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I have COVID-19 and No, It's Not the Flu
Old 06-21-2020, 04:26 PM   #1
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I have COVID-19 and No, It's Not the Flu

I have been off the forums for a couple of months. The frantic nature of some of the postings was too much for me. Then I came down with COVID-19... I'm back now to give my perspective on COVID and to point people to more detailed, accurate information about this disease.

In the interests of full disclosure, I have had several negative PCR tests and one negative antibody test. How could I have COVID-19 if that's the case? As it turns out, that's not unusual. The virus test was developed for the pneumonia presentation of this disease. For the test to be positive, you must be shedding virus in the nasal-pharyngeal area sampled at the time the sample is tested. I never had pneumonia. I had many other common symptoms, however. The IgG antibody test requires you to produce antibodies in sufficient quantity to be detected. There is increasing evidence that many people are not doing that.

I belong to two very large on-line support groups, one on Facebook and one on Slack-Bodypolitic. The Slack group was started by Fiona Lowenstein, who wrote an op-ed in the New York Times back in April about her experiences with "long haul" COVID. There are around 5,500 members of that group. It skews towards an under 40 demographic. The Facebook group, Long Haul COVID-Fighters skews even younger, people in their 20's and 30's. Last I checked, around 3,500 members. Both groups are private, restricted to people that have or had COVID. For those here who think this is a disease of old and immuno-compromised people, you are flat out wrong.

Within those two support groups, there are many, many people that that had the symptoms but never tested positive on the PCR test or the antibody test. There are situations where spouses got the disease at the same time. One tested positive and the other did not.

An extreme case of this is a cancer patient that recently completed chemotherapy who was hospitalized in the ICU twice for COVID. Negative swab test both times, despite having high fevers and pneumonia. The doctors bronchoscoped the patient the second time, and found a nice pool of fluid in the lungs packed with the virus. The patient was treated with convalescent plasma and recovered. Four weeks out, no recurrence.

What I would like to do here, with the approval of the moderators, is to tell my story and to provide a different insight to the disease that what you see in the main stream media. This is not a "one and done" respiratory virus. This virus causes inflammation throughout the entire body, especially in endothelial tissue. That's why you see the reports of heart attacks, blood clots and strokes in COVID patients. It can also become long term in a significant percentage of patients, variously estimated at between 5 and 20 percent. No one is sure why, or how many cases still have the virus and how many are suffering from post-viral issues. I am still very sick (a long hauler) and the long term prospects are scary.

Thank you for reading this. If I'm breaking any rules or if this is inappropriate to discuss here, please let me know.
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Old 06-21-2020, 04:33 PM   #2
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Reader: My best wishes for your full recovery ASAP

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Old 06-21-2020, 04:41 PM   #3
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Looking forward to reading your first person account. Doubt the mods will have any issues with you sharing.

Out of curiosity - and if you donít mind sharing - is your blood type something other than O?
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Old 06-21-2020, 04:45 PM   #4
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Would love to hear your story !
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Old 06-21-2020, 04:47 PM   #5
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Interesting and will be following your story.

You quoted, that you are still sick, can you explain what you are experiencing from still being sick??
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Old 06-21-2020, 04:50 PM   #6
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Originally Posted by REWahoo View Post
Looking forward to reading your first person account. Doubt the mods will have any issues with you sharing.

Out of curiosity - and if you donít mind sharing - is your blood type something other than O?
I think I'm AB positive. Most studies you see are of the pneumonia cases that proceed predictably through hospitalization, treatment and outcome. What applies there does not necessarily apply to other presentations or disease courses.
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Old 06-21-2020, 05:18 PM   #7
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For those interested in "Long Haul" COVID, I will post some properly dressed links. Here is a sample.

First up is Paul Garner, Professor of Infectious Disease at the Liverpool School of Tropical Disease in England. He had COVID, was never tested, and still suffers symptoms. He has posted a couple of times in the British Medical Journal, but this interview in The Guardian summarizes his experience.

https://www.theguardian.com/world/20...sting-symptoms

A recent article from The Atlantic, profiling several long haulers.

https://www.theatlantic.com/health/a...months/612679/

A recent Vox article by Fiona Lowenstein, founder of the Slack/Body Politic support group. She interviews several long haul patients.

https://www.vox.com/platform/amp/202...g-term-effects

That's a start. You can search and find others.

Mt. Sinai hospital in New York is probably as on top of this as anyone is. They recently started a pioneer follow up support system for New York residents with post-COVID disease. National Jewish Health in Denver reportedly started a similar program. Mt. Sinai's original program is described here. It has evolved since then.

https://www.mountsinai.org/about/new...-covid-care-pr

Mt. Sinai is also working with both support groups to come up with some type of support for their members. They have already surveyed one group about symptoms.

The SLACK group also did a survey of symptoms among its' members in early May. Here is the executive summary.

https://drive.google.com/file/d/1EPU...kEiOagyUV/view

I hope this information is helpful in increasing your understanding of this disease. I hope to post more as time goes on.
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Old 06-21-2020, 05:21 PM   #8
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When did you catch Covid-19 and how do you think you were exposed?

Best wishes for your quick return to good health.

