Post-COVID Syndrome is real

Posted by nant @nant, Jul 26, 2021

I had covid mid April and have had many PCS symptoms. I seem to be educating my doctors and therapists. Sometimes it feels like they think I am faking and the next time they tell me they have heard the same thing from others. I am doing everything from aqua therapy, speech therapy for the "fog" and still exhausted, headaches, fog and not sleeping well ect. I have used my short term disability at work and working thru my PTO time. I am more than frustrated. Any encouragement?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Lori, Volunteer Mentor | @loribmt | Jan 3, 2022

In reply to @rmca "“Nant ” You posted in July that, “I seem to be educating my doctors and therapists.”..." + (show)

@rmca

“Nant ” You posted in July that, “I seem to be educating my doctors and therapists.” My exact sentiments. Many( or maybe even most) doctors are long hauler phobic. They have too much on their plate to even try to deal with an entirely “new” medical field. Enter Omicron....and we are further back on the burner. It’s the reality of the situation and requires that we forge ahead with a very proactive approach to our own situation. There is quite an impressive amount of research going on but most Drs aren’t knowledgeable regarding same. And they don’t have time! Examples: In order for me to know whether or not there were any indications in my blood work for the reasons why I have severe muscle pain and extreme weakness and tingling and numbness, and eliminate anything as a “cause” I went to my GP. I see her once a year for annual physical. In hand I had a printout of the CDC recommended list of blood tests for long haulers. This dr was so relieved that I did the leg work that she readily wrote the orders. I did have to educate her regarding the fact that people with an MTHFR gene mutation should have their homocysteine checked since there is an implication of a connection to Covid complications. All five vials came back impressively within range. After all...I’m one of those who 14 months ago was totally healthy, exercised intensely 7 days a week, ate five servings of vegetables and fruits a day. And long haulers’ tests often come back normal. The irony of it all.
Example: I had an EMG done by another unknowledgeable-of-long-hauler dilemmas-dr, who while sticking the needles in my feet, legs, and back comments under his breath to the tech assisting him, “I wish we knew what we were looking for.” EMG came back normal. The autonomic part of the test has yet to be rescheduled since the machine has been broken for the past month and they have yet to reschedule me. Cleveland Clinic for all of the above.
Example: I originally was almost excited that I could move on to another big name, Mayo Clinic, by clicking on the blue box and getting an appointment. I waited my turn in the phone line that was a matter of two days of waiting for the scheduled called. I was greeted by the nice Mayo info taker, answered all the name, address, and insurance questions, put on hold while she checked availability of appointment and was then told the first available appointment was in a year. Yep, reality. The long hauler line is long...and the answers few and far between. I am impressed that you got in a long hauler clinic. The clinics across the country are booked. I hope they help you. Meanwhile for those of us who are not clinic lucky, we must Google our symptoms and locate doctors.
There is marvelous research out of Northwestern U indicating that Drs should be ordering MRIs and ultrasounds to locate nerve damage. I’m printing out the research and about to start locating a neurologist who will place the orders. Sounds simple enough, right? Not if they have a one-size-fits-all mindset...and are long hauler phobic. All we are asking is for “a little respect” regarding what we know from having too much time to discover what the doctors need to find the time to pay attention to.
As for the Mayo mentors....Gd bless your efforts. Thanks for letting us all gather on common ground. You might want to offer your links to the doctors on staff....just in case. And fellow long haulers....keep Googling and gathering info.
And pay no mind to the blue Mayo box...it will give you false hope until next year. Just sayin...in case someone hears.

Jump to this post

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/

Lori, Volunteer Mentor | @loribmt | Jan 3, 2022

@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.
~~~~~~

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)

mama5 | @mama5 | Jan 3, 2022

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.

rmca | @rmca | Jan 4, 2022

In reply to @loribmt "For such a teeny virus, Covid has sure impacted the lives of millions of people world..." + (show)

@loribmt

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/

Jump to this post

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...

John, Volunteer Mentor | @johnbishop | Jan 4, 2022

In reply to @mama5 "My son and I feel as though we are writing the care plan too! He is..." + (show)

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?

lc1989 | @lc1989 | Jan 22, 2023

In reply to @lmschwartz2 "Thank you for sharing...I am in a similar sitation and having a hard time getting my..." + (show)

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

mercyreigns | @mercyreigns | Jan 24, 2023

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..

mercyreigns | @mercyreigns | Jan 24, 2023

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..

mercyreigns | @mercyreigns | Jan 24, 2023

In reply to @mercyreigns "Hello My name is Frannie.. I had covid/pnemonia in Jan 2020.. since being dx after 3-4..." + (show)

Sorry i wrote this twice see below.

mercyreigns | @mercyreigns | Jan 24, 2023

In reply to @mercyreigns "Hello My name is Frannie.. I had covid/pnemonia in Jan 2020.. since being dx after 3-4..." + (show)

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...

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