30 pm
- Installed a timer on our modem/router so wifi turns off at 9:30 pm (that way I don’t have an excuse to still watch TV later)
Last but not least, we know that a vitamin D deficiency is linked to those who live with MS. Unfortunately, the data is not conclusive around causation but there is correlation to MS flares and low vitamin D. After working with the nutritionist last summer she had urged me to go off of my Vitamin D supplementation. I have no idea if that was a contributing factor in the flare. Since February of 2023 I’ve been tanning 3 times a week to produce Vitamin D in my body. And now that it’s nice out I’m trying to get at least 1 – 2 hours outside during the day. I’ll use the D Minder app to track my time and based on the sun’s position it will calculate how many IUs of Vitamin D I’ll be able to produce based on the sun’s presence.
That all being said there is a lot going on. There are so many puzzle pieces I’m trying to figure out lately and it’s been taking a toll on my mental and physical health. I’m finally ready to share where I’m at as always to help anyone else in my position and also use this blog as a form of therapy for myself as I process everything that’s going on. I’ll keep you updated as I move along this healing journey.