I also got Covid in March April 2020. Now in Year 3 of lingering symptoms. My heartfelt sympathy with anyone who has this. It has lowered my quality of life and longevity by quite a bit.
Thanks so much for liking my recent post. I too got COVID in March 2020. Recovery began many months later. I hope that you'll take the time to go back to earlier posts. The strategy that led me back to health is all laid out. My Substack is free and open to all, although I'm very happy to accept paid subscriptions. Kind regards...
I found your Substack when I first joined and I read your earlier posts. I agree with you about the role of the mitochondria. Thanks for what you do here.
Based on reducing inflammation and nourishing my mitochondria, my health has returned to near normal. I hope that the insights that I've offered can help you and others to return to robust health.
Maybe I missed it, but I haven’t read anything about the COVID-19 vaccine in your articles or interviews yet. And it seems nobody else wants to know... So please forgive me. I’m curious, did you get the vaccine, Amy?
Wow, good catch. I was waiting for the day when someone would notice that!
So, here’s the story. I got my first two Pfizer shots in 2021 and then one booster in 2022. They made me feel truly awful each time, intensely for 36 hours, and then worse than long COVID baseline for two weeks each time before dumping me back at baseline.
Since 2022, I have personally heard of hundreds of vaccine-injured long haulers - similar symptoms to mine, but from the vaccine. My mother in law and father in law both had this happen (both dealing with terrible fatigue for over a year now). Some friends have had family members in even worse shape; one long hauler friend’s son has bone necrosis in his hips, which began soon after the vaccine. I am not a conspiracy theorist in any way, but the long COVID study webinars I’ve been on are made up of 30-40% vax-injured long haulers or caregivers looking for answers. The media is not sending these messages, because they don’t want deter people from getting vaxxed. I sort of get it.
The Yale LISTEN study that I’m in as a long hauler has hundreds of vax-injured people registered as a separate cohort. I’m so glad an institution like Yale is no longer ignoring these folks.
Lastly, I asked my functional medicine doctor in late August about my getting any of the upcoming fall shots (C-19, RSV, flu), and his answer was: “I can’t in good faith advise any of my long COVID patients to get these shots. We just don’t know enough yet about how they will impact you.” He’s an MD with many decades of experience who basically invented functional medicine, so I trust him implicitly.
So...as you’re getting the sense, I don’t cover it in my newsletter because I don’t feel right weighing in either way. I’m not anti-vax, but I’m not exactly pro-vax either. And I don’t want to influence what anyone decides to do or start any kind of political fury in my (intentionally) light-hearted newsletter. I hope that makes sense.
Yes, that makes total sense and I understand it can cause political fury. Thank you so much for your thoughtful and thorough answer. Everyone has such different outcomes so it truly is such a complex subject to navigate.
I wish you all the best on the rest of your journey, Amy. 🌼
Thank you for asking (and for understanding). You’ve prompted me to include this response in my post tomorrow. There may be others wondering the same thing. I refer to you as “an astute reader,” but if you’re ok with me actually naming you, let me know (no pressure!).
I had Long Flu beginning in 2001. Then began the downward cascade of my health via strange autoimmune conditions. The positive is; After a two month hospitalization from Covid, my issues were comparatively small. No LC today, but still lingering autoimmune.
I’m a fellow Long- hauler and COVID related brain injury sufferer. Thank you for sharing your story and creating community. Sending good wishes always.
My husband has long covid. He was super fit/ athletic before! We paid for a private doctor in Dec 22 and she prescribed gut antihistamine which he didn’t take but we did try a low histimine diet which has worked wonders. He’s back to 65% health now. We still have to be careful with energy accounting but he has a quality of life I wasn’t sure I’d see again. When he was too weak to hold our new born baby it broke my heart - this and heart racing, tingles and fatigue continued for years! I’m not saying low histamine would be the right fit for everyone but it’s been such a magic wand for us.
Our supplement cupboard is overflowing and we’ve been away a week so he’s not taken any and there’s no dip in health. ✨🙏
Thank you for reading, Claire, and for your comment! I’m so happy to hear that he’s getting there. Your husband likely has mast cell activation syndrome (MCAS), which so many of us have now during long COVID. I have been on all manner of antihistamines for two years now. I also tried the low histamine diet, but it didn’t seem to do anything for me. I’m now on a gluten- and dairy-free diet, which has helped a little. Interestingly, I tried going off of one of the antihistamines a few months ago to disastrous results. My doctor said this pretty much proves the MCAS, even though I already had tests that showed it. This dang illness is so heterogeneous; it seems like no two people respond to the same drugs, foods, supplements, or lifestyle changes. Grrr...
