Hi folks. This is the first time I have entered a response to anyone, so bear with me. Short background on myself: I am soon to be 68, started Klonipin just before Thanksgiving 2019 because my Dr. took me off my beta blocker BP med cold turkey along with the other BP med I had been taking and I had a bad reaction. I learned only in 2022 that no one should ever cold turkey a beta blocker; that they are an anti-anxiety med (no ever told me any of that). So I assume that I went into a nasty wd from stopping my beta blocker: screaming anxiety, terrified, extreme torso muscle contractions so bad that I couldn't get a breath,... Anyway, the doctor, without even seeing me in person for ANY of this prescribed the BZ, which only helped enough, but not really well. Was on the BZ for over a month, Dr. gave me instructions for quitting which involved cutting 25% every week til pills were gone. Obviously that did NOT work. You all know the result. In the course of visiting ERs over and over I finally went to one with a doctor who did a pretty good workup on me and I learned some new things about my health that no one had ever noticed about me before. Long story short, I ended up with 4 surgeries in 2020 over the course of 7 months: a remodeling of my bile duct due to a congenitally abnormally narrow entry into my intestine; a tricky test to determine aldersterone output from my right adrenal gland which showed a benign tumor; surgery to remove that same adrenal gland; surgery to remove my gallbladder. And all of this while trying to do a relatively fast taper off from Ativan (a very ignorant dr. from the Mayo Clinic in Rochester, MN, no less, had taken me off from Klonipin and put me on Ativan, upping my doses to 4 times every day; "It is shorter acting so should be easier to stop taking," she told me; Maybe she was really the janitor, I couldn't swear otherwise; I was so miserable that I wasn't really able to think well; this was very early days of Covid and happened just as elective surgeries were being stopped in U.S.). I had to keep taking this poison for months until Mayo would resume their outpatient surgeries.
Anyway, I had to find out, like most everyone else on this forum, how to treat myself. Not only did I have to learn about BZs, and tapering, and what wd symptoms really were, but my body had to relearn how to digest food more normally than it ever had since I was born, evidently, along with learning how to adjust to having no gallbladder and only one remaining adrenal gland. I lost 45 lbs from Thanksgiving '19 to August '20. Was down to 95 pounds at my lowest and thought I was watching myself slowly die, like a holocaust victim. I begged to die, I know that. The only good thing that came out of those 2 years was that by removing my adrenal tumor, my BP normalized almost overnight. All those years fussing with different meds and it was a tumor that was causing the problem.
I am still experiencing wd symptoms now, at almost 30 months off. I, too, despair on some days of ever being able to live a life without the other shoe dropping at a moment's notice, of being brought to the brink of the abyss. Yet I am so much better than I was in 2020. I can actually entertain at times, can visit my step-mother, do laundry, take long walks, go fishing, and more. But I can also end up in a puddle on the floor, crying my heart out, begging it all to STOP. The physical symptoms I can deal with, but what I call the "psycho" symptoms are unbearable when they happen. But I put one foot in front of the other and keep walking. And hoping. If it wasn't for my husband, a natural born caretaker, I wouldn't be here. Thank you, God, for Tom.
The reason for this message:
I do a lot of research (like many, many of you) on scientific info. (I am retired but did research for library patrons for 45 years) and a couple of the more interesting bits I have found from very recent reports on Covid is that there appears to be a definite gut biome connection to the virus. Science thinks that they are getting closer to predicting who will and won't get sickest just by examining the gut. Of course they don't have everything exactly figured out, but they believe that by improving and restoring the gut biome, that Covid patients can avoid or heal from Long Covid. Even by maybe introducing healthy feces into the gut. The thinking, I believe, is that a poor biome is unable to kill off all the virus; it lingers, and when it lingers it continues to create issues in the host. As the gut is the center of our immune function, and a direct line to the brain/mental state, improving the gut would theoretically be key to treating Long Covid. I am not a doctor (surprise, surprise) nor do I profess to be, but as science is discovering more and more about the value of the gut, this theory doesn't seem far fetched to me.
The typical American diet is woefully lousy for gut health. In fact, the U.S. population is maybe the most unhealthy and sickest population in the world of "advanced" countries. In spite of our "wonderful" health care system, we continue to get sicker and sicker. The current concern over ultra-processed food in our diets is not overblown, in my opinion. I would even venture to say that BZ victims are like the canary in the coal mine for human health in this country. Since we are hyper-reactive to most everything, we can more easily sense when we are coming into contact with things that don't mesh well with the human organism. What others can easily ignore, punches us in the nose.
I just recently also read from an article in The Week magazine, that people who consume more than 20% of their daily calories from ultraprocessed foods have a 28 percent faster cognitive decline compared with those whose intake is less than 20%. That's only about 400 calories out of the average 2000-calorie diet. And most Americans are significantly over that: getting on average about 58% of their calories from ultraprocessed foods! Since the gut is naturally made up of helpful bacteria and not-so-helpful bacteria, and since soluable and insoluable fiber is what feeds the helpful bacteria, and added sugars, additives, white flour, adulterated fats, and other fast-food thingies all feed the unhelpful bacteria, it isn't hard to see that a highly processed diet would get in the way of good health. We are feeding the wrong animals.
So many folks on this forum have learned that if they eat less junk and more whole foods that they feel better. Faster food does not automatially translate into better food. Of course there are those who believe that it doesn't matter how careful you are in BZ recovery, you still feel like crap. Can't argue that we all feel like crap at least some of the time, but I could argue that since there are so few things we can actually control over our healing process, one of the only, and maybe the best, ways we DO have available to us is to feed our poor little bodies with the fuel they need to do the hard work of healing. I am one of those who believes with all her heart that what I eat can make me feel better. Can't say how much of it makes me feel directly lousy, but nothing seems to make symptoms go away. Just more bearable. The human body hasn't evolved far enough, fast enough, to be able to adapt to all the "improvements" we keep making to our diets. Or in our environments, for that matter. One expert said (read the book METABOLICAL by a man who has spent his life guiding other experts) that "It isn't the food, it's what's been DONE to the food that matters."
