You’ll have to forgive our lack of updates. 2017 started with another downturn in my condition. I have been having a lot of issues with writing, and reading for that matter. So I have been limited in what I can do. Kenny’s time is spent working, and trying to keep the house running smoothly. I have an amazing husband.
So, you’ll have to forgive my bullet point type form. This was it’s easier for me to write out, to read, and to keep track of where I’m at. So without further ado…
- Since the last update, I got the results from the 2 tier Lyme test back. It was negative, which we expected. You would think after all these years and hundreds of thousands of people with Lyme Disease every year, that they would come out with a better test.
- Due to the negative test, my referral to the infectious disease specialist was denied. My insurance was NOT happy. The woman told Kenny, “Would it hurt them to just look at her?!”
- A second referral to ANOTHER infectious disease Dr was submitted, and rejected as well. Yay?
- My naturopath said she was done with referring me out. She said that she still felt strongly that I was having cardiac issues, arrhythmias, and she wanted to start me on a heart nourishing formula. During my heart test I would have my monitor trigger either, during and after a lot of my seizures. So her gut was telling her that this needed address. I am so glad she listened. I started taking the drops on Jan. 17. I had a seizure almost exactly 1 hour later. I had 2 more that night, 1 the following day, and 1 on the 21st. This in itself is a miracle, and a welcome relief!
- On Jan. 25 I started a new treatment for my neuro Lyme. We had tried and tried to get me in to get short term IV antibiotics to help get this under control. My Dr doesn’t push them at all and prefers the natural methods of treatment, but for patients in crisis, as I was described, it is the way that gets a handle on things and pushes things back so that we can get footing and move on with natural treatment. Let me tell you, this stuff tastes AWFUL, but it has already started making a difference.
- I started blacking out on Jan 22. This is part of what prompted the start of new treatment. I had been in the kitchen standing at the sink when my vision shook really hard and I knew something was about to happen as I felt myself sway. I yelled for Kenny right before I fell backwards. Everything went black and I felt my butt hit the floor. I came to with Kenny beside me. It hasn’t happened that seriously since then, but there are times where I would pass out over and over and over. I think 3 times was the most.
- Which brings me to my next part of the update… I was started on my new treatment on Jan 25th. Since then: My speech continues to get better. I have walked down the steps once in the last week! My ticking and shaking has decreased as well. My seizures did have an uptake once I started this, which is common due to die off, etc, they are still better. I only 1-3/week now! My goodness has that every been a blessed reprieve! My blacking out has pretty much stopped too. I do occasionally black out still, but it isn’t very often anymore.
- My paralysis has also improved. It usually comes in clumps. I’ll be going along 3-7 days without any issues and then I’m slammed with several days of paralysis off and on throughout the whole day. Like right now I’m sitting here at our dining room table in my wheelchair, but am unable to move my legs as I have paralysis in them. This, I might add, feels so strange. I can feel my legs, with some tingling in them and this heavy feeling, but am unable to move them because the signals from my brain to my legs don’t work…
Interjection. Kenny here. Just to explain how things have been, Tash started writing this on Feb 27th and at the time I’m interjecting, it’s March 11th. Sometimes it just takes time… She tries to get her thoughts together… sometimes it just doesn’t work. Luckily we have another appointment coming up this Tuesday so we’re, once again, finding ourselves at the point of hoping that this next appointment hold some answers. Even one right now would suffice. Back to her article..(which has obviously come and gone, and will be posting an update soon about the big changes that are the process of happening)
9. So a couple days after starting writing this I had a sudden uptake in my seizures, blacking out, and paralysis. Leading up to the full moon is always rough, but it was especially bad this month. I have started having 1-2 seizures a day, blacking out multiple times a day and paralysis so that I can’t move anything more than my head. I am not up to 2-3 seizures a day, along with my heart acting up.
10. Around this time I also started having issues with my vision, along with another symptom that I think I have mentioned before…. my mouth tingling. Ok, so that used to be all it was. Mouth went numb, tingling, burning, and that was it. It had started with just the right side of tongue, then spread to the right side of my mouth. It is now my whole tongue or mouth. It is no longer just that.
Part of why I have been having issues finishing writing this is that my thought processes and concentration are something I am dramatically struggling with right now. It has been 5 more days since Kenny interjected and I have been unable to write anymore. So, with that being said… I will wrap this up, as we have another update and more news to share very soon.
Thank you again for everything <3