Coping with Chronic Illness Live Chat Replay
Last week, I hosted a live chat on my YouTube channel about Coping with Chronic Illness. The chat replay is now available. We shared our tips on coping with chronic illness, including managing the heat, dealing with isolation and loneliness, and coping with restrictions. While this was a general discussion relevant to any kind of chronic medical conditions, a few people asked me specific questions about diagnosing and treating ME/CFS and Lyme disease, so I answered those, too. It was a great discussion!
You can watch it on YouTube or watch the video below:
And apologies to all who follow my blog that I didn't post a notice before the live chat. I fully intended to, but between health ups and downs and computer problems, I didn't get a chance. Next time I schedule a live chat, I will post the date and time here ahead of time, so you can participate if you'd like to.
My Health Update
Looks like I last posted a month ago, in mid-June (again, apologies!), just after a mystery crash knocked me down during a week-long camping vacation. I mentioned in that post that I am trying two relatively new treatments for ME/CFS,. I am also continuing to adjust treatments for hypothyroidism:
- Microdosing tirzepataide/Zepbound (a GLP-1 agonist) - I started that last fall, stopped in January, then restarted again in March when I relapsed again (during a time of year when I normally feel much better). After about a month back on it, I recovered from the relapse. In this post, I wrote about why tirzepatide seems to help many with ME/CFS and similar illnesses, why I decided to try it, and my experiences in the first 3 months.
- Sirolimus/Rapamycin - I started this in May, following the protocol used in an ME/CFS study, where many patients improved. I talk more about the study and my own informal survey of patients that led me to try it in this post. I slowly ramped up my dose, from 1 mg once a week to 6 mg once a week. In late June and early July (when I was up to the full dose), I was still experiencing a lot of mystery crash days (I did not have a single crash day last year, from March to August), so last week, I reduced the dose back down to 3 mg (I seemed to feel better during that week when I looked back).
- Treating Hypothyroidism - I wrote all about this topic a few years ago, in a post called Diagnosing and Treating Thyroid Dysfunction in ME/CFS and long-COVID. My thyroid function was much better for a while (probably part of why I did so well last spring and summer), but I could tell my thyroid function was low again, based on weight gain and low energy. I made several changes recently: increased my dose of Armour Thyroid, slightly increased my dose of iodine (after decreasing it sharply this winter based on lab results), and changed the timing of my second daily dose of thyroid meds after finding out that magnesium interferes with their absorption.
- Other Supplement Changes - Fed up with so many random mystery crash days, while I was refilling all my meds boxes last week, I also changed any supplements I had changed since January, back to where they were before (when I was feeling better and was more stable) - quit anything new I had started, adjusted dosing back to where it was in January, etc. I stopped niacinamide and biotin, increased my dose of fish oil back to 2/day, and increased Iodoral (iodine supplement) back to 12.5 mg.
I don't know which of those changes helped (I'm usually more analytical and don't change so much at once, but I was frustrated!), but I've been feeling much better the past week and a half--no crash days and feeling more like I usually do in summer, with plenty of energy. I mean, I still need 9 hours of sleep a night and a nap every afternoon, but in between that time in bed, my energy is good!
So, that's what's been going on! I've been recording a vlog ever since I started the sirolimus so I could record its effects, and I hope to post that next week. I'm going to give this new treatments a few more weeks, and then I will write up a summary here on the blog and probably post a summary video, too.
In the meantime, I included a list of articles and videos about rapamycin/sirolimus at the bottom of that past post. If you're interested in this new treatment, I suggest you take a look at those.
If you're new to my blog, ALL the treatments that have helped my son and I are listed in the Treatments tab at the top of the page.
The real test for me--for both tirzepatide and sirolimus--will be the fall, when I usually go into a months-long relapse that lasts through the winter. And the stakes are high this year--my son is getting married at the end of September!
For now, though, I'm feeling better & trying to get caught up on everything after too many days on the couch! I'm even going to take a chance and make some vacation plans.
How have you been feeling lately?
Have you tried any of the treatments mentioned here - or anything else that has helped?
Please share in the comments below.
