What’s your long COVID story?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:We’ve struggled to get back to normal after long COVID.

I’d love to hear what’s worked to get better.

Ugh, I'm sorry. I struggled for quite a while with long Covid but I'm better now.

I got Covid in October of 2022, most likely on a long flight to Africa. I got very sick while visiting the Ngorongoro Crater, and the doctor I saw a few days later when I got to Zanzibar told me I'd had HAPE (high altitude pulmonary edema) while staying at Ngorongoro (we stayed at very high altitude). I probably did have HAPE (very, deadly, btw), but probably was predisposed to it because I had Covid, which I didn't know. I saw that doctor, a Tanzanian doctor, via telehealth while staying at a resort and it didn't occur to her or to me that I had Covid. So I didn't get treated or even tested even though I was having pretty extreme shortness of breath (at one point I tried to walk to the restaurant at our resort and literally collapsed to the ground) and fatigue that kept me in bed even though I was on vacation. I had zero appetite and only ate to be polite to the resort chef who made me special stuff. With HAPE, that shouldn't have continued after I got down to sea level; but it did. Didn't figure out it was Covid until my DH turned up sick on the flight home (yes, I'm pretty sure we gave at least some of the people in that business class cabin Covid, and yes I feel badly about it) and we tested positive when we got home. I was coughing like crazy.

I didn't stop coughing and wheezing for almost a year and half. Had terrible fatigue and brain fog. I was seen in the Medstar Long Covid clinic at about the 8-month mark. The neurologist I saw got me a sleep study and it turned out the brain fog was sleep apnea. She said that although the reason why isn't apparent, there has been a big increase in diagnosis of sleep apnea in long covid sufferers. Once I got the sleep apnea treated with cpap not only did my brain fog get fixed, my coughing stopped as well. My appetite has never come back, but I'm overweight so that is probably a good thing.

I struggled hard, and cried a lot thinking I'd spend the rest of my life sick and exhausted. But when I heard that long covid lasts for up to 18 months in some people that gave me hope because it meant some people suffered as long as I did and then did get better. Fortunately I did too.

I hope you get better, too. The odds are that you will.

The Ngorongoro crater is only 7,500 feet above sea level. Where were you staying that was “very high altitude”?

"Only 7,500 feet"? That is high. The general risk for mountain sickness, including often deadly HAPE, begins at 8,000. Our resort was a bit higher than 8,000 feet above sea level. Which is why the camp is called The Highlands. https://www.mahlatini.com/tanzania/ngorongoro-crater/the-highlands-ngorongoro?utm_source=google&utm_medium=cpc&utm_campaign=Mahlatini-US-PMax-All-DT%20TA-SE-XX-XX&utm_content=%7Badgroup%7D&gad_source=1&gclid=CjwKCAjwoa2xBhACEiwA1sb1BNP7cAfc1f_iFBCjvJj1jO0f-eMEr4Ru9E0uS_jiWKYm-vZduLtW6hoCakcQAvD_BwE&gclsrc=aw.ds

The doctor who diagnosed me with HAPE considered 8,000 feet above sea level more than high enough to almost kill me with high altitude sickness. And some people can have life threatening mountain sickness at elevations far lower than that. So I'm not sure what you are on about, dripping with both ignorance and condescension. Such a stupid combination, ignorance and the desperate need to go typing away at people.

[Anonymous]

Anonymous wrote:My husband has had it since his “mild” case of COVID in June 2022. The usual lineup of symptoms.

MedStar’s clinic is good but there are no specific treatments for long COVID so they throw what they can at various symptoms.

He’s fully disabled—has not been able to work or drive since. Can’t be upright longer than about 45 minutes without issues. I’m standing on a CVS line for his meds now, actually.

I'm so sorry. I'm the PP who was also seen in Medstar's Covid Clinic. They do what they can, but I think their job is to collect data more than it is to help us. Not that they don't want to help us, there just isn't a lot that can be done. It's frustrating.

[Anonymous]

Anonymous wrote:chronic headaches and fatigue. tingling/numbness in arms and legs.

