Has anyone completely gotten over Long Covid? Please post here

Posted by bermuda8 @bermuda8, Jul 14 8:33am

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.

Profile picture for skol1962 @skol1962

I have long Covid after I got Covid for the 4th time in 2 years. I was diagnosed this past April. (Had my 4th bough w:Covid the end of September’23) I was going for pre-op testing when they saw the long covid in my lungs. I have good days & bad days. With the wildfire smoke from Canada in my area, it’s bad… can’t close my windows because the house we are renting does not have central air & the windows are old & odd shaped so can’t get a window one…I was told my LC would never go away…. My diabetes which was well under control before the Covid shots & booster went crazy wild after the booster back in 21. Ended up in the hospital… it took almost little over 4 years to get my glucose regulated again and that is only because I had to go on an insulin pump… will always have to be on it…. I swear the booster took my t2 diabetes & turned it into T1…now they found a growth on the head of my pancreas which I am going for a biopsy on shortly

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They saw long-COVID in your lungs? Via x-rays? Bronchoscope?

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Profile picture for ejrussell1 @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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This is who helped me. FYI
⬇️

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

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Profile picture for skol1962 @skol1962

I have long Covid after I got Covid for the 4th time in 2 years. I was diagnosed this past April. (Had my 4th bough w:Covid the end of September’23) I was going for pre-op testing when they saw the long covid in my lungs. I have good days & bad days. With the wildfire smoke from Canada in my area, it’s bad… can’t close my windows because the house we are renting does not have central air & the windows are old & odd shaped so can’t get a window one…I was told my LC would never go away…. My diabetes which was well under control before the Covid shots & booster went crazy wild after the booster back in 21. Ended up in the hospital… it took almost little over 4 years to get my glucose regulated again and that is only because I had to go on an insulin pump… will always have to be on it…. I swear the booster took my t2 diabetes & turned it into T1…now they found a growth on the head of my pancreas which I am going for a biopsy on shortly

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@skol1962 ... Wow; I can't believe you were told LC will never go away! Unless someone has a crystal ball, how they could know that?Research is ongoing and there's a lot of it. Many sufferers report feeling back to normal or at least closer to it ... in varying lengths of time. I've been researching this thing for over two years now, the stories are all so different, and doctors very often not getting the education they need to become LC experts. This thread is very helpful in that people are beginning to document their experiences of recovery; slow but steady for many. Easy to become hopeless when people say such unhelpful things. I hope we all continue to document our stories of recovery since it's helpful to everyone.

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Profile picture for roxannelee @roxannelee

They saw long-COVID in your lungs? Via x-rays? Bronchoscope?

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X-ray

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Profile picture for janeaddams @janeaddams

@skol1962 ... Wow; I can't believe you were told LC will never go away! Unless someone has a crystal ball, how they could know that?Research is ongoing and there's a lot of it. Many sufferers report feeling back to normal or at least closer to it ... in varying lengths of time. I've been researching this thing for over two years now, the stories are all so different, and doctors very often not getting the education they need to become LC experts. This thread is very helpful in that people are beginning to document their experiences of recovery; slow but steady for many. Easy to become hopeless when people say such unhelpful things. I hope we all continue to document our stories of recovery since it's helpful to everyone.

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My response to that anesthesiologist was “you’re not God” & basically I said the same thing, how can you know for sure since Covid is pretty much only a few years old…

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Profile picture for stuartkjones4 @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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@stuartkjones4 Yes; I've had two follow-up remote visits with Asheeta Bawa at my request following the initial and only visit to the NWMH LC clinic last September. I'll continue to request follow-ups with her, just to be sure I'm not missing out on any new recommendations. So far, it's just the Amantadine, which I'm rejecting since the side effects for many people sound serious, the cognitive rehab, which I did, and yes, a sleep study which I declined, because I sleep fine when I'm not in a PEM period. When I told Dr. K. my worst symptom was the fatigue/brain fog, he said "Many people are helped with this drug" but no details; it was a very short visit with him. I've gotten much more info in general from their monthly Zoom support group for LC clinic patients, which he (and I) strongly recommend. At one of those meetings Dr. K. showed a list of treatments he discourages as "useless." At these meetings NWMH docs show up to speak and answer questions about LC from their perspective; these videos are available on YouTube and you can find the list on the LC Support group site.
I'm finding this thread helpful; let's keep posting our experiences as we (hopefully) get better.

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Profile picture for janeaddams @janeaddams

@stuartkjones4 Yes; I've had two follow-up remote visits with Asheeta Bawa at my request following the initial and only visit to the NWMH LC clinic last September. I'll continue to request follow-ups with her, just to be sure I'm not missing out on any new recommendations. So far, it's just the Amantadine, which I'm rejecting since the side effects for many people sound serious, the cognitive rehab, which I did, and yes, a sleep study which I declined, because I sleep fine when I'm not in a PEM period. When I told Dr. K. my worst symptom was the fatigue/brain fog, he said "Many people are helped with this drug" but no details; it was a very short visit with him. I've gotten much more info in general from their monthly Zoom support group for LC clinic patients, which he (and I) strongly recommend. At one of those meetings Dr. K. showed a list of treatments he discourages as "useless." At these meetings NWMH docs show up to speak and answer questions about LC from their perspective; these videos are available on YouTube and you can find the list on the LC Support group site.
I'm finding this thread helpful; let's keep posting our experiences as we (hopefully) get better.

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I lost my smell since I had COVID. I really don"t know what to do about it. Does anyone know if there is any treatment?

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Profile picture for janeaddams @janeaddams

@stuartkjones4 Yes; I've had two follow-up remote visits with Asheeta Bawa at my request following the initial and only visit to the NWMH LC clinic last September. I'll continue to request follow-ups with her, just to be sure I'm not missing out on any new recommendations. So far, it's just the Amantadine, which I'm rejecting since the side effects for many people sound serious, the cognitive rehab, which I did, and yes, a sleep study which I declined, because I sleep fine when I'm not in a PEM period. When I told Dr. K. my worst symptom was the fatigue/brain fog, he said "Many people are helped with this drug" but no details; it was a very short visit with him. I've gotten much more info in general from their monthly Zoom support group for LC clinic patients, which he (and I) strongly recommend. At one of those meetings Dr. K. showed a list of treatments he discourages as "useless." At these meetings NWMH docs show up to speak and answer questions about LC from their perspective; these videos are available on YouTube and you can find the list on the LC Support group site.
I'm finding this thread helpful; let's keep posting our experiences as we (hopefully) get better.

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Jane! Thank you for your very thoughtful comments, especially about NMH. Yes, Amantadine side effects look worse than the fatigue, etc. Some here report that low dose naltrexone works well. Did the docs on your support group meetings say anything about LDN? My pcp docs at Endeavor Health (formerly North Shore Medicine - Chicago) are totally clueless about LC and low dose Naltrexone, possibly because they are not neurologists. (They closed their own LC clinic but would not say why.). A week ago I wrote to Aasheeta Bawa asking “Wha’s next?” and “What treatment?” but she has not responded. Could you tell us much more about their support group? Is it worth listening to it? Why so?
Thanks again for your great care in writing to all of us. Let’s keep up the battle.
Best wishes, Stuart

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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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Profile picture for britelite @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, thanks for your note. Your last four lines, however, do not support or encourage those still suffering.

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