Anyone else got better for a year, now getting worse?

Do your Stanford doctors have any info on LC rebound? I got covid last March, and the LC lasted for 8 months (PEM and chest pain/heart rate). I was an avid cyclists and had to morph to 5 mi rides with naps. In December I started to ramp up my biking to 20 mi/day. Mid-February I was hit by high stress and insomnia, and then LC reamerged; I should have tested for covid but only LC symptoms with fatigue and chest pain. It took a couple of weeks and I'm back to slowly ramping up exercise. I don't take drugs for LC, just rest, healthy eating, trying to avoid stress, and such. I haven't found any research papers on LC rebound (just covid rebound) so I'm waiting for others to respond to your post.

Yes! felt 110% better. Mentally sharp, started walking every day and losing weight - had a lot of reasons to feel confident about the future. Fast forward 2 years and I wake up all night long, and have no appetite. Poor sleep is a bad way to start a day, and not eating guarantees it will get worse. I went through a period of brain fog where I spent most of my time wondering what I was supposed to be doing. So yes, it appears LC can come in waves, or cascade from one thing to another.

I think there is a metabolism component that causes us LC patients to metabolize things more quickly and, thus, build up tolerance that makes meds ineffective. For example, despite eating plenty of unhealthy food for the first year plus of my illness, I couldn’t put on any weight and lost much weight. I thought it was due to taking Acetyl-L-Cartinine, but once I stopped that, I lost even more weight. Similarly, I was on several meds prior to COVID that I all of a sudden couldn’t tolerate following infection. I suspect this metabolism component is part of the reason that Metformin helps people, but I’m no doctor nor I have taken it, so I am speculating there.

I do also think that the meds you mentioned may have also stopped working because they are treating symptoms rather than the root cause. Why they can’t develop a drug that addresses the well-documented, LC-specific mitochondria dysfunction is beyond me, but that seems to be an answer here that would help a lot of this.

Mitrochondria are the cells energy factories. Here is one article (pre covid) on mitrochondial fatigue. Most of the online info on LC and mitochondia is .com garbage. Some mention CoQ10 (also recommended for use with statins) . I mostly inched my way out of LC with the FODMAP diet (was already on it due to autoimmune diseases), sloooowly ramping up exercises, enough rest/sleep, and avoiding stress (one of the most important factors). Chocolate helps (not really, but I'm a chocoholic). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4136529/#:~:text=Fatigue%20is%20a%20hallmark%20symptom%20of%20mitochondrial%20disease.,16%5D%2C%20%5B35%5D.

I've heard LongCOVID described as episodic by healthcare professionals working on it. And I'm on episode#3. Doing all the recommended self care. Frustrating to say the least.

I had covid in 2022 and a few months later I was still suffering from symptoms. I learned from my research that I have long covid, symptoms are basically rapid heartbeat, tremors and sweating. I don’t have any medication to help me with this problem and my anxiety meds do not help, I don’t want to start on different drugs to see what might work, I went through this trying to find an antidepressant and it was a bad experience. I do agree that long covid symptoms come and go, I also noticed that when I’m stressed the symptoms get worse. I recently had a medical scare and had to have a biopsy, I was very worried about getting more cancer and in the process my covid symptoms came back with a vengeance, I even noticed a few new ones like severe constipation and unable to enjoy food. It’s a frustrating thing to go through and I usually ride it out, also I do get some sense of comfort knowing I am not alone, I read the experiences of other people and I learn from others what they have learned in their lives about this virus, I just keep hoping they will have more answers to help us overcome this problem.

yes

Covid twice, March 2020 and Juine 2023

Before the second Covid positive test I felt close to 100%
I'm now improving slowly, but a long way from pre-second Covid bout.

CBD oil seems to help a little.
I still have chronic tinnitus (inner ear inflamation?)
chronic diarrhea
short term memory recover problems -- once I do get the memory the details are there.

Hello, new here!
I experienced symptoms post-covid such as joint pain, fatigue, weird smells, brain fog, but was still functional. I had started having heavier and heavier periods each month starting immediately when I recovered from the illness so I got weaker each month due to low iron. I had a uterine ablation last March to address this and all hell broke loose. Brain fog got worse, muscle weakness is so bad that sitting upright for long periods is impossible. I started naltrexone and have been on duloxetine and metformin for awhile with only small improvements. My immune system is horrible so I catch everything. When I do, Im back at the beginning or slightly worse. Its so frustrating!

Hi
I got Covid for the 4th time in January 2023. I hit long Covid with enlarged heart, breathing problems, was on inhalers. I was an ultra runner. I slowly kept getting better and trained and completed a half marathon at the end of September. Then immediately had a complete crash I’m still trying to get out of. All docs come up with the same conclusion…long covid/ mitochondrial dysfunction.
I’m hoping someone has answers
I’m so fatigued and unable to even to yoga