Long Covid Resources & Experiences

[Acadie]

It looks like dd19 has Long Covid, and I wanted to start a thread to gather resources and experiences in one place. Here are a few things we've learned--

--Rest, hydrate and rest some more if you have Covid, as long as you can. The 5-days-and-back-to-work BS is not only sending contagious people out into the community, but increases the chances of developing LC since people don't have time to recover. Covid isn't a cold and it isn't mild, even if symptoms seem mild. Think of recovery as a gradual process over weeks or months, not days, and do whatever you can to ease back in slowly to decrease chances of developing LC. If you have setbacks, pull back activity until you have a couple weeks without issues before increasing again. Easier said than done, but trying to prevent long term issues is worth doing whatever you can to go slowly.  

--Athletes and healthy young people can develop Long Covid, and active people may actually be at increased risk if they go back too soon to intense activity, whether that's sports, work or caregiving. Young athletes experiencing unusual heart rate spikes need to be pulled out of their sport and evaluated.

--Post-exertional malaise (PEM) is a typical Long Covid/CFS/ME symptom. It can be hard to correlate with the activity because debilitating fatigue can set in 24-72 hours after exertion. Don't push through because that makes things worse. Figure out your energy budget and try to stay within it for a couple weeks without setbacks before increasing activity. 

--Covid often tanks iron, vitamin D and other nutrients, so nourish your body after Covid infection. Check ferritin levels in athletes who have had Covid, even if they seem fine and their hematocrit and hemoglobin look good. Dd19 has found that lots of XC teammates are dealing with anemia or iron deficiency without anemia this summer. Endurance athletes, female athletes and runners are most at risk because, in addition to the demands of any endurance sport, hemolysis occurs with each footfall when we run.

--Crazy hydration with electrolytes, lots of salt, iron supplementation, short yoga sessions and melatonin for sleep issues are helping dd19. We have a lot more to learn but she's seen clear patterns with these things already. 

--There's evidence that LC/ME/CFS compromise lymphatic drainage, and this actually may contribute to some of the neuro symptoms like headache, brain fog and fatigue because the brain isn't draining waste products properly. Hydration, electrolytes, and moving large joints help with lymph drainage. Think gentle, very short sessions of swimming, biking or yoga, as tolerated. The idea is not to workout, just to move your body and large joints on the days you're able, as long as it's not causing any issues. It's taken some trial and error, but dd has realized that while she just needs rest on really hard days, most days she feels better with limited, low intensity activity that moves her large joints. This balance will be different for everyone, but resting without moving your body for extended periods can create its own problems since blood circulation and lymphatic drainage are essential for healing. And because the lymphatic system is passive (no heart muscle to pump lymph along!) hydration and moving large joints are really important. 

 

 

[Ali in OR]

Thanks for this post. It's making me very thankful that if I had to get Covid, I got it over the summer when I could take time to take it easy (I'm a high school teacher). Because we were trying to keep my disabled dd safe, I stayed quarantined in the master bedroom until I tested positive--11 days. Lots of napping. I agree with the gentle yoga--I probably started that about day 8 and it felt good to just move a bit (plus slower-than-usual walking on the treadmill). And even after breaking out of quarantine, I took advantage of the opportunity to take a daily nap. I would tell myself that I was being lazy, but I did it anyway. I didn't know if I was more recovering from the school year or recovering from Covid, but either way, taking it easy was the right call I think. Your post confirms that. I'll keep it in mind as I'm sure I'll have students facing this challenge again or for the first time this coming school year. Best wishes for a full recovery soon for your dd.

[BeachGal]

Ugh. I’m sorry your daughter has LC, Acadie.

Dr. Seheult’s Medcram YouTube videos on LC are very good, imo. His recent one on near infrared light reducing Covid spike protein is interesting. Might be worth checking out.

https://youtu.be/e6xj14QYsoc

 

[Katy]

If the problem is lymphatic drainage I wonder if a rebounder might help. 

Months ago on one of the Covid threads both me & someone else posted links to different studies that indicated long-covid is from the body never fully kicking the virus. The one I posted involved steroids, they were thinking it might be autoimmune. But the study showed otherwise. 

Also Dr Brook Goldner has had many people with long covid join her expensive rapid recovery program. She’s said 100% recovery in a matter of a few weeks. You can find all the information for free on YouTube, her Facebook group, and probably even here if you dig long enough. I posted it a few times. It’s basically using a high powered blender to get in as much nutrients as possible with a lot of leafy greens & plant omega 3’s in smoothies.

