Long Covid Information and Therapies

[KSera]

I lost this thread and had this recent publication in Nature I had wanted to share recently. Thanks for bumping. 
 

Long COVID: major findings, mechanisms and recommendations

[Acadie]

20 minutes ago, KSera said:

I lost this thread and had this recent publication in Nature I had wanted to share recently. Thanks for bumping. 
 

Long COVID: major findings, mechanisms and recommendations

This is an excellent paper, and a huge service to families, clinicians and other researchers trying to understand LC (rather than sweep it under the rug like the CDC and Biden administration).

Immune impacts are the first topic in their discussion of research on Long Covid mechanisms--that's clearly intentional. Some immune impacts may resolve in a few months, at least in some people, but in several of these studies, immune dysfunction remains unresolved for a significant number of people at the end of the study.  

There is a chart with potential treatments and supporting evidence, which is helpful to see. But with no approved treatments, reducing transmission to prevent Long Covid is essential.

[Acadie]

Magnesium L-Threonate	Mag Mind  48 mg	1 capsule daily  (48 mg)	Crosses blood- brain barrier	Supports brain health, reduces anxiety & inflam
Magnesium Citrate	Pure Encapsulations 150 mg	1-3 capsules as needed	Before bed	Eases constipation & aids sleep
Iron	Simply Heme 20 mg	1 capsule every other day	Okay with food, ferritin goal ~150	Oxygenation, energy, healing
Nattokinase Serrapeptase	Solaray 3,000 FU Natto 60K Serra	1 capsule 2xday morning & night	On empty stomach	Dissolves microclots, trad food in Japan
D3 + K2	Inwell  5,000 IU D3 180 mcg K2	1 capsule/day to correct deficiency or if sick, 3 capsules per week after	Best absorbed with fatty meal	Immunity & bone health
Probiotic	Klaire Ther- Biotic Metabolic  25 Billion CFU	1 capsule daily, or several times a week	Store in fridge, ice pack for travel	Supports gut & emotional hlth, this brand decr histamine
Omega 3 Fatty Acids	Nutritional Fundamentals High EPA SAP 1,000 mg EPA	2 capsules/day Can take both at once or separately	Store in fridge, best absorbed with fatty meal	Heals nerves, blood vessels & heart, immune support
Luteolin	Neuroprotek	1 softgel 2xday (half the usual dose)	For 3-6 months	Heals nerves, decr histamine & inflammation
GABA & L-Theanine	Beverage			Switch off nerve pain, anxiety
Zinc & Copper	Solaray 50 mg zinc 2 mg copper	1 capsule/day	For 3-6 months, take w/food if stomach hurts	Immunity & lots of other stuff!
Multivitamin, antioxidant & detox combo	Mitocore	1 capsule 2xday (half the usual dose)	Combo reduces number of supplements	Incl methyl B12, heal & support cell health
Niacin (fast-acting)	Niacin or NADH+	300 mg once or twice a day	May cause facial flushing	Mitochondrial support, energy
Melatonin	Natrol 5 mg	5 mg before bed for sleep/if sick	Antiviral effect at 5 mg dose	Supports sleep and immunity

[Acadie]

Above is dd's list of supplements to try this semester, after meeting with her Integrative Medicine doc. She's started all of it except niacin. Melatonin she only takes when she's having trouble with insomnia, but would also take it in case of reinfection due to the antiviral effect at 5 mg dose. Instead of an l-theanine supplement, she elected to get a case of a fun sports drink that contains it. 

This is not medical advice for anyone else, and it's important to note none of these are prescription meds anyway, just supplements. 

Her levels for vitamin D, zinc and copper, and omega 3 fatty acids were all on the low end of normal, so her doc suggested doses to address deficiency. I definitely wouldn't supplement zinc or copper in large doses without testing your levels, but her doctor did say they are generally seeing low D, zinc and omega 3s in Long Covid patients, so those values might be good for folks with LC to get tested. 

