I thought it was time for another update, since it's been almost a month already since my last one! You can look back at that post, News from Our House: Tests, Treatments & Improvement! or, if you prefer, watch the video summary, for more details on my year-long relapse, my quest for answers, and some of the new treatments I'm trying. In brief, I found out that my Lyme disease was badly flared up and not at all under control, as I'd assumed. As a result, a bunch of old viruses were reactivated, and my immune function was pretty bad, with super-low IgM and CD57 (again, details in that earlier post).
Treatment Progress So Far
So, I was a little optimistic at the end of that last update post when I said I was back to my "normal" baseline from before my year-long relapse. I'm definitely feeling much better and able to do a lot more than I have for the previous 11 months, but it's not consistent yet. I am having far more good days than this past year but still some very low-energy, achy days in between, too. Here's what I have tried so far and what's working:
As I mentioned in that last post, I immediately began to feel better just from increasing my existing Lyme treatments (a combination of A-L Complex (Byron White protocol) and Samento). The Lyme specialist pointed out that I was not actually at the maximum dose of either one (a surprise to me!), so I worked my dose of A-L Complex up from 15 drops twice a day to 20 drops twice a day. And I gradually increased my dose of Samento from 15 drops twice a day to 30 drops twice a day. I began to feel better almost immediately, just from these two small adjustments to what I was already doing! Again, this was a huge surprise to me because I didn't have any of my obvious Lyme symptoms (for me, knee pain and nausea) on the lower doses. I was "just" exhausted, had no energy, and had flu-like aches, all of which I associate more with my ME/CFS. That's another lesson in how interrelated all of this is; the infections behind the scenes are a big part of ME/CFS.
I also started a new Lyme treatment that I'd read about in a Johns Hopkins study, Japanese Knotweed. The study found that this herb--and several others--were more effective than doxycycline and other prescription antibiotics against Lyme in the lab. I started to feel better within about a week of starting it and have been gradually working up my dose. Earlier this week, I was up to 4 capsules in the morning, 1 in the afternoon, and 4 in the evening (working up to 4, 4, and 4) when I began to run out. Oops! I had to reduce my dose the past 36 hours; I'm hoping my new bottle arrives from Amazon before my evening dose! Each time I increase the dose, I experience a Herx reaction (temporary worsening of symptoms that indicates the treatment is working to kill off the pathogens) which usually presents as worsened fatigue, no energy, and sometimes mild aches. That tends to last for 1-3 days, so I wait until I feel good for a couple of days in a row before increasing the dose again. Hence, the ups and downs with good days and bad days!
These are not going as well so far! I started with Mega Mucosa, which is an immunoglobulin complex, with some other ingredients (you can read the label at the link). I know I need this because my IgM is so low (which means I'm not making antibodies to new infections). Unfortunately, it upset my stomach, caused diarrhea, and resulted in severe fatigue. I gave up on it after a week and check in with the Lyme specialist. She suggested trying it again but starting with a very low dose and slowly working up, which is excellent advice, but I have put it on the back burner for now.
Once I get my dose of Japanese Knotweed up and steady again, I'm going to try adding (slowly and gradually!) Transfer Factor Multi-Immune (we buy it through our practitioner's office). Eventually, I will also try SBI Protect, but I am putting it off since it is also an immunoglobulin supplement, like Mega Mucosa; I'm hoping if I can first get the infections better controlled, perhaps I won't react so badly to the immunoglobulin treatments.
NOTE that my son and I both already take low-dose naltrexone, daily glutathione nasal spray, and inosine, which all help to normalize the immune system and have improved both of our conditions immensely and improved exercise tolerance. You can read about all three treatments (all inexpensive and easily accessible) here.
Treating Other Infections
As I described in that earlier post, my tests showed a bunch of reactivated viruses. No big surprise to see one or two in anyone with ME/CFS, but that many all reactivated at once is unusual for me! I already take several herbal antivirals daily: olive leaf extract, monolaurin, and emulsified oil of oregano, and I had already increased my dose of olive leaf to 1500 mg twice a day. The Lyme specialist (who ran the tests) suggested I also add in L-lysine, which is especially good against herpes-family viruses (very common in those with ME/CFS). We've taken this before and still had some, so that's an easy one. I've tried not to change too many things at once, but in between dosage changes of the Japanese Knotweed last week, I added in L-lysine, first one capsule a day and now 1 capsule twice a day (working up to 2 capsules twice a day).
