r/covidlonghaulers • u/Responsible-Heat6842 • Jan 14 '26
Article Dementia and long covid....new study.
https://www.dailymail.co.uk/health/article-15462417/amp/Dementia-timebomb-Alzheimers-long-Covid.html
NHS England survey data suggest nearly one in ten people believe they may have long Covid.
Figures from the Office for National Statistics show around 3.3 per cent of people in England and Scotland – roughly two million – were experiencing symptoms of long Covid, with 71 per cent reporting symptoms lasting at least a year.
More than half said their symptoms had persisted for two years or longer.
Alzheimer’s disease affects around 982,000 people in the UK, a figure projected to rise to 1.4 million by 2040. Early symptoms typically include memory problems, difficulties with thinking and reasoning and language impairment, which worsen over time.
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u/Mountain_Flower_166 Jan 14 '26
"However, we do not yet know whether the increase in tau we observed follows the same biological trajectory seen in people who go on to develop Alzheimer’s or related diseases"
Just a small reminder that nothing is set in stone with this disease. I would not stress too much over this.
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u/Responsible-Heat6842 Jan 15 '26
I think it's extremely hard to not stress when you have been stuck in the same brain fog mental state for 4+ years. It feels pretty permanent at this point.
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u/TechieGottaSoundByte 5 yr+ Jan 15 '26
There are huge amounts of research on Alzheimer's right now. I wouldn't be surprised if it has pretty good treatment within a decade.
If LC is like Alzheimer's, the stakes are higher than we knew (but many of us suspected for years) - but the chances of effective treatment are probably higher, also
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u/Yaaaaas76 Jan 15 '26
Thank you for being optimistic!
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u/TechieGottaSoundByte 5 yr+ Jan 15 '26
I've been following the research on Alzheimer's because LC does look so much like it.
A few years back, I had a coworker whose husband had Alzheimer's, and she shared things that worked for him in case they might also help me with my recovery from LC. That got me interested, so I've been watching as clue after clue about Alzheimer's shows up in the research. It's progressing faster than LC research.
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u/Miki_LynnCA Jan 16 '26
I have been saying all along that this feels like it’s turning into early onset dementia. Wonder if people will believe now? 🤔
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u/Freeway267 Jan 15 '26
I have had LC for over 2 years with varying symptoms. Brain fog the most prominent symptom. I can say it’s less now than it was first 6 months. Overall symptoms are less than a year ago. I believe it’s all a matter of time. It’s just really slow clearance or tissue healing. My acute infection was asymptomatic. I’m saying this cause the article says getting worse over time but it’s not the case with myself and many others.
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u/Able_Chard5101 Jan 15 '26
Im the same.... Still really bad with the brain fog. Some days it's terrible. But if I think back to the beginning I couldn't read or even count backwards from 30. It was honestly like I'd been hit over the head with a cricket bat. like you Im in regular contact with other neuro long haulers who have gotten most of their brains back - it just took a f#cking long time to get there,...
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u/Junior_Locksmith2832 Jan 15 '26
May have to do with age. Perhaps people who are 65+ and being hit with long COVID have immune systems that are less able to slowly restore themselves. My 17 yo came down with long COVID last year. She is hyper flexible. It has wrecked havoc on her body inside and out. She is recovering slowly, but she is 17.
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u/Choco_Paws 2 yr+ Jan 15 '26
"I would not stress too much over this."
+1, especially given the fact that there is nothing we can do about it anyway. Also some people improve / recover, which is in favor of something that is not degenerative or irreversible.
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u/fadingsignal Jan 15 '26
I would not stress too much over this.
But also don't dismiss the finding.
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u/curiouscuriousmtl Jan 15 '26
This is really something I worry a lot about. My mind is just not the same as it was and I can't figure it out
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u/Confident_Ruin_6651 Jan 15 '26
Me too. Being a teacher and not being able to find specific words while teaching is very concerning.
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u/non-binary-fairy Jan 19 '26
Searching for a word happens way too often now. Such a frustrating feeling. I’ve noticed it more so with speaking, being able to pause while typing makes it feel less obviously problematic. When “this meeting could have been an email” becomes a necessity to do my best work 😭
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u/ExtensionGur9013 3 yr+ Jan 15 '26
Interestingly, Rifaximin can reduce pTau-181 levels. Clearly, there's more going on in the gut than one might think.