I can recommend that your husband checks out Mardi’s Substack (she commented above all this). The mitochondria are the focus of many researchers at this point and seem to be key to fixing. I also really got a lot out of Alex Howard’s book Decode Your Fatigue (which also discusses mitochondria and what’s known as the ‘cell danger response’). I hope he continues to recover!
Vit D3 dosage matters. Duration of supplementation matters. (Vit D3 supplementation is dilatory and can take months to raise serum levels.) Taking D3 with a high fat meal matters (D3 is a fat-soluble vitamin). With magnesium deficiency, vit D activity is reduced.
For my wife, getting her 25OHD (vit D metabolite) level up has reduced her A1C (diabetes measurement) and improved her kidney function.
Vit D is key for healthy immune function and people are _often_ deficient in it. Sick people tend to not get much sun.
I’m glad I stumbled upon your newsletter today. I’m over here on Substack sharing a memoir on my own twisted story of living in a body that is “unfixed.” In my day job I run a production company that shares patient narratives and last year we partnered with Solve ME to create a four-part miniseries on ME and LC. A really powerful cast cane together to share. If you’re interested in watching I can send you the YouTube link.🙏💛
Oh wow - it’s you! I saw your recovery video with Dan from Pain Free You a few weeks ago. Glad you found me; I’d love that link. Heading over to subscribe to your newsletter now 🏃🏻♀️
I also got Covid in March April 2020. Now in Year 3 of lingering symptoms. My heartfelt sympathy with anyone who has this. It has lowered my quality of life and longevity by quite a bit.
I’m glad you’re here. We can trade notes.
Be happy to. 🙂
Hi Amy,
Thanks so much for liking my recent post. I too got COVID in March 2020. Recovery began many months later. I hope that you'll take the time to go back to earlier posts. The strategy that led me back to health is all laid out. My Substack is free and open to all, although I'm very happy to accept paid subscriptions. Kind regards...
I found your Substack when I first joined and I read your earlier posts. I agree with you about the role of the mitochondria. Thanks for what you do here.
Hi Amy,
Based on reducing inflammation and nourishing my mitochondria, my health has returned to near normal. I hope that the insights that I've offered can help you and others to return to robust health.
Maybe I missed it, but I haven’t read anything about the COVID-19 vaccine in your articles or interviews yet. And it seems nobody else wants to know... So please forgive me. I’m curious, did you get the vaccine, Amy?
Wow, good catch. I was waiting for the day when someone would notice that!
So, here’s the story. I got my first two Pfizer shots in 2021 and then one booster in 2022. They made me feel truly awful each time, intensely for 36 hours, and then worse than long COVID baseline for two weeks each time before dumping me back at baseline.
Since 2022, I have personally heard of hundreds of vaccine-injured long haulers - similar symptoms to mine, but from the vaccine. My mother in law and father in law both had this happen (both dealing with terrible fatigue for over a year now). Some friends have had family members in even worse shape; one long hauler friend’s son has bone necrosis in his hips, which began soon after the vaccine. I am not a conspiracy theorist in any way, but the long COVID study webinars I’ve been on are made up of 30-40% vax-injured long haulers or caregivers looking for answers. The media is not sending these messages, because they don’t want deter people from getting vaxxed. I sort of get it.
The Yale LISTEN study that I’m in as a long hauler has hundreds of vax-injured people registered as a separate cohort. I’m so glad an institution like Yale is no longer ignoring these folks.
Lastly, I asked my functional medicine doctor in late August about my getting any of the upcoming fall shots (C-19, RSV, flu), and his answer was: “I can’t in good faith advise any of my long COVID patients to get these shots. We just don’t know enough yet about how they will impact you.” He’s an MD with many decades of experience who basically invented functional medicine, so I trust him implicitly.
So...as you’re getting the sense, I don’t cover it in my newsletter because I don’t feel right weighing in either way. I’m not anti-vax, but I’m not exactly pro-vax either. And I don’t want to influence what anyone decides to do or start any kind of political fury in my (intentionally) light-hearted newsletter. I hope that makes sense.
