Tuesday, June 28, 2022

TV Tuesday: The Old Man

Usually, my husband and I juggle a bunch of shows on both cable On Demand and streaming, so I was disappointed that there didn't seem to be many new or returning cable shows this summer. Then, we heard about The Old Man on FX (and on Hulu), about a retired CIA agent who suddenly has to go on the run again. Wow, we are loving this show so far!

Jeff Bridges stars as Dan Chase (his current name), the "old man" of the title and the retired agent. As the first episode opens, his quiet life in a remote cabin with his two dogs is shattered when a gunman visits his house one night. He tells the local police it must have been an armed robber, but when they see the intruder had a silencer on his gun, they wonder. Dan immediately grabs his go bag--he was obviously prepared for just such an incident--and hits the road. On the way, he calls his adult daughter to let her know she may not hear from him for awhile. He also talks to Harold Harper, played by John Lithgow. Harold is also retired, as a Director of the FBI, and it's clear the two know each other and have a long history. Harold warns Dan that an old nemesis is after him, with both the FBI and CIA involved. Harold ominously advises Dan to run so that old secrets will remain buried, but Dan doesn't want to break all ties with his daughter, as Harold suggests. After a stunning encounter with the agents pursuing him, Dan holes up in a rental house he knows about, not realizing there is now a divorced woman on site, Zoe (played by Amy Brenneman). He is trying to rest and heal before he heads west, but she is a complication he hadn't counted on. Meanwhile, the efforts to find him escalate within the FBI and CIA.

We have watched three episodes of this seven-episode season so far (since it is currently airing, that's all that's available so far; episode four will be released this Thursday), and we are totally hooked! Bridges and Lithgow are both outstanding in their roles, as is the supporting cast. Bridges in particular plays the role of the mysterious Dan with such emotional depth that you get pulled into his story. Some scenes flash back to when Dan was a younger man in the CIA, so the viewer slowly learns what happened in the past and why the agencies are so intent on finding him now. But Dan is a formidable opponent, even entirely on his own. Secrets (some shocking) are slowly revealed, and even when you aren't entirely sure what bad stuff Dan did in the past, you're still rooting for him! We are absolutely loving this action-packed and suspenseful yet warm and moving show and can't wait to see what happens next.

The Old Man is currently airing on Thursday nights on FX, with episodes available both On Demand and on Hulu.


Thursday, June 23, 2022

News From Our House: Chronic Illness Update


I realized this week that it's been two months since I recorded a video related to chronic illness (I've done lots of books videos in between because they are usually short and take less energy!), so I decided to record a little update of my past few months. 

This is just a casual conversation about the ups and downs of my illness recently, but it also includes some information about how I came out of my post-COVID relapse and how I track my symptoms/illness severity:


Oh, and I included some photos and video clips of fun stuff, too, including some very peaceful nature videos!

You can see all of my chronic illness videos on my YouTube channel.

In this new video, I refer back to a recent blog post, ME/CFS, Lyme & COVID: Relapses and Recoveries for details of what helped me recover from my various relapses.

I've already had two crash days this week (unusual for me) and am trying to take it easy today, so that's it for now. Please let me know if you have any questions.

How is YOUR chronic illness life lately?

Tuesday, June 14, 2022

TV Tuesday: The Flight Attendant

Our adult son is living at home now, due to his job circumstances. Since he's enjoying free cable and all of our streaming services, he decided to buy HBO Max and share it with us (our profile is named Parentals). One of the shows I immediately started, that I've wanted to see since its release last year, is The Flight Attendant. It's based on the novel of the same name by Chris Bojhalian, one of my favorite authors, though I haven't read this particular novel yet. My husband and I are loving this unique twisty thriller with a dark sense of humor.

