Covid Long Haulers: symptoms, treatments and options

[harllee]

The UNC Covid Recovery Clinic has recently opened at the University of North Carolina at Chapel Hill where I live. This clinic is to help people who have had Covid and who continue to have long haul symptoms. The head doctor is Dr. John Baretta and the phone number is 984-974-9747.

Does anyone know of any other such clinics in other areas of the country? Maybe we could gather information on this thread for our members and their families and friends who have Covid long haul symptoms.

 

[harllee]

Loss of Smell and Taste

My niece, age 15 got a "mild" case of Covid back in early December. Everyone in her family got it and they were all sicker than she was. However she lost her sense of smell and taste and it has never come back. She is going to a clinic here in NC that specializes in long haul Covid and they have suggested smell training things for her to do (different things to eat and smell, etc) and taking certain Vitamins and Supplements but so far none of these have helped.

Any suggestions?

 

[MichaelB]

I heard yesterday on NPR that some people with long haul symptoms were getting vaccinated and seeing improvement.

 

[audreyh1]

What’s so scary to me is so many of these long haulers initially had mild to no disease, yet ended up with a terrible outcome.

 

[pacergal]

I read that OHSU, in Oregon, just opened up a long haul clinic/study.

 

[pacergal]

I and my doc, believe that I had covid, even though lab antibodies were negative back in March. Mild cold, and loss of taste.
Took several months for taste to return somewhat normal. Even today, occasionally, I will eat something, I can taste, but not the taste I remember. Last thing was a piece of chocolate. It had a sweet taste, but not the chocolate my brain told me it should taste like (and it was good quality chocolate)
I am vaccinated, so it will be interesting to see if that improves over time.

 

[harllee]

I heard yesterday on NPR that some people with long haul symptoms were getting vaccinated and seeing improvement.

My niece's doctor recommends that she have the vaccine when she qualifies in the hope it will help with her lack of taste and smell but she is only 15 and there is no vaccine approved for her yet.

 

[Another Reader]

I heard yesterday on NPR that some people with long haul symptoms were getting vaccinated and seeing improvement.

There are surveys in the support groups. It's a mixed bag. The majority seem to return to their long haul baseline.

Likely it depends on if you have persistent virus that is causing the problems and where the virus is hiding. Antibodies cannot get into immune privileged areas, so they are no help if that's where persistent virus is hiding.

 

[Another Reader]

What’s so scary to me is so many of these long haulers initially had mild to no disease, yet ended up with a terrible outcome.

More and more, the problem looks like viral persistence. Lots of research being done on that now, and the NIH doctors currently studying a group of Long Haulers are leaning towards that conclusion.

 

[audreyh1]

My niece's doctor recommends that she have the vaccine when she qualifies in the hope it will help with her lack of taste and smell but she is only 15 and there is no vaccine approved for her yet.

Pfizer today announced that they are applying for emergency use authorization for 12-15 year olds and submitting their Phase 3 results which they claim was very successful.
https://www.early-retirement.org/fo...ccine-results-in-us-108604-7.html#post2584747

 

[Another Reader]

Yes, the antibody and disease prevention results are really good in this age group. This will be very helpful in reopening schools.

 

[harllee]

Yes, the antibody and disease prevention results are really good in this age group. This will be very helpful in reopening schools.

Another Reader, do you know of any treatments for people with who have lost smell and taste due to Covid??

 

[Another Reader]

Another Reader, do you know of any treatments for people with who have lost smell and taste due to Covid??

It's due to damage to the olfactory bulb and associated neural pathways. Time can fix some of it, retraining the brain to re-establish the connection supposedly helps as well. I an fortunate to have missed that issue.

 

[tmm99]

The damage this disease does is seemingly random. Hope the NHS is using some of the early interventions that are now available here and that Alan's son recovers fully with no lasting effects.

Another Reader,

This isn't about Alan's son, but have you gotten the vaccine shots yet? I hope the shots will alleviate some of your symptoms...

 

[Another Reader]

Another Reader,

This isn't about Alan's son, but have you gotten the vaccine shots yet? I hope the shots will alleviate some of your symptoms...

No, and I'm not going to right now. The reports of vaccines "curing" long Covid are premature and in many cases just plain wrong. Unfortunately Dr. Daniel Griffin, who has been very good with accurate information throughout this ordeal, has been perpetuating this myth.

A few people report being completely "cured." Some report improvement, but not a cure. We will see if that lasts. Most people report no change after the vaccine effects subside or a temporary improvement followed by reversion to their Long Covid baseline. A few people report their condition has worsened significantly. Not enough time has passed for the results to be clear.

The problem may be the virus. As we know, it mutates, hence all the variants. The British variant apparently originated from an immuno-compromised patient that had the virus for an extended time during which it mutated. One theory is that Long Covid is the result of persistent virus. If that virus is replication competent, it will mutate.

Vaccines are based on a virus that was that was isolated at a point in time. If the virus you have is sufficiently like the virus used in the vaccine, the antibodies your body will make will work against the virus. Antibodies will not work against virus in the brain, because antibodies are too big to cross the blood brain barrier. Clearing virus from the brain and other immune privileged sites requires T-cells. If antigen stimulation extends to T-cells, you may see viral clearance in those locations.

The people that get worse may be suffering from antibody dependent enhancement (ADE). This is complicated, but as I understand it, the virus can actually use the antibody to gain entrance to cells. This happens occasionally in Dengue Fever and RSV. Perhaps one of the doctors here can explain it more clearly than I have.

