Post Tysabri Life
I finally came off Tysabri, am past the scary phase, am thriving, and am ready to talk about it!
My last post was me talking about how IV steroids made me feel like crap. The goal of them was to reduce my inflammation, but all they seemed to do was make my entire body swell (I gained 15 lbs in 1 week from inflammation!) and ache. It took me the entire month in between steroid infusion appointments just to lose the weight and get back to feeling "normal" again. I couldn't force my body through the turmoil.
Fortunately I have a compassionate doctor who listens to me, and he agreed that it was not worth it for me to continue on the steroids. He agreed that I should continue on my cannabis oil treatment of inflammation.
No, I didn't forget to mention this, I was just shy of talking about it at first because it was new to me and I was still learning. I was very nervous about coming off of Tysabri and not having my immune system supported by something, as I had done it before and it went very badly. So I did a ton of research and found a natural supplement for our immune/nervous systems; Cannabis Oil!
To prevent the shock of withdrawal on my body, for 1 month before I came off my medication this time I used cannabis oil to help control the inflammation in my body. My doctor was aware of my plan to do this prior to me starting, and while he had his reservations he supported my need to exhaust this as a treatment option.
For dosing with cannabis oil, it was sort of an experiment with my tolerance and how I felt overall. I used 30grams of the Rick Simpson phoenix tears cannabis oil, over the course of 5 months. This allowed me a good amount of time to be able to increase my daily doses from a rice-sized amount twice daily, to an entire vial-worth daily, without unpleasant side effects. It was my goal to use cannabis oil to support my body withdrawing from the medication, and prevent it overreacting to the absence of pharmaceuticals.
As I mentioned, starting out I would only take a rice-sized amount of cannabis oil orally. I would do this by taking a little spoonful of honey, placing the small dose of oil on top of the honey, and then swallowing the entire spoonful. I did this as it was my goal to get the cannabis oil to absorb in my stomach rather than my mouth, as it is metabolized differently each way.
The body becomes used to the cannabis oil, and the 'high' feeling dissipates with regular usage. One website I came across suggested: It takes the average person 3-5 weeks until they are able to ingest 1mL (1 gram) of Cannabis Oil per day. Once you are able to ingest 1mL/day (0.25mL per dose, 4x/day), and to continue at this rate until your symptoms resolve. WebMD says about Cannabis Oil, "It takes a couple weeks for your body to know what to do with this new chemical", and consistent use of small doses will help you get through this faster.
As my tolerance for the comfortable body high feeling increased, I increased my oil ingestion to a 1 gram vial every day. I would space it out and have 1/2 vial in the morning, and 1/2 at night. The feeling of being high from this was comparable to the feeling of being on a single tab of Percocet, for me, without the unpleasant side effects (constipation, addiction, etc). It would not affect my work whatsoever.
I used 1 gram daily of cannabis oil for 4 months after coming off of Tysabri, when my risk of relapsing was greatest. I had NO withdrawal symptoms from Tysabri, no headaches, numbness, paralysis or memory loss this time around! I got an MRI done 3 months after coming off the med, and it showed I have a stable burden of disease. This means that I am at as much risk of relapsing off the medication as I was while on it, but now I do not have all the additional risks!
Now I am at a point where I only use a small amount of cannabis oil (1 gram monthly) for maintenance.
This all being said, I do have to add a little disclaimer for legal reasons that I am not "recommending" this to you in any way, but sharing what my experience went like. It is very important to note that I made a lot of changes to my diet which made a huge difference for my health as well (No gluten, reduced sugar, no alcohol, and more). It is my advice that you talk to a naturopath to receive a prescription for cannabis if you are interested in trying this yourself.
I also recommend getting your doctor to test your vitamin B-12 levels and asking for a B-12 injection if your level is low. Even if you are "within normal ranges" based on BC's reference ranges, you can still be symptomatic of B-12 deficiency. B-12 deficiency symptoms look very similar to MS!
I know this is a lot of information. Please feel free to ask me anything! I am working on simplifying my explanation of this for educational purposes, but it is all still very new to me.
Good as new. ♥