It's been a little while since I've given an update on here, but lots has happened.
Last week Tuesday I had a what they call a 'stinger'. Basically what happened was I turned my head and I had this extremely sharp burning pain shoot up to my head. And it felt like and electric shock. I have had this sensation before...but the unusual part was that it didn't just go away on it's own. So when Thursday morning rolled around and I was still feeling it I decided to go see the chiropractor. She explained that there's a muscle going from the top of my neck to the edge of my shoulder, this muscle is almost shaped like an M and there are so many nerves in between the arches, so when the muscle gets super tight all the nerves get pinched. And my neck is always very tight which is why it lingered. She was able to do some massaging and needling to try calm down my muscle. And for the rest of the day I kept heat on it.
Thursday was also the day we had to drive back to Mississauga for another appointment with the Lyme specialist. The travel really flared me up, so when we arrived that night I crashed....but I didn't sleep (this is insomnia).
Friday, mid-morning, we went for the appointment. I spent the first hour doing a food, supplement, and environment screening. This will help me to determine what I need to eliminate, and what I can safely tolerate. This is essential in the healing process (since some of the things I need to eliminate, like mold, actually could interfere with, and make the Lyme treatment ineffective). After that we spent the next couple hours with the doctor discussing Lyme. He talked in great detail about it's history. I'm glad I had family with me at this point because I felt like I was going to pass out or my head would explode...so I couldn't really absorb or remember what he was saying. At the end he talked about his method of treatment. He uses bioreonance therapy. Essentially what his machine will do is read the wave lengths of the Lyme bacteria cells, and then it will create electromagnetic waves that are the exact same pattern (except opposite).
"by stimulating a change of "bioresonance" in the cells, and reversing the change caused by the disease. The devices would need to be able to isolate and pinpoint pathogens' responses from the mixture of responses the device receives via the electrodes. Transmitting these transformed signals over the same electrodes is claimed by practitioners to generate healing signals that have the curative effect"
I'll be going for treatments every 3 weeks (starting June 19th) for roughly a year. And I'm really hoping it will be effective.
This doctor has lots of plans for the future, but he didn't give tons of advice for how to deal with the present. I still am looking for help to deal with the insomnia, weakness, lack of energy, joint pain, and pain all throughout my body. I am hoping to meet with a new physiotherapist who also specializes in pain management, to help me get through the day to day battles.
My current physiotherapist, and chiropractor have been focusing on the effects of my concussion, but have been a little bit stumped by all my symptoms related to Lyme. So it will be good to get a fresh perspective.
I covet your prayers at this time. I really struggle to manage the pain, and understand its purpose. and I don't want to live like this. I want to be able to spend more time with people, and be able to attend church more regularly (it's been four months since I've been to a morning service), and just be able to do more in general...as oppose to spending nearly 90% of my time in bed (which is very isolating).
Thanks so much for all of your continued love and support. I could not get through without it.
Thursday, March 30, 2017
This past week I met with a new specialist in Mississauga.
Leading up to it I was quite anxious. I have grown tired of Doctors not knowing how to really help me, and so I couldn't help but worry this time around. The night before I didn't really sleep.
Bright and early Tuesday morning we (my dad and I) set out for Mississauga. I felt fairly sick a majority of the way, but thankfully the trip wasn't too long, and I could take lots of breaks.
The appointment mainly consisted of the doctor getting to know me and all of my health history. While I was sharing, he commented that even some of the things I had as a kid were signs of Lyme. I don't think we'll ever be able to pin point when I got it...but the important part is, I know I have it, and we have to treat it. Some people wonder why it only started getting really bad over the past year. Well the thing is, people can have the bacteria in their body for years without it making a huge impact. And that was the case for me...it would try to surface often (in all the times I did get sick), but my body was still strong enough to resist it. However, when I had a concussion last Spring my health, immunity, and strength all went down....and this is when the Lyme really took off.
During the appointment they also did some bioresonance testing to determine multiple things. From this we discovered I have a very strong reaction to mold, I've got lots of parasites, and 4 co-infections.
He gave me some tips going forward. 1. Get a really good water filtration system (vital for maintaining good health). 2. Do my best to clean my environment of mold (the Lyme treatment won't be properly effective if I am still dealing with mold). 3. I have to make some dietary changes as well.
