Wednesday, September 29, 2021

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:


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!


Anonymous said...

Hello, do you know about INOSINE intake if one has not only CFS/ME, but also Autoimmune illnesses ? (in my case Hashimoto and Celiacy)
I would be glad for some infos or links on this:))
Thankyou, and all best!!

Sue Jackson said...

Anon -

No, I had no idea that inosine was used for other immune disorders! Have you found it helpful?

It's been a BIG factor in my son's and my improvement for many years (even though I happen to be going through a rough patch right now).