Thanks for sharing a snapshot of your checklist of things that help! Now I want to make one for myself as a reminder to prioritize the things that help me.
Thank you for reading, Carsten. There’s truly never any rush here. And, by commenting, you reminded me that I wanted to add this post to my Recovery tools series, so thank you for that ☺️.
I see you have picked up cold showers. In the one-up category I recently started cold plunges. Besides running every day and losing 40lbs--It's the first thing I have ever done that has made any difference to my health in 50 years.
I'm jealous of your plunges (is that weird to say?). How/where do you do them? We have a ridiculously large bathtub that takes forever to fill up. We are also on well water here and so I know it worries my husband whenever I think to take a bath. Two summers ago, we had a drought, and he was worried we might run out of water. So for now, I just turn my shower to cool/cold for a few minutes at the end (sometimes I can only stand a minute). I have an old shower that gets cranky when I change the temperature, so sometimes I throw in the towel on the cold not because it's too cold but because the pipes squeal and squeak and bang and that alone gives me a headache or makes me anxious, running at cross purposes to the cold water's effect on my vagus nerve.
Haha! Weirdness aside--I do them in our oversized bathtub, unfortunately not oversized enough for my augmented holiday physique. I manage about 3/4 coverage, flipping side-to-side, in the creation of an image ugly enough to spoil your Thanksgiving dinner. Still, the plunge triples-down on the cold showers with enough shock in 3 minutes to change your health after a few weeks. My triglycerides diminished by half from Fenofibrate to about 250 are now at 150 from two plunges per day. I follow Gary Brecka on Facebook, trying to mimic some of his medical advice.
Will be so interested to see the things you think have helped. There is definitely some overlap with what helped me. I just watched the Soirée replay with your question about the name and I wanted to say the concept of not over-identifying with the Long Covid condition I was experiencing was a very big part of the process I went through. So a name change could help the space you are in. Also, I am thinking- if I had built up a big substack with a name like yours and then recovered , what would I do? It would be a thorny problem.
This is so good to hear, Helen - the part where you went through a similar process not over-identifying with the name. I’d definitely also be curious to know what things you think really helped you (if you’re up for sharing).
And thanks for telling me that my question was discussed; I haven’t watched the replay yet, so I didn’t know! Something to look forward to tomorrow. Honestly, the further in I get here on Substack, the more I think I may not be able to change the name yet. I’m getting several new subscribers a day now. Good problem to have!
Take a look at the replay, they were very positive about your name change, and made a number of good points about it.
Of the things that were easy and accessible, breath work was number one. Particular long exhalations and long holds out, which change the pH of your blood and allow more oxygen to get converted to energy in the mitochondria. James Nestor has a good book on this called Breath, and it’s very readable. Cold showers, any type of super gentle yoga and a small device to stimulate the vagus nerve called Sensate were also good.
But the major, major quick turn around was the Lightening Process. I had excellent results, and my daughter with ME had very good results too. It gets a lot of hate in the ME community. It seems very scammy if you glance over their promotional materials, but the process is very well worked out. I am planning a long post on how the various parts of the Lightening process fit together to work, but it is going to take a bit of work to put together for publication. If you are interested, I will send a rough outline of it to you -
Quite a number of people I have recommended Lightening to have had brilliant results too. But because it relies on super charging the placebo effect, that means about 40% of the population dont have a strong placebo response, so it doesn’t work well for them. Hence a number of grumpy reviews on line.
Oh wow - I read Breath a few years ago and I started mouth taping at night as a result, which has definitely helped me get better sleep. And yes to cold showers, gentle yoga, and the Sensate! They’re all on my list.
I don’t know much about the Lightning Process but I’ve taken the Gupta program - is it similar? Not a magic bullet for me but I’ve taken tools from it.
