Post-COVID Syndrome is real

For such a teeny virus, Covid has sure impacted the lives of millions of people world wide. I’m so sorry you’re one of the victims of this awful pandemic. And sadly, as you can see, you’re not alone in seeking a solution and relief from the side effects that are lingering in some people.
The symptoms just keep coming; from neurological issues of brain fog and neuropathy, to exhaustion, auto immune diseases, to heart and lung problems, etc.
There are other viruses which can also cause long term effects such as Epstein-Barr. But Covid seems to have upped its game with residual effects.

As with every medical facility, since this is such a new disease with evolving discoveries caused by the virus, even Mayo has a supply/demand issue for appointments with patients seeking answers.
Because of the acute shortage of medical personal across the board there aren’t enough people to staff and meet all the needs. This isn’t central to just Mayo Clinic.

If more people cooperated to get this virus under control by getting vaccinated, wearing masks and taking simple precautions, in time the over worked members of the medical field will be able to return to helping people recover.

So while I share your frustration, it’s not fair to say that Mayo gives false hope. Believe me, ‘they’ hear you. That’s why there are long hauler clinics available. It is distressing to find waiting periods so I really join you in the hope that more clinics will be up and running soon, by all medical providers in each country. There are so many unknowns with this disease. More time and research needs to be done to find solutions.
It doesn’t help you in the meantime. But I’m glad you found our Connect forum to be able to share your story and exchange thoughts with others who are suffering with similar symptoms…to know you’re not alone.

Mayo Clinic remains a bastion of hope to people world wide for so many medical issues. You can be assured the researchers at Mayo are doing their best to find answers to the Covid side effects.

With your neuropathy symptoms have you visited our discussions in the Brain and Nervous system group? https://connect.mayoclinic.org/group/neuropathy/

@rmca and others in this Post-Covid group.

Potential good news for Long Haulers!
There’s been so much discussion surrounding Covid and the unexplained side effects it’s been producing in people, especially the neurological and auto-immune responses. Below is an excerpt from a timely article released by Reuters today. It gives an update into some of the most recent findings on Covid-19. I’ve posted two of them.
With the understanding that this virus can be leaving some patients with self-attacking antibodies it will give our researches more breadcrumbs to follow in their research to find treatments for people suffering from long-haul Covid symptoms!

By Nancy Lapid (Reuters) - The following is a summary of some recent studies on COVID-19. They include research that warrants further study to corroborate the findings and that has yet to be certified by peer review.

Coronavirus leaves survivors with self-attacking antibodies

Months after recovering from SARS-CoV-2 infection, survivors have elevated levels of antibodies that can mistakenly attack their own organs and tissues, even if they had not been severely ill, according to new findings.

Among 177 healthcare workers who had recovered from confirmed coronavirus infections contracted before the availability of vaccines, all had persistent autoantibodies, including ones that can cause chronic inflammation and injury of the joints, skin and nervous system. "We would not normally expect to see such a diverse array of autoantibodies elevated in these individuals or stay elevated for as long six months after full clinical recovery," said Susan Cheng of the Cedars-Sinai Smidt Heart Institute in Los Angeles. Patterns of elevated autoantibodies varied between men and women, the researchers reported on Thursday in the Journal of Translational Medicine.

We don't yet know how much longer, beyond six months, the antibodies will stay elevated and/or lead to any important clinical symptoms," Cheng said. "It will be essential to monitor individuals moving forward." Her team is investigating whether autoantibody elevations are linked with persistent symptoms in people with long COVID and planning to study autoantibody levels after infections with newer variants of the virus.
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B cells' effects weakened but not defeated by Omicron

The effects of antibodies produced by the immune system's "memory B cells" against the Omicron variant of the coronavirus, while weakened, could still be significant, researchers believe.

Once the body learns to recognize SARS-CoV-2, either after infection or vaccination, B cells generate fresh antibodies against the virus if there are not already enough antibodies circulating in the blood that can neutralize it. In a study reported on bioRxiv ahead of peer review, researchers analyzed the strength of more than 300 antibodies produced by memory B cells obtained from vaccinated volunteers, including some who had a prior SARS-CoV-2 infection.