My spouse had similar symptoms from long covid and was prescribed duloxetine which has been incredibly helpful - it reduced migraines / nerve pain from multiple times a week to be very rare occurrences now. Fatigue has also improved a lot. It was prescribed by a long Covid clinic and the neurologist said they had a lot of success with using duloxetine

[Anonymous]

I was trying to get healthier from a newly dx autoimmune condition and went on Dr Brooke Goldner’s low inflammatory autoimmune protocol. (Her info is available free if you want to look it up). A lot of my long Covid symptoms coincidentally cleared up as well including ear ringing and lack of smell. Brain fog also got a lot better and my energy level skyrocketed (but not sure if that was long Covid or just the autoimmune thing). Any way, worth a try to see if it helps.

[Anonymous]

Fatigue was my main and worst symptom following Covid. I took multiple rounds of Paxlovid then a lot of supplements, most of which my doctor recommended. Got better slowly over time with this.

[Anonymous]

No one likely wants to hear this, but my elderly mom died from long covid complications. She got a very ill from Covid in December 2023 and while she physically recovered from upper respiratory and fever symptoms within 2 weeks, her mental health took a downward spiral. She died January 2024.

[Anonymous]

Anonymous wrote:No one likely wants to hear this, but my elderly mom died from long covid complications. She got a very ill from Covid in December 2023 and while she physically recovered from upper respiratory and fever symptoms within 2 weeks, her mental health took a downward spiral. She died January 2024.

Did she take her life? I’m so sorry.

[Anonymous]

The long covid clinic at medstar helped my sister. She’s still chronically ill and has to be very careful of overdoing but she’s finally able to work full time again, which is helping her mental health too. She got sick in March 2020 with “the worst cold ever.” Her husband had it too (and had had Covid again twice since) without any long term symptoms. It’s such a crapshoot. Hope you feel better soon, OP!

[Anonymous]

Allergies. All of a sudden things I used to be mildly allergic to cause immediate hives/swelling. I can no longer drink any alcohol because my face balloons and I end up in the ER. I’m also suddenly allergic to a bunch of foods I used to eat frequently.

Allergist said any intense virus can cause it, but they are seeing it fairly often from Covid.

I now take 6 allergy pills a day, run air purifiers in every room of the house, and try not to go outside if it hasn’t rained recently.

[Anonymous]

Try LDN (low dose naltrexone). It’s usually prescribed off label for autoimmune stuff but my friends with long covid have done really well on it. It’s a great inflammation reducer. Can get it prescribed from an online platform like agelessrx

[Anonymous]

Tinnitus with moderate hearing loss in one ear and mild in the other. I will probably be getting hearing aids if it doesn't improve.

[Anonymous]

Anonymous wrote:Allergies. All of a sudden things I used to be mildly allergic to cause immediate hives/swelling. I can no longer drink any alcohol because my face balloons and I end up in the ER. I’m also suddenly allergic to a bunch of foods I used to eat frequently.

Allergist said any intense virus can cause it, but they are seeing it fairly often from Covid.

I now take 6 allergy pills a day, run air purifiers in every room of the house, and try not to go outside if it hasn’t rained recently.

Sounds more like anxiety. Have you tried an SSRI?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Allergies. All of a sudden things I used to be mildly allergic to cause immediate hives/swelling. I can no longer drink any alcohol because my face balloons and I end up in the ER. I’m also suddenly allergic to a bunch of foods I used to eat frequently.

Allergist said any intense virus can cause it, but they are seeing it fairly often from Covid.

I now take 6 allergy pills a day, run air purifiers in every room of the house, and try not to go outside if it hasn’t rained recently.

Sounds more like anxiety. Have you tried an SSRI?

You think someone’s face balloons to that size because of anxiety? Your psychiatry license should be revoked…oh wait.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Allergies. All of a sudden things I used to be mildly allergic to cause immediate hives/swelling. I can no longer drink any alcohol because my face balloons and I end up in the ER. I’m also suddenly allergic to a bunch of foods I used to eat frequently.

Allergist said any intense virus can cause it, but they are seeing it fairly often from Covid.

I now take 6 allergy pills a day, run air purifiers in every room of the house, and try not to go outside if it hasn’t rained recently.

Sounds more like anxiety. Have you tried an SSRI?

You think someone’s face balloons to that size because of anxiety? Your psychiatry license should be revoked…oh wait.

You believe everything you read on Dcum? Particularly in the health forum?

[Anonymous]

Anonymous wrote:Tinnitus with moderate hearing loss in one ear and mild in the other. I will probably be getting hearing aids if it doesn't improve.

Tinnitus can be a side effect of covid and covid vaccines.