Post Exertional Malaise

Posted by bettyjackson @bettyjackson, 6 days ago

I have always been the family "Energizer Bunny". But this was my last family gathering I can host.
5yrs of fighting long covid, since Spring 2020. Always determined I could be regular self by grit. Christmas Day I couldn't even get dressed. I didn't care if PrimeRib got cooked or not.(Which I can't smell or taste anyway) I've jumped into almost every suggested idea on this site..... supplements, etc., Skeptical relatives still don't understand. I was @ Mayo LongCovid clinic 4yrs ago, my Primary Doc is sympathetic, but Standard_Of-Care simply doesn't work for this weirdo viral invasion. Only coping strategies offered.
The whole world, millions of people , affected, but still no cures???!!!

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Profile picture for jimthescientist @jimthescientist

The COVID Gut Connection
In my opinion, every effect of long COVID can be traced to issues with the Gut”. Being a scientist, I totally understand breathing, and oxygen transfer. It’s amazing that most of this gas is transported bound to hemoglobin and that the CO2 transports dissolved and converts back to CO2 in the lungs. It’s also amazing that the heart acts as pump and just beats along and when it stops working correctly, we have CHF.

The Gut, however is an amazing and mysterious “system” which we don’t appreciate or understand. You eat a piece of pizza, or for me, blueberries and rolled oats, and two days later, the “gut processing machine” turns it into “Mister Hankey, the Christmas Poo”! If you are unfamiliar with Mister Hankey, I suggest watching the 1997 South Park episode.

But the gut is much more than that and COVID alters these functions in important and destructive ways. COVID creates a long lasting inflammatory and autoimmune dysregulation, effecting our entire body and these effects have a profound impact on the gut. The gut is responsible for most of our immunity and COVID impacts these. The gut is responsible for producing most of our neurotransmitters (Dopamine, Serotonin, GABA, Epinephrine) and COVID impacts these. It even interferes with the mucosal gut barrier, causing (in my opinion) leaky gut, which results in bacteria crossing the gut wall, inflammation, autoimmune issues, histamine release and infections.

The solution: Which has worked for me, since I made the change in March 2021 after living with most of the reported long COVID symptoms, (having contracted it in March 2020): A Gluten free, NO red meat, deli meat, Dairy (with the exception of Greek Yougart), Pizza, donuts, Drive through foods, or ultra processed snack, life. Initially, I had a bad reaction to histamine releasing foods like tomatoes and yogurt, (caused itching and skin eruptions like hives) but that has dissipated, so I now eat these foods. In addition, I take 1500 mg of L proline (the active AA in collagen) and one ounce of “Go Raw Pumpkin seeds” a day. At 71 and having “Old Teeth”, I grind the seeds to a powder in a coffee grinder and add them to my pasta, which is (Veggipasta Rotini from AGT foods. It’s totally gluten free and made from Yellow Pea Flower. For beans, I eat only Organic Pinto beans from 365 Whole Foods Market. Most people will not be willing to do this! My answer; try it for a month and if you see it’s working, you will begin to regain your pre-COVID life. Good luck.

Jump to this post

@jimthescientist Thank you. I will try. I have been eating cauliflower pasta. My gut won't even tolerate fast food at all. What about boiled eggs? Sprouted grains, like Ezekiel bread? Are beans the only protein you use? I would love to hear more of the diet if you don't mind?

REPLY
Profile picture for Lucy @welchllb

@mspaminreno
Yoga Nidra is amazing!! I, too, have practiced it with a local instructor. I don't do it as often now but previously, it got me from A to B. I highly recommend Yoga Nidra and Gez Medinger's book, Handbook to Long Covid, too. I read his book from cover to cover and reference it often,
Best of everything, Lucy

Jump to this post

@welchllb
Thank you, Lucy. Happy New Year.
Pam

REPLY
Profile picture for diverdown1 @diverdown1

@mspaminreno Thank you so much!!

Jump to this post

@diverdown1
You are so welcome...anytime. Happy New Year to you.
Pam

REPLY
Profile picture for mspaminreno @mspaminreno

@welchllb
Thank you, Lucy. Happy New Year.
Pam

Jump to this post

@mspaminreno
Happy New Year to you, too. Now, if I could just solve my GI issues!! 🙂

REPLY
Profile picture for jimthescientist @jimthescientist

The COVID Gut Connection
In my opinion, every effect of long COVID can be traced to issues with the Gut”. Being a scientist, I totally understand breathing, and oxygen transfer. It’s amazing that most of this gas is transported bound to hemoglobin and that the CO2 transports dissolved and converts back to CO2 in the lungs. It’s also amazing that the heart acts as pump and just beats along and when it stops working correctly, we have CHF.

