Wednesday, June 09, 2021

News From Our House: End of Relapse, Improvements, and Vaccines!

It's been a while since I posted a personal update, and for the first time in a long time ... it's all good news today!

Ding, Dong, the Witch Is Dead! aka The Relapse Ended

After 15 months of an unexplained relapse that stopped me in my tracks for over a year, I finally began to feel better at the beginning of May!

I explained more about the history of this relapse that began in March 2020 in this update post, where I also discussed what some testing showed and what new treatments I was trying. The bottom line on the cause of the relapse seems to be a combination of my Lyme disease flaring up (it was not "under control" as I'd assumed it was) and a simple adenovirus (a virus that causes a mild cold in healthy people) that triggered the relapse to begin. The real problem was figuring out how to make it stop!

As I explained in that earlier post, my son's Lyme specialist (and now mine) helped me to greatly improve my treatment for Lyme disease, which was the key to my improvement. In my Lyme treatment, I changed/added:

  • Increased dose of A-L Complex (part of the Byron White protocol) from 15 drops twice a day to 20 drops twice a day - I saw an improvement just from that!
  • Added Samento and gradually increased dose to 30 drops twice a day.
  • Added Japanese Knotweed, gradually increasing dose to 4 pills three times a day - this had a significant impact.
  • Just recently added Crypto-Plus, starting at 5 drops twice a day and still working my dose up to eventually 30 drops twice a day.
  • [Note that recent research shows these last 3 herbs/blends to be more effective than antiobiotics in eradicating Lyme disease.]

Of the new immune treatments I mentioned in that earlier post, I ended up sticking with just one, but I think it has helped me significantly: Transfer Factor Multi-Immune (Researched Nutritionals). I've worked my dose up to 3 pills twice a day, and I believe it was a major factor in my returning to my normal baseline. I have also really ramped up the herbal antivirals, to try to get all the reactivated viruses calmed down.

During the first three weeks of May, I didn't just feel better; I felt great! I was full of energy, had all my motivation and "mental energy" back, and my stamina seems to have returned to its pre-relapse levels, which I found stunning. While relapsed, even a slow 15-minute walk could crash me, but suddenly I was able to walk or work in the yard, weeding (while sitting/kneeling and with my heart rate monitor on), for over an hour with no crash afterward! Note that I got to that point originally, able to exert and exercise quite a bit without crashing, through a number of readily-available treatments for various aspects of ME/CFS.

So, with the relapse finally behind me and several good weeks without a crash ...

I Got Vaccinated!

Yes, I finally took the plunge, after months of research and treatments to improve my immune function. In case you missed them, I wrote a series of three blog posts about the vaccines, to give yourself the best chance of a good outcome:

  1. ME/CFS and the COVID-19 Vaccines - background info on the immune dysfunction of ME./CFS, how these vaccines work, and potential issues for us to consider.
  2. COVID Vaccine Experience of ME/CFS Patients - links and summaries of vaccine experience from several different sources, including comparing patient reactions to the different vaccines available.
  3. Prep for ME/CFS Patients Getting a COVID Vaccine - this post on preparation is more widely applicable to anyone with ME/CFS, fibro, Lyme, EDS, or any kind of immune disorder, with things patients can do to improve their underlying condition and short-term prep in the two weeks before the vaccine.

I not only wrote these posts, but used the information in them myself to decide when it was safe for me (and my son) to get vaccinated, which vaccine to choose, and how to prepare. As I explain in the prep post, we were already taking most of the extra supplements recommended by experts, but we did double selenium (to 2 capsules, 400 mcg) and add liposomal vitamin C, which we both felt helped us overall and will probably continue longer-term.

So, with all that research and preparation, I got the Moderna vaccine in mid-May once I had been out of my relapse for several weeks. I was still scared! Polls show a 10% chance of severe, long-lasting relapse with Moderna for ME/CFS patients, so I knew I could potentially be in that unlucky minority. 

And ... well, nothing! I had a mildly sore arm for a few days but otherwise had no reaction at all. My husband and I couldn't believe it. He kept asking if I was feeling OK, and I was still feeling really good (for someone with ME/CFS). I did have a low-energy run-down week last week, about two weeks after my shot--not a full crash, just a week of low-energy--but who knows if that was a delayed vaccine reaction or just the usual mysterious ups and downs of ME/CFS! By this weekend, I was feeling pretty good again.

And last week, my son also got his vaccine. Like me, he so far has had no reaction at all other than a mildly sore arm. That's probably not surprising, since our illnesses have always had similar characteristics and we both take all the same immune treatments, but he's really been burdened by lots of active infections lately (his chronic tick infections and reactivated viruses). But, so far, so good! I'll get my second shot next week.

New on YouTube

I'm still enjoying my new foray into video! If you haven't seen it yet, check out my YouTube channel. It includes videos related to both reading/books and living with chronic illness. You can see the different playlists here.