Cassie, played by Kaley Cuoco of The Big Bang Theory,  works as an international flight attendant who takes full advantage of her youth and freedom. Cassie is the consummate party girl, going out every night, drinking heavily, and sleeping with whomever she finds attractive. On one flight to Bangkok, working alongside with her fellow flight attendants and friends, Megan (played by Rosie Perez) and Shane (played by Griffin Matthews), Cassie flirts with the cute guy in First Class 3-C and ends up going out with him that night. That cute guy is Alex, played by Michiel Huisman, and he and Cassie really hit it off, going from one restaurant/bar to another, until they end the night together in Alex's luxury hotel room. Cassie really likes this guy, and Alex seems to feel the same way about her. Unfortunately, their perfect night together is marred when Cassie wakes up with Alex dead in a puddle of blood beside her and no memory of how the night ended. Cassie has a drinking problem, and this isn't the first time she's been blackout drunk, but it's the first time she's been involved in a murder. Shocked and terrified, Cassie leaves the hotel, tells no one, and gets on the flight back to NY, seriously shook up. Of course, the authorities soon figure out that she was with Alex. Thus begins a frantic, whirlwind mystery/thriller, as Cassie, the FBI, and some mysterious (but clearly bad) people all try to figure out what happened to Alex. Cassie herself is, of course, a suspect, and her spotty memory doesn't help. She avoids her kind, stable brother, Davey (played by T.R. Knight, who will always be George from Grey's Anatomy to me), and enlists her best friend, Annie (played by Zosia Mamet, of Girls fame), who's a lawyer, to help her, but soon she is running from both criminals and the authorities, as she tries to get to the bottom of Alex's murder.

Wow, this is one twisty thriller! Each episode is filled with surprises and new plot turns we never see coming. Kaley Cuoco is outstanding in her role as Cassie, the perfectly unreliable narrator who comes across as a hot mess but is nonetheless likable. The rest of the cast is also outstanding. The writing and dialogue are quick, witty, and engaging, with a dark sense of humor that makes you laugh at Cassie's escapades, even as you feel sorry for her, root for her, and fear for her life! We have just started season two, and with each new episode, we never know where the plot is headed or what is in store for Cassie and her friends (and enemies). We're thoroughly enjoying this fast-paced, zany, unpredictable, and fun show and can't wait to see what happens next!

The Flight Attendant is an HBO original and is available on HBO Max or YouTube TV.

Friday, June 10, 2022

New Podcast: Spoonies with a Purpose


A couple of weeks ago, I shared a new chronic illness podcast, Sick Lessons, started by one of my favorite bloggers.

Today, I have another new chronic illness podcast to share with you, from another favorite blogger!

It's called Spoonies with a Purpose, and the host is Julie Holliday of the ME/CFS Holistic Coach blog. Julie's focus on her blog and in her coaching is "supporting you to find harmony in body, mind and spirit, and to free yourself to live a life of peace and purpose!" I've known Julie for many years; she used to be my editor for articles I wrote for the ProHealth website. She's a wonderful, compassionate person, with some great ideas on how to support yourself in a life of chronic illness.

You can watch/listen to her first podcast episode on her blog (there's a video and also a "Listen Here" audio link) or on YouTube. I'll also include the video below:


This first episode features an interview with Jacqueline Taylor, a patient with ME/CFS and fibro who used her own experiences to reach out and help others. It's an interesting interview, and I learned a lot, too (did you know face yoga is a thing??). Check it out and then subscribe to Julie's new podcast! I can't wait to see more!


Friday, June 03, 2022

ME/CFS, Lyme & COVID: Relapses and Recoveries


I'll admit I've been procrastinating on writing this post because a) the cycle of relapses and recoveries kept extending, and b) well, it's complicated!

So, here I will simplify it as much as I can: what I've been through the past 2+ years and what I think helped me get back to my "normal" baseline (which isn't too bad, comparatively!).

 

Timeline:

March 2020 - I suddenly and inexplicably got worse. I'm still not sure exactly what triggered the relapse (I tested for COVID over and over since the timing was suspicious but had no sign of infection or even exposure back then). My best guess is that my Lyme got worse because I wasn't treating it effectively and caused a cascade of worsenings/relapse.

That relapse continued for over a year, though things very gradually improved, as I added new/revised treatments (see below).

May 2021 - I was finally feeling good again, after many treatments and a gradual improvement over many months--pretty much back to my "normal" baseline.

May & June 2021 - I got my two COVID vaccines. I chose Moderna because data showed it caused the fewest long-term relapses among those with ME/CFS. They definitely worsened my overall condition & symptoms again.

Late November 2021 - Once again, I had gradually improved (plus some treatments helped) and was back to my "normal" baseline again, able to be active and enjoy the holidays.

January 5, 2022 - I caught COVID at my father-in-law's nursing home, where they had a big outbreak (he and my son also caught it). I was severely ill--mostly bedridden--for about 3 weeks and then began showing small improvements, very gradually.

I continued to feel worse than usual for the next four months, though there was some very gradual improvement. I could tell my immune system was stuck in an over-active state because of heavy fatigue and constant flu-like achiness.

End of April 2022 - With my doctor's help, I tried a somewhat risky treatment, but it worked, and I returned to my "normal" baseline with ME/CFS and have remained there since, in spite of a very busy & active May.