What constitutes a good diet? According to the above book, and other recent science (and yeah, I distrust that word as much as anyone) if a person eats whole foods (as close to coming out of the garden as possible), cooks it gently (no deep-frying or cooking at high temps), and avoids foods with ingredients that you can't pronounce, you should be on the right track. In fact, one rule of thumb that the above book uses (somewhat euphemistically) is "If it has a nutrition label on it, don't eat it." Of course, anything you can buy in a store is some kind of processed food; it can't get out of the field and onto a shelf without something being done to it. But if a person avoided the most processed in favor of the least processed, you'd be doing your healing process a favor. Any jarred sauce, bottled condiment, boxed food, soda, or common baked good is out of the running. The more variety of fruits and vegetables that you can fit into your meals in a day, the better. Supposedly a person only needs to eat meat once a day. I have no real opinion on that. Except that neurons require fats in order to repair themselves, so if you don't get your fats from meats, get them from olive or avocado oil, preferably cold-pressed. My feeling is that I'd rather err on the side of caution than on the side of causing unnecessary physiological stress.
When I was early into my recovery, and my body was having a hard time processing food because withdrawal messes with digestion and because of my newly missing organs, I didn't know about this healthy diet information. I just went with the "flu" diet of white rice, chicken broth, steamed vegetables, oyster crackers, and chicken breasts. Later I learned that there might have been a reason that the broth seemed to be increasing my discomfort (and the crackers): it is full of additives including a significant amount of MSG in order to improve the taste (MSG is the go-to in the industry to improve flavor, as this excitatory ingredient makes flavors pop in the mouth). And white rice mostly translates into sugar, and sugar feeds bad bacteria, as I have said, as well as naturally increases anxiety. I will never know what parts of my suffering were caused by what, but I do know that even eating my "flu" diet was making me feel better than when I ate what most everyone else was eating.
In summary, perhaps any of you who are suffering from increased symptoms while recovering from Covid might benefit from making a concerted effort to improve your gut health. I'm sure it won't offer noticeable improvement overnight, but like any other garden, if you keep at it you should have less weeds, create better produce, and see results in time. Not really a comfort, I know, but it does offer some hope, I think. I hear that some people can tolerate vitamin supplements and digestive enzymes, and I am happy for you if you are one of them. I am not. I prefer to avoid all supplements, homeopathic remedies, medications of any type, and over-the-counter (or under-the-counter) products. I strongly feel that any laboratory-created product taken chronically (that is, on a regular basis over a length of time) will only be a short-term solution, at best, while creating a long-term problem that will need to be addressed later on. Anything that the body is introduced to that mimics something that it can do on its own -- hormones or other chemicals -- will only create some kind of dependence as the body has to adjust to fit this thing into the complex and intricate ecosystem that we rely on for biological life. Something naturally occurring will have to go to make room for the artificial, to some extent. What science likes to believe is nothing more than ENHANCING a body function is actually TAKING THE PLACE of someting natural. Every drug that I have ever looked up has said this: "Science doesn't really understand how [fill in the drug blank] works on a cellular level." Remember: antibiotics didn't really start to be prescribed until WWII. The health machine as we currently know it is not very old. What doctors don't know is HUGE compared to the teeny bit that they do. And that changes all the time. Remember Oleo margarine? That was supposed to have been the clear answer to heart disease -- trans fats were thought to be better than animal fats. We don't believe that now. In fact, trans fats are implicated in CREATING heart problems. And now science can't find any proof that serotonin fixes depression. In fact, the latest research, comprehensive by anyone's standards, finds that placebos provide just as much help for depression as SSRI's. Of course, for some people, sometimes, it appears that serotonin can help somewhat, but they really have no idea why. So what science knows, they don't really KNOW, they just think it makes sense at the moment. I would rather rely on common sense and Mother Nature than doctors. But that's just me.
I don't know if any of this information helps anyone, but it might. I certainly hope so. It's what I am doing for myself, in any event. May you all continue to heal faster and faster. The body can't help BUT work at healing and creating homeostasis, because that is what it is PROGRAMMED TO DO! It won't stop. Every minute is a step closer than the previous minute. Every body is unique and everyone's process can't help but be unique as well. Tap into the collective energy -- I call it God -- and just hang in there. Get out into the woods or a park or nature of some kind; that is full of raw collective energy. Let the sunshine hit your skin, because that is raw energy as well as an instigator of vitamin D3, a natural immune booster. Breathe deeply and slowly, or as best as you can manage, because that stimulates the vagal nerve, I am told, and that tells your body to calm. Move, move, move. Exercise to stimulate the immune system (the heart pumps the blood, and the muscles pump your immunity) and to boost GABA receptor restoration (that's something else I have just read in some scientific report or other -- there seems to be evidence of that). Don't overdo the exercise, as there appears to be a tipping point -- too much may not be so helpful. Or at least may not be helpful in dealing with symptoms. Don't know what it means for healing. Have no idea if that is true, but there seems to be anecdotal evidence to support that. Treat yourselves like your favorite pet and be kind and patient. My heart goes out to all of you! Be grateful for a world in which we have sources of help like this forum. I'm pulling for every one of you! And can you save a little good will for me, too? I sure need it. This game is getting old.
