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Covid-19 Long Haulers

We have ALL your misinformation, plus some TRUE FACTS and SCIENCE.
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bill_g
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Re: Covid-19 Long Haulers

#26

Post by bill_g »

Thanks for the detailed story Lani. I thought I was reading about Mrs medical history. Pretty similar experiences.
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Lani
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Re: Covid-19 Long Haulers

#27

Post by Lani »

bill_g wrote: Sat Apr 03, 2021 10:30 am Thanks for the detailed story Lani. I thought I was reading about Mrs medical history. Pretty similar experiences.
Thanks to you, too. It's hard. The B12 monthly shots are helpful, btw.
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Lani
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Re: Covid-19 Long Haulers

#28

Post by Lani »

Completed 2 months on the protocol. Subtle changes, like reduced episodes of double vision, some unpleasant sensations fading a bit, less brain fog. The B12 seems to wear off in 3 weeks, so now I'll be getting it every 3 weeks. I looked up the protocol and learned that it could go on for 8 months before it fully benefits me (to whatever level I reach). :o Small changes so far, glad for them, and hope they continue!
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Re: Covid-19 Long Haulers

#29

Post by AndyinPA »

Lani wrote: Thu May 27, 2021 9:51 pm Completed 2 months on the protocol. Subtle changes, like reduced episodes of double vision, some unpleasant sensations fading a bit, less brain fog. The B12 seems to wear off in 3 weeks, so now I'll be getting it every 3 weeks. I looked up the protocol and learned that it could go on for 8 months before it fully benefits me (to whatever level I reach). :o Small changes so far, glad for them, and hope they continue!
Good luck! :thumbsup:
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Re: Covid-19 Long Haulers

#30

Post by Tiredretiredlawyer »

Keep on keepin' on, Lani!
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Re: Covid-19 Long Haulers

#31

Post by Phoenix520 »

:bighug:
You, girl, are a marvel to me. B12 is good stuff. Hang in there!!!
:bighug:
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Lani
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Re: Covid-19 Long Haulers

#32

Post by Lani »

I had a great day. I took vacation leave on Friday, but still answered calls and emails. My brain was fully functional. HURRAY! Physically, I'm still extremely very weak, but I'm so happy that about the other improvements. And I haven't had double vision for several days!
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Re: Covid-19 Long Haulers

#33

Post by AndyinPA »

Lani wrote: Sat May 29, 2021 7:12 am I had a great day. I took vacation leave on Friday, but still answered calls and emails. My brain was fully functional. HURRAY! Physically, I'm still extremely very weak, but I'm so happy that about the other improvements. And I haven't had double vision for several days!
:dance: :thumbsup:
"Choose your leaders with wisdom and forethought. To be led by a coward is to be controlled by all that the coward fears… To be led by a liar is to ask to be told lies." -Octavia E. Butler
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Re: Covid-19 Long Haulers

#34

Post by Lani »

This is really sad. Babies, teens and the in-betweens with long COVID. I hate it when people say kids aren't likely to get the virus, and if they do, it's usually mild. Experts have no idea how long COVID will impact on babies and toddlers.

As more kids go down the ‘deep, dark tunnel’ of long Covid, doctors still can’t predict who is at risk
https://www.statnews.com/2021/06/10/as- ... s-at-risk/
Kate’s story makes clear that long Covid is not an adults-only phenomenon. Numbers are hard to come by, but more children and adolescents are experiencing chronic symptoms after Covid even as the pandemic ebbs in the U.S., say doctors at the few clinics devoted to caring for them. Although the disease has played out in ways that differ between adults and children, long Covid is posing the same mystery in kids as in adults.

“I don’t think we have a good understanding at all about the pathophysiology behind post-Covid syndrome,” said Alicia Johnston, one of Kate’s doctors and head of the Boston Children’s Hospital long Covid clinic. “And I’m not sure that the pathophysiology is going to be the same in post-Covid syndrome in adults compared to post-Covid syndrome in children.”
:snippity:
A half-dozen clinics across the U.S. — roughly one-tenth of those seeing adults — strive to care for young patients with post-Covid mental and physical health issues affecting multiple organ systems: neurological, respiratory, gastrointestinal, musculoskeletal, cardiovascular, and dermatologic. Treatments borrowed from other post-viral syndromes and tailored to symptoms are the only tools doctors have; so far, they seem to help in many cases.
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Re: Covid-19 Long Haulers

#35

Post by RTH10260 »

More than 2m adults in England have had long Covid for over 12 weeks – study
Research says people tend to fall into two categories: those with respiratory illness and those with fatigue-related symptoms

Linda Geddes
Thu 24 Jun 2021 00.01 BST

More than 2 million adults in England have experienced coronavirus symptoms lasting over 12 weeks, government data suggests – double the previous estimate for long Covid.