At this point, I have been sick for a year. If I have persistent, replication competent virus hiding somewhere in my tissue, it has been busy mutating. I don't want ADE. I'm going to wait until a lot more data is available before I get vaccinated.

 

[sengsational]

Another Reader, do you know of any treatments for people with who have lost smell and taste due to Covid??

My daughter had short term loss. It recovered on it's own, but now she "hates" cilantro, whereas before, she liked it. Weird.

 

[ivinsfan]

AR if you don't mind sharing what does an average day feel like for you one year in?

I'm sorry you are going through this.

 

[Another Reader]

AR if you don't mind sharing what does an average day feel like for you one year in?

I'm sorry you are going through this.

I don't want to make this about me or any other individual. If you search for articles about long haul patients, you will see a lot of people with similar symptoms. Read their stories...

One recent article of interest on the neurological issues:

https://jamanetwork.com/journals/ja...7j34gRo6Y9ZI8nln5FL-L43A#.YGq3BpnQqIA.twitter

 

[Another Reader]

Anyone that has had cats is probably familiar with the fatal disease Feline Infectious Peritonitis (FIP). It's caused by a coronavirus. In recent years, a professor at UC Davis Veterinary School has trialed GS-441524, the metabolite of Remdesivir, to treat FIP. He reported a 96 percent success rate in wet form FIP and a 75 percent success rate with the dry (neurological) form. Here's a scientist at Muller Lab at MD Anderson that has done a lot of research on GS-441524 and is willing to do what it takes to get this drug into clinical trials to treat Covid.

https://osf.io/am5s8/.

She gave a presentation at an American Chemical Society conference yesterday. The lab has published two other papers on GS-441524, one comparing it pharmacologically to Remdesivir and one on safety and tolerance of GS-441524 in dogs.

The NIH is very interested in GS-441524 as a Covid treatment and has purchased a quantity for preclinical studies and a clinical trial. You can follow her work on Twitter - Victoria Yan, @VictoriaCyanide. You can also follow the lab on Twitter - @Muller_Lab.

 

[audreyh1]

Covid Long Haulers - recent article

In depth article about Covid Long-haulers in the Atlantic magazine this week.

LONG-HAULERS ARE FIGHTING FOR THEIR FUTURE
By Ed Yong

In June 2020, when I started reporting on long COVID, few scientists or physicians knew that it existed—and many doubted that it did. The common wisdom was that people infected with SARS-CoV-2 mostly get mild symptoms that resolve after two weeks. And yet, thousands of “long-haulers” had already been debilitated by months of extreme fatigue, brain fog, breathing difficulties, and other relentless, rolling problems. More than a year later, several clinics care for long-haulers, while the biomedical community, like the ents, has begun to identify long-COVID patients as long-COVID patients. But some researchers still hesitate to recognize long COVID if it doesn’t present in certain ways; they’re running studies without listening to patients, and they’ve come up with their own arguably unhelpful name for the disease. Like Merry and Pippin, long-haulers are growing frustrated that what is self-evident to them—their condition is very real and in need of urgent attention from those with power—is taking a worrying amount of time to be acknowledged and acted upon.

https://www.theatlantic.com/science/archive/2021/09/covid-19-long-haulers-pandemic-future/619941/

 

[audreyh1]

Long Covid and Breakthrough Infections - recent UK report.

People who experience breakthrough infections of the coronavirus after being fully vaccinated are about 50 percent less likely to experience long Covid than are unvaccinated people who catch the virus, researchers said in a large new report on British adults.

https://www.nytimes.com/2021/09/01/health/breakthrough-infections-long-covid.html


How common is long Covid in the unvaccinated? This June 2021 article from Nature goes into some details.

But most people with COVID-19 are never ill enough to be hospitalized. The best way to assess the prevalence of long COVID is to follow a representative group of people who have tested positive for the virus. The UK Office of National Statistics (ONS) has done just that, by following more than 20,000 people who have tested positive since April 2020 (see ‘Uncertain endpoint’). In its most recent analyses, published on 1 April, the ONS found that 13.7% still reported symptoms after at least 12 weeks (there is no widely agreed definition of long COVID, but the ONS considers it to be COVID-19 symptoms that last more than 4 weeks).

The condition seems to be more common in women than in men. In another ONS analysis, 23% of women and 19% of men still had symptoms 5 weeks after infection. That is “striking”, says Rachael Evans, a clinician scientist at the University of Leicester, UK, and a member of the Post-Hospitalisation COVID-19 study (PHOSP-COVID). “If you’re male and get COVID, you’re more likely to go to hospital and you’re more likely to die. Yet if you survive, actually it’s females that are much more likely to get the ongoing symptoms.”

There is also a distinctive age distribution. According to the ONS, long COVID is most common in middle-aged people: the prevalence was 25.6% at 5 weeks for those between 35 and 49 years old. It is less common in younger people and older people — although Evans says the latter finding is probably due to ‘survivor bias’, because so many old people who have had COVID-19 have died.

https://www.nature.com/articles/d41586-021-01511-z

 

[DrRoy]

I am personally more concerned about the risk of long Covid than the original sickness.

 

[volfan]

Thanks for these links on long COVID. I hope I am just slow recovering. We will see how I am at the 2 month mark.