 

Treatments That Helped:

So, what helped me get over these relapses and back to my normal (with ME/CFS) level of functioning? It's complicated. I am very analytical and greatly annoyed by unexplained worsenings of my condition! I am also relentless when it comes to trying treatments and finding solutions, so I tried a lot of things. Because I'm analytical, I keep a lot of data, so I have a pretty good idea of what helped the most.

As best as I can tell, these are the treatments that helped me get back to my normal baseline (which is quite good for someone with ME/CFS).

New and More Effective Treatments for my Chronic Lyme Disease:

Even before that relapse that began in March 2020, I saw signs that my Lyme disease was not well-controlled. My right hip was starting to hurt, which is a subtle sign I often don't recognize right away that the Lyme bacteria is shifting into other joints (usually, it affects my knees). So, when I suddenly got a lot worse in March 2020, my first step was to begin seeing my son's Lyme specialist. I hadn't seen a Lyme doctor myself in several years because I thought my Lyme disease was "under control." Ha! Now I know better.

The Lyme specialist immediately began adding new treatments and ramping up older treatments that I hadn't kept up. I brought her new research from Johns Hopkins on which herbals are most effective against Lyme disease (more effective that the prescription antibiotics usually used). She was already familiar with most of that, so between the two of us, we began adding lots of new treatments, including:

  • Restart A-L Complex (Byron White protocol), which I had used off and on for years. She also advised me to increase the dose, up to 30 drops twice a day.
  • Add Stephania (used cautiously and at lower doses, as it can add to the effects of beta blockers, which I also take). I only took it for a few months.
  • Add Samento (Cat's Claw).
  • Add Biofilm Defense.
  • Add Japanese Knotweed (later, in early 2021)--one of the herbs determined to be most effective in that Johns Hopkins study.
  • Add Crypto-Plus

All of these treatments together--especially the increased dose of A-L Complex and addition of Knotweed--led to eliminating my Lyme symptoms and improving my overall condition, gradually.

 

Treating Reactivated Viruses:

It's an old story in ME/CFS--our immune dysfunction causes old, dormant infections to reactivate, especially herpes-family viruses, like Epstein-Barr Virus, HHV-6, CMV, HPV1, and others. 

In my case, testing showed that EBV and HHV-6 were--once again--very positive and reactivated, probably from the Lyme infection going untreated and triggering a domino effect of immune dysfunction. 

I also tested positive for adenovirus, which was curious because it's a common virus that normally causes a mild cold in healthy people but not something that typically pops up for me. This could also have been a contributing factor in triggering my long relapse--exposure to a simple cold virus. It has stayed in my bloodstream since then, so I avoided the J&J vaccine, which was based on an adenovirus.

For these ramped-up viruses, we added/increased:

  • Restart Famvir (famciclovir) and then replaced it with Valtrex (valaciclovir) a few months later--I take these prescription antivirals that work against herpes-family viruses every few years when mine get too active again. I'm still on Valtrex.
  • Add L-lysine, a potent herbal antiviral.
  • Increase doses of olive leaf extract and emulsified oil of oregano, two herbals that are effective antivirals, antibacterials (so help with the Lyme, too), and antifungals.

 

Diagnosed and Treated Hypothyroidism:

In early 2021, my Lyme specialist ran a full thyroid panel, and much to my surprise (because I get my thyroid tested pretty often), this time it showed low T3. She began treating me with a very low dose of Cytomel (liothyronine). Later, after repeat testing showed it was still slightly low, she increased the dose a bit.

I didn't necessarily see an immediate improvement in symptoms, but having a messed-up thyroid couldn't have been helping me. And I did immediately lose seven normally very hard-to-lose pounds!

 

Supported Immune System

In preparation for the COVID vaccines, I took the advice of ME/CFS experts and added some vitamins and minerals to further support healthy immune function. I was already taking most of the supplements they recommended, but I added/increased a few:

  • Increased selenium
  • Increased zinc and switched to a more readily absorbed form (zinc glycinate)
  • Added liposomal vitamin C (1g per day)--the liposomal form is less likely to cause stomach upset.

 

Increased Inosine

Finally, though this also falls under the category of supporting my immune system, I am listing it all by itself because it's really important.

ME/CFS is, at its heart, an immune disorder and most of our symptoms stem from that dysfunctional immune system. We have found three treatments that help to normalize the immune system (in addition to treating underlying infections) that have greatly helped to improve our conditions over the years:

  • Glutathione
  • Low-Dose Naltrexone (LDN)
  • Inosine

Find more details on all of these immune system treatments, which are all inexpensive and readily available, in my blog post on Treating Immune Dysfunction in ME/CFS.