As we were walking out of his office towards the receptionist's desk I started feeling really light headed and weak. Apparently one of the ladies in the office noticed (she said I looked pale and green), and got me to sit down and then eat and drink something. One of the biggest downsides to being nauseous so often, is that you don't always realize when you haven't eaten for nearly an entire day until things like this happen.
I've booked another appointment next week where they will finish testing, and will finish explaining the whole treatment process (it's impossible to fit it all in in the first visit). At that visit they will also start me on something they call a drainage. Which is a 10 day process to break down the shell/membrane surrounding the Lyme bacteria. Because only once it is expose can they treat it. The downside of it being exposed is that it will effect my brain....but they assured me that they would give me something so that I wouldn't feel like I was going crazy....yikes.
I spent that night in Burlington (with grandparents) so I didn't have to drive all the way home right away. But we made it home the next morning.
The whole trip exhausted and overwhelmed me. When I got home I had about zero of my strength left, so I just curled up in a ball and cried. I spent the rest of the day trying to let everything just sink in; and also unwind. But one of the problems with Lyme (one that I really struggle with) is that there is lots of bacteria in your brain, and so sometimes emotions and thoughts can't be controlled. I did, however, get some relief later in the evening.
This morning started off relatively ok, but I spent most of the day in bed. And then in the afternoon I went to my chiropractor. My neck was pretty horrible (as usual) so he spent a majority of the time trying to work through it. I got home and went right back to bed (which is where I spend almost 90% of my time now). I haven't really felt relief yet. And when my neck is as sore as it is right now, there is often quite a bit of pressure and pain in my head. My joints and back are also not doing so well at this point. Hopefully I will be able to get some sleep soon. It may help take some of the edge off.
The battle continues.
Tuesday, March 21, 2017
During the past few weeks a lot has happened.
I went on a family trip last week. It was eye opening for me. And I began to really see what living with Lyme looks like.
Travelling is really hard on my body, and I have to take things slow. Make more stops, use earplugs, sunglasses, and whatever I can to block stimulants out. By the second night my body had had enough and I had to crawl/hunch rather than walk...not ideal. By the time we arrived at our destination (15+ hours of driving later), I crashed, and didn't really get up until two days later so I could enjoy a few hours on the beach. Even that tired me out. The next day we planned to start the trip home. I'll admit, I was terrified. I didn't want to put my body through all that extra pain again. I ended up flying most of the way home. It increased the pressure in my head, but overall it was a much quicker way of getting home, so I'm glad I chose it.
Lot's of people have been asking whether I enjoyed the trip or not. I have a hard time answering that. I will say this though, I did enjoy seeing my family getting to relax and get a break from the busyness of their lives.
Over the past few weeks my joints have increasingly been getting worse. At first it seemed more gradual, but by this past Sunday I had a really hard time walking (especially noticeable when walking up stairs), and, that evening, out of the blue my wrist started bruising and swelling for no apparent reason. Since then things have gotten worse. I spent all of Monday in bed, and this morning I woke up and couldn't move my right knee. My elbows, wrists, left knee, ankles, and neck joints are really not giving me an easy time either. I had physio this morning. Even my physiotherapist is pretty surprised at how fast things are changing. She's been mainly focusing on working in my neck and head until this point, but hopefully now she can adjust her treatments and work a little bit more on the rest of me too.
My back is getting worse too. And sleep continues to be a really big challenge.
It's increasingly getting harder to get out. I've been in bed most of the time for months now. But lately it's gotten to the point where, the few times I do get out (only for my appoints and a church services here and there), I try things like wearing makeup and putting on smiles to cover how I actually feel. Sometimes it's easier that way. I so badly want to be able to just continue on with life as if nothing happened. But I can't. And now each time I want to go out I have to be willing to face the reality that I will have to pay for it later with increased symptoms.
I apologize that this has been a pretty negative post, but this is the reality of my life at this point. I struggle to understand why my plans, dreams, and jobs have been put on hold. God is really putting me to the test. And I pray I have the strength to keep fighting.
I was encouraged, and will close with the following words:
"God will take care of us. As the old hymn says: “No matter what may be the test, God will take care of you; Lean, weary one upon His breast, God will take care of you.” (God Will Take Care of You, Civilla D. Martin, 1904). I don't know exactly how that care will look. But I know that, as the scripture promises, if we put God's commandments -- love God, love your neighbor as you love yourself -- first, our needs will be provided for, and we will be able to offer this sanctuary, this place of rest, to others for years to come."