[Acadie]

On 8/20/2022 at 3:14 PM, Ali in OR said:

Thanks for this post. It's making me very thankful that if I had to get Covid, I got it over the summer when I could take time to take it easy (I'm a high school teacher). Because we were trying to keep my disabled dd safe, I stayed quarantined in the master bedroom until I tested positive--11 days. Lots of napping. I agree with the gentle yoga--I probably started that about day 8 and it felt good to just move a bit (plus slower-than-usual walking on the treadmill). And even after breaking out of quarantine, I took advantage of the opportunity to take a daily nap. I would tell myself that I was being lazy, but I did it anyway. I didn't know if I was more recovering from the school year or recovering from Covid, but either way, taking it easy was the right call I think. Your post confirms that. I'll keep it in mind as I'm sure I'll have students facing this challenge again or for the first time this coming school year. Best wishes for a full recovery soon for your dd.

I'm so glad to hear you were able to rest! It's really amazing that listening to our bodies and taking time to recover can feel like we're being lazy, when it's actually good self-care, and smart. It makes me mad that every time a politician gets Covid and the messaging is mild symptoms, working from home, back to the office in 5 days. How about stop working to focus on rest and recovery, and wait for 2 negative tests to return to work?  

[Acadie]

Thank you so much for these resources, @BeachGal and @Katy! Looking forward to checking them out this evening. 

[Faith-manor]

For our Dd who was not recovering well from covid, it was a matter of serious bed rest. I and other family members have been caring for our grandsons, taking care of their home, and keeping her down all summer. High nutrition density foods have been a focus plus sunshine, fresh air - often we stuck her in a chaise on the deck when the temperature and humidity level was comfortable - and just rest. She had had a high leafy green diet, anything high in vitamin c, and low inflammation producing protein sources. No sugar. Fruit yes, but no added sugars or sweeteners not even honey.

She has recently been released to begin light activities. We hope in a month that if our son in law can manage laundry and housework on the weekends, it will be okay for her to take care of the kids with life slowly getting back to normal. It has been 3 months. But, everyone in the family is committed to doing this again if she shows even the slightest hint of relapse.

One of her brothers was there on duty last week while dh and I took a much needed vacation. He took everyone to the lake and put her in an inner tube to float around for the evening. She loved it, and even sat on the beach and helped her oldest build a sand castle. He did a lot of the work, but did a little while her brother kept the 2 year old busy. The doctor is very pleased with her progress.

 

[iamonlyone]

Our dd27 has been diagnosed with long Covid. I would suggest keeping postural orthostatic tachycardia syndrome (POTS) on the radar and pushing for testing, if symptoms seem to indicate it. Google "Covid and POTS," and you will find information that Covid may trigger POTS in some people—this was the case for our daughter.

Also, there are some long-Covid clinics available now. There are none in our daughter's insurance network, but she is working with a cardiac rehab group.

[Brave Cat]

My 15 year old has suspected long COVID. She has found that her brain fog (which was moderate to severe and noticably, negatively affected her ability to learn spring semester) is helped by daily antihistamines. (She is taking Claritin). There were some published case studies about this as a possible treatment in Feb/March of this year, and even some speculation in November of 2021. I have seen articles saying it needs to be tested further, but don't know if that's happening yet. It is low risk/high reward for us, and while she says her brain still doesn't work like it used to, she feels her cognitive ability is much better when she takes the antihistamine regularly. Significant, purposeful rest this summer has also helped.  (She had covid in January). 

[Laura Corin]

It's worth investigating for specific Covid damage to particular organs. My brother has liver damage from Covid. His blood  work is now clear but a second specialist has ordered further scans due to concern about previous images. He had Covid - Delta probably - in November 2021.

[Ausmumof3]

https://www.doherty.edu.au/news-events/setting-it-straight/issue-118-persistence-of-sarscov2-long-covid-spectrum-immune-dysregulation
 

Cross-posted on the WuhAn thread - not information on what to do as such but information on what’s known about the mechanics behind it/current state of research.

[Ausmumof3]

https://www.cognitivefxusa.com/blog/mild-covid-linked-to-brain-damage
 

this looks interesting 

it might just be marketing disguised as science but you could try some of these techniques at home. The part with treatments they are trialling is a fair way down toward the end. 

Edited August 24, 2022 by Ausmumof3