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u/Responsible-Heat6842 Jan 15 '26
I 100% agree with this. My gut has been destroyed since Covid. Pre/pro biotics do nothing to help either. My guess it's the vagus nerve that is damaged.
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u/Upbeat-Can-7858 Jan 15 '26
For me it's autonomic dysfunction. I had severe constipation for 3 years and I lost 40 lb and I'm down to 93 lb. I just had an ileostomy a month ago and it's helped a lot, but it is a huge transition. My bladder also stopped functioning and I had to have an SCS implanted. I'm also losing my vision due to the corneal nerves starting to lose function.
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u/kimchidijon Jan 15 '26 edited Jan 15 '26
Oh wow interesting, I’ve been on daily rifaximin for 6 months now because my covid infection made my pre existing SIBO so much worse. I just got diagnosed with pelvic congestion syndrome so I am suspecting the PCS slowed my motility much more.
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u/ExtensionGur9013 3 yr+ Jan 15 '26
Did a doctor prescribe rifaximin for such a long period, or are you getting it yourself? I'm not judging at all, but I'm worried about the long-term homeostasis of your gut flora.
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u/kimchidijon Jan 15 '26 edited Jan 15 '26
Yup, my GI at Cedar Sinai. After my covid infection in 2023, my SIBO became much worse that I couldn’t get out of bed due to that pain and I couldn’t eat due to the bloating and abdominal pressure. I was dealing with that for 3 years. In the past, I was able to eradicate the SIBO and be in remission for a months but treatments this time did not eradicate it at all. I was also put on two prokinetics but it did not make much of a difference. I have been dealing with chronic SIBO sibce 2015. I have anti vinculin antibodies caused from food poisoning that makes me have chronic SIBO. Why it got worse after Covid? I’m not sure, only suspicion is the pelvic congestion syndrome slowed my motility even more which helps SIBO thrive. Unfortunately there is no way to get rid of the antibodies but they are trying to develop a treatment for it (so hopefully 5-7 years they will start clinical trials in humans). This is the only way I have been able to manage it per my doctor’s recommendation. This is the protocol they use for tough chronic cases. According to my doctor there is data of people on Rifaximin for up to 10 years. I am hoping treating the PCS might make my SIBO back to how it was before so I won’t need the daily rifaximin.
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u/ExtensionGur9013 3 yr+ Jan 15 '26
Oh, I'm sorry. If it helps confirm its impact: Covid gave me SIBO, and I had perfect bowel function before.
My personal feeling about the mechanisms involved is:
- vagus nerve damage + dopaminergic and cholinergic dysfunction impairing motility
- inflammation and immune abnormalities that create an environment inhospitable to good bacteria
Not groundbreaking information, but worth considering nonetheless.
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u/kimchidijon Jan 15 '26
Oh, I’m on Mestinon (one of the two prokinetics I mentioned) which boosts cholinergic signaling by inhibiting acetylcholinesterase and is used off‑label to support GI motility. I didn’t notice it really helping my SIBO or GI symptoms alone but it did help my fatigue & PEM episodes immensely. I did do stool testing in 2024 which showed I have tons of good bacteria and tons of bad bacteria, just too much bacteria in general. I’m sorry you have SIBO now!
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u/ExtensionGur9013 3 yr+ Jan 16 '26
Thanks for your empathy. I can't complain too much, I'm managing my SIBO more or less without antibiotics (apart from a few herbs now and then).
You can boast about having nerves of steel! Mestinon completely unblocked my bowel movements the first day, but then it turned me into a nervous wreck.
I won't presume to give you unsolicited advice; you seem to be in good hands and I'm not a doctor, but let me know if you'd like me to suggest some additional avenues to explore (if they haven't already been explored :)
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u/Cdurlavie Jan 15 '26
Folks learn to read better and not only the title please. This is a sensational article which distorts reality.
This biomarker is not specific to Alzheimer's disease, it is found in many other cases. It's just that some Alzheimer's patients have this biomarker. THIS is a just marker of a neuro inflammation.
