Has anyone completely gotten over Long Covid? Please post here

Posted by bermuda8 @bermuda8, 4 days ago

Hi - I went to the Mayo's Long Covid program and the Dr. told me "the good news is that it will eventually go away". Hoping to hear from some folks that are completely over Long Covid. I am hopeful this will be the case for everyone suffering from this awful illness eventually. Most likely once someone gets over Long Covid they probably stop following this message board. It would be great if they would post their circumstances and it also would give us some hope.

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

@britelite

My journey through LC may be little different from others as I didn’t experience the POTS, PEM, brain fog or overwhelming exhaustion - symptoms that seem difficult to treat. In Feb. 2023, couple weeks after a mild case of Covid treated with Pavlovid, I started to get short of breath after walking a short block, whereas before, I could walk a mile and swim with no problems. My heart rhythm slowed and became erratic. My previously well controlled asthma flared up. Eventually, in May, I developed complete heart block requiring a pacemaker. I lost my appetite and could not eat. Had anxiety attacks where I wanted to jump out of my skin and went into a period of depression. I took a six month course of escitalopram and got better emotionally. I had complications with my pacemaker, had a run of atrial fib and a few episodes of congestive heart failure and pericardial effusion. In January, 2024, the pericardial effusion was drained, and pacemaker leads repositioned. I was still struggling with the asthma needing to use inhalers and nebulizers. By June of that year, I was getting better - started swimming and traveling again. Today, I’m still left with chest tightness/heaviness but can manage with Symbicort and Albuterol inhalers. So, I guess I’m more or less over long COVID but my ailments were more concrete and treatable. My heart goes out to those still struggling with the brain fog and exhaustion that do not have any definitive cures. With the present administration, I’m afraid any further research into long COVID will be halted - our local LC clinic has closed. Bless all of you still suffering and keep fighting.

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@britelite A good point; one of the challenges of LC for me has been trying to discern between which symptoms are attributable to LC and which are not, and then taking care of what I can. Thanks for your input and glad you're feeling better.

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@ejrussell1

After 4 years of no help from doctors, with 74 symptoms.
I found this guy I’ve been on herbs and essential oils for 6 months now,and I am relieved of all my symptoms and working on my memory. That is improving every day. Roughly a 10 month regimen. It has changed my life which was already turned upside down .
from LC .
Stay strong and be kind to yourself ❤️‍🩹

Sky Ridge Acupuncture and Oriental Medicine
Address: 1005 Disk Dr. Suite 103,
Bend, OR 97702
Phone: (541) 208-4112

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Wow, you mention 74 symptoms?! Yikes!
Thank you for that address, etc, but which symptoms in particular did you find the herbs and oils helpful with?

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Hi, yes, you've raised an excellent question.
I had what I consider to be the same illness, then called "CFS" or "ME", in the early nineties, after an otherwise normal-seeming flu.
I found no effective treatment then, but it did indeed lift away on its own after about two years. (My then girlfriend had also come down with it.)
So, I doubt that LC is a "life sentence", as others on this forum have suggested.

Just over a year ago I finally caught Covid, after having been on top of all my vaccination regimen, and the acute phase was actually very mild--took me a few days to even bother testing for Covid-19--but it did indeed lead to the pretty much identical-feeling Long Covid phenomenon.
In both that earlier instance, as well as the current one, my primary symptom by far is simply that of fatigue, along with some "PEM" and mild "brain fog".
Sounds like you're in a similar boat symptom-wise.
We should both consider ourselves lucky compared to many others on this board who have a wide array of sometimes extremely nasty symptoms, with whom we can only express sympathy!
I finally snagged an appointment with my PCP whom it was necessary to see (as opposed to physicians assistant), since certain drugs are classified as "Schedule 1" due to abuse potential.
I essentially explained to him that, despite decades of research (including that on CFS), as well as, more recently, over a BILLION dollars of research funding in the U.S, there is still NO definitive cause OR treatment for this widely varying disease (in terms of presentation) yet determined conclusively. (There are a lot of treatments and approaches, with many of them arguably successful largely more in terms of their impact upon the promoting doctors' pocketbooks, in my opinion, and one need be a mite skeptical.)
So, I said to my doctor, since we can't treat the undetermined CAUSE, why don't we just treat the SYMPTOM(s)?!
That being primarily fatigue, in my individual case, which I had found to be partially alleviated with a few daily cappuccinos, we agreed on a prescription for a modest dose of methylphenidate, aka Ritalin, a CNS stimulant (not actually an amphetamine, BTW).
I have only been on this for a couple of weeks, but it seems to be helping substantially--my wife agrees--so, assuming you're not susceptible to drug abuse/addiction, you might want to try this route with a cooperative MD.
It's helpful specifically for fatigue and alertness, and I can now, for example, walk several blocks with no difficulty. I tend to take it around noon (my mornings are my better time anyways), and it fades completely away by bedtime.
There are similar drugs in this category, often prescribed for ADHD (which I likely have some symptoms of as well; again ask my wife, LOL!), and they might be useful instead. You might prefer one that is more sustained release, for example.
Hope this helpful; Do consider it!
MDs in general are pretty clueless--not their fault, really--so we need to step up a bit and guide them!
Best of luck, and it's on you to be proactive.

