Quick Summary:
After several months of continuing improvement in 2022, my health started to decline 3-4 months ago.
I can't sugar-coat it. It's been really, really rough. I thought I'd hit rock bottom before, but this was rock bottom. I feel like I've lost all the gains I experienced in 2021.
As depressing as that is, I'm doing about 10% better than 2 weeks ago, and I'm 100% confident I can regain what I lost.
IN DEPTH:
I was doing so well last fall, and that improvement continued into 2022. My energy and stamina improved so much that I was able to hike up to the 5th floor twice a week every week, instead of just once a week. And it was easier each time.
There were even days I even felt stronger in the mornings, which hadn't happened in almost nine years.
My fatty liver and bloated belly actually started shrinking for the first time in five years -- down to almost 41 inches from a little over 43 inches.
Then about 3 months ago, things started slowly getting worse to point where in early August I could barely walk the six feet from my desk to my kitchen counter.
It took almost 3 months to figure it out what went wrong, but I think we have. And while there are probably other factors involved, here are --
THE THREE MAIN CAUSES.
1. I started a protein powder back in late February sweetened with organic maltodextrin. It helped me walk further and stand even longer than last fall by increasing muscle glycogen levels.
But in hindsight it came with a steep price. Studies, some as recent as this year, are showing that maltodextrin can mess up the gut. It increases the growth of bad bacteria while decreasing the good guys. It also increases intestinal permeability -- a factor involved in many health issues, including fatty liver.
In fact, in hindsight my waistline stopped receding just around the time I started the protein powder. So about mid-June I stopped it, and within a week my energy levels tanked. I'm currently trying to find other things to give me those lost 500+ calories, using foods I can tolerate. My caregiver Essy made some peanut butter cookies yesterday...so we'll see how that goes. Any suggestions -- please send 'em my way. 😛
2. In an attempt to figure out what was causing the setback and/or the flareup of certain symptoms, I stopped several supplements during the last three months that in hindsight have always been helpful -- especially those two special forms of folate: folinic acid and methylfolate.
Things would seem to get better, so I thought I was on the right track, but again in hindsight, they just got even worse. So I'm restarting these one at a time, with 4-5 days in between, so I can know for sure what's helping and what's not. The folinic is indeed helping.
3. But perhaps the main cause of this relapse is I started tapering off of a nasty drug I've been on since 2005, called Klonopin.
Klonopin has been prescribed for decades for ME/CFS patients because unlike Valium, it also has anticonvulsive properties that help both that restless "wired but tired" feeling, but also reduce actual muscle cramping and twitching.
I had tried to taper off back in 2011-2012, and got down to 20% of my original dose. But my doctor at the time felt it was taking way too long, so she put me back on my original dose!
This time I was feeling so much better overall that I thought, well -- now's the time to try again. I was certain it would be easier.
So I contacted my current doc and started tapering again. This time however, we cut the dose too quickly, and my reactions became severe. But not right away, which is why it took so long to realize this was a factor.
My stress intolerance, anxiety and irritability all slowly but surely skyrocketed. I could NOT sit still, couldn't sleep more than 3-4 hours a night at best, nor nap during the day. I just could not settle down both mentally or physically. I started sweating profusely, itching all over, and was getting restless legs 90% of the time, even during the day. This has calmed down a bit, but it was sheer hell.
I suspect this almost complete inability to calm down helped exacerbate all the other symptoms and contributed to my loss of energy because I was burning up all my calories in that super-heightened state of panic. Stress plays a HUGE factor in chronic illness, so this faster taper clearly wasn't helping on any level.
Fortunately my current doctor is very understanding and has agreed to increase the dose back to that which I was taking up until May, then allow me to stay at that until I feel stabilized -- and then taper slowly from there.
I'm grateful that it didn't get worse than it did. Horror stories abound on the web of people quitting cold turkey, only to end up in the ER with full-body seizures, extreme anxiety to the point of paranoia and psychosis, and...worse.
So from now on, slow and steady wins the race.
Thanks as always for reading this update and for your amazing support. I'll be back in early November with BETTER NEWS, hopefully much better. Sound like a plan?
In the meantime I hope you've had a great year and are enjoying the summer!