Long haulers syndrome

KCDiva · ‎03-09-2010

I hope this doesn't get removed. I am not trying to cause any problems. My sister is experiencing long haulers syndrome. I am wondering if anyone has a family member or experiencing this themselves. She had Covid in December and very sick. She only went to the hospital for an iv for hydrating. She has lost 40 pounds and can't eat due to lack of taste still affecting her. She is depressed. Mainly she has severe brain fog. She is 76. A year ago she was in great health with more energy than most people. Again this may get deleted but if you have a similar experience can you respond? Her doctors have said they don't know what to do to lessen her symptoms. TIA

Twoaces · ‎05-02-2011

So sorry for your sister. I have read that there are some accredited medical centers that specialize in helping long haulers. They have learned enough over time that they can offer valid assistance. Keep researching because there might be more help out there.

DrKelli · ‎03-10-2010

My yoga teacher has Long Haulers and she describes her symptoms about like your sister. She said the brain fog is especially frustrating. The last time I talked to her, she said it was getting better though. She had Covid last spring, so it has been about a year and a half. Also, the other thing she complains about is it being hard to catch her breath--and she is a competitive ballroom dancer. LHS is very real.

On It · ‎03-15-2021

@KCDiva The percentage of folks experiencing long term effects is in the range of 10%-30% so that is a substantial group. Check frequently because this number of cases is going to cause some major studies to find help. I am sorry your sister is having to deal with this.

itsmagic · ‎08-08-2011

My sister had Covid a little over a year ago. She went to the ER since she felt so sick but did not need to be admitted. She is in her late 50s and has also mentioned having the brain fog for several months after recuperating but it has gotten much better. My sister’s taste and smell came back after a couple months.

Sugipine · ‎05-22-2016

I still have it...brain fog and shortness of breath. I got covid in April 2020. I get depressed b/c of that but I am working on keeping positive.

BlueFinch · ‎08-31-2019

Although you viewed your sister as active and in good health before COVID, being 76 with LHS, will complicate recovery. Many, much younger, are struggling months on end. But, this doesn't mean she can't recover.

It's important for her to see a physician who has been working with LHS patients. Perhaps a well informed Geriatric specialist, who understands senior needs, and I wouldn't rule out other specialties.

General health has to be monitored closely, including dietary needs, and supplements. A 40lb weight loss is serious. Her physician should be very alarmed. How can she heal if she's nutrient challenged? Losing that much weight quickly, at her age, will affect general health, muscle and bones. This will add to weakness and fatigue.

She's not healing she's declining. If her doc doesn't have any answers, he should have referred her somewhere else. I hate that seniors aren't always given the attention they need. We're not disposable.

Some patients are given stimulants for brain fog and fatigue, with noted improvement, but this would be tricky for someone 76. But, there may be safe alternatives.

Her entire body has taken a serious hit. I'd make sure all levels, e.g., ViD, B12, Iron, etc., are within recommended range, along with Thyroid levels. Cardiac and lung changes post COVID need f/u monitoring. Nothing should be missed, or dismissed.

The older we get, the longer it takes to recover from serious illness. Even seniors who receive anesthesia for minor surgery, often find they have to deal with brain fog and sometimes persistent cognitive changes. As healthy as we may seem, we are fragile and things can turn on a dime.

It's good you're being an advocate for your sister. As bad as she feels, while also fighting depression, she might not be able to fight for herself, or make the best choices.

Suzeecat · ‎05-05-2010

I got Covid in January 2021 and am fortunate that I got early monoclonal antibodies and recovered quickly and fully. I joined a Facebook group for Covid Long Haulers just to see what some people were dealing with. A number of them have reported significant improvement after they received the vaccine, an unexpected positive side effect! Has your sister received the vaccine by any chance? If not, she might want to consider it.

Bibione · ‎03-12-2010

Can you post the Facebook Long Hauler site? Thanks. My 59 year old very healthy best friend in Italy was in a hospital for over 3 weeks last winter. She never fully recovered.

Right now,after a heart valve change, they can't wake her up from an induced coma. She keeps having convulsions. She was so happy I was going there soon, so we could spend time together after 2 years.

About 1 week ago, I saw a text from her sister. I had to leave work 5 hours early,cause I couldn't stop crying.

After 2 weeks of finding out she is in a coma, I don't think of her all the time. My other best friend there has terminal cancer, as well as my favorite aunt. My mom is 91 with dementia.

I am scared of flying there, but I have to go for my mom,even if she doesn't recognize me.

luvmybeetle · ‎08-10-2013

@DrKelli wrote:
My yoga teacher has Long Haulers and she describes her symptoms about like your sister. She said the brain fog is especially frustrating. The last time I talked to her, she said it was getting better though. She had Covid last spring, so it has been about a year and a half. Also, the other thing she complains about is it being hard to catch her breath--and she is a competitive ballroom dancer. LHS is very real.

My doctor and I believe that I had Covid 19 the November before we knew about it in the U.S. That would be 2019 - November. I have been having the same symtoms as Dr. Kelli writes about. I have a bit of short-term memory loss and find it hard to breathe after certain activity. I have never been tested because we didn't know about the virus at that time, but my doctor believes it was here in the U.S. before January 2020. The only thing I can suggest is to fight it in your mind and get as much outside time as you can. Being out in the air helps, just don't overdo it.