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@lkirnbauer

I’m sorry you’re suffering. I too have Long Covid, since December of 2022. My symptoms have gotten better since having the virus, but I believe my first symptoms began after the very first Covid Vaccine. I detected a metal taste in the back of my throat after receiving it. It wasn’t until I actually caught Covid, the virus, that I lost my taste and smell on day 2 of the virus. I also had the usual symptoms, balance issues, stuttering, body tremors, which I still have on occasion if I push myself too hard, fatigue which is much better. I still don’t have my taste or smell, but my other symptoms are better. I also went to the Northwestern Covid Clinic and saw Dr. Koralnik, the Chief of Neuro and Infectious Disease and he told me that I would not be getting my taste or smell back if it’s been over a year! I’m choosing not to listen to him! Is that the person you saw? I don’t know how 2 people with Long Covid can be told different things? I think they’re just guessing at this point, which doesn’t set well with me. We are tough like you said, but it’s getting very old!

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Kimbauet -
Could you tell all of us more about your experience with Dr. K at NMH?
1. Meds recommended or
administered?
2. If so, which one(s)?
3. If not, why not?

The ONLY med I’ve heard that Dr.K uses for LC is Amantadine, but that med has a long list of very un-
pleasant side effects - maybe worse than LC symptoms.
You say your symptoms have gotten better! How much? Which ones? Any idea about why. Please tell us what you can about your improvement. So many write tif-bits about their experience with LC but leave us in the dark about how and why they got better.
Some say low dose Naltrexone helps but it also has brutal side effects. Those who have reported using it say nothing about the side effects, if any. We need to hear all, not just rid-bits, if you are willing to take the time and make the effort.
Thanks, and best wishes, Kim.
Stuart

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@sandguy

Wow, you mention 74 symptoms?! Yikes!
Thank you for that address, etc, but which symptoms in particular did you find the herbs and oils helpful with?

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All of them, slowly disappearing. I must mention there is a diet modification involved. I am so grateful I found this guy. I believe he saved my life.

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@stuartkjones4

Kimbauet -
Could you tell all of us more about your experience with Dr. K at NMH?
1. Meds recommended or
administered?
2. If so, which one(s)?
3. If not, why not?

The ONLY med I’ve heard that Dr.K uses for LC is Amantadine, but that med has a long list of very un-
pleasant side effects - maybe worse than LC symptoms.
You say your symptoms have gotten better! How much? Which ones? Any idea about why. Please tell us what you can about your improvement. So many write tif-bits about their experience with LC but leave us in the dark about how and why they got better.
Some say low dose Naltrexone helps but it also has brutal side effects. Those who have reported using it say nothing about the side effects, if any. We need to hear all, not just rid-bits, if you are willing to take the time and make the effort.
Thanks, and best wishes, Kim.
Stuart

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stuartkjones4,
My lengthy reply above was addressed to you, as the originator of this entire thread.
Additionally, I don't know about "brutal side effects" from LDN, as it is, as described, quite low in dosage, but I did give that a try and it did nothing for me, not really any side effects a ssuch.
The search function on this system is quite useful, incidentally, so do make use of that.

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@stuartkjones4

Kimbauet -
Could you tell all of us more about your experience with Dr. K at NMH?
1. Meds recommended or
administered?
2. If so, which one(s)?
3. If not, why not?

