Have you been cured of POST COVID?

Posted by mccoydj1 @mccoydj1, Sep 28, 2023

I would love to hear from folks that have been cured from Post COVID. What were your symptoms.... what things helped you improve? what things made it worse for you?

I ask because I am currently on a recovery journey - would love to understand what you've done

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

pat814 | @pat814 | Oct 12, 2023

In reply to @dloos "All of this is simply a nightmare. I have been on this road for over a..." + (show)

Is there a post Covid 19 clinic in your area. Not sure what your symptoms are, but don’t give up advocating for yourself. You know your body better than anyone else.

dloos | @dloos | Oct 12, 2023

In reply to @pat814 "Is there a post Covid 19 clinic in your area. Not sure what your symptoms are,..." + (show)

At some point you just lose energy to “advocate for yourself”. It’s all I’ve been doing for a year and a half.
I have an appointment with a group that has a long Covid protocol next week. I have waited months to get in. I’m seeing a PA, but perhaps will be taken more seriously.
I’ve run the gamet with other specialists, and treatments that didn’t help me.

janeaddams | @janeaddams | Oct 12, 2023

In reply to @dloos "All of this is simply a nightmare. I have been on this road for over a..." + (show)

dloos: I feel you... I've only been on this road since March, but it feels much longer My PCP doesn't know much (anything?) about Long Covid; she's prescribing tests (mostly cardio stuff) that lead to ... more tests. I'm on a waiting list for a LC clinic in Chicago... no openings until April 1, 2024. Hard to keep hope alive, and I'm trying. but the fatigue is depressing. I've learned that some people DO get better, so I'm trying to remain hopeful.

dloos | @dloos | Oct 12, 2023

In reply to @janeaddams "dloos: I feel you... I've only been on this road since March, but it feels much..." + (show)

Good luck with the LC clinic. I think it is our best hope to be heard and taken seriously.
I had a long wait too. My appointment is finally coming up next week.
Fingers crossed for all of us.

covidstinks2023 | @covidstinks2023 | Oct 13, 2023

Just wanted to update you. I have just gotten my 2nd infusion for Long Covid. I did react to this one as it was a little to strong for me and the integrative medicine doctor is very tuned into this. I am ultra sensitive to everything. I will say this. Since having had 2 IV infusions I have noticed the following:
1) I am not having to use my nebulizer at all now for asthma.....just my rescue inhaler.
2) I have not had bronchitis, new pneumonia or a sinus infection since this summer.
3) I am finding I do feel better especially in the mornings.
4) Allergies have been much better this fall.
5) I am not quite as fatigued as I use to be.
6) Reflux is better. He told me about Ginger chews by Prince of Peace on Amazon for breakthrough reflux pain. I am on Protonix 20 mg a day now and these are wonderful. I only eat 2 a day and they are delicious. They do have a little sugar in them.

God Bless you all and stay tuned.....

joanma | @joanma | Oct 13, 2023

If you can, get yourself to the Mayo Long Covid Clinic in Rochester. My insurance covered all but airfare and housing but it was worth it for many reasons (a) docs know the latest and they believe and confirm what we say, (b) they follow Mayo traditions of testing to tell you what you don’t have so you know heart and lungs, for example, have not been damaged by the virus (despite symptoms), (c) they lay out a program without big pharma drugs to treat symptoms (not caused) that can make things worse when the virus has over-sensitized our central nervous system into a constant flight-flight, and (d) advise on optional for natural supplements and diet. Program included consults with great physical therapy folks there who know how to work with folks with post-exertion problems or Covid induced POTS and followup via zoom with an online wellness coach who was both my cheerleader and the best in offering strategies and support when I was most discouraged. I am slowly getting stronger and recovery from crashes is shorter. It’s taken me 15 months and I still have a way to go to be all I was — a high performing professional (now retired) who could multi-task like the best of them. Slow and steady has become my mantra. I can actually see a light at the end of the most debilitating of tunnels. Also most helpful — Redinger’s book “Cured” and changing to a nutrition-dense diet. God bless, all who suffer. I never thought I’d get back to anything close to full health, but see that I can and will. ❤️

naturalblondeone | @naturalblondeone | Oct 13, 2023

In reply to @covidstinks2023 "Just wanted to update you. I have just gotten my 2nd infusion for Long Covid. I..." + (show)

Can you tell me what is in your infusions? Thank you.

covidstinks2023 | @covidstinks2023 | Oct 13, 2023

In reply to @naturalblondeone "Can you tell me what is in your infusions? Thank you." + (show)

Yes. The first one was Vitamin C, Zinc and Glutathione. The 2nd one was Vitamin C, Zinc, Glutathione & B Vitamins. Blessings....

bunzman | @bunzman | Oct 13, 2023

In reply to @iamawriter "Thanks for the detailed information. Was the overall diagnosis that you had Long Covid and were..." + (show)

@iamawriter

Thanks for the detailed information. Was the overall diagnosis that you had Long Covid and were all the symptoms in your diary attributed to Long Covid? Sorry, it wasn't clear. I'll go through them. 🙂 :
1) Lymphedema - directly attributed to LC? Great that you no longer have any swelling. Hooray!
2) What medication are you taking for OAB and will you be able/when will you be able to stop the medication without a return of the incontinence?
3) PT - Completely relate to that. Have been undergoing from 2021 when hospitalized and continuing.
4) Did you have a sleep study pre-Covid that indicated you didn't have it pre-Covid? Curious because I do not think I have sleep apnea but docs have another sleepy study scheduled in case it has manifested post Covid. I was prescribed Gabbapentin for sleep but it did nothing for me. Docs wrote another script for both sleep and nephropathy but I did not fill the script because of past experience with its lack of results for my issues.
5) I have another pulmonary function test and 6 minute walk test to schedule. Have been putting them off because of very, very, severe shortness of breath and extreme PEM that comes with taking the test. I do not have restrictive airway disease, but Covid caused severe lung damage including a collapsed lung. Still have opacification and will be asking for new scans to look for improvement. Docs have me scheduled for pulmonary rehab (exercises...ugh) to strengthen lungs. No specific treatment for the opacification recommended yet.
6) I have the severe aches and pains. They are specific to LC and likely due to inflammation but I have not had any tests with a diagnosis of inflammation . What tests did you undergo for the docs to diagnose the inflammation or did the docs just assume there was inflammation because of your symptoms? What med did they prescribe for the inflammation? Has it helped? How long do you have to stay on it until inflammation is "cured"?

Sorry, lots of questions, but since the docs are still learning about LC and don't have the answers, I'm trying to get as much information from my fellow survivors. Thanks!

I was prescribed massive amounts of Ibuprofen and Tylenol to address but did decided to stop taking the Ibuprofen because of the damage it can cause the liver. Covid caused enough damage to my organs.

Jump to this post

My doc said Tylenol was potentially more damaging to the liver than Ibuprofen?

bunzman | @bunzman | Oct 13, 2023

Believe statement on Omega 3 is too broad. Studies suggested a link between high levels of omega 3 to prostate cancer whereas others suggest improving outcomes of treatment for other cancers. One should consult their doctor...

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