Post Exertional Malaise with Long Covid: How do you cope?

Have you looked into Amino Acids? They help provide our mitochondria with energy. Just a thought.
Hugs,
Pam

@jimthescientist in addition to LC now, I have to be Lactose free. Ad I have a condition of IBS because I was on so many anto biotics from do many badder infections.cat eat blueberries , only pinnapple.
Thank goodness for THAT. But I found out that lactose free yogurt
Is my savior. So my breakfast is
Oatml, cooked with lactose , a tspn
Of chia seeds and a handful of walnuts . Then I have Greek Lactose Free yogurt. I find, what’s weird, is sometimes I’m so starving hungry ,all of a sudden, that I eat protein like crazy. Other times I find I have no appetite and could care less if ever touched food ever again! BUT, FOOD IS MEDICINE,
I know, so I then eats little bit very often. I find protein bars, like
Atkins bars, that don’t have “ “ sugar” , something I can eat, and carry with me , and just little bites
Of it often sit well in my tummy.

@mspaminreno Thank you!!

@shelleyr
I had another thought. Dr. Paul Anderson (free) on YouTube has a lot of good things to say about supplements; particularly amino acids.
For starters, I give Taurine 5 stars.
My best,
Pam

@mspaminreno Thank you. ❤

You're so welcome. 🙂

I have had long covid since March 2020 and could not find anything that would get me over post exertion malaise except extreme pacing. I did start on low dose naltrexone about a year ago now and it has really helped. I have energy until about 2 pm and then crash until 4pm but I have energy to make dinner. It also took most of the pain away from the constant inflammation. And I can walk about 2/3 of a mile every morning again.

You do have to start low and progress slowly to minimize side effects. I started low and it made me very sleepy so it was great at bedtime...until it gave me insomnia two weeks later. It also gives you quite trippy dreams at first. Now I take it in the morning and it gives me a burst of energy about 2 hours later. Doc has said I could split up the dose so I get energy twice a day but I have not tried that,

@db72 does anyone understand why Naltrexone is helpful for lc? How do you convince your doctor to prescribe when it is clearly formulated for addiction issues?

I wanted to comment about Post Exertional Malaise and Naltrexone. I got LC in December 2023. I was referred to a long Covid clinic at a local hospital. They prescribe naltrexone for their LC patients. I was told that it helped many patients feel better and have more energy. Doctors started me on low-dose and it was OK for a while until they wanted to up the dose just a little. It seems it was never compatible with me after that. At one point, I was telling the pharmacist that I felt like I had consumed too much alcohol. Almost felt hung over the next day. The pharmacist tried two more formulations with no success and so I finally gave up on Naltrexone.
I thought I would never get rid of some of the tiredness until my husband, who is a scientist and worked in bio Pharma for many years, found a journal paper out of Europe. It chronicled a study that used an amino acid called L-Arginine for LC patients. I started taking this about two months ago and I am very pleased at the results. I am taking 2-500mg. capsules three times a day. My Nephrologist suggested I take it about six hours in between each dosage. So far, I am very pleased with the amount of energy I have.
Like many of you, I cannot believe that we have become sick with this serious illness and yet after five years, there’s no medical consensus on how to best treat patients. The way it manifests in all of us seems to be a bit different. Commonalities shared are mostly the fatigue and brain fog but then the way it seems to attack everyone’s bodies is so varied. I am still trying to understand what this is and the best way I can help myself. I’m very grateful for the opportunity to hear about the journey all of you are experiencing. Thank you for letting me share my challenges.

@krutsala12 Naltrexone helps regulate the immune system at low doses and for me, it has taken away all of the pain caused by the LC inflammation...and gives you a little burst of energy about two hours after you take it. There is plenty of documentation for your doc on low dose naltrexone as it is being used for long COVID, chronic fatigue, myalgic encephalomyelitis, fibromyalgia, multiple sclerosis and Crohn's disease. ..to name just a few.

Here is a link to just one of multiple studies your doc can peruse:
https://pubmed.ncbi.nlm.nih.gov/38267326/