News From Our House: Ups and Downs

My son and I both have ME/CFS, an immune disorder, and Lyme disease, plus he has two other tick infections, bartonella and babesia. We've been battling these chronic illnesses since I first became ill in 2002. It's been about two months since my last News From Our House update, with lots of ups and downs for me and nothing but good news for my son!

My Update: Up, and Down, and All Around

I would say that overall, I am still not back to my pre-2020 baseline (I went into a bad relapse beginning in March 2020), though I am generally doing better than I was six or nine months ago.

Improving Immune Function

I was feeling frustrated by feeling like I was stuck and not quite back to my previous good functioning. I could tell that my immune system was still a bit off (more than usual!) and wondered if I was perhaps still feeling the effects of my second COVID vaccine (entirely possible). Then, it occurred to me to check the calendar to see when we had last taken a break from inosine. It was about 6 months ago! We're supposed to take a two week break (at least) every 2-3 months.

Inosine is an immune modulator. Since the immune dysfunction in ME/CFS is neither fully deficient (as in HIV/AIDS) nor fully overactive (as in autoimmune diseases) but a mix of the two, immune boosters and immune suppressants don't work for us. You can read more about the specific kind of immune dysfunction in ME/CFS in my post on Immune Abnormalities in ME/CFS. So, inosine, an immune modulator that helps to balance and normalize the immune system, has helped both of us immensely over the years, resulting in fewer crashes, less severe crashes, better tolerance of exercise/exertion, and generally reduced symptoms. However, like all immune modulators, it only keeps working if you constantly vary the dose so your body doesn't get used to it, which includes sometimes taking a complete break from it. You can read more about inosine, which is cheap and readily available, here.

So, I texted my son that it was time for our 2-week break from inosine. We did that and then started back on it, and ... like magic, I felt good again! Those lingering symptoms, reduced stamina, and increased exertion intolerance all cleared up, and I felt back to my pre-relapse baseline. What a relief!

That improvement came just in time to help pack and move my 96-year-old father-in-law from Independent Living to Assisted Living, and we had some very long days that I managed without crashing at all! We got him moved in, and I helped him through some transition issues the next day.

A Virus Hits Me

The following day, a Friday, we were enjoying an outdoor take-out dinner with good friends around a campfire when I suddenly felt awful. Out of the blue, I was achy, exhausted, and even nauseous. I had no idea why, but we headed home where I collapsed on the couch. The reason behind the unexpected crash became clear later that night when I developed a full-blown stomach virus. Like many with ME/CFS, I rarely catch any kind of virus, but I suppose that recharging my inosine normalized my immune system enough to catch this one--lucky me! It's been going around locally, felling even some of my healthy friends. It hit me hard, and I was in bad shape for several days: horribly achy, feverish, flat on the couch, and subsisting on clear broth, plain potatoes, and an occasional piece of sourdough toast (actually a treat for me, since I don't usually eat bread). Gradually, I began to feel better and get back to a more normal diet.

A Mystery Crash

I had a few good days and then last week, I crashed again, with immune symptoms (sore throat and flu-like aches) and exhaustion. It's now been 8 days, which is very, very long for me. These days, when I am in good shape, an over-exertion crash is usually mild and lasts less than a day, and crashes triggered by infections are rare for me. But, with the length and severity, there must be some sort of infectious trigger behind this. Maybe that stomach virus is still floating around in my system, keeping my immune system hyper-active? Maybe I was exposed to someone's cold or other virus? It's driving me crazy not to be able to figure out cause and effect and fix it. I have increased all of my herbal antivirals, just in case, but the crash continues.

Tomorrow is our 32nd anniversary, and with my father-in-law now in Assisted Living, we can begin to travel again (in short spurts), so we have reservations at the beach for two days. I went today to our Lyme specialist and got the IVs that my son usually gets there: Myer's Cocktail (a standard combination of vitamins and minerals) and a bag of glutathione. Glutathione is essential to energy production, detox, and immune function (more on glutathione and different ways to increase it here), so I am hopeful it will help my immune system get back to normal. However, getting the IV did require a 45-minute drive each way! So far, a few hours later, I am tired and still achy, but I am hopeful that I will feel better by tomorrow so we can enjoy our trip.

