Do other long haulers suffer with brain changes? Seen any improvement?

I had COVID in June 2022. The thing that helped my cognitive issues was hyperbaric oxygen therapy. I noticed improvement after the first “dive,” and after 5 treatments I was back to normal as far as brain issues. It didn’t help my muscle weakness, though. My 5 treatments were each 1 hour at 2.0 atm. One per day for 5 straight days.

For purposes of comparison, Did the long-haulers often have "break through" cases or were they unprotected by vaccinations?

I was very sick with COVID all of January and part of February, before vaccines were available in my area. I still have bouts of not being able to catch my breath, word loss of even the most common words, loss and/or distorted taste and smell—bacon and prosciutto taste like salted plastic. A skunk and brewing coffee smell the same. Salad greens, which I love, taste and smell rotted, no matter how fresh. Most things I cannot smell, or the smell doesn’t match the item. Loss of hearing in one ear. The cognitive disruption is the worse part though. I’m finding it difficult to want to engage in conversations with other people. I’m afraid I’ll lose my train of thought or won’t be able to “find” a word to complete a sentence. Embarrassing.

I’ve not found any help. I tell my PCP and don’t get any direction. What is available to help?

I got Covid in July 2021 and it's been a struggle with long haul issues since (both pulmonary and cognitive). The cognitive issues are so upsetting. I have been on STD since Oct because the stress of my job and the memory issues/stumbling over words/losing my train of thought in the middle of a sentence really impact me/my health to the point it impacted the ability to do my job. I used to be able to multi-task and solution tough problems with a snap but now, even just in mundane conversations where I am not doing anything else, I struggle to catch and remember the basic points.

At best, I will remain on STD through the end of January. I am not confident I will be ready to work after that but the whole idea of trying to tackle LTD is so daunting. On the flip side, I am worried that my issues will prevent me from doing my job if I return to work and result in me losing my job along with my LTD insurance.

I am grateful as I am working with the Mayo Clinic in FL to help with these Covid related issues but I won't be able to complete all of the testing and programs before my STD runs out at the end of Jan.

And of course, the stress of trying to determine the right course to take exasperates my issues too. Go figure lol

Has anyone here had any success with their LTD relating to long Covid?

Hello, l am new to this site. Fair warning this is a long post. I’m scared, frustrated, anxiety ridden & trying to hang on. I tested positive Nov 6th, 2020. I had done everything possible to avoid this disease. My husband is a 23 yr transplant survivor & didn’t want him to get sick. I worked in the title business, we saw people coming in to sell/buy property, a lot of people, it was an office of 15 people. I asked to work from home & was discouraged from that. “Too much of a risk for the company”. Out of the 15 of us all but 3 got covid. They still did not shut down the office, just adjusted the way they did business. I was sick, coughing, high fever, body pains worse than I had ever felt, headache, no smell, no taste or appetite. So weak I couldn’t do anything by myself, my husband always right by my side. Nov 12th was my worst day, 106 fever, blood oxygen 72. Called the hospital & “unless she is blue, we have no room.” So my husband watched & wanted me to go, I was not going to die on a gurney in the hall by myself!! I went to sleep & by morning the “me” that went to bed was not the “me” that woke up. I had NO memory, didn’t know who my husband was, didn’t know where I was, did know my name. After a difficult conversation I started to remember my husband the house the dogs. But I didn’t have the memory to use a toothbrush, I didn’t know how to put on makeup. I couldn’t tie my shoes. I also could barely walk with out falling down. I couldn’t carry on a conversation, I couldn’t get the correct words out or I just couldn’t focus. Needless to say I was scared. I saw my Dr & she said “hopefully things will right themselves”, 3 weeks went by without any progress. My work wanted me to return, couldn’t work from home. I tried for 2 days to go, I had to use my GPS to get to work & back home. I had no idea where anything was. Realized I shouldn’t be driving & took a leave of absence. I was referred to neurologist & went through every scan & test possible. On paper all tests came back normal. Saw a neuropsychologist and took a 4 hour test for cognitive skills. Test scores were not great, I cried through most of the test feeling like I was failing. I had 6 months of physical therapy to learn how to walk again, still have problems & still fall. Had the opportunity to continue PT, but just couldn’t afford to. By this time I had well over $30K in medical bills. I was put on short term disability, still no improvement. Neurologist stated that “ since all tests show normal I suggest you see a psychiatrist & get on with your life & quit wasting time!” I was then put on long term disability, Mutual of Omaha asked for updates etc, I gave them everything they asked for & they agreed with Drs that at the time I was still unable to work. Through my disability plan Mutual of Omaha contacted an attorney on my behalf for SS disability, I’m still that process of piles of paperwork. My check usually came on the 6th of the month, it was Dec 10th with no check. I called my rep, out of the blue he states “we have decided to deny anymore benefits for you. There is not enough medical documentation to continue.” He also states that “oh my bad, I should have contacted you before Thanksgiving! But I was going on vacation & didn’t get it done!” My husband had to take over the phone call, I was hysterical. When he asked the rep what documentation will be acceptable-they couldn’t actually say what they needed! So I have been referred to another neurologist-for more tests? That I am unable to pay for? I could have been working on getting “the medical documentation” almost a month ago! My husband & I had to sell our house & all of our belongings! We are not homeless just living different lifestyle.
So does anyone know what medical documentation an insurance company will accept for the inability to do math, spell, no longer have memory to do anything. I can’t follow a recipe, I can’t figure the check book. I will start something get sidetracked & forget what I was doing. I leave the water running in the sink & walk outside if it’s a nice day. I am unable to handle any stress or difficult situations, I completely come unglued & go into panic mode. As time goes on & going into my 2nd year I feel more of me is deteriorating. The joint pain has increased & I now need a brace to walk. Anxiety & depression are constant. Fatigue is still a killer, I’ve tried doing short walks or small tasks outdoors, but I am so tired for the next 2 days.
I welcome any thoughts or suggestions, please no negative comments.
Covid-19 destroys lives in so many ways. We all need to hang onto HOPE.
Thanks for reading & letting me share my story. Peace & Blessings to all.