The Gut, however is an amazing and mysterious “system” which we don’t appreciate or understand. You eat a piece of pizza, or for me, blueberries and rolled oats, and two days later, the “gut processing machine” turns it into “Mister Hankey, the Christmas Poo”! If you are unfamiliar with Mister Hankey, I suggest watching the 1997 South Park episode.

But the gut is much more than that and COVID alters these functions in important and destructive ways. COVID creates a long lasting inflammatory and autoimmune dysregulation, effecting our entire body and these effects have a profound impact on the gut. The gut is responsible for most of our immunity and COVID impacts these. The gut is responsible for producing most of our neurotransmitters (Dopamine, Serotonin, GABA, Epinephrine) and COVID impacts these. It even interferes with the mucosal gut barrier, causing (in my opinion) leaky gut, which results in bacteria crossing the gut wall, inflammation, autoimmune issues, histamine release and infections.

The solution: Which has worked for me, since I made the change in March 2021 after living with most of the reported long COVID symptoms, (having contracted it in March 2020): A Gluten free, NO red meat, deli meat, Dairy (with the exception of Greek Yougart), Pizza, donuts, Drive through foods, or ultra processed snack, life. Initially, I had a bad reaction to histamine releasing foods like tomatoes and yogurt, (caused itching and skin eruptions like hives) but that has dissipated, so I now eat these foods. In addition, I take 1500 mg of L proline (the active AA in collagen) and one ounce of “Go Raw Pumpkin seeds” a day. At 71 and having “Old Teeth”, I grind the seeds to a powder in a coffee grinder and add them to my pasta, which is (Veggipasta Rotini from AGT foods. It’s totally gluten free and made from Yellow Pea Flower. For beans, I eat only Organic Pinto beans from 365 Whole Foods Market. Most people will not be willing to do this! My answer; try it for a month and if you see it’s working, you will begin to regain your pre-COVID life. Good luck.

Jump to this post

@jimthescientist
Thank you for your reply. I have not been bothered with any of the conditions you mentioned but, if I remember correctly, Gez Medinger experienced them too and, I think, he went on the same type of diet and also experienced relief. He is located in the UK and caught Covid in March of 2020, as I recall.

REPLY
Profile picture for diverdown1 @diverdown1

It is extremely frustrating. I can completely relate. The PEM that goes along with this damn virus is the worst. Another piece is the people that do not believe or understand it. I can have a good day, where I can function and then there are days where I am only able to lie on the couch. I was always very active and in the best shape of my life when I got hit with Long COVID. Going on 3 years and 5 months now. I take medication that helps me function, but even then, there are days when I am just unable to do much. Have you heard of the web publication the "Sick Times"? Also there is a website that I follow. I will put the links in this comment. Hang in there. You are not alone and even hearing that I feel alone sometimes, but I do get so much from this site from people like you.
https://thesicktimes.org/
https://recovercovid.org/

Jump to this post

@diverdown1

Thanks so much for "The Sick Times" resource!

I am with a few months behind you on dealing with this.

The same thing happens to me.

I don't know how my husband stands this. He has to do everything for me and he is a lot older.

REPLY

COVID Timeline: I'm 71 now. COVID March 2020, brain fog, tempeperature regulation issues, inflammatory GI issues (abdomin swollen and hard (work up for pancreatitis -NEG), skin dysregulation issues (12 skin infections from simple bug bites or cat scratches requiring antibiotics). I ended up with this progressing to dibilitating neuropathy by March 2021 with extreme leg pain and difficulty walking. My hypothesis is that COVID creates an inflammatory/autoimmune condition throughout the body and the solution is to correct it by putting your gut and its microbiome on the attack which I began in March 2021 with the diet I posted. Some things corrected quickly, like the neuropathy, within a month or so, others like the skin infections, took over 6 months.

REPLY
Profile picture for jimthescientist @jimthescientist

The COVID Gut Connection
In my opinion, every effect of long COVID can be traced to issues with the Gut”. Being a scientist, I totally understand breathing, and oxygen transfer. It’s amazing that most of this gas is transported bound to hemoglobin and that the CO2 transports dissolved and converts back to CO2 in the lungs. It’s also amazing that the heart acts as pump and just beats along and when it stops working correctly, we have CHF.

The Gut, however is an amazing and mysterious “system” which we don’t appreciate or understand. You eat a piece of pizza, or for me, blueberries and rolled oats, and two days later, the “gut processing machine” turns it into “Mister Hankey, the Christmas Poo”! If you are unfamiliar with Mister Hankey, I suggest watching the 1997 South Park episode.

