I have COVID-19 and No, It's Not the Flu

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Gearhead Jim said:
^^^
I think Youbet was asking what different treatment(s) Another Reader would expect to get, if he tested positive.

Not at all to make light of his situation, but much of today's Covid treatment is merely supporting body function and keeping the patient as comfortable as possible, while waiting/hoping the body will heal itself. If they gave him yet another Covid test tomorrow, and he tested positive, what would they do differently?
I don't have a clue what would/should be done next, and many doctors wouldn't know either, but AR has extensive and direct experience that might inform us.
His answer might help someone else get a treatment they need.
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People with the "long haul" version of COVID are sick. Some are very sick, with multiple problems. A few of the more knowledgeable, progressive medical institutions have set up programs to treat COVID patients that are still sick. These are integrated programs with various doctors and support staff that provide fairly intensive, and more importantly, integrated treatment. Mt. Sinai in New York is one. I understand National Jewish Health in Denver is another. To get into these programs, you need the positive virus test as your admission ticket. Without that, you are out of luck.

Sadly, there is no program in California yet. Weak noises are being made at UCSF, but there is not a high enough number of cases yet to support such a program. Without such a program, treatment is spotty, and dependent on which doctor you see in each specialty. Some will blow off patients, because they haven't seen the disease personally or they don't believe the patient could really be sick. No coordination, which is what's needed here.
 
Rianne said:
I wonder, since we are a long way from understanding this virus, if the patients with no symptoms now, will have symptoms later? Some articles I've read hint at the possibility of it lingering in the system (hiding out) and can attack later. Also, more symptoms are emerging that have not been considered. Strokes and blood clots outside of the lungs makes me think it travels through the bloodstream. I used to think it attached and multiplied in a specific area like the lungs.
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One of the asymptomatic patients had already been in the facility for a couple of months and the other several weeks so my guess is they will not develop any symptoms.
 
ivinsfan said:
I know I don't need to read it. Let me ask, will you feel better or worse after you read it? I know a lot of us here are plenty worried already and this could be a scary rabbit hole. I can't imagine any of us would feel better about things after reading it...we also know that more then a few people have COVID and do absolutely fine so have to think about that too.

For myself I realized when I had to go into my local Menards in person for a emergency household fix and I could barely keep myself together because I was so anxious that reading stuff like this isn't helping me and wonder does it help anyone that feels anxiety about COVID..
Click to expand...

I'm sure there are people who feel the same as you. I remember having to go to the store for the first time after it struck Maui. I was scared. But I got over it. I wear masks, I wash my hands, and I use lots of sanitizer. But if it happens it happens. I can't be afraid every waking minute. And reading this kind of post helps me.
 
harllee said:
I think you are being unfair to the OP. He is a long time member of this Forum and I believe he is 100% truthful about his experience with the virus. I have read all the articles cited by the links he provides and I suggest you do the same if you want to be informed. I can understand why the OP does not want to share his specific symptoms on a public forum. See my post above for the continuing symptoms 3 of my friends have. Everyone needs to realize that this virus is causing long term disabilities in people--many of whom are young otherwise healthy people.
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I understand but you have to realize that when you make claims like this, the natural inclination is to get question.

So then I ask, what the purpose is. On one hand op says he/she wants to give their personal experience but they want to do it without giving personal experience:confused:
Why not just make a thread with the links?
 
bclover said:
I understand but you have to realize that when you make claims like this, the natural inclination is to get question.

So then I ask, what the purpose is. On one hand op says he/she wants to give their personal experience but they want to do it without giving personal experience:confused:
Why not just make a thread with the links?
Click to expand...

They did go on to share their personal experience details.
 
I do not know why the OP is being questioned on why he/she decided to post their story, but not knowing anyone personally that has been affected, I appreciate the OP's insights.
 
DeborahB said:
I just read through all the posts. I don’t intend to hijack this thread but I’ve had 4 years with chronic fatigue syndrome and see some parallels. Plus, in early March I was ill for 3 weeks with a fever. I’ve never been just “sick” that long. It was before there was talk of Covid with mild symptoms so I wasn’t tested. I ran a fever this weekend for a few days with some other symptoms. I’m getting tested tomorrow. No extreme symptoms.

What struck me was the intensity of AR’s onset of illness. MyCFS was like that. In the morning I was calling a gym about joining and suddenly, at 2 pm, I could barely walk. This lasted for the better part of a year and still plagues me today. I have it under control if I keep my stress way down and don’t try to do too much. I wonder if they will find connections between the many auto-immune disorders because of Covid.

Meanwhile I have been isolating in my house nearly all the time. Everything is delivered and I wear a mask when I’m in public. I’ve been to a store twice, since early March. My (now former) boyfriend came into the house a few times. My brother and his GF were around mostly outside, a few times. That’s it. I find the parallels odd, and post this in case it’s useful to someone.
Click to expand...

Some of the articles I've been reading on 'long haul Covid' have pointed this comparison out also. There is some research that leads to the concept that various virus attacks of an unknown nature are a cause of Chronic Fatigue Syndrome. We know so little about viruses. Perhaps Chronic Fatigue Syndrome is misnamed and should be renamed to something virus related.