The study, one of the largest to date, found that people with ongoing symptoms tended to fall into two categories: those with respiratory symptoms, who often experienced more severe illness when they first got sick, and a second group with fatigue-related symptoms.

Like previous studies, it found that women were more commonly affected and that the prevalence of ongoing symptoms increased with age. Researchers described the findings as “alarming”.



https://www.theguardian.com/society/202 ... eeks-study
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Lani
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Re: Covid-19 Long Haulers

#36

Post by Lani »

I posted an article somewhere above about long Covid-19 (the newest name for it) and children. There are 2 years old toddlers who are believed to have it. No one knows what the long impact will be on little children. That's one reason I'm pissed off when people minimize the impact on children. The latest variant is more transmissible, and kids under 12 can't be vaccinated. One more reason why EVERYONE over 11 should be vaccinated. I'm seeing disturbing data almost daily in my state. Kids are getting sick, but assumed to have a low risk for serious illness. No attention to possible long term effects. Yesterday, the county report was 6 new cases, 5 of them children under 12. That's the new normal.
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MN-Skeptic
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Re: Covid-19 Long Haulers

#37

Post by MN-Skeptic »

Lani wrote: Sat Jun 26, 2021 12:15 am One more reason why EVERYONE over 11 should be vaccinated.
I talked to my sister-in-law last week. Her son is going to get his daughter vaccinated this summer right after she turns 12. Yes! :thumbsup:
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Lani
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Re: Covid-19 Long Haulers

#38

Post by Lani »

MN-Skeptic wrote: Sat Jun 26, 2021 12:34 am
Lani wrote: Sat Jun 26, 2021 12:15 am One more reason why EVERYONE over 11 should be vaccinated.
I talked to my sister-in-law last week. Her son is going to get his daughter vaccinated this summer right after she turns 12. Yes! :thumbsup:
:thumbsup: :boxing:
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Lani
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Re: Covid-19 Long Haulers

#39

Post by Lani »

A few minutes ago, CNN interviewed a CDC director. I didn't get his name, and there are several directors at the CDC. He was speaking about children who had Covid-19 and how serious a "mild" infection can be. Problems linger for months and can continue much longer. Some for a lifetime because of the impact on the brain, heart and other organs. The video isn't available on website yet.

While searching for the video, I found this:
Imagine there is a new contagious illness spreading among children. More than 400 kids in the United States have died from it. Tens of thousands have been hospitalized. Some who only had mild initial symptoms are afflicted with lasting effects such as headaches, heart palpitations, persistent fatigue and inability to concentrate. Many of the affected children were previously healthy, and it’s impossible to predict who will fall ill and who will be spared.

We don’t have to imagine any of this, of course. The effects of covid-19 on children have been overshadowed by the much greater impacts on adults. But just because older people are more likely to suffer severe consequences doesn’t mean that the coronavirus isn’t a danger to kids.

:snippity:

To begin with, we need to stop comparing the severity of children’s illness to that of adults; it shouldn’t matter if adults are at greater risk if the illness among kids is itself a problem. That’s why I offer the thought experiment above. Covid-19 is now one of the leading causes of death among children. If the virus only affected children, there’s no doubt we’d clamor to do everything we could to prevent them from getting this disease.

Another fallacy is comparing covid-19 with other respiratory illnesses such as the flu. This coronavirus affects the body differently. According to the Centers for Disease Control and Prevention, there have been at least 4,000 cases of multisystem inflammatory syndrome in children (MIS-C), a condition characterized by inflammation throughout the body, including of the heart, brain, kidneys, eyes and skin. Also, just like with adults, long-haul covid has been reported in kids. One study found that 27 percent of children still had at least one persistent symptom 120 days after diagnosis. The potential for long-term consequences must be considered as part of the cost of illness in children, along with the emotional toll of a child becoming sick and the trauma inflicted on the entire family.
https://www.washingtonpost.com/opinions ... ldren-too/
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Re: Covid-19 Long Haulers

#40

Post by RTH10260 »

Even survivors of milder covid-19 face heightened risk of kidney damage, study finds
By Hannah Knowles1:32 p.m.

A new study provides grim insight into “long covid,” finding that even survivors of less-serious covid-19 cases had a heightened risk of kidney damage.

The dangers increase with the severity of infection but extend even to those who were not hospitalized, according to the paper published Wednesday in the Journal of the American Society of Nephrology. Risks included “end stage kidney disease,” in which the organs can no longer filter blood without transplant or regular dialysis.