But the gut is much more than that and COVID alters these functions in important and destructive ways. COVID creates a long lasting inflammatory and autoimmune dysregulation, effecting our entire body and these effects have a profound impact on the gut. The gut is responsible for most of our immunity and COVID impacts these. The gut is responsible for producing most of our neurotransmitters (Dopamine, Serotonin, GABA, Epinephrine) and COVID impacts these. It even interferes with the mucosal gut barrier, causing (in my opinion) leaky gut, which results in bacteria crossing the gut wall, inflammation, autoimmune issues, histamine release and infections.

The solution: Which has worked for me, since I made the change in March 2021 after living with most of the reported long COVID symptoms, (having contracted it in March 2020): A Gluten free, NO red meat, deli meat, Dairy (with the exception of Greek Yougart), Pizza, donuts, Drive through foods, or ultra processed snack, life. Initially, I had a bad reaction to histamine releasing foods like tomatoes and yogurt, (caused itching and skin eruptions like hives) but that has dissipated, so I now eat these foods. In addition, I take 1500 mg of L proline (the active AA in collagen) and one ounce of “Go Raw Pumpkin seeds” a day. At 71 and having “Old Teeth”, I grind the seeds to a powder in a coffee grinder and add them to my pasta, which is (Veggipasta Rotini from AGT foods. It’s totally gluten free and made from Yellow Pea Flower. For beans, I eat only Organic Pinto beans from 365 Whole Foods Market. Most people will not be willing to do this! My answer; try it for a month and if you see it’s working, you will begin to regain your pre-COVID life. Good luck.

Jump to this post

@jimthescientist
Thank you. I will definitely give it a try. One of the challenges I have is the lack of a Whole Foods store in my area. I'll figure it out, though. Appreciate you!! Lucy

REPLY
Profile picture for jimthescientist @jimthescientist

The COVID Gut Connection
In my opinion, every effect of long COVID can be traced to issues with the Gut”. Being a scientist, I totally understand breathing, and oxygen transfer. It’s amazing that most of this gas is transported bound to hemoglobin and that the CO2 transports dissolved and converts back to CO2 in the lungs. It’s also amazing that the heart acts as pump and just beats along and when it stops working correctly, we have CHF.

The Gut, however is an amazing and mysterious “system” which we don’t appreciate or understand. You eat a piece of pizza, or for me, blueberries and rolled oats, and two days later, the “gut processing machine” turns it into “Mister Hankey, the Christmas Poo”! If you are unfamiliar with Mister Hankey, I suggest watching the 1997 South Park episode.

But the gut is much more than that and COVID alters these functions in important and destructive ways. COVID creates a long lasting inflammatory and autoimmune dysregulation, effecting our entire body and these effects have a profound impact on the gut. The gut is responsible for most of our immunity and COVID impacts these. The gut is responsible for producing most of our neurotransmitters (Dopamine, Serotonin, GABA, Epinephrine) and COVID impacts these. It even interferes with the mucosal gut barrier, causing (in my opinion) leaky gut, which results in bacteria crossing the gut wall, inflammation, autoimmune issues, histamine release and infections.

The solution: Which has worked for me, since I made the change in March 2021 after living with most of the reported long COVID symptoms, (having contracted it in March 2020): A Gluten free, NO red meat, deli meat, Dairy (with the exception of Greek Yougart), Pizza, donuts, Drive through foods, or ultra processed snack, life. Initially, I had a bad reaction to histamine releasing foods like tomatoes and yogurt, (caused itching and skin eruptions like hives) but that has dissipated, so I now eat these foods. In addition, I take 1500 mg of L proline (the active AA in collagen) and one ounce of “Go Raw Pumpkin seeds” a day. At 71 and having “Old Teeth”, I grind the seeds to a powder in a coffee grinder and add them to my pasta, which is (Veggipasta Rotini from AGT foods. It’s totally gluten free and made from Yellow Pea Flower. For beans, I eat only Organic Pinto beans from 365 Whole Foods Market. Most people will not be willing to do this! My answer; try it for a month and if you see it’s working, you will begin to regain your pre-COVID life. Good luck.

Jump to this post

@jimthescientist
What about lactose-free dairy? Cheese? Thanks, again. Lucy

REPLY

Thank you so much for this post. I have had Covid x 2 over the past 5 years. The medical system doesn't seem to be able to help. I have little energy and lately almost none. It is an effort to get up in the morning and to do anything is overwhelming. I just want to sit or sleep. I have COPD from Covid and am on inhalers as well. Remain short of breath on any exertion. Medical profession state they can't do anything more for me. My husband has to do just about everything around the house. I am 76 and use to be a bundle of energy before all this happened. I can no longer entertain, go to church, or see my friends. I feel depressed and useless. Thank you for the information provided. Maybe I can find something useful to grant me some quality of life.

REPLY
Please sign in or register to post a reply.