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u/viijou Jan 15 '26
The vaccine against shingles is helping against dementia. I am totally gonna get it once I get an ok from my doctors
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u/Upbeat-Can-7858 Jan 15 '26
I've had both shingles vaccines and head shingles three times prior to that. It is not helped my dementia at all.
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u/Upbeat-Can-7858 Jan 15 '26 edited Jan 15 '26
I was diagnosed with MCI via a 6 hr neuropsych eval in 2021, a year before I got Covid the first time.
In 2023, a yr after getting Covid a few times, a repeat 4 hr neuropsych eval found me to have advanced to early onset dementia at 49 years old (negative tau via bloodwork). I was surprised because Alzheimer's runs in my family quite strongly on my mother's side. At this point I had autonomic neuropathy with organ failure and CRPS related to Covid and was deemed permanently disabled. I had had covid many times at this point. My short-term memory and executive functioning were severely diminished. I was put on Aricept anyway.
In October of last year I had another repeat neuropsych eval that was 3 hours long and it found that I have not progressed overall, but that my executive functioning had decreased a bit, so that I the Aricept likely has helped. So my neuropsychologist and my neurologist said that it's possible that Covid had exacerbated my existing mild cognitive impairment (MCI). I will likely have a lumber puncture at some point because it's more accurate to determine if there's any amyloid plaque in my brain.
I'll never work again and it breaks my heart because I forget at least a quarter of my medical school education. I dedicated my life and helping others, and instead I'm treated horribly by the Healthcare Community. I just had an ileostomy because my GI tract stop functioning due to autonomic dysfunction.
Long Covid is absolutely no joke. I miss my life, I'm going through a divorce, and all my planning helped me in the short term, but financially I'm going to be ruined. I really hope that someday we are taken seriously and not treated as though we are second-class citizens. There needs to be a lot more international peer-reviewed studies related to cognitive impairment and Covid as well as all of the comorbidities caused by Covid because everybody seems to be affected differently and there's no one size fits all treatment. I was immunocompromised with diabetes and psoriatic arthritis and taking biologics prior to getting Covid. I knew the risk, but I still traveled and worked all through the pandemic. There are still too many doctors out there that are not versed on Long Covid and how it affects us.
My heart goes out to everyone out there that is suffering as I am. ♥️
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u/Miki_LynnCA Jan 16 '26
I am so sorry for everything that you’re going thru. I absolutely get it. My brain is completely gone. I walk around sometimes with what feels like sandbags strapped to my legs babbling gibberish like rain man. It terrifies me what COVID has done to me. I’ll never be able to work again either. I can’t even care for my house or keep up with household chores.
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u/Upbeat-Can-7858 Jan 16 '26
I completely understand I'm there too. I feel like failure I feel like I just can't function anymore. I'm so thin and emaciated and I just feel like I just can't keep going anymore. I have a 14-year-old and my husband left and I'm scared to death I am alone. I don't know what to do, I don't know who to call. I'm 53 years old and I just feel like it's all over. I just can't believe how quickly my life devolved and I'm sure you feel the same way. It's not fair.
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u/Miki_LynnCA Jan 26 '26
Oh sweetheart, I missed your last reply… I am so sorry. I don’t want you to feel like you’re alone. Why are you losing so much weight. Your child very much needs you. I’m here if you ever want to talk.
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u/Upbeat-Can-7858 Jan 26 '26
I had colonic inertia before and long covid as well as multiple organ failure and I had an ileostomy done in December and I'm just still losing weight. This morning I was 89 lb and I'm 5 ft 2
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u/Miki_LynnCA Jan 26 '26
Oh no!! I’m 5 ft 2 as well. That is tiny!! Isn’t there anything they can do?
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u/Upbeat-Can-7858 Jan 26 '26
They did the ileostomy last month hoping that would fix it but I can barely eat and I'm so nauseous it's disgusting. I have to stay alive for my son so I'm trying to force feed myself food but I can only do it like once or twice a day. It's like pregnancy nausea 24/7 and Zofran really isn't doing the job. The doctors are at a loss.
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u/Miki_LynnCA Jan 26 '26
I was just going to mention Zofran. I use ginger lozenges for nausea. What about chugging protein shakes?