Thanks very much for sharing all this with us.
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Old 06-21-2020, 05:26 PM   #9
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Another reader, thank you for posting and I hope to learn more from you. I have been concerned for a while that we treat Covid 19 as a disease that you either die from or get totally well from ---not so! I have 3 younger friends that are similar to your situation--they are still sick after months. I look forward to learning more and I hope for improvement from you. Thank you so much for posting.
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Old 06-21-2020, 05:32 PM   #10
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First question people ask is how were you exposed? The answer is community spread. In mid-March, community spread was just beginning here. Not many cases on the County Health Department website. I stood in line at a Trader Joe's for about half an hour with about 100 other people. Seemed safe, no one was coughing or sneezing. Dumb, in retrospect. Three days later, I came down with the worst pink eye I ever had. No doctor available, so I tried treating it with antibiotics. Inflamed it more.

After that, I was appropriately masked everywhere I went. Skipped Costco. Ducked in and out of small stores topping off my quarantine stash. My last trip out was March 29. Meanwhile, that darned pink eye morphed into a full eye infection.

On April 21, I was standing on the front porch at about 2 PM. I was hit with the worst flu symptoms ever in less than a minute. I managed to get to bed before I collapsed. And so it began...
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Old 06-21-2020, 05:35 PM   #11
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I am very interested to hear your story. I hope this virus is behind you now.

When you were in line at Trader Joe's, were you outside or inside the store?
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Old 06-21-2020, 05:38 PM   #12
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Originally Posted by harllee View Post
Another reader, thank you for posting and I hope to learn more from you. I have been concerned for a while that we treat Covid 19 as a disease that you either die from or get totally well from ---not so! I have 3 younger friends that are similar to your situation--they are still sick after months. I look forward to learning more and I hope for improvement from you. Thank you so much for posting.
I encourage your younger friends to join the two support groups I mentioned. The groups are private and require you to answer some questions before you are admitted. What they read will probably be very helpful to them. It will also astonish them.
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Old 06-21-2020, 05:40 PM   #13
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I am very interested to hear your story. I hope this virus is behind you now.

When you were in line at Trader Joe's, were you outside or inside the store?
Inside. Only a few community spread cases reported on the County website. None reported in that area.

Unfortunately, I am still very sick.
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Old 06-21-2020, 05:43 PM   #14
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I encourage your younger friends to join the two support groups I mentioned. The groups are private and require you to answer some questions before you are admitted. What they read will probably be very helpful to them. It will also astonish them.
Thank you, I will send this info to them.
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Old 06-21-2020, 05:48 PM   #15
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First of all very sorry you have been or are ill.

As discussed as nauseum in several closed threads, we already know that COVID is not the Flu. What are you hoping comes from your sharing here? You talk about the "frantic" nature of some posters here causing you to break away and then talk about "mainstream media"

JMO but I feel this thread could be closed, what would we learn from reading here? Scare people?, those of us in at risks groups are taking every precaution possible. You are preaching to the choir not a bunch of rebellious social distancing rebels. No one ever said COVID only attacks old or compromised people.

Your links are pretty much naked links IMO. FB groups are everywhere, about everything, You obviously feel strongly here and that's between you and the mods.

I don't think you are going for fear mongering but it's borderline to me. I think it's fair to say every person that gets COVID will have a different story and no one know what their story will be...You have a professor of infectious diseases that was never tested and say he had COVID..gosh.

I hope that whatever illness you have, you come through the other end feeling fit and fine and as good as new. You mentioned wanting peoples feelings on your posts and these are mine. I fully respect any posters that feel differently then I do.
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Old 06-21-2020, 05:52 PM   #16
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If you are interested in personal observations of COVID-19 by a no holds barred, on the frontlines ID doctor, Dr. James Richardson of Midland Texas has made several posts on his personal Facebook page. Dr. Richardson was formerly a professor at Indiana University School of Medicine and was a practicing ID doctor in that area before moving to Texas. Of particular interest are his posts of May 4 and May 28. They were not privileged enough to get Remdesivir, and treated a lot of patients with hydroxychloroquine. Don't all go there at once, and remember, this is his personal FB page.
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Old 06-21-2020, 05:55 PM   #17
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ivinsfan, You don't have to read a thread if you aren't interested. I really want to read Another Reader's story.
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Old 06-21-2020, 05:55 PM   #18
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Originally Posted by ivinsfan View Post
First of all very sorry you have been or are ill.

As discussed as nauseum in several closed threads, we already know that COVID is not the Flu. What are you hoping comes from your sharing here? You talk about the "frantic" nature of some posters here causing you to break away and then talk about "mainstream media"

JMO but I feel this thread could be closed, what would we learn from reading here? Scare people?, those of us in at risks groups are taking every precaution possible. You are preaching to the choir not a bunch of rebellious social distancing rebels. No one ever said COVID only attacks old or compromised people.

Your links are pretty much naked links IMO. FB groups are everywhere, about everything, You obviously feel strongly here and that's between you and the mods.

I don't think you are going for fear mongering but it's borderline to me. I think it's fair to say every person that gets COVID will have a different story and no one know what their story will be...You have a professor of infectious diseases that was never tested and say he had COVID..gosh.

I hope that whatever illness you have, you come through the other end feeling fit and fine and as good as new. You mentioned wanting peoples feelings on your posts and these are mine. I fully respect any posters that feel differently then I do.
I'm sorry you feel that way. I want to present a personal perspective on this disease in hopes of helping people understand it. No one else on this forum has come forward.
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Old 06-21-2020, 05:59 PM   #19
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I hope you have a complete recovery. The thing is we never know when our time is up. A good friend of mine was diagnosed with cancer 40 days ago despite being very active and healthy. He won’t last more than a couple days. I have lost more friends and family to cancer than anything else. Wishing you the best.
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Old 06-21-2020, 06:08 PM   #20
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ivinsfan, You don't have to read a thread if you aren't interested. I really want to read Another Reader's story.
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..
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