"Omicron seemed to evade a very large share of the memory B cells pool," researchers said, adding that it "seems to still be efficiently recognized by 30% of total antibodies and close to 10% of all potent neutralizing antibodies," said Matthieu Mahevas and Pascal Chappert of Universite de Paris in a joint email. Memory B cells' robust ability to proliferate and produce antibodies might compensate "in less than two days" for those antibodies' reduced effectiveness, they speculate.

In combination with other immune system components, particularly T cells, the effects of B cells likely help to explain why most vaccinated individuals who become infected do not become sick enough to require hospitalization, they said.

Click for a Reuters graphic https://tmsnrt.rs/3c7R3Bl on vaccines in development.

(Reporting by Nancy Lapid; Editing by Bill Berkrot)

My son and I feel as though we are writing the care plan too! He is the one with long Covid and I am trying to help anyway so can. I feel as helpless as a kitten, I’m sorry for the lack of knowledge about what we should DO! Can time passing get us closer to recovery, I pray, I hope, I hear you.

I agree with everything you said and assure you that I have utmost praise and compassion for the medical community taking on this overwhelming problem. And I am much more fortunate than many who gather here and I am truly grateful. To clarify, the false hope feeling comes from the offering of “ request appointment” by Mayo when the waiting list is a year. I felt others should be informed regarding that fact...

Welcome @mama5, It's easy to understand feeling helpless but you are not alone. You might want to follow the Post-COVID Recovery expert blog for the latest developments, research trials, resources, and information about the coronavirus, long-term effects, and recovery. Here's the link to the blog - https://connect.mayoclinic.org/blog/post-covid-recovery/

How is your son doing with his symptoms?

What long haul COVID care is offered at Mayo and what does it involve. Has anyone been to Mayo for this?

Hello My name is Frannie. I had covid/pnemonia in Jan 2021.. I was ill for 3 months. i was on medications zpak then another zpak then strong antibiotic for pnemonia and prendisone.. To say th eleast i got the Modena vac. I fought to stay out of the hospital and stayed home. I was diagnosed with long haul covid that April 2022. I have continuous headaches and aches.. My most chronic issue is canker sores.. I have meds to rinse my mouth but seems the only thing that helps is washing with salt water rinses. I was real ill last jan and the dr put me on 5o mg of prednisone. I thought I was gonna die.. I have autoimmune illness prior to this.. PSA.. So i have been on medications for that methotrxate.my hair started falling out and my liver enzymes went crazy. I stated self injections not sure the name. I came down with pnemonia again and all sorts of yeast infections and cysts.. So to day im not on any prescription meds. I use a nettie pot with himalayan salt for the sinus headaches that just are there now.. I do get dizzy if i get up too fast. I am not longer wheezing but wake up with phlemg all the time.. It seems to me this is part of my life now.. I try to take any natural supplements I can.. i recently started taking B6 and b12 and lysine and drink green tea.. My doctor is not sure if he can help.. so.. i m just dealing with this best I can.. i try to exercise daily and eat healthy. But as I read some of these posts i see that this is normal for Long haulers.. Not fun but guess it could be worse. Im still here..

Hello My name is Frannie.. I had covid/pnemonia in Jan 2020.. since being dx after 3-4 months stay home meds zpacx2 and levaquin and prednisone. I was dx with long haul in april 2020. I just dont feel well. headaches sinus bones ache.. I try natural i did get one vac.. modena in April 2020.. No more for me i do nettie pots, peppermint oil and b6 and b 12, I have chronic canker sores and brain fog still. I am trying to just take one day at a time and know there is a reason im here. I also have psa.. no meds. took them and i was so sick.. i use cbd oil when my pain is unbearable . to stay active and drink lots water helps me.. and natural green tea and honey... thanks for letting me share..

Sorry i wrote this twice see below.

Ps I also have been drinking protein drinks daily. I was on ensure for months then i started on organic protein drinks. I can actually get some things done here. I am retired. I used to work pt time before covid but just getting things done here is enough and i kind of like petting my dogs and cats and avoiding any extra stress other than long haul issues... I am also using colloidal silver and distilled water for my lung wheezing and it is starting to clear up...