I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I am still having trouble finding the time to write all the blog posts I want to write here! I have a long list of posts planned: an update on my son one year after his relapse and new diagnoses and treatments, research updates, and another COVID-19 and ME/CFS update. But those kinds of posts take a lot of time and energy and research. Things here at my house are still super-hectic.
So, I thought I might try some shorter, quicker weekly updates, about what's going on medically with my son and I and what's going on personally with me, too. I realized that I used to write multiple posts a week here when I first started the blog, using it as more of an online journal (for a little nostalgia, you can check out my posts from July 2006!). These days, much of that day-to-day chatting occurs more on my Facebook page and on Twitter. So, I'm going to try going old-school and posting updates here on the blog more often. Please let me know what you think about that and which kinds of posts you like the best! (Note: I am having a problem with Blogger not showing comments made from mobile devices, so if that's you, you might try commenting on Facebook or Twitter, at the links above, for now, while I try to resolve the issue.)
Viruses and Other Infections
Still no sign of COVID-19 in our family, thank goodness, but as I explained in my post earlier this month, Crashes, Infections, and Treatment ... Oh, My!, my Lyme disease relapsed this winter, which was probably the cause of the HHV-6 virus reactivating in me this spring, causing a long--and these days, unusual--crash. As I explained in that post, I am treating it with Famvir (an antiviral) but started out on much too high a dose and Herxed (worsened) considerably. I'm happy to report that I figured out the dosing. I stopped taking it entirely for a few days, and once I felt better, restarted at just a half pill every 3 days (normal dose is 1 pill per day). It took about 6 weeks, but I am now up to the full dose, taking one pill a day, and feeling pretty good. I am theoretically able to take walks again, though it's been far too hot and humid here!
On the Lyme front, this relapse came just about 15 months after the last one (it's usually more like 3-4 years), so I have added some things to my treatment protocol (based on advice from my son's Lyme specialist). Stephania extract is supposed to help draw the infection out of the tissues where it hides (that's how the Lyme bacteria manages to hang on for so long in many people). I was careful with that one because the label said to be cautious if you take beta blockers (which I do, for Orthostatic Intolerance, OI), but I kept the dose low-ish and haven't noticed any side effects. I am also taking Samento aka Cat's Claw, a common herb used to treat Lyme and other tick infections, which is also supposed to help pull it out into the bloodstream where it can be treated. Those two are in addition to the A-L Complex (part of the Byron White protocol). I recently reached the full dose of Samento (the latest one I added), so I'll give it a month or so at this level and then try stopping treatment again. I haven't had any obvious Lyme symptoms in months. It's all so complicated!
Other Medical Issues
As if ME/CFS, Lyme, and assorted infections wasn't enough to deal with, I've had a couple of unrelated crises come up this past week. Last Friday, I was making a pitcher of iced tea, and when I poured boiling water into the glass pitcher (as I always do), it exploded! The pitcher only broke into a few big pieces, but the boiling water was hurled all over (including straight at me) at great velocity. It hit me in the stomach (again, so grateful there was no glass as well), leaving a pretty bad burn in a ring around my belly button. It was mind-blowingly painful that day, but I used cool water compresses and LOTS of aloe, and it is gradually healing, There's one blister, but otherwise, it's getting better every day. The combination of pain and adrenaline left me completely wiped out the next day, as you can imagine.
Earlier that same day, I began to notice a dark spot on the edge of my vision, so I went to see my eye doctor yesterday. It's not a floater--it's just one dark spot that stays in the same place; I can see it in the right eye when I look to the right. She did a thorough exam--twice!--and couldn't find any sign of retinal problems or anything else, so that's a relief. Just a "wait and see" thing for now; hopefully, it will go away by itself.
Our biggest issue here the past few months has been my 95-year-old father-in-law. He lives in his own apartment in Independent Living but has, of course, been isolated since March. They closed the dining room and have been delivering meals to the apartments, and even though it's not a nursing home or assisted living, the company that runs it has forbidden residents from leaving the building. Bottom line is that we saw a gradual decline in him, mentally and physically, with the isolation. He was OK on Father's Day, when they finally allowed us to visit with him outdoors, but then he declined sharply in the month after that. We treated a mild UTI (which can have a serious effect on senior's cognitive function) and hired in-home care to stay with him three hours a day, five days a week. That just started two weeks ago, but between that and treating the infection, he has improved somewhat. The downside is that it is very expensive, and he won't be able to afford it for long. So, my husband was running over there twice a day (down to once a day now), and I spent many hours on the phone calling in-home care services and assisted living facilities (which are all still on complete lockdown here, so we would no longer be able to see him). It's been a very difficult and stressful situation, and we're not out of the woods yet, but we had a nice socially-distanced visit with him outdoors on Sunday.
Visit with my father-in-law
Just to end on a positive note, among all the stress and crises have been some good times, too. As I've been feeling better, I've been able to start walking again and occasionally meet a friend or two for a shady walk at our local nature center. We've had temps in the 90's with high humidity and heat indices in the 100's the last couple of weeks, but sometimes we can get out in the morning before it gets too bad.
Covered bridge at our local nature center
I even enjoyed an evening out with my two closest friends this week! We got Thai take-out (and ate it at a long table, well-separated!) and caught up - we've missed each other. Then, we relaxed in recliners and watched Hamilton on her big screen TV. Broadway needs to add recliner seats to its theaters! It was my first time seeing it, so I was very excited--and yes, it was as good as everyone has said. The songs are still rattling around in my head.
In the midst of a very stressful day and week, we celebrated my 55th birthday last week. It had been a rough day for me, but I had a very enjoyable evening with my husband and adult sons. The four of us actually ate OUT at one of my favorite restaurants (they have a huge outdoor patio, with lots of space between the tables). It was wonderful to just be out again, the shade and breeze made it a decent evening, and the food was delicious. I even had an 8 oz. beer! Then, we came back home for a mocha cake from a local bakery, and a pile of presents. It was a very relaxing, nice evening with my family.
Wow, my quick update turned out to be pretty long, but you're all caught up now! I'll try to keep up with shorter weekly updates. Let me know what you think.
So, how are YOU? How's your summer going so far?
P.S. If you like to read, join my annual Big Book Summer Challenge over at my book blog! You just need to read at least one book of 400 or more pages by early September. I've had a record number of people sign up this year--I think everyone is happy to have something fun (and safe) to do! So, join the fun (and yes, audios count, too).