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

[Another Reader]

I hope that the referral is to a different neurologist at Stanford. The first one sounds horrible. Sending lots of love and light for a recovery.

Palo Alto Medical Foundation (PAMF) was, in my opinion, an adequate organization until they were purchased by Sutter Health. Sutter is Kaiser on steroids, at least based on my experience. The conclusion I have come to is all of your doctors need to be near and directly affiliated with a major research and teaching hospital such as Stanford if you want seamless, quality care.

 

[Dtail]

Add me to the list of people interested in your experience, AR.

Same here.

 

[jj]

Add me to the list of people interested in your experience, AR.

Me too (+ my best wishes)

 

[powerplay]

I am very much interested in hearing about your experiences.


Wishing you a full recovery from this nasty stuff.

 

[youbet]

The irony is that in Britain, very few people were tested. Diagnoses were presumptive. People are being treated based on symptoms, not on faulty tests. In this country, having a positive test, virus or antibody, determines how you are treated. A lot of people will suffer and die as a result.

Please help me understand further.......

What treatment(s) are you seeking that would be available if you tested positive for COVID-19 but you are being denied now because you don't test positive?

My knowledge of this subject is far, far less than yours. But I have noted from news reports here in the Chicago area that when testing resources were scarce, people with symptoms were assumed to have COVID-19 and were treated as such. Perhaps that has changed since testing has become widely available?

Thanks.

 

[Another Reader]

Please help me understand further.......

What treatment(s) are you seeking that would be available if you tested positive for COVID-19 but you are being denied now because you don't test positive?

My knowledge of this subject is far, far less than yours. But I have noted from news reports here in the Chicago area that when testing resources were scarce, people with symptoms were assumed to have COVID-19 and were treated as such. Perhaps that has changed since testing has become widely available?

Thanks.

Initially, people with severe symptoms were admitted to hospitals and treated. Nobody paid attention to the tests, because they were simply not available. Everyone with non-severe symptoms was sent home. When tests first became available, I remember an interview with an ICU doctor in the midst of the New York disaster. He told the interviewer that nobody had time to worry about tests, they were treating people as fast as they could get beds.

Now, there is a substantial population of people that had less severe cases of COVID but still have some form of disease. A large number of these have tested negative on either virus or antibody tests. Sometimes both. Because there is no "proof" they have COVID, they are treated by doctors like they have/had something else. They cannot join the post-COVID programs that places like Mt. Sinai offer. even though their symptoms are identical to people that got a positive virus test or a positive antibody test.

My situation, like many others, is we are still showing disease symptoms. It's possible we may still have some form of the virus. No one knows for sure. Some very sick people could possibly be eligible for things like convalescent plasma if they could be shown they still have the virus.

 

[beanctr88]

Last week I donated blood and as a part of that the blood service here tests for the Covid-19 Antibodies in your blood. Mine came back positive. I was in New York for a week right before they shut everything down in March. Was all over Manhattan, subways, multiple Broadway shows, stores, restaurants and a Rangers game. About a week later I had headaches worse than I’ve ever had for about 3 days and a fever for parts of two. Since it was a weekend, I just slept for about twelve hours each night. No other symptoms. Never missed any work. Our work never shut down as we are an essential business.

I assume I had it then and didn’t realize that’s what it was. I hate to think I went to work sick and could have exposed a bunch of people. Nobody at my work has tested positive and about 30% have been tested in order to go on certain job sites.

I haven’t even had the sniffles since then. My wife also had the same but our college kids had nothing I’m aware about. Would you have them tested for the antibodies? Does it matter at this point?

 

[caninelover]

AR, sorry to read this story. I can imagine it is beyond frustrating to be in your condition and be doubted. I am interested in reading about your experience as many others here have also indicated.

I wish you a full recovery and hope you are able to stay strong through this difficult time.