I think they might be similar, but I son’s really know. I just looked Gupta & Lightening up on the internet to see how similar they were, and up came all the responses about it being a scam etc etc. ! I hadn’t seen those for ages, although I am very familiar with them. There must be some type of inverse survivor bias going on here- those of us that it worked for are out doing things, not sitting around writing posts on Reddit anymore. But it it worked for me. Three months after taking it, I was dancing at my son’s wedding - after a 12 hour flight to Indonesia, another flight and a 3 hour 4-wheel drive through the jungle to the remote village where the bride came from. A few days later I climbed a volcano. Before, that flight alone would have triggered a huge crash. (It didn’t work for the frozen shoulder though!)
First, I worked briefly for the CSO of a small-pharma/rare-disease company and LOVED being surrounded by scientists whose response to failure--in general--was, "EXCELLENT! More data!"
And meant it.
In a good way. 😉
I'm also the person at the doctor's office asking, "ok, if this doesn't work as expected/if this goes wrong, what will that look like?" I think of it as my version of your Seth Rogen meme.
I also went looking for the sensate device as I've been very interested in Vagus nerve research. I now have a 10%off coupon code for anyone who is interested. (posting the code seemed tacky, so DM me if you'd like me to share it with you.) I'm looking forward to testing this.
I can say that I'm finding the Visible app to be quite helpful. (and goblin tools, but that may be more ADHD than fog 🤪)
I love my Sensate! I’ve had it for a few years. It really helps when you need to calm the nervous system but don’t have the spoons you need to listen to a guided meditation.
Check out my latest Rodeo post, where I do a deeper dive on the Visible Plus wearable.
How nice to see a mid-week piece from you! I had no idea that a stressful week at work had such a negative impact back in 2021. Your ability to track and analyze all your treatments just amazes me. Looking forward to the next piece! ❤️
Yeah, it was a huge bummer because I was doing soooo much better for about four months and then BOOM. In a future post, you’ll see a pic of me actually laying in the grass after our fall luncheon where I had to speak. I laid down as a joke at first but I really needed it!
I written my own version in my head a few times but I never write it down b/c I think things are always in too much in flux -- even after 3+ years. Here are a couple of ruminations on pieces of your list... Low histamine diet -- I started this when I figured out my skin rashes were from MCAS. For that particular manifestation of MCAS, the diet (plus antihistamines) is invaluable. LDN -- this has been a plus for me, but with the benefits primarily in less brain fog. That's a big plus for me, but I've been surprised that my energy envelope hasn't changed. So, my better hours are better, but they are still quite limited, and I am less aware of when I need to take a break. Have to be even more proactive about pacing. Supplements.... I've got a list of things that I think help slightly but not significantly: tumeric, Mirica (PEA-LUC), boswellia, and Alpha-GPC. Each of them has a rationale that made sense to me at some point, and I've stuck with them b/c at a minimum they don't make anything worse...
It’s so hard to know when to cut bait on each supplement. I often wonder if it’s doing anything behind the scenes that might be helpful. I just added resveratrol and NAC back in because I read a few things about long haulers needing anti-oxidants.
Your description of how LDN helps you lines up with what I’ve heard from some others; it hasn’t been a huge miracle, but takes the edge off the cognitive fatigue.
I’ve been on H1 and H2 blockers for three years now. I know they’ve helped because the blood and urine tests for MCAS have come back normal now. The only thing though that has helped the eczema (which I do think is an MCAS reaction) is cutting out dairy. Within a week, it was gone.
If you (and others) are interested, there is a need for beta testers if an app the FDA is launching to gather case reports for people with Long COVID. It's to collect info on what we've tried and what has helped (and what hasn't). I can send more info if you're interested. I'm one of the patient reps on the project.
Amy, how terrific that you shared your list. I think many will find it helpful. However, anyone as immature as I, will adore your selection of graphics. xo
I was talking with my friend, who also has LC, and she said it is one of those subtle things that help, but we don't necessarily see/feel the difference. For Methylene Blue, you need to have a lab called G6PD and it has to be negative for you to be able to take it safely. It is also contraindicated with SSRIs and other drugs , so people really need to check these things before taking it. That being said, I noticed the difference in energy right away. I'm now functional in the afternoons (most days if I don't over do it).