I have other updates I will save for another time, like lab tests finding two molds in my system. I haven't been able to try any treatments yet, with all this other stuff going on!

I did discover, thanks to the stomach virus, that I do still need my Lyme treatments. Since I missed them for a few days when I couldn't hold much food down, I thought I'd try going off them, but after about 5 days, the nausea (a key Lyme symptom) returned, so I immediately got back on them.

 

My Son: Nothing But Good News

On the other hand, my son has had the best few months he's had in many, many years--probably the best he's been in over a decade! He had his first real, almost-full-time job this summer, an internship in his field that he is still continuing into the fall. He has been working 30+ hour weeks--and managing it with no problem! He is so happy to be productive and functioning, and we are all absolutely thrilled to see this major step forward. It really feels like a miracle, after 17 years of often devastating chronic illnesses.

At his last visit, his functional medicine specialist, who's been a big part of this improvement, asked what we felt had the biggest positive effects, to get him so improved. Some things that came to mind:

• Diagnosing and treating dozens of pathogens in his GI system that not only led to severe and serious GI symptoms but overall symptoms, too (most of the immune system is in the gut).
• Diagnosing severe gluten intolerance and switching to a strict gluten-free diet. Once he saw the severe symptoms gluten causes him (after being off it for a bit), he became very motivated to change his diet!
• Giving up alcohol. He got into some bad habits during college--as most of us did back in the day!--but alcohol is like posion when you have Lyme disease and/or ME/CFS.
• All of the above--plus some other adjustments--have improved his detox abilities, allowing him to finally move his treatment of tick infections (mainly Lyme and bartonella) forward. For reasons unclear (including some genetic issues), he has poor detoxing capabilities and Herxes very severely to even tiny increases in treatment for his tick infections. For comparison, it took me about a month to get up to a high dose of 20 drops twice a day of A-L Complex, the Byron White herbal product for treating Lyme. He has been at it for over 10 years (with both A-L and A-Bart for bartonella) and in 2019 could still only tolerate 1 drop of each, every other day! He has now been able to increase that dose to 3-4 drops of both every day. Those are still tiny doses, but he is making progress and seeing the results!

So, he is feeling good, working, and beginning to see the possibility of a future for himself. He is very happy, which makes this mama's heart happy, too!

 

New Videos & Blog Posts

I've continued to add videos to my YouTube Channel. You can see the full channel, including book videos at that link or my chronic illness playlist here. I've added some new chronic illness videos you might be interested in, including some based on chapters from my book:

• A Plan B Day
• You're Right Where You Need to Be 
• Our Chronic Illness Story: ME/CFS and Lyme

 

And I have recorded a pretty cool Day in the Life video (actually about 30 separate 1-min videos!), so check that one out, too.

Here on the blog, I updated my School Accommodations posts (from 2012!)--essential reading for anyone with sick kids, teens, or young adults. 

 

What We're Watching and Reading

We haven't ventured back out to the theater since my last update. There was only about two weeks between me being fully vaccinated and when the COVID numbers began to rise again! But we've seen some great movies on streaming at home, including:

Find Me - a moving, funny, inspiring road trip through national parks that is poignant and in gorgeous settings. Right up our alley! 

The Nice Guys - an entertaining action/thriller with a great sense of humor, set in the '70's

The Map of Tiny Perfect Things - a teen time loop movie (ala Groundhog Day) with a lot of fun and a lot of heart.

 

And just one TV review recently, of Dickinson, a fun, creative show about the life of a young Emily Dickinson that I am loving! 

I am out of energy, and it's time to make dinner, but if you are interested, you can see my latest book and reading updates on my book blog.

 

How have YOU been? And what have YOU been watching and reading lately? Please share your thoughts and recommendations in the comments below!

TV Tuesday: Dickinson

I got a nasty stomach virus last week and spent several days on the couch. I did get some extra reading done, but sometimes, my brain felt like jelly, and I just needed to relax with some bingeable TV. Dickinson turned out to be just the thing! This smart, funny, slightly modernized version of Emily Dickinson's life is still keeping me entertained.