 

[youbet]

Initially, people with severe symptoms were admitted to hospitals and treated. Nobody paid attention to the tests, because they were simply not available. Everyone with non-severe symptoms was sent home. When tests first became available, I remember an interview with an ICU doctor in the midst of the New York disaster. He told the interviewer that nobody had time to worry about tests, they were treating people as fast as they could get beds.

Now, there is a substantial population of people that had less severe cases of COVID but still have some form of disease. A large number of these have tested negative on either virus or antibody tests. Sometimes both. Because there is no "proof" they have COVID, they are treated by doctors like they have/had something else. They cannot join the post-COVID programs that places like Mt. Sinai offer. even though their symptoms are identical to people that got a positive virus test or a positive antibody test.

My situation, like many others, is we are still showing disease symptoms. It's possible we may still have some form of the virus. No one knows for sure. Some very sick people could possibly be eligible for things like convalescent plasma if they could be shown they still have the virus.

OK, thanks. I think I get it.

Are the two main points:

1. COVID-19 consequences can be severe and long lasting so we should all, at any age and with or without comorbidity factors, work hard to prevent infection.

2. There are people who express extensive COVID-19 symptoms over long periods of time who do not test positive. They are generally denied certain treatments and benefits than those who do test positive might receive.

Is that it? Sorry if I seem to be trying to be excessively succinct with this but it helps me understand when things can be boiled down to the nitty-gritty.

What are your plans going forward?

 

[harllee]

OK, thanks. I think I get it.

Are the two main points:

1. COVID-19 consequences can be severe and long lasting so we should all, at any age and with or without comorbidity factors, work hard to prevent infection.

2. There are people who express extensive COVID-19 symptoms over long periods of time who do not test positive. They are generally denied certain treatments and benefits than those who do test positive might receive.

Is that it? Sorry if I seem to be trying to be excessively succinct with this but it helps me understand when things can be boiled down to the nitty-gritty.

What are your plans going forward?

I think AR has already told us his plans--he is trying to get better care and he is getting his estate plan together.

 

[Another Reader]

OK, thanks. I think I get it.

Are the two main points:

1. COVID-19 consequences can be severe and long lasting so we should all, at any age and with or without comorbidity factors, work hard to prevent infection.

2. There are people who express extensive COVID-19 symptoms over long periods of time who do not test positive. They are generally denied certain treatments and benefits than those who do test positive might receive.

Is that it? Sorry if I seem to be trying to be excessively succinct with this but it helps me understand when things can be boiled down to the nitty-gritty.

What are your plans going forward?

Correct on 1 and 2. Item 2 is why so many people have banded together in these groups. There are thousands of people caught in this nightmare.

My plans are to slog on, knocking on doors and pushing for help. Today I was finally able to order a B and T cell count, although I will have to pay for it. My PCP decided to refer me to the Stanford Infectious Disease department. I also saw a nurse practitioner today and we talked at length about the different presentations of COVID.

 

[FIREd_2015]

Palo Alto Medical Foundation (PAMF) was, in my opinion, an adequate organization until they were purchased by Sutter Health. Sutter is Kaiser on steroids, at least based on my experience. The conclusion I have come to is all of your doctors need to be near and directly affiliated with a major research and teaching hospital such as Stanford if you want seamless, quality care.

I'm also with PAMF and haven't been too impressed with them since Sutter took over. I read Sutter Health settled for $575 million for anti-competitive behavior in late 2019. I wonder if this has anything to do with the Hospitalist's attitude/behavior. I recently volunteered at a the Bay Area nursing home where a large number of patients were infected with COVID-19. I worked in the COVID-19 positive wing and was surprised to see some patients had no symptoms while others were bedridden. I think we're still a long ways from understanding this virus.

 

[Rianne]

I'm also with PAMF and haven't been too impressed with them since Sutter took over. I read Sutter Health settled for $575 million for anti-competitive behavior in late 2019. I wonder if this has anything to do with the Hospitalist's attitude/behavior. I recently volunteered at a the Bay Area nursing home where a large number of patients were infected with COVID-19. I worked in the COVID-19 positive wing and was surprised to see some patients had no symptoms while others were bedridden. I think we're still a long ways from understanding this virus.