Yes, that makes total sense and I understand it can cause political fury. Thank you so much for your thoughtful and thorough answer. Everyone has such different outcomes so it truly is such a complex subject to navigate.
I wish you all the best on the rest of your journey, Amy. 🌼
Thank you for asking (and for understanding). You’ve prompted me to include this response in my post tomorrow. There may be others wondering the same thing. I refer to you as “an astute reader,” but if you’re ok with me actually naming you, let me know (no pressure!).
I had Long Flu beginning in 2001. Then began the downward cascade of my health via strange autoimmune conditions. The positive is; After a two month hospitalization from Covid, my issues were comparatively small. No LC today, but still lingering autoimmune.
Glad you found me here, so that I could find you. Looking forward to hearing more of your story, Paul.
I’m a fellow Long- hauler and COVID related brain injury sufferer. Thank you for sharing your story and creating community. Sending good wishes always.
Really glad you’re here, Dania 💛. If there’s any related topic you want to hear more of, I’d love to know your thoughts.
My husband has long covid. He was super fit/ athletic before! We paid for a private doctor in Dec 22 and she prescribed gut antihistamine which he didn’t take but we did try a low histimine diet which has worked wonders. He’s back to 65% health now. We still have to be careful with energy accounting but he has a quality of life I wasn’t sure I’d see again. When he was too weak to hold our new born baby it broke my heart - this and heart racing, tingles and fatigue continued for years! I’m not saying low histamine would be the right fit for everyone but it’s been such a magic wand for us.
Our supplement cupboard is overflowing and we’ve been away a week so he’s not taken any and there’s no dip in health. ✨🙏
Wishing you a bright day!! 💕
Thank you for reading, Claire, and for your comment! I’m so happy to hear that he’s getting there. Your husband likely has mast cell activation syndrome (MCAS), which so many of us have now during long COVID. I have been on all manner of antihistamines for two years now. I also tried the low histamine diet, but it didn’t seem to do anything for me. I’m now on a gluten- and dairy-free diet, which has helped a little. Interestingly, I tried going off of one of the antihistamines a few months ago to disastrous results. My doctor said this pretty much proves the MCAS, even though I already had tests that showed it. This dang illness is so heterogeneous; it seems like no two people respond to the same drugs, foods, supplements, or lifestyle changes. Grrr...
I can recommend that your husband checks out Mardi’s Substack (she commented above all this). The mitochondria are the focus of many researchers at this point and seem to be key to fixing. I also really got a lot out of Alex Howard’s book Decode Your Fatigue (which also discusses mitochondria and what’s known as the ‘cell danger response’). I hope he continues to recover!
Has anyone here tried taking high doses (20,000 IU) of vitamin D for 2+ months and found benefit?
I’ve been in several Facebook groups for over three years now and I don’t know a single person for whom one supplement made a difference.
Vit D3 dosage matters. Duration of supplementation matters. (Vit D3 supplementation is dilatory and can take months to raise serum levels.) Taking D3 with a high fat meal matters (D3 is a fat-soluble vitamin). With magnesium deficiency, vit D activity is reduced.
For my wife, getting her 25OHD (vit D metabolite) level up has reduced her A1C (diabetes measurement) and improved her kidney function.
Vit D is key for healthy immune function and people are _often_ deficient in it. Sick people tend to not get much sun.
I’m glad I stumbled upon your newsletter today. I’m over here on Substack sharing a memoir on my own twisted story of living in a body that is “unfixed.” In my day job I run a production company that shares patient narratives and last year we partnered with Solve ME to create a four-part miniseries on ME and LC. A really powerful cast cane together to share. If you’re interested in watching I can send you the YouTube link.🙏💛
Oh wow - it’s you! I saw your recovery video with Dan from Pain Free You a few weeks ago. Glad you found me; I’d love that link. Heading over to subscribe to your newsletter now 🏃🏻♀️
Here’s the link to the Long Covid/ ME series: https://unfixedmedia.com/long-haul-voices
I remember watching these when they came out. But knowing now that you are the director makes them even more meaningful. Extremely well done!
Oh no way! I didn’t even know that interview was up!!! 🤣
Excited to read more. Thank you also for the helpful recs.
You were part of my inspiration for starting the newsletter! 😊
I believe in you! Continue to inspire and make a difference.
🫶🏻
Love you Amy! Keep up the fight. You are an amazing, strong, and inspirational woman and friend.
Thank you, my dear friend! So glad you joined :)
Looking forward to reading more.