This is so confusing. Long COVID? Parkinson's?

I know Carbidopa/Levodopa is pretty standard for Parkinson's. My husband is being evaluated for that but he's also wondered if he has Long Covid which can cause his symptoms too.In researching Long Covid I found that a reduction in dopamine-releasing neurons is seen in the brains of people with long COVID.Some of the meds mentioned were things I'd never heard of:Promote dopamine neuron survival with neurotrophic factors such as GDNF (glial cell line derived neurotrophic factor) or BDNF (brain-derived neurotrophic factor)MAO-B inhibitors (for example selegiline) or COMT inhibitors ( like entacapone) to prolong dopamine availability.Dopamine agonists (e.g. pramipexole) to stimulate postsynaptic receptors.

Dopamine agonist was the first drug I took before levodopa, and I took it along with levodopa for a number of years but currently don't take it. The reason I don't is becasue it doesn't interact well welll with COMT inhibitors, which enhance the impact of levodopa and is what I also take now. Additionally, I take a MAO-B inhibitor, which I find very effective for relieving stiffness. My neurologist has been very good in prescribing an effective combuination of drugs to treat my PD. Not always perfect but generally effective.

My husband takes Carbidopa since 2 years, but noticing increased spasms in mouth and face.Other parts of body are fine.Any recommendations ?

@sjde53 my wife has been on levodopa and caridopa since 2012 and hasn't experienced any long COVID-19 symptoms. She's tried Opicapone a COMT inhibitor and seligine, but is very sensitive to medications. Her biggest challenge has been between her autonomic dysfunction due to advanced parkinson's disease. Also she's suffered two lacunar strokes. One in the left basal ganglia and another in the left external capsule. She's also been diagnosed with a severe stenosis in the right vertebral artery of her brain which controls blood flow to the back of her brain. The reason I am including this is the levodopa and caridopa can significantly drop blood pressure and it can affect symptoms in your body that can that mimic long COVID19.

Some background from Google.

Orthostatic hypotension (OH) in Parkinson's disease can mimic some of the hallmark symptoms of Long COVID-19.

Both conditions cause dysfunction in the autonomic nervous system, leading to similar symptoms when standing, such as dizziness, lightheadedness, fatigue, brain fog, and fainting.

While medication (such as levodopa) and the underlying Parkinson's pathology itself frequently cause OH, Long COVID frequently triggers a related autonomic issue known as Postural Orthostatic Tachycardia Syndrome (POTS). Because the symptoms overlap significantly, diagnosing the exact cause of dizziness or fatigue requires clinical testing (such as a standing blood pressure/heart rate test).

I have read others talk about tremors with Long COVID. I have not experienced that. Fatigue...YES. Awful fatigue. I believe it is all related to chronic inflammation and that includes the central nervous system. They do not really know enough yet, but inflammation affects all the organs. This is the most recent peer reviewed systematic review I can find. It is a bit clinical, but at least the research is happening, although not fast enough for my liking. 🙂
Chen, K., Wang, Z., Li, J., Xu, Y., Gu, S., Li, H., ... & Mao, N. (2025). Chronic inflammation in Long COVID relationship to autoimmune diseases. Autoimmunity Reviews, 103882.
https://doi.org/10.1016/j.autrev.2025.103882

This one discusses tremors.

Caliman-Sturdza, O. A., Gheorghita, R., & Lobiuc, A. (2025). Neuropsychiatric manifestations of long COVID-19: a narrative review of clinical aspects and therapeutic approaches. Life, 15(3), 439
https://doi.org/10.1016/j.amjmed.2024.07.008

If you go to Google and type Google Scholar in the search bar, it brings up the site and you can type in "Long COVID and tremors" or whatever you are looking for. It will bring up many research articles. Some are accessible and some are not. Just something to try.

I have been ill for a couple of years with the myriad of doctors having no idea. Obviously I am giving it all a good deal of thought now that one just finally suggested Long Covid. If having Covid (twice for me) AND/OR getting the vaccine (I got them all) kills the germs and immunity in your body, isn't it possible that is what is really going on is merely no protection from other illnesses/germs? Our symptoms are so diverse. So if we treat the symptoms, it is the most we can do to help ourselves? Personally, the biggest problem I have is no strength in my legs; I can barely stand up for a minute or two but I can walk a little before having to sit down. Does it follow that if I really attempt to build muscle by eating more protein and exercising that I will get back to normal at least until the next illness comes along? I am very interested in your thoughts. Please comment.

@truwomandi I am a believe that it is all about the immune system and inflammation. I did not get the vaccine. I have never gotten a flu shot, and I have never had the flu. I have been exposed to the flu though. This is a new virus, as you know. This virus, our bodies do not know how to fight. In fact, I believe it tricks our immune systems into fighting our immune system. That sounds crazy, but I have been reading about this since I got nailed in June of 2022. I had the virus in Jan. of 2022 and then in March 2022. So, I went 3 months and I was good...then I was smacked down one morning when I woke up. It has never left. Treating the symptoms is the only thing I have found that helps. I also fast for a day or two and that seems to help some of the symptoms. If you can exercise, build muscle, without the post-exertion malaise or fatigue, do it. I really try to keep myself living one day at a time. I do what I feel like that day...I also pay for it the next. Have you had your legs checked? Pulse in your ankles? Is it joint pain? Can you do leg exercises and not have symptoms? Just curious. Thank you for posting.

@diverdown1 I have knee pain attributed to arthritis (?) and I have had ankles checked. I think every test known to man until one doc said he thought it was LC. That is the first thing that made sense but it is depressing if there is nothing that can be done. yes, I can do exercises but only for a very short time, I have decided that it is useless going to doctors so I will have to do the best I can for myself, I am a bit (haha) stubborn so that will probably work more than anything, I plan to take some clogging lessons using my walker for support. No use sitting here letting my muscles wither further. Thanks so much for your response