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Does this sound like Long Covid?

Posted by sjde53 @sjde53, 6 days ago

For about five years now, my husband has had crushing fatigue, where he’ll wake up refreshed, but then he’ll need a nap an hour or two later and then take a second nap in the afternoon, and still sleep 11 to 12 hours at night. He doesn’t seem to have post exertional malaise. He also had chest pain and shortness of breath. Those last two eventually went away, but were replaced by dizziness and brain fog about two or three years ago. Then about a year ago he developed a slight hand tremor. His PCP referred him to a movement disorders neurologist. The skin biopsy test for Parkinson’s was negative and his hand tremor is not like the usual Parkinson’s tremor. The neurologist never mentioned Long Covid but that’s what I’m starting to think this is.

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lcat70 | @lcat70 | 6 hours ago
In reply to @bentstiks2 "Wow I could have written this. My husband is exactly the same as yours! Since 2022...." + (show)
Profile picture for bentstiks2 @bentstiks2

Wow I could have written this. My husband is exactly the same as yours! Since 2022. Same exact symptoms. All tests have been “normal”. Just went to tick borne illness clinic. They have started antibiotics and supplements to treat Lyme and co-infections while waiting for actual Lyme test results. It’s only been three days so no change yet. Still not sure if it’s long covid, Lyme or other tick illness or I guess possible mold or heavy metals. Maybe it’s some form of dementia
His brain fog and extreme fatigue are increasing I think. Still has anxiety and shortness of breath. These symptoms are so out of character for him. Type A personality, always up for anything, could do anything mechanical and was able to do math in his head. These traits are all gone. It’s so hard to watch him failing and I can’t do anything other than research. Hoping between tick clinic and long covid clinic next month we get an answer. Main stream medical has failed us.

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@bentstiks2, I, too, was a Type A go-getter like your husband, then came Long Covid in early 2021. After 4-1/2 years of various doctors and finally treatment at a Long Covid clinic, I saw improvements in everything except brain fog, memory loss and anxiety. They tested me for the biomarker for Alzheimer's and I was positive. With an extensive family history of dementia, I wasn't surprised. I was tested twice this year and am negative, but was told symptoms of brain fog/memory loss and early dementia/Alzheimer's are similar. My anxiety symptoms are exactly those of CFS/PEM. I now see my neurologist every 6 months for review and though I don't have dementia, am taking Aricept for brain fog and memory loss. It has been noticably helpful. Perhaps biomarker testing would confirm or deny your suspicion of dementia with your husband. The most frustrating thing for me after 5-1/2 years of Long Covid has been not knowing what's wrong and how to treat it. I've learned more from Google, YouTube, and this forum than from my doctors. Wishing you the best for resolving your husband's issues. It's a struggle, but many of us are right there with you.

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nova11723 | @nova11723 | 5 hours ago
In reply to @lcat70 "@bentstiks2, I, too, was a Type A go-getter like your husband, then came Long Covid in..." + (show)
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@bentstiks2, I, too, was a Type A go-getter like your husband, then came Long Covid in early 2021. After 4-1/2 years of various doctors and finally treatment at a Long Covid clinic, I saw improvements in everything except brain fog, memory loss and anxiety. They tested me for the biomarker for Alzheimer's and I was positive. With an extensive family history of dementia, I wasn't surprised. I was tested twice this year and am negative, but was told symptoms of brain fog/memory loss and early dementia/Alzheimer's are similar. My anxiety symptoms are exactly those of CFS/PEM. I now see my neurologist every 6 months for review and though I don't have dementia, am taking Aricept for brain fog and memory loss. It has been noticably helpful. Perhaps biomarker testing would confirm or deny your suspicion of dementia with your husband. The most frustrating thing for me after 5-1/2 years of Long Covid has been not knowing what's wrong and how to treat it. I've learned more from Google, YouTube, and this forum than from my doctors. Wishing you the best for resolving your husband's issues. It's a struggle, but many of us are right there with you.

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@lcat70 I wonder how much stress contributes to this. Being Type A in the U.S, these days can generate a great deal of stress. And when you write brain fog, do you mean forgetting things or not being able to think?

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sjde53 | @sjde53 | 5 hours ago
In reply to @lcat70 "@bentstiks2, I, too, was a Type A go-getter like your husband, then came Long Covid in..." + (show)
Profile picture for lcat70 @lcat70

@bentstiks2, I, too, was a Type A go-getter like your husband, then came Long Covid in early 2021. After 4-1/2 years of various doctors and finally treatment at a Long Covid clinic, I saw improvements in everything except brain fog, memory loss and anxiety. They tested me for the biomarker for Alzheimer's and I was positive. With an extensive family history of dementia, I wasn't surprised. I was tested twice this year and am negative, but was told symptoms of brain fog/memory loss and early dementia/Alzheimer's are similar. My anxiety symptoms are exactly those of CFS/PEM. I now see my neurologist every 6 months for review and though I don't have dementia, am taking Aricept for brain fog and memory loss. It has been noticably helpful. Perhaps biomarker testing would confirm or deny your suspicion of dementia with your husband. The most frustrating thing for me after 5-1/2 years of Long Covid has been not knowing what's wrong and how to treat it. I've learned more from Google, YouTube, and this forum than from my doctors. Wishing you the best for resolving your husband's issues. It's a struggle, but many of us are right there with you.

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@lcat70
What was it that you were tested for twice this year and it was negative?
Isn’t a person only tested once for the Alzheimer’s biomarker? I don’t see how it would change.

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lcat70 | @lcat70 | 3 hours ago
In reply to @sjde53 "@lcat70 What was it that you were tested for twice this year and it was negative?..." + (show)
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@lcat70
What was it that you were tested for twice this year and it was negative?
Isn’t a person only tested once for the Alzheimer’s biomarker? I don’t see how it would change.

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@sjde53 Sorry I wasn’t clear. I was tested twice for Alzheimer’s after learning I had the Alzheimer’s biomarker. Those tests were negative. After learning I had the biomarker, I feared my symptoms of brain fog and memory loss were due to Alzheimer’s and not to Long Covid. So far that’s not the case.

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sjde53 | @sjde53 | 33 minutes ago

Isn’t the biomarker a blood test and the only test? Looks for tau and amyloid protein.
Or when you were tested twice again, did you mean the cognitive test?

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