I made the chart partly to help her sort out dosing, but also to note what purpose each supplement is intended to serve. It looks like a lot, but once she got her dosing routine down it's just a matter of filing up her supplement container once a week. She started one a time and at a low dose when possible, to make sure she didn't have any negative side effects. 

She has lots of ups and downs but is on a slow improving trend. She's had 7 respiratory infections in the last 10 months, and a couple of them lasted for over 3 weeks (PCR neg for Covid both). Those were her low points in terms of LC symptoms, so avoiding reinfection with Covid and other respiratory bugs is priority #1 for her recovery, it seems.  

Edited January 26, 2023 by Acadie

[KSera]

On 1/26/2023 at 9:54 AM, Acadie said:

I made the chart partly to help her sort out dosing, but also to note what purpose each supplement is intended to serve. It looks like a lot, but once she got her dosing routine down it's just a matter of filing up her supplement container once a week. She started one a time and at a low dose when possible, to make sure she didn't have any negative side effects

 

Edited February 1, 2023 by KSera
Details removed

[Acadie]

Just now, KSera said:

That's a great chart! I may borrow a couple things from it to try in place of the brands/forms we use for the things on there that we supplement. The goal of ferritin at 150! Mine is currently 8 😔. I'm interested to look at that probiotic, as one of my kids seems to get lots of symptoms of inflammation.

Oh my gosh, how are you feeling? Dd's ferritin was 16 when first checked, and she was absolutely exhausted all the time! She increased it to 99 with higher doses than listed above. So she's still trying to increase it, but at a slower pace. 150 is her goal as a female endurance athlete, so that is on the upper end of normal. Getting her ferritin up made the biggest difference in her fatigue. She still needs to pace herself but definitely saw massive improvements as her ferritin rose.

She used recommendations from The Iron Protocol group on FB: https://www.facebook.com/groups/theironprotocol

Their recommendations are based on hematology research that many primary care docs are unaware of. It's one of the things where the "normal range" according to many labs is actually way too low. Her value of 16 was above the lower limit of the normal range (15), but we learned that's actually severe deficiency, especially for a female endurance athlete. 

[KSera]

On 1/26/2023 at 10:08 AM, Acadie said:

Oh my gosh, how are you feeling?

 

Edited February 1, 2023 by KSera
Removed details

[BeachGal]

4 hours ago, kbutton said:

Like ultrasound, d-dimer, CT? I am really curious about this.

We have a lot of clotting risk in our family, and there are people who have had conditions (various kinds of GI perforations) that some literature suggests can be tied to microclotting (but don't have to be). 

The clots and embolisms caused by Covid are not like typical clots.

One problem is that they are difficult to test for or even see. However, recently, Resia Pretorius has been teaching other researchers, such as Akiko Iwasaki, how to image them so that should be helpful.

The clots are very resistant to breaking down and can persist. D-dimer measures broken particles of clots that are circulating in blood. The persistence is a problem.

Pretorius is using three anticoagulants which has helped some, however of those people some are seeing clots return. Researchers are working on different treatments, though.

[SoCal_Bear]

Any of the rest of you dealing with fragmented sleep? It's terrible. I recently started magnesium gylcinate and extended release 3 mg melatonin to deal with this. This is brutal. Waking up at 2 or 3 am for the day. Even if I can return to sleep with sleep meditations (sometimes) I can never stay asleep. It's like a short nap. Maybe sometimes if I am lucky, I can do that twice. I was always a night owl...and now I have to be so strict about sleep hygiene. No devices after 8 and lots of breathwork, meditation and wind down to quiet my nervous system.

[mathnerd]

2 minutes ago, calbear said:

Any of the rest of you dealing with fragmented sleep? It's terrible. I recently started magnesium gylcinate and extended release 3 mg melatonin to deal with this. This is brutal. Waking up at 2 or 3 am for the day. Even if I can return to sleep with sleep meditations (sometimes) I can never stay asleep. It's like a short nap. Maybe sometimes if I am lucky, I can do that twice. I was always a night owl...and now I have to be so strict about sleep hygiene. No devices after 8 and lots of breathwork, meditation and wind down to quiet my nervous system.

