Relapse Rollercoaster

On Saturday, July 4th I woke up feeling like my life was turned upside down compared to the functionality of the last 8 months. It took me until 7pm to manage my symptoms well enough to go sit in a lawn to watch fireworks. The next day, Sunday, July 5th was worse. I was shaking life a leaf in church and declined rapidly afterward. Whole body muscle spasms, extreme weakness, moments of neurological paralysis, so much pain, lack of postural control…always hard for me to describe it through brain fog when it was 10 days ago. The day after, Monday July 6th I was terrified at work because I could not work. I had to tell my boss I could only do a little work here and there, which is devastating to me because for the past 8 years I’ve never been able to keep a job. But this one is a perfect home job for me, so I think it will work despite my illness, unless I have a super severe relapse, which I’m trying to avoid.

So what does this mean? Is LDN going to gradually work less and less for me until it stops working all together? It might be working somewhat because I was even more incapacitated before I started it than I am now.

After my last post I only lasted a week off LDN before I couldn’t take the agony any more so I started back on it again after a week. I think the break might have helped it work better a little bit? But not a whole lot. Now that I had that bad relapse last week I am back to taking a break from it again for a few days. This will be the fourth night of not taking it. I don’t feel different off of it like I did the last time I got off it and especially not like when when I first started it where I would feel terrible if I forgot it (so I only forgot to take it once – learned my lesson once..but not because of side effects – because of relapse). And that means it’s not really working for me anymore. We’ll see what happens when I start taking it again this time. I need to wait 1 full month this time.

Everyone I’ve recommended LDN to has benefited from it greatly except 1 girl and even she had a couple benefits. Of course it was worth the 8 months I had of better functionality for once in 8 years (just realized those are both 8’s haha). LDN is still the best thing that ever happened to my illness. 🙂 I’ll never forget the ice skating I got to do on Sundays after church… My brain can’t think of a way to end this, lol. Goodnight. zzzz


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