The ONLY med I’ve heard that Dr.K uses for LC is Amantadine, but that med has a long list of very un-
pleasant side effects - maybe worse than LC symptoms.
You say your symptoms have gotten better! How much? Which ones? Any idea about why. Please tell us what you can about your improvement. So many write tif-bits about their experience with LC but leave us in the dark about how and why they got better.
Some say low dose Naltrexone helps but it also has brutal side effects. Those who have reported using it say nothing about the side effects, if any. We need to hear all, not just rid-bits, if you are willing to take the time and make the effort.
Thanks, and best wishes, Kim.
Stuart

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Kim, I saw Dr. Igor Koralnik at the Northwestern Covid Clinic in the city of Chicago. He did not mention medication to me, but after a cognitive test and after he looked at my brain MRI’s from 2 and 3 years ago, told me that I will not be getting my taste or smell back if I have lost it for over a year. It’s going on 3! He didn’t say why and I was in such a state when he told me that I didn’t ask why and neither did my husband. He also said the olfactory nerves don’t regenerate and I’ve read where others say that it does. I was more confused after my visit than before. He never mentioned any treatment plan or anything for me. I walked out of his office angry and depressed. I did have over these past almost 3 years, 7 Stellate Ganglion Block injections and they helped diminish my anxiety/PTSD and body tremors. I’m not leaving anyone in the dark here, I’m just finding that “TIME” is what has made a difference for me and doing what I can for myself to feel better. I guess you have to figure out what that is for you. Good luck!

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@lkirnbauer

Kim, I saw Dr. Igor Koralnik at the Northwestern Covid Clinic in the city of Chicago. He did not mention medication to me, but after a cognitive test and after he looked at my brain MRI’s from 2 and 3 years ago, told me that I will not be getting my taste or smell back if I have lost it for over a year. It’s going on 3! He didn’t say why and I was in such a state when he told me that I didn’t ask why and neither did my husband. He also said the olfactory nerves don’t regenerate and I’ve read where others say that it does. I was more confused after my visit than before. He never mentioned any treatment plan or anything for me. I walked out of his office angry and depressed. I did have over these past almost 3 years, 7 Stellate Ganglion Block injections and they helped diminish my anxiety/PTSD and body tremors. I’m not leaving anyone in the dark here, I’m just finding that “TIME” is what has made a difference for me and doing what I can for myself to feel better. I guess you have to figure out what that is for you. Good luck!

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Thanks, Kim,

It’s great that “time” has helped.
A few more questions -
(1.) How much better are you feeling?
(2.). Has your fatigue diminished? How much?
(3.). What did you do yourself to reduce your symptoms?

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@stuartkjones4

Thanks, Kim,

It’s great that “time” has helped.
A few more questions -
(1.) How much better are you feeling?
(2.). Has your fatigue diminished? How much?
(3.). What did you do yourself to reduce your symptoms?

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Some days are better than others and I’m trying to figure out why. My fatigue is better with time as I’ve not taken any medication for Long Covid. I’m going on 3 years in December. What I did for myself was push myself to walk on the treadmill after my Covid infection. I walked slowly for about 15-20 minutes and gradually worked up to now walking 3-4 miles 3 times per week. Initially after my Covid infection, I was stuttering, had balance issues, body tremors (which I still get if I push myself too hard to get stuff done), heart palpitations (long covid related) and I will be seeing a cardiologist in November which was the first available. Most symptoms have eased up and I’m hoping my taste and smell will come back as well. That’s been very very hard and frustrating!

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@stuartkjones4

Jane - a wonderful essay on LC!! Thank you, and I’m glad you’re feeling better.
I’ve been to NMH LC Clinic (Aasheeta Bawa) who had me tested for sleep apnea (negative) and said they treat LC with Amantadine and one other med. that I can’t remember. Yes - a terrible long list of side effects that seem worse than my fatigue, dizziness, weak legs, neuropathy and occasional nausea. Apparently you wouldn’t recommend pursuing that route. I’ll just try that peanut butter regimen. Did Dr. Karolic (head neurologist?) tell you that Amantafine would help with fatigue? neuropathy? muscle weakness? love life? ANYthing?
Please write again; your account enlightening to all of us, I’m sure.

Best wishes, Jane,

Stuart

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Stuart - the best thing I have tried for the fatigue and post exercise malaise is Low Dose Naltrexone (LDN). I am 5 years into my COVID journey and have had my fatigue and malaise lessen a bit so I can now walk about 1/3 of a mile without being winded or tired for the rest of the day but must still pace myself everyday. The LDN gives me an additional small burst of energy about 1 1/2 hours after I take it and it also removes a good share of the inflammation in my body...so less overall pain. My legs are also less weak unless I go completely off my anti-inflammation diet and then they are weak again and painful. Neuropathy is overall better now that I can sleep with less pain.

LDN is started at a "baby" dose for us - about .5 to 1 mg and slowly, slowly worked up to 4.5 mg. For the first two weeks, it made me tired (so I took it at night) and it gave me quite vivid dreams (not nightmares). After two weeks, it gave me insomnia so I now take it in the daytime prior to 2 pm. For me, the 4.5 dose did not work as well as 2.5 so I decreased the dose to where I felt the best. This is typical for many using LDN. Some people even split their dose so they get a burst of energy twice a day.

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