I have seen mentions on extended fasting forums about people with long covid getting relief doing longer fasts. It is not something that is easy for everyone to do, but it could be something that you could look into to see if it is an option for you. Sorry to hear that you are suffering so much from long Covid ☹️

[Harriet Vane]

7 hours ago, KSera said:

That's a great chart! I may borrow a couple things from it to try in place of the brands/forms we use for the things on there that we supplement. The goal of ferritin at 150! Mine is currently 8 😔. I'm interested to look at that probiotic, as one of my kids seems to get lots of symptoms of inflammation.

With ferritin that low, I wonder how you're able to stagger through your day. You must be exhausted. 

Are you aware of the high iron content in unsulphured molasses? When my ferritin was that low, I supplemented 125mg per day iron in pills, and I also drank 3T of molasses diluted in some lukewarm water (to make it easier to slam down quickly and not linger in the mouth) many days. 

[KSera]

1 hour ago, Harriet Vane said:

With ferritin that low, I wonder how you're able to stagger through your day. You must be exhausted. 

Are you aware of the high iron content in unsulphured molasses? When my ferritin was that low, I supplemented 125mg per day iron in pills, and I also drank 3T of molasses diluted in some lukewarm water (to make it easier to slam down quickly and not linger in the mouth) many days. 

You know, it honestly is good to hear other people say it's understandable I feel the way I do. This has been going on a long time now and I always feel like I'm being sluggish and lazy (because I am!) but it's somehow helpful to hear that it's understandable for me to feel that way.

I totally forgot about molasses. That's a really good idea. I will order some.

eta: is there a brand that's more palatable than others? Can I eat it in cookies? 😂

Edited January 27, 2023 by KSera

[Acadie]

4 hours ago, calbear said:

Any of the rest of you dealing with fragmented sleep? It's terrible. I recently started magnesium gylcinate and extended release 3 mg melatonin to deal with this. This is brutal. Waking up at 2 or 3 am for the day. Even if I can return to sleep with sleep meditations (sometimes) I can never stay asleep. It's like a short nap. Maybe sometimes if I am lucky, I can do that twice. I was always a night owl...and now I have to be so strict about sleep hygiene. No devices after 8 and lots of breathwork, meditation and wind down to quiet my nervous system.

It is brutal, I'm so sorry. This was dd's reality for several months, and not being able to sleep or calm her nervous system was such an obstacle to healing. You're absolutely right to prioritize this. 

Different things work for different people, but dd was diagnosed with reactive airway disease when she got a second opinion with another pulmonologist. (The first one said her chest X-ray was normal and she'd feel fine a month, haha). The second night after she started a 3-month course on a steroid inhaler she suddenly was able to sleep, for the first time in months. She still has some nights with insomnia, but mostly she's sleeping well which has been a game-changer. 

She does do a lot of breath work, meditation and yoga and definitely feels like those things help, but the inhaler made an immediate and consistent difference. I mention this in case addressing breathing issues or another physiological issue might help you or someone else with sleep. 

Oh! For perimenopausal me, drinking a cup of tea in the evening with one holy basil and one fennel teabag helps me sleep through the night. Both herbs reduce histamine. Some LC folks take antihistamine medications like loratadine. My understanding is our histamine levels typically peak between 2-4 am, and in perimenopause and Long Covid histamine can be elevated and further exacerbate that normal peak, causing insomnia. Really hope you find something that works for you. 

I'm also intrigued by Nasalcrom nasal spray (there's a generic that's cheaper by Bausch and Lomb, too). Active ingredient is cromolyn sodium, a very old and generally safe drug, that reduces histamine and prevents mast cell degranulation. The nasal spray helps some folks with brain fog. Once dd settles in with her supplement routine I