I was also an early participant in the IncellDX before it was commercialized and it’s didn’t work for me either. Other fails on my list are red light therapy and hyperbaric oxygen. Fluvoxamine did help with my brain fog initially. I stopped it recently to be able to take Methylene Blue (a lot of drugs are contraindicated with this one so do your research). This has helped with my fatigue, but not PEM. Oxygen at night also helps me. My oxygen saturations dropped low while sleeping from my dysautotonia. Pacing is my life now.
Interesting- I haven’t looked into methylene blue at all. I just ordered a red light therapy box that’s coming this week. We’ll see. I figured it’s one of those things that’s supposed to be good even for healthy people, so my husband can get use out of it too.
You mentioned CBD and I am very leery of this product as I am of all "wellness" products. I have found that CBD, like other vitamin/herbal industries, is pretty unregulated and you never know what you're gonna get. Many fail to have consistent potency, have heavy metal contaminants, unknown fillers and even drugs. There have been numerous cases on this. So, I think this is a good place to start.
Oh yeah, I certainly didn’t mention all the drugs I’ve taken or have been taking in this list. I’ve been taking Famotidine for almost three years now, along with montelukast and hydroxyzine- all for post-COVID MCAS. They must be working because my serum tryptase and leukotrienes are all under control. Also, I tried going cold turkey off the hydroxyzine and had a pretty significant MCAS reaction, so I went back on it.
Thanks for sharing a snapshot of your checklist of things that help! Now I want to make one for myself as a reminder to prioritize the things that help me.
I’m so glad, Bethany! I was thinking, “if one person finds this pic helpful, it will have been worth it” 😊
Just read your Mail from the Date above.
I might be a little bit late but you know with ME/CFS its not easy to be up to date and finish your quests like you wish.
BUT, your mail made me laugh naturally on many places, thanks for that :)
Thank you for reading, Carsten. There’s truly never any rush here. And, by commenting, you reminded me that I wanted to add this post to my Recovery tools series, so thank you for that ☺️.
I see you have picked up cold showers. In the one-up category I recently started cold plunges. Besides running every day and losing 40lbs--It's the first thing I have ever done that has made any difference to my health in 50 years.
I'm jealous of your plunges (is that weird to say?). How/where do you do them? We have a ridiculously large bathtub that takes forever to fill up. We are also on well water here and so I know it worries my husband whenever I think to take a bath. Two summers ago, we had a drought, and he was worried we might run out of water. So for now, I just turn my shower to cool/cold for a few minutes at the end (sometimes I can only stand a minute). I have an old shower that gets cranky when I change the temperature, so sometimes I throw in the towel on the cold not because it's too cold but because the pipes squeal and squeak and bang and that alone gives me a headache or makes me anxious, running at cross purposes to the cold water's effect on my vagus nerve.
Haha! Weirdness aside--I do them in our oversized bathtub, unfortunately not oversized enough for my augmented holiday physique. I manage about 3/4 coverage, flipping side-to-side, in the creation of an image ugly enough to spoil your Thanksgiving dinner. Still, the plunge triples-down on the cold showers with enough shock in 3 minutes to change your health after a few weeks. My triglycerides diminished by half from Fenofibrate to about 250 are now at 150 from two plunges per day. I follow Gary Brecka on Facebook, trying to mimic some of his medical advice.
You've made me laugh, Paul 😆. Perhaps someday I'll hit the lotto and buy myself a cold plunge tub. It's just untenable in my current indoor tub.
Will be so interested to see the things you think have helped. There is definitely some overlap with what helped me. I just watched the Soirée replay with your question about the name and I wanted to say the concept of not over-identifying with the Long Covid condition I was experiencing was a very big part of the process I went through. So a name change could help the space you are in. Also, I am thinking- if I had built up a big substack with a name like yours and then recovered , what would I do? It would be a thorny problem.
This is so good to hear, Helen - the part where you went through a similar process not over-identifying with the name. I’d definitely also be curious to know what things you think really helped you (if you’re up for sharing).
And thanks for telling me that my question was discussed; I haven’t watched the replay yet, so I didn’t know! Something to look forward to tomorrow. Honestly, the further in I get here on Substack, the more I think I may not be able to change the name yet. I’m getting several new subscribers a day now. Good problem to have!