Acclaimed, Oscar-nominated actress Hailee Steinfeld stars as poet Emily Dickinson. As in real life, Emily and her family live in Amherst, MA, and are well-off and prominent in their local community. Her father, played by Toby Huss, is involved in local politics, and her mother, played by the brilliant Jane Krakowski, takes great pride in her role as homemaker, even though they are wealthy enough to afford servants. The family is completed by Emily's brother, Austin (played by Adrian Enscoe), and her younger sister, Lavinia (played by Anna Barishnikov). Austin is dating Emily's best friend, Sue, played by Ella Hunt, to whom Emily is very close (as in real life). Emily lived during the mid-1800's, so the show is set during that period, with appropriate clothing, styles, housing, etc. However, and this is hard to explain, the show adds small elements of modern time here and there in a very fun, effective way. For instance, sometimes a character, in the midst of a period-appropriate conversation will use some bit of modern slang, as when they are all engrossed in Charles Dickens' Bleak House (which was released as a serial) and one says to another, "Hey, no spoilers!" In the midst of a period dance scene, you might suddenly see some modern moves. The soundtrack is sometimes modern as well. The story uses Emily's brief poems as a framework for each episode, showing circumstances that may have led to her penning the lines. Emily struggles against current expectations for women (to marry, for instance), and though her father adores her and encourages her "hobby" of writing poetry, he forbids her to publish, saying it is not proper for a young woman.

I had heard rave reviews of this show, but as is sometimes the case, it took me a while to try it myself. As soon as I did, though, I loved it! When I heard about it, I thought the insertion of bits of modern culture sounded strange, but it works really well and is so much fun! Steinfeld is delightful as Emily, and it's great to root for her to beat back the contemporary ideals of her time and be true to herself. The plot is intriguing, including not only Emily and her family, but the other young people in town and even a potential romantic interest for Emily. Besides the drama, the show is very funny and highly entertaining. I love the creativity of the writers, in fitting the action of the episodes to Emily's brief poems; the episodes often end with her written words flowing across the screen and being recited. Somehow, the show's creators have taken all of these elements, including an outstanding cast, and woven them together into a wonderful, cohesive whole that I am thoroughly enjoying.

Dickinson is an Apple TV show, so it is exclusively available on that platform. I know--another streaming service? But our free year recently expired, and we chose to keep paying ($5 per month) for Apple TV because its shows that we've tried have all been enjoyable and of very high-quality. If you have Apple TV or are considering it, check out my reviews of Home Before Dark, a crime show featuring a 9-year-old girl detective, based on a real-life story, and For All Mankind, an alternate history of the space race where the Russians got to the moon first, changing the history of NASA (and everything else). It's one of the best TV shows we've ever watched. We are also loving Ted Lasso, have just started Truth Be Told, about a true crime podcaster, and just started season 2 of The Morning Show, but I haven't reviewed those yet.

Dickinson has two seasons currently available on Apple TV, with a third on the way!

Weekly Inspiration: Chronically Jenni Vlogs

As regular readers of the blog know, I started a YouTube channel in February this year, featuring both videos about books and reading and videos about living with chronic illness.

Part of being on YouTube is visiting other people's channels, and I have discovered some other chronic illness YouTubers I enjoy. One of my favorites is Chronically Jenni. She posts a wide variety of videos about living with POTS and EDS, including some great informational videos and some just for fun! But my favorites of her videos are her Weekly Vlogs, where she does a recap of her week, with clips from days throughout the week. What makes her weekly vlogs so great is how open and honest she is; you see the highs and lows, the good days and resulting crashes, and through it all, she is very authentic and honest. I can always relate to her experiences!

Here is her latest Weekly Vlog:

And you can see her full channel on YouTube.

I hope you enjoy Jenni's videos as much as I do!

Free Parent & Caregiver Summit - Monday!

Hi, all! I just wanted to give you a heads up that there is a wonderful free virtual event coming up next week: Parent & Caregiver Summit.

A virtual friend from the Parents' support group I started runs these once or twice a year, and I am excited that she asked me to be a speaker this time! My presentation topic is Caring for Others When You Need Care Yourself, something that many of us can relate to.

And there are LOTS of other speakers, talking on topics relevant to us caregivers: organization, financial needs, cooking, helping disabled kids with school, taking care of your own needs, and more! You can learn more about the summit here (scroll to the bottom for the list of speakers and topics). 