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.

 

[Amethyst]

We know so little. For all anyone knows, AR could have had COVID-19, been weakened by it, and attacked by something else that the doctors haven't identified. My wish is for AR to be strong, keep pressing the medical community for answers.

 

[chris2008]

I am a silent but very interested reader here. Please let us know how it goes on and, most important, take good care of yourself!
Sending good wishes to you!

 

[Global Wizzo]

Thanks. Better and more realistic info that I usually see. Wish you could reach some of the idiots in Florida. The one that stands out was a young man on the news that said he was a Vegan and exercised. Not sure why he thinks that makes him immune.

Hope you beat this.

 

[catii]

I'm another silent reader, who happens to be in the crosshairs: mid-70s, past diabetic, & pneumonia twice a year, like clockwork. I taught martial arts until all the parks were locked-down, & have only been out of the house a few times since early March. I've lost 17 friends, since then, ranging from 22 to 79, which is scary as hell!

I thank AR for his candid posts, & they have definitely helped me. I wish him better health.

The one thing I can offer is https://connect.medrxiv.org/relate/content/181 This is the pre-publication source for everything related to COVID-19, updated hourly. It's extremely-heavy reading, & it helps to have a medical background, but if you want the very-latest information, in its unregurgitated form, this is the best source.

 

[mijoy]

I don't ever see why the acquisition of more information would/could ever hurt intelligent people.

Another Reader, I hope your recovery is complete and quick.

 

[Amethyst]

Equally bad, are the old ones who make a political brouhaha over the thought of wearing a little paper mask.

Thanks. Better and more realistic info that I usually see. Wish you could reach some of the idiots in Florida. The one that stands out was a young man on the news that said he was a Vegan and exercised. Not sure why he thinks that makes him immune.

Hope you beat this.

 

[harllee]

I'm another silent reader, who happens to be in the crosshairs: mid-70s, past diabetic, & pneumonia twice a year, like clockwork. I taught martial arts until all the parks were locked-down, & have only been out of the house a few times since early March. I've lost 17 friends, since then, ranging from 22 to 79, which is scary as hell!

I thank AR for his candid posts, & they have definitely helped me. I wish him better health.

The one thing I can offer is https://connect.medrxiv.org/relate/content/181 This is the pre-publication source for everything related to COVID-19, updated hourly. It's extremely-heavy reading, & it helps to have a medical background, but if you want the very-latest information, in its unregurgitated form, this is the best source.

Cattii so sorry about the deaths of your 17 friends. Did some/all of them die from Covid-19?

 

[troutnut1]

Thank you for posting this. I can’t say I have enjoyed it, but I think I need to hear it. Covid fatigue syndrome is starting to settle into my small community, and I’ve been getting a little complacent. It seems very strange how this is affecting my friends and friendships. People I previously thought of as very intelligent don’t seem that way anymore. It is terrifying to think that my survival may now be dependent upon all of these other people’s common sense.

I consider your story a positive influence. Kind of a booster shot for my common sense and desire to avoid this virus. Since there are no Trader Joes in Montana (and I still think there’s a big link there!) I’ve been feeling a little too safe and comfortable.

I’m lucky to live in a very small place where I can probably avoid it entirely if I don’t get sloppy. My great uncle says there are only two factors to consider in the spread of this virus:

1. How dense the population is

2. How dense the population is

Get well soon and thank you!

 

[REWahoo]

My great uncle says there are only two factors to consider in the spread of this virus:

1. How dense the population is

2. How dense the population is

Smart man.

 

[DeborahB]

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.

 

[Gearhead Jim]

^^^
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.

 

[Gearhead Jim]

...
I’m lucky to live in a very small place where I can probably avoid it entirely if I don’t get sloppy. My great uncle says there are only two factors to consider in the spread of this virus:

1. How dense the population is

2. How dense the population is

Get well soon and thank you!

A good point, there are two different types of density...