So, I was already taking all of these, but purely by mistake, I increased my dose of inosine in November 2021--I just miscounted the pills in my weekly reminder boxes one week! I simply went up from 5 a day to 6 a day for my "high dose" weeks (you alternate weeks with high dose and low dose), and like magic, after months of struggling, I finally returned to my "normal" ME/CFS pre-vaccine baseline.

 

Post-COVID Desperation and Steroids: 

So, I was already doing all of that above when I got COVID in January and went into another relapse afterward. For four months, I struggled with severely worsened fatigue, constant flu-like aches, never feeling good, and about 2-3 days a week, completely crashing so badly that I was couchbound or bedridden. I was also severely limited in what I could do.

Since this relapse was definitely triggered by my COVID infection, my ME/CFS specialist tried--and tried and tried--to get me COVID antivirals, but between limited supply and restricted use, I was unable to get them.

If you have lingering symptoms post-COVID (worsened ME/CFS and/or "long-COVID"), this should be the first thing you try: antivirals specific to COVID. There are two currently on the market, and they should continue to become easier to access: Paxlovid and Molnupiravir.

I did finally get molnupiravir but never had a chance to try it because by then, we had tried something else.

My constant flu-like achiness (like recurring sore throats or swollen glands or feeling feverish) told my doctor and I that my immune system was still in overdrive, over-reacting even though the acute viral stage was over. Given this, I asked if I could try a very short course of steroids, and she agreed. 

Steroids suppress the immune system, so they are usually not a good idea for those with ME/CFS (and definitely not long-term). Although parts of our immune systems are overactive, other parts are underactive, so suppressing the entire immune system is normally not effective for us and can do some harm.

The idea in this case was to try a very short course of steroids--just five days of low-dose prednisone--to temporarily calm down my immune system, with the hopes that when I went off it, my immune system would come back up in a more normal state. And it worked! Since then, I have felt pretty good (for me), back to my "normal" ME/CFS baseline and able to be more active again. And no more aches!

Steroids are not without risk, even when used short-term. They suppress your immune system, making you more susceptible to infection, so for that week, I was even more careful than usual, avoiding people and crowded places and wearing my mask even more diligently than usual. 

In addition, I had a very uncomfortable side effect: my normally high heart rate rose even higher. The first day I took prednisone, I woke from my nap (lying in bed), with my heart feeling like it was going to leap right out of my chest. That afternoon and evening, my heart rate--which is normally well-controlled with low-dose beta blockers--was 130 bpm lying down with my feet up! I contacted my doctor, and she quickly called in some extra beta blocker (just a small additional dose of what I already take) for me to take in the afternoons while on prednisone. That helped a lot.


Lessons Learned

So, all of this may seem very specific to me and my situation--and it is--but all of it is applicable to anyone with ME/CFS or long-COVID because these were all common problems underlying our disease. Some things that everyone with ME/CFS or long-COVID can try:

  • Diagnose and treat underlying infections--because of our immune dysfunction, we almost always have infections behind the scenes making things worse: undiagnosed tick infections (very common in ME/CFS), old reactivated viruses, yeast overgrowth, fungal infections (including mold exposure), and of course, in the case of long-COVID, COVID itself. All of these can be diagnosed and treated.
  • Check Endocrine Function--the immune dysfunction of ME/CFS messes up our endocrine systems, which are responsible for the hormones that regulate everything in our bodies. So, get a full thyroid panel (not just a screening test), check 24-hour cortisol levels (with a saliva test), and ask your doctor to check other hormone levels. 
  • Treat Immune Dysfunction--as I said, this is at the heart of ME/CFS and causes many, if not most, of our symptoms. Normalizing immune function will help to improve everything. More details on simple, inexpensive immune modulators (and also treating underlying infections) in my blog post on Treating Immune Dysfunction in ME/CFS.
  • If you are suffering from long-COVID or a lingering relapse of your ME/CFS due to COVID--ask for COVID antivirals, in addition to the other things listed here.
  • Effective ME/CFS Treatments--for a full overview of the treatments that have helped my son and I the most over the past 20 years (and the reason why these relapses didn't completely make me bedridden), see my Effective Treatments for ME/CFS post, for our experiences. 

As for me, I am happy to be back to my own "normal," still needing lots of sleep at night and a daily nap but with crashes rare now and able to take walks and do other active things again! I'm slowly regaining my stamina.