Best of all, the organizer, Moira Cleary, is a busy mom/caregiver of sick kids herself, so she understands your issues and limitations. The virtual event runs for three days, next Monday through Wednesday, but she's set it up so that you can watch the presentations live OR later, whenever you can fit in the ones you're most interested in. It's very flexible. You'll also be able to chat with the speakers and the other participants, just like in a real conference!

I hope to "see you" at the Parent & Caregiver Summit next week! Sign up now--it begins on Monday morning (but again, it's flexible so you can join in whenever convenient).

Throwback Thursday: School Accommodations for ME/CFS

The following posts about school accommodations are written for kids/teens/young adults with ME/CFS, but they are equally relevant to kids with fibromylagia, Lyme and other tick infections, EDS, POTS, and many other chronic illnesses, especially those that are poorly understood by or unfamiliar to most school staff. Also, these posts reference the U.S. system of 504 Plans and IEPs, but much of the information on types of accommodations and information to help educate school staff is relevant anywhere in the world. These posts mostly cover elementary, middle, and high school (primary and secondary schools), but there is some information on college included, too.

I first published several posts on school accommodations back in 2012, so an update was long overdue! A few people had mentioned that some of the links on those old posts were no longer working, and this is certainly information that parents of sick kids still need today. So, I've completely updated them! 

These are the posts that you might find helpful in getting appropriate school accommodations for your child, teen or young adult:

• School Accommodations for Kids with ME/CFS and Related Illnesses - all about the U.S. system, plus tips on finding an Educational Advocate, educating school staff, and more.
  
• Example School Accommodations for Kids with ME/CFS - lists of real-life accommodations my kids (and others) have gotten in school--schools can do a lot more than they think they can!
• Talking to School Personnel about ME/CFS - based on advice to our son on how to explain ME/CFS to his professors in college (but applicable to younger grades, too)
• How Our Son Went from Couchbound to College - just as important as accommodating your child's current needs is improving their condition so they can manage a more normal school experience! This was a summary of what we think helped our son, who missed 90 days of his senior year in high school, start college on time a few months later.
• Effective Treatments for ME/CFS - My full summary of all the treatments that have helped us over the years. We both now lead fairly active, semi-normal lives.

I hope you find this updated information helpful!

I'd love to hear from you and hear about your experiences. You can click on "Post a Comment" below or connect with me on Twitter or on my Facebook page for this blog. There are wonderful, supportive communities in both places!

Weekly Inspiration: Our Chronic Illness Story

Things have been quiet here at the blog this week because we moved my 96-year-old father-in-law to Assisted Living this week, and it was kind of a rough transition for him. He needs the help but doesn't always realize it due to dementia. Moving day, Wednesday was a very long day for all of us, and then I spent three hours with him on Thursday, helping him get settled and trying to help the staff understand his needs. 

As for me, I was quite pleased that I managed all of that pretty well! Of course, I was wiped out and achy by Wednesday night (so was my husband!), but I bounced back quickly and felt good on Thursday, which felt pretty miraculous. This was the first week that I really felt back to my "normal" baseline, after an 18-month-long relapse. I finally remembered to take a break from my inosine, an immune modulator. I normally take a break every 2-3 months, and it had been 6 months - oops! Immune modulators only keep working effectively if you take a break once in a while because your immune system gets used to them. So, after two weeks off, I started back on inosine Monday, and like magic, my energy returned, my stamina bounced back, and I felt better than I had in months! Inosine has helped both my son and I tremendously, and you can read more about inosine (and the complex dosing) here.

So, things were going well, and then ... a really nasty stomach virus hit me on Friday! It's rare for me to catch any kind of a virus, and this one hit me really hard. Today, on Sunday, I am finally seeing some improvement. My stomach is settling down, I held down a little breakfast, and my fever broke overnight. But I am still very weak and wiped out today (typing this lying down!).

So, I thought I'd share a video I added to my YouTube channel this week, Our Chronic Illness Story. I thought it might be helpful for those who are newer to my blog or who only know me through YouTube to hear about our family's journey with chronic illnesses, including ME/CFS, Lyme, and other tick infections. Here, I tell our story from the beginning, The Before, to the present, including the ups and downs and our successes and victories. You can watch it here or click the link to watch on YouTube:

Please share your story in the comments or let me know if you have any questions. Time for me to put the laptop down and rest!