I really appreciated AR's effort in telling their story and hope AR keeps posting. We all need to learn and appreciate what is actually happening.
 
OP, thanks for posting. I've done my best to read this entire thread to put together some specifics for you: a male in his 60's with a blood type of AB+ (probably). Do/did you have any of the known risk factors (overweight, diabetes, hypertension, etc)? The evidence seems to be pretty clear that hospitalizations are disproportionately those with risk factor(s) -- I am curious if that is holding true with the long-term/medium severity cases?
 
someguy said:
OP, thanks for posting. I've done my best to read this entire thread to put together some specifics for you: a male in his 60's with a blood type of AB+ (probably). Do/did you have any of the known risk factors (overweight, diabetes, hypertension, etc)? The evidence seems to be pretty clear that hospitalizations are disproportionately those with risk factor(s) -- I am curious if that is holding true with the long-term/medium severity cases?
Click to expand...

Most of the people in the support groups are in their 20's, 30's, and 40's. Most do not have high risk factors. They generally had mild to moderate cases. Most were not hospitalized. I think the list of high risk factors came about as part hypothesis and part observation and is applicable to what was observed in the pneumonia cases that entered the hospitals.
 
OP,

Best wishes to you. Hope you have a full recovery soon. Thank you very much for sharing. I think such first hand experience is helpful. I rather have more info than be ignorant.
 
It will be interesting to hear your prospective. What’s your age range to give us more context?
 
Status update - how are you doing? Are you seeing improvement, or still rotten?
 
harllee said:
AR--I would also like to know how you are doing. I think of you often.
Click to expand...

Thank you. Still here, but not improving. Seeing yet another doctor this afternoon. For those interested in the neurological side of COVID, here is a virtual presentation from Stanford with Dr. Koralnik of Northwestern, a well known expert in neurological aspects of infectious diseases.

 
Sorry to read of your troubles.

Your situation reinforces the notion that the practice of Medicine is very much an Art as opposed to a Science.

And, you have to be your own best advocate.

Good luck.
 
Thank you for sharing your journey. I hope you find the correct treatment plan soon. Wishing you good health.
 
Another Reader said:
Thank you. Still here, but not improving. Seeing yet another doctor this afternoon. For those interested in the neurological side of COVID, here is a virtual presentation from Stanford with Dr. Koralnik of Northwestern, a well known expert in neurological aspects of infectious diseases.

Click to expand...
I have 0 medical training but found this fascinating as the neurologist from NW Medical Center in Chicago (from Geneva, Switzerland) spoke slowly, slight accent. Starting @ 12 minutes through 35 minutes explained through various studies/papers, showing CT scans and neurological effects from Covid 19 in the brain and how strokes are occurring in younger people. I plan to listen to the rest later. Thanks for posting.
 
This week Long Haulers was a story on national news. Can't remember which one - only caught a little of it.
 
AR- I didn't see this thread until now. I hope you will recover soon. Thanks for sharing your personal experience. This post and the info you share is valuable to me and my family. Wishing you all the best, and please keep posting as much as you can.
 
audreyh1 said:
Was it one of these? I seen an NPR story in the list, but that is from a month ago.
https://www.google.com/search?q=long+haulers+covid&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari
Click to expand...

I should have said national TV newscast. I couldn't find the exact one I mentioned, but if you do some variations of this google search you'll see lots of stories. Variations might be adding a different TV network each time you search.

Example
covid long-haulers tv newscast

Example
covid long-haulers tv newscast ABC

About Mount Sinai
https://abc7ny.com/mount-sinai-covid-19-after-effects-symptoms-ed-hornick/6304985/

Mentions one of the online support groups
https://news.yahoo.com/long-haulers-message-extended-covid-111015305.html

Hope this helps.

(Not sure if links are showing up as clickable...)

 
Stories about and interviews of long haulers have been all over the news, especially in the last couple of weeks.

The public Facebook group, Survivor Corps, now has 72,000 members. It's a mixed bag because it's so large and it's public, but reading some of the detailed stories is helpful in understanding long haul COVID. The private support groups are much more focused, but they are private.

https://www.facebook.com/groups/COVID19survivorcorps/?epa=SEARCH_BOX&redirect=false

Ed Yong's Atlantic article was one of the first that was widely distributed.

https://www.theatlantic.com/health/...-coronavirus-longterm-symptoms-months/612679/

And one with a local focus in Florida.

https://cbs12.com/news/coronavirus/covid-long-haulers-describe-months-long-battle-with-virus

And in Arizona.

https://www.abc15.com/news/region-s...ory-after-being-sick-for-months-from-covid-19

Short piece on the Mt Sinai program.

https://abc7ny.com/mount-sinai-covid-19-after-effects-symptoms-ed-hornick/6304985/

If you have access to the Wall Street Journal (paywall). Chelsea Alionar is a moderator of one of the private Facebook support groups

https://www.wsj.com/articles/three-...e-still-ravaged-by-covids-fallout-11593612004

Most of the large media markets have stations that have run pieces on long haulers. Check your local stations.
 
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