Take a look at the replay, they were very positive about your name change, and made a number of good points about it.
Of the things that were easy and accessible, breath work was number one. Particular long exhalations and long holds out, which change the pH of your blood and allow more oxygen to get converted to energy in the mitochondria. James Nestor has a good book on this called Breath, and it’s very readable. Cold showers, any type of super gentle yoga and a small device to stimulate the vagus nerve called Sensate were also good.
But the major, major quick turn around was the Lightening Process. I had excellent results, and my daughter with ME had very good results too. It gets a lot of hate in the ME community. It seems very scammy if you glance over their promotional materials, but the process is very well worked out. I am planning a long post on how the various parts of the Lightening process fit together to work, but it is going to take a bit of work to put together for publication. If you are interested, I will send a rough outline of it to you -
Quite a number of people I have recommended Lightening to have had brilliant results too. But because it relies on super charging the placebo effect, that means about 40% of the population dont have a strong placebo response, so it doesn’t work well for them. Hence a number of grumpy reviews on line.
Oh wow - I read Breath a few years ago and I started mouth taping at night as a result, which has definitely helped me get better sleep. And yes to cold showers, gentle yoga, and the Sensate! They’re all on my list.
I don’t know much about the Lightning Process but I’ve taken the Gupta program - is it similar? Not a magic bullet for me but I’ve taken tools from it.
I think they might be similar, but I son’s really know. I just looked Gupta & Lightening up on the internet to see how similar they were, and up came all the responses about it being a scam etc etc. ! I hadn’t seen those for ages, although I am very familiar with them. There must be some type of inverse survivor bias going on here- those of us that it worked for are out doing things, not sitting around writing posts on Reddit anymore. But it it worked for me. Three months after taking it, I was dancing at my son’s wedding - after a 12 hour flight to Indonesia, another flight and a 3 hour 4-wheel drive through the jungle to the remote village where the bride came from. A few days later I climbed a volcano. Before, that flight alone would have triggered a huge crash. (It didn’t work for the frozen shoulder though!)
Wow!
First, I worked briefly for the CSO of a small-pharma/rare-disease company and LOVED being surrounded by scientists whose response to failure--in general--was, "EXCELLENT! More data!"
And meant it.
In a good way. 😉
I'm also the person at the doctor's office asking, "ok, if this doesn't work as expected/if this goes wrong, what will that look like?" I think of it as my version of your Seth Rogen meme.
I also went looking for the sensate device as I've been very interested in Vagus nerve research. I now have a 10%off coupon code for anyone who is interested. (posting the code seemed tacky, so DM me if you'd like me to share it with you.) I'm looking forward to testing this.
I can say that I'm finding the Visible app to be quite helpful. (and goblin tools, but that may be more ADHD than fog 🤪)
I love my Sensate! I’ve had it for a few years. It really helps when you need to calm the nervous system but don’t have the spoons you need to listen to a guided meditation.
Check out my latest Rodeo post, where I do a deeper dive on the Visible Plus wearable.
I love your scientist/failure comment! 🤓
WOW! That’s really amazing
How nice to see a mid-week piece from you! I had no idea that a stressful week at work had such a negative impact back in 2021. Your ability to track and analyze all your treatments just amazes me. Looking forward to the next piece! ❤️
Yeah, it was a huge bummer because I was doing soooo much better for about four months and then BOOM. In a future post, you’ll see a pic of me actually laying in the grass after our fall luncheon where I had to speak. I laid down as a joke at first but I really needed it!
I written my own version in my head a few times but I never write it down b/c I think things are always in too much in flux -- even after 3+ years. Here are a couple of ruminations on pieces of your list... Low histamine diet -- I started this when I figured out my skin rashes were from MCAS. For that particular manifestation of MCAS, the diet (plus antihistamines) is invaluable. LDN -- this has been a plus for me, but with the benefits primarily in less brain fog. That's a big plus for me, but I've been surprised that my energy envelope hasn't changed. So, my better hours are better, but they are still quite limited, and I am less aware of when I need to take a break. Have to be even more proactive about pacing. Supplements.... I've got a list of things that I think help slightly but not significantly: tumeric, Mirica (PEA-LUC), boswellia, and Alpha-GPC. Each of them has a rationale that made sense to me at some point, and I've stuck with them b/c at a minimum they don't make anything worse...