I've uploaded 3 new chronic illness videos since my last update:

  • How To Nap with Chronic Illness - with tips for why and how proactive rest can help to prevent crashes and tips on having a restful and recuperative nap. One of my healthy friends enjoyed this video and said she learned some new tricks!
  • Living with Chronic Illness: Take a Break! - why you sometimes need a break in routine and how to manage a break, even if you can't leave your house.
  • Get Out! Nature Improves Health - this is a common theme here on my blog, and I've written articles for ProHealth as well. Scientific studies prove that time spent in nature--as little as 5 minutes or even just looking at pictures of nature!--has measurable positive effects on mental and physical health. The video includes tips for enjoying nature while chronically ill, whatever your level of functioning, and lots of footage of nature. That means that just watching this video can improve your health!


What We're Watching and Reading

Regular blog readers know that I love to read, and I always have one print book and one audio book going. I just kicked off my annual Big Book Summer Challenge, and you are all welcome to join the fun! You just need to read one book (or more, if you want) of 400 or more pages between now and early September. Click that link for the details and to sign up.

I'm a bit behind and haven't made my May summary yet, but you can check out my April Reading Wrap-Up, which included several 5-star reads!


(My reviews and trailers and where to watch at the links below.)

We've seen some great movies online lately! Palmer was a poignant, uplifting story, with a surprisingly complex, moving performance by Justin Timberlake. He plays the title character, a gruff, newly-released ex-con who develops a surprising connection with the abandoned little boy next door, Sam, who loves pretty things and playing with dolls. At first, Palmer tries to protect Sam from the inevitable abuse of other kids because of his choices, but eventually, he embraces him just as he is. It's a wonderful story that made me laugh and cry!

We also loved Nomadland, starring Frances McDormand, which has been raking in the awards for both the film and for her performance as Fern. Fern plays an out-of-work senior citizen, left on her own after her husband's death and her town's demise when the local industry pulls out. She takes to the road in a modified van, joining a whole community of similar nomads who go where the jobs are, from an Amazon warehouse in the holiday season to picking beets on farms to working in National Parks during the summer. It's a beautiful, gentle film set in a real-life community of kind nomadic workers (McDormand and one other actor were the only professionals; the other characters all play themselves) with stunning settings. It deserves all the awards it's winning.

On my own, I watched and loved Moxie, starring Amy Poehler as an aging hippy mom, whose teen daughter is just beginning to wake up and learn to stand up, as she grows from being the quiet girl to the leader of a movement against sexism, following in her mom's footsteps from the 70's. It's a fun, uplifting movie with a lot of heart and a great message. 

You can check out all of my recent movie reviews here.

On TV, we enjoyed Debris, a sci fi thriller that just wrapped up its first season. The premise is that an alien ship exploded and the debris from it has been falling to Earth. The pieces have all kinds of weird powers that are wreaking havoc with people and towns all over the world, and a team of investigators travel to wherever a bit of debris is found to try to figure out what is happening and safely contain the danger. We enjoyed this one and are looking forward to season two.

Who doesn't need some seriously goofy fun in these stressful times? One of our favorite shows this spring was Resident Alien, which combines a murder mystery, small-town drama, and a sci fi thriller! An alien crash lands on Earth in the mountains of Colorado and takes on the body of a human man, played by the hilarious Alan Tudyk. He tries his best to fit in (comically, of course) in the small town while searching for key parts of his ship in the deep mountain snow in his spare time, as he learns what it means to be human. It is very, very funny, yes, but is also surprisingly warm and full of heart. We looked forward to each new episode!

If you prefer family drama, with a nice touch of humor thrown in, we have only recently discovered The United States of Tara, an older show starring Toni Collette. She plays Tara, a wife and mother in Kansas who also happens to suffer from Dissociative Identity Disorder (multiple personalities). Collette is outstanding in this role, playing all of Tara's very different "alters" magnificently, and the rest of the cast (her husband, two teen kids, and sister) is all excellent, too. It's a normal family dealing with all the usual family issues, only where mom can transition at a moment's notice into someone very different! It's a great show.



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


Swanhausen said...

I’m a Covid long hauler (14 months of fatigue) and my fatigue improved significantly about 2 weeks after my second Moderna Covid vaccine shot in early May. Hoping the improvement lasts!

Sue Jackson said...

So sorry to hear you've been suffering!

But that's great news that you're seeing an improvement after the vaccine. It seems that a certain percentage of patients - both with long COVID and with ME/CFS that predates COVID - are improving after the vaccine, though it's impossible to predict who will improve, who will stay the same, and who will worsen.

I hope the improvement lasts for you! And if you still have some symptoms, be sure to check out the Effective Treatments tab up at the top of the blog - these early days (I know it probably seems like a very long time for you, but 14 months is still early days) give you the best chance at significant improvement or even recovery, so this is the time to educate and advocate for yourself!

Good luck - thanks for stopping by and taking the time to comment -


Lettierome said...

Wonderful news Sue .... and as always great information. Thank you for your vaccine info; I’m still in a crash so very concerned and so happy for you .. I also in my late teens had years of allergy shots and upon re testing all my allergies got worse not better at the time the doctors were so confused ...
Just so happy to see you out of a crash ... gives me some hope . Heather

Sue Jackson said...

Heather -

Thanks - glad you found this post helpful!

Sorry you are still in a crash. I get it - I just came out of a 15-month-long relapse, so I understand your concerns.

Wow, that's crazy about your allergy shots! Interestingly, I think my own allergy shots were the likely trigger that started my ME/CFS 19 years ago.

Hope you feel better soon and this crash ends!