May I ask how you are today? I had Covid in January 2022 and been dealing with long covid problems since. This year 2024 my job of 25 yrs put me on Principal LTD, the mind confusion and black outs and memory, full body pain and numbness, tailbone and spine pain is severe, pins and needles and body temps off and on. Shoes are torcher. My hands and feet just burn. Having anxiety attacks while driving. My family thinks I’ve just went crazy and stepped away. Tackling this on my own is not easy. I can’t remember nothing. I can’t even navigate through the system for benefits. I’m just confused. I also will start doing something and go outside and forget or another room and start something else. Have you found anything that helps??

May I ask how you are today? I had Covid in January 2022 and been dealing with long covid problems since. This year 2024 my job of 25 yrs put me on Principal LTD, the mind confusion and black outs and memory, full body pain and numbness, tailbone and spine pain is severe, pins and needles and body temps off and on. Shoes are torcher. My hands and feet just burn. Having anxiety attacks while driving. My family thinks I’ve just went crazy and stepped away. Tackling this on my own is not easy. I can’t remember nothing. I can’t even navigate through the system for benefits. I’m just confused. I also will start doing something and go outside and forget or another room and start something else. Have you found anything that helps??

I’m sorry to hear that you are still dealing with this. I wasn’t trying to compare, your story made me cry. I also list 30lbs at the beginning and this yr my vision has gotten worse. Thing started to “blend together” on me driving and thing turn blurry. My mind keeps getting worse. Like a tv that keeps turning fuzzy. Something’s are similar but far from what you’ve struggled through. I just wondered if anything has helped any of your symptoms. My anxiety makes it a lot worse. I too can’t handle negative or frustration well at all. None of the antidepressants seem to help. I’ll continue to pray for you. I ask everyday why has this happened? I’m so happy that you atlease have your husband by your side. That alone is a great blessing. I just had gotton divorced after 25 yrs and my family says I’m lying. That’s bc I’ve gotton went off so much about things I don’t remember. Though I’ve always been told I’m too honest. I told them they’d never beable to understand. It’s a whole different thing than anything else. Have you gotton a stellate ganglion block? I guess it helps “reprogram” the brain to help with signals to the body? This is what my doctor suggest. I haven’t seen that anyone in there has gotten that.