New on the Blog and on YouTube
My big news recently is that I started a YouTube channel about a month ago! This is something I've wanted to do for a while, both in order to connect with more people and to provide an alternative for those with chronic illness who might have trouble reading blog posts but can manage to watch (or even just listen) to a video. The channel is for both of my blogs, so it includes videos about books and reading, as well as videos about living with chronic illness. Sometimes, I will record videos to go with blog posts and other times, the videos will stand on their own. Here are the three chronic illness videos I have posted so far:
- Rachel Horton, blogger and health coach interviews me about ME/CFS, living with chronic illness, and the pandemic - this was a warm, casual conversation between Rachel and I (and the start of a great friendship!), so it feels like listening in on two friends. Feel alone and want to be around people who "get it"? This is the video for you!
- ME/CFS and Lyme: Tests, Treatments, and Improvement after a Year-Long Crash - this is the video I mentioned that is a summary of my last update post.
- 5 Inspiring Books for Those with Chronic Illness - this one parallels this week's Weekly Inspiration post, all about the books that have most supported, helped, and inspired me in my 19 years with chronic illness.
I am still in the beginning stages here, learning all about YouTube, video editing, and more, so please tell me what kinds of videos you'd like to see!
Here on the blog, it's been a while since I've recapped my posts, so here are my main posts since the beginning of the year, not counting reviews (see below):
What We've Been Watching and Reading
Again, it's been a while since an update, so there's a lot of fun stuff to report on!The Peanut Butter Falcon, which was uplifting, heartwarming, and very funny. Highly recommended by both of us (currently on Hulu and Amazon Prime). You can read my full review and watch the wonderful trailer at that link.
We also watched three other funny movies (all with heart and warmth!):
- Grandma, starring Lily Tomlin and Julia Garner, so you know it's good!
- Blow the Man Down, a dark comedy about murder and the sinister underbelly in a quiet Maine fishing village. A bit darker but still amusing.
- On the Rocks, starring Bill Murray and Rashida Jones (another top-notch pairing!), a warm and funny drama about marriage and a father-daughter relationship. Lots of fun.
We've seen some great TV this winter, too!Veronica Mars, since we watched the first three seasons, the recent fourth add-on season that takes place 10 years later, and the movie! We enjoyed them all. The series (and movie) stars Kristen Bell as a teen (and later, adult) detective, helping her dad's PI business and trying to solve her best friend's murder. It is definitely dark at times, but if you've seen Kristen Bell in anything, you know she brings a great sense of humor, comedic timing, and snappy dialogue to everything she does. It's well-written, too, with a great supporting cast. Read my full review and watch a trailer of the TV show at the link.
Other TV shows (reviews and trailers at the links) we have been enjoying:
- Home Before Dark is a crime show with a great twist: the detective is a nine-year-old girl! We both loved this intriguing, suspenseful, funny show and can't wait for season two.
- Halt and Catch Fire is another four-season series (now on Netflix) that kept our attention throughout, all about the computer industry from 1983 to 1990, as technology soared from clunky desktop computers with monochrome monitors to laptops to the internet. Great cast and an engaging drama.
- Lakefront Bargain Hunt is our new stress reliever! We don't usually watch HGTV or much reality TV of any kind, but we are loving this show about families looking for their perfect lakefront house at a reasonable price. We can dream ...
As far as books, I always have one in print and one on audio going, so I've read a lot of great ones in the past couple of months! You can check out my February Book Wrap-Up on YouTube for a brief summary of the seven books I read/listened to that month (with a wide variety of fiction, nonfiction, humor, YA, and a graphic novel). If you enjoy reading, you can also take a look at my monthly summaries on my book blog, Books Read in January and Books Read in February, with links to my reviews.Not the End of the World by Kate Atkinson, a collection of short stories. I don't often read short stories, but I really enjoyed this collection of unique, clever, strange stories that mixes real-life with elements of fantasy.
For something light and fun, you can't beat The Spellman Files by Lisa Lutz, a funny novel (and start of a series) about a dysfunctional family of PIs (even the pre-teen daughter helps out and enjoys recreational surveillance after school!). It's narrated by older daughter, izzy, who's a bit of mess but can't escape her crazy but lovable family.The Heart's Invisible Furies by John Boyne, a novel that quickly found its place among my Top 10 Books of All Time. It's the story of the life of Cyril, a man born in Ireland in 1945 who discovers as a teen that he's gay--not a great time or place to be gay! The novel checks in with Cyril every seven years, and though Cyril experiences lots of hardships and tragedies in his life, the novel is also very, very funny. It brought me to tears twice but often had me laughing out loud, too. Any novel that makes me feel that much is top-notch in my book!
I could go on about favorite books forever, but this post is already too long! Just check out my book blog posts and/or videos for more recommendations.
How have YOU been? And what have YOU been watching and reading lately? Please share your thoughts and recommendations in the comments below!