The researchers wrote that given the massive scale of coronavirus infections in the United States and worldwide, “the numbers of people with long COVID in need of post COVID care will likely be staggering and will present substantial strain on already overwhelmed health systems.”

“This is really huge. It will really literally shape our lives for probably the next decade or more,” one of the authors, Ziyad Al-Aly, told Bloomberg News. Al-Aly, the chief of research at VA St. Louis Health Care System, is among many scientists scrambling to learn more about the lingering effects of a disease that is known for ravaging the lungs but can also wreak havoc on other organs.

Al-Aly said that even survivors who were not hospitalized and had no kidney problems in their first 30 days faced a 23 percent higher risk of acute kidney injury. “These people literally thought they have no problem,” he said. “Everything is good, 30 days went by. They recovered.”

The researchers drew on the U.S. Department of Veterans Affairs’ health-care databases to identify about 89,000 veterans who survived the first 30 days of covid-19. It compared them with many other veterans who did not contract the disease.


https://www.washingtonpost.com/nation/2 ... MTMJRI3UIE
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Re: Covid-19 Long Haulers

#41

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From STAT News -

Vaccination reduces risk of long Covid, even when people are infected, U.K. study indicates
People who are fully vaccinated against Covid-19 appear to have a much lower likelihood of developing long Covid than unvaccinated people even when they contract the coronavirus, a study published Wednesday indicated.

The research is among the earliest evidence that immunization substantially decreases the risk of long Covid even when a breakthrough infection occurs. Already, researchers had said that by preventing many infections entirely, vaccines would reduce the number of cases of long Covid, but it wasn’t clear what the risk would be for people who still got infected after vaccination.

“We found that the odds of having symptoms for 28 days or more after post-vaccination infection were approximately halved by having two vaccine doses,” researchers wrote in the study, published in the journal The Lancet Infectious Diseases. “This result suggests that the risk of long Covid is reduced in individuals who have received double vaccination, when additionally considering the already documented reduced risk of infection overall.”

The long Covid findings came from research that looked more broadly at breakthrough infections — investigating, for instance, which groups of people were at higher risk of such cases. The study relied on data submitted by millions of adults in the United Kingdom who used the Covid Symptom Study phone app.
Despite the finding that vaccination reduces the risk of long Covid — a fact that experts pointed to as yet another reason for people to get their shots — many questions remain about the cases of long Covid that do occur among people who have been infected after vaccination. It’s not clear if, overall, the symptoms will look different, be milder, or resolve faster than those that strike people who aren’t vaccinated.
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Lani
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Re: Covid-19 Long Haulers

#42

Post by Lani »

I've been thinking about this. Anyone remember when people with chronic fatigue or fibromyalgia were ridiculed? I know some people who are struggling with long covid and trying to keep up with work, but hide it because of the bad attitudes of others and fear of losing their jobs.

During the early days of the epidemic, CDC recognized that some patients had continuing or new problems. At that time, the CDC referred to weeks or a few months to recover. Other medical research organizations warned of mass long term disability. Only recently has it been generally recognized that long covid can be lifelong.

How long covid could change the way we think about disability
https://www.washingtonpost.com/health/2 ... 755aa95f02
The coronavirus pandemic has created a mass-disabling event that experts liken to HIV, polio or World War II, with millions suffering the long-term effects of infection with the coronavirus. Many have found their lives dramatically changed and are grappling with what it means to be disabled.

“It’s an entirely new identity,” Stanislawczyk said.

The dramatic influx of newly disabled Americans changes the calculus for disability advocates, who have in recent years been uniting around a shared identity, pushing back against historic marginalization by affirming their self worth and embracing their disabilities.

“We’re taking a big-tent approach in the disability community,” said Rebecca Vallas, a senior fellow at the Century Foundation.
Anyway.... it's long and very informative. My specialty is the ADA, so I was very interested in seeing the changes in how people with long covid are being viewed and the change in attitudes.
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Re: Covid-19 Long Haulers

#43

Post by Tiredretiredlawyer »

Lifelong fibromyalgia expert speaking. Welcome to my world.

I went through all the phases of fibromyalgia- denial, anger and acceptance. I even worked in a law firm that represented the disabled, but there was no emotional support. I was the only female lawyer, my episodes were so random and so different, I'm sure they thought I was a hypochondriac. It can also make you appear to have an alcohol or substance abuse problem.

Covid has done that one good thing for the other "hidden disease" patients (migraines, lupus, myalgic encephalomyelitis, rheumatoid arthritis, etc.) who experience severe fatigue that can last for weeks on end, then return.

Even Mike Dunford tweeted about his experience with it.
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