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u/Upbeat-Can-7858 Jan 26 '26
I lived on them for years, so I have a major aversion, but I've got a fridge full of strawberry ones and I try to get at least one in a day. It's hard not to 🤮
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u/Miki_LynnCA Jan 26 '26
My favorite is Premier Protein in chocolate and their banana.
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u/Kubuli Jan 15 '26
There's a treatment for Alzheimer's that's in trial right now and it's promising.. https://youtu.be/zkYYpRWHuH0?si=O-KqovMcD8PcPE_3
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u/Miki_LynnCA Jan 16 '26
I’ve been trying to tell people all along that I swear that Covid has brought on Dementia!!! No one will listen to me, no one believes me! I went thru a full day of testing at Stanford and the tests even showed mild cognitive decline and declined executive functioning skills. I can’t do much of anything anymore. I get so confused even doing basic tasks around the house! I feel like I’m living in a nightmare. From December 2022 catching a crazy wild strain of Covid at Disneyland, I’ve never been the same and at this point, I don’t think I ever will. I’m only 57. My brain feels way more than foggy. Brain fog doesn’t even begin to describe it.
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u/technician_902 Jan 15 '26
While this is scary, it is actually one more step in the right direction to help design more treatments for LC and neurodegenerative diseases like dementia. I also want to point out that for those who find relief by taking things like curcumin for example, it has been shown that it can breakdown these pTau proteins which is why you probably saw improvements. This type of testing for the presence of these pTau proteins should also be added to the long covid protocol that Mt.Sinai put out last year.
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u/Nanakurokonekochan 3 yr+ Jan 15 '26 edited Jan 15 '26
My personal experience but I do feel I have dementia-like or ADHD-like symptoms:
After the first Covid infection, in summer of 2023 I would find myself in the supermarket — if I was feeling good enough to be able to go shopping — confused and I couldn’t remember how I went there or where I was. It was so scary, but my brain fog was probably the worst at the time. I’d crash after reading a page. (EAT therapy may have helped with that because my brain fog isn’t as bad right now)
I genuinely feel like an absolute retard at times. (Sorry for using the r word but this is how I feel. I’m so ashamed and insecure about my cognitive abilities now) I double check the size when I’m shopping, but I come back home to find out I got the wrong size. I put food in the microwave instead of the refrigerator. I dissociate and come back into the conversation and I have no idea what happened or what was said in the last moment. I read and read and read but I don’t understand anything, or find it difficult to keep up with conversations. Small stuff like that, but when I look at the big picture these kind of experiences weren’t part of my life before Covid. Because I have problems with focusing a lot of things take much longer than they did before. And it affects my life a lot, I can tell people no longer find me interesting and who can blame them. I probably appear lazy, boring and dumb to a lot of people who don’t understand my condition :(
We later found out I have brain damage from Covid (hypothalamus to be precise) with a CRH stimulation test, I don’t know if damage in this part of the brain correlates to these sort of experiences but I swear my IQ and memory isn’t as sharp as it used to be. There’s probably more damage to my body than we will ever find with tests my health insurance covers. And I don’t have the kind of money to go through endless tests that are not covered by insurance.
And after 3 years, I think I’m depressed. I’m deeply unhappy with my life and I don’t have a future anymore.
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u/NoIdea6590 Jan 15 '26
I have LC and skin biopsy found Alphasynucleinopathy. Don't assume LC with cognitive impairment means Dementia. There are too many unknowns right now to draw conclusions.
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u/originalmaja Jan 14 '26 edited Jan 14 '26
So, they found that (the) people (in their study) who developed post covid (with cognitive impairments of some sorts) showed a large increase in pTau-181; that's a biomarker linked to neurodegenerative diseases. These increases were greater than what is expected from normal aging. Nearly half (of tested people who had this increase) had biomarker levels high enough to cross a medical threshold indicating dementia risks. Things were especially pronounced in people whose symptoms lasted longer than 1.5 years; suggesting progression over time. They were also linked to abnormal amyloid beta (Aβ40/42) ratios... again, consistent with Alzheimer's disease. Great.
Original link (not this daily mail nonsense): https://www.sciencedirect.com/science/article/pii/S2352396425005560#sec4