It’s so hard to know when to cut bait on each supplement. I often wonder if it’s doing anything behind the scenes that might be helpful. I just added resveratrol and NAC back in because I read a few things about long haulers needing anti-oxidants.
Your description of how LDN helps you lines up with what I’ve heard from some others; it hasn’t been a huge miracle, but takes the edge off the cognitive fatigue.
I’ve been on H1 and H2 blockers for three years now. I know they’ve helped because the blood and urine tests for MCAS have come back normal now. The only thing though that has helped the eczema (which I do think is an MCAS reaction) is cutting out dairy. Within a week, it was gone.
If you (and others) are interested, there is a need for beta testers if an app the FDA is launching to gather case reports for people with Long COVID. It's to collect info on what we've tried and what has helped (and what hasn't). I can send more info if you're interested. I'm one of the patient reps on the project.
Oh, thank you Michael. Definitely send along and I’ll include it in my post Sunday if you’d like.
Since it's still in the beta test stage, we aren't supposed to publicize it too broadly. So, it's not ready for a post. Could we do a chat thread?
Amy, how terrific that you shared your list. I think many will find it helpful. However, anyone as immature as I, will adore your selection of graphics. xo
🤭🫠🤗
You continue to inspire so many people in so many ways. Appreciation 💕💕
I was talking with my friend, who also has LC, and she said it is one of those subtle things that help, but we don't necessarily see/feel the difference. For Methylene Blue, you need to have a lab called G6PD and it has to be negative for you to be able to take it safely. It is also contraindicated with SSRIs and other drugs , so people really need to check these things before taking it. That being said, I noticed the difference in energy right away. I'm now functional in the afternoons (most days if I don't over do it).
I was also an early participant in the IncellDX before it was commercialized and it’s didn’t work for me either. Other fails on my list are red light therapy and hyperbaric oxygen. Fluvoxamine did help with my brain fog initially. I stopped it recently to be able to take Methylene Blue (a lot of drugs are contraindicated with this one so do your research). This has helped with my fatigue, but not PEM. Oxygen at night also helps me. My oxygen saturations dropped low while sleeping from my dysautotonia. Pacing is my life now.
Interesting- I haven’t looked into methylene blue at all. I just ordered a red light therapy box that’s coming this week. We’ll see. I figured it’s one of those things that’s supposed to be good even for healthy people, so my husband can get use out of it too.
Well, you certainly have been around the block or two on this mission.
I noticed that you did not mentioned Famotidine. I mentioned this in one of my newsletter. Granted it's a long shot.
https://jkd0811.substack.com/p/a-few-items-this-week?utm_source=profile&utm_medium=reader2
You mentioned CBD and I am very leery of this product as I am of all "wellness" products. I have found that CBD, like other vitamin/herbal industries, is pretty unregulated and you never know what you're gonna get. Many fail to have consistent potency, have heavy metal contaminants, unknown fillers and even drugs. There have been numerous cases on this. So, I think this is a good place to start.
https://www.opss.org/opss-scorecard-check-your-dietary-supplement
I wonder if a fecal pill would help your gut microbiome, you read my bit on Human Microbiome.
Stay curious
Oh yeah, I certainly didn’t mention all the drugs I’ve taken or have been taking in this list. I’ve been taking Famotidine for almost three years now, along with montelukast and hydroxyzine- all for post-COVID MCAS. They must be working because my serum tryptase and leukotrienes are all under control. Also, I tried going cold turkey off the hydroxyzine and had a pretty significant MCAS reaction, so I went back on it.
I should have known.:) Glad that's working at least. Wasn't kidding about the fecal transplant, didn't include this link originally. https://www.medicalnewstoday.com/articles/gut-bacteria-may-play-a-role-in-the-development-of-long-covid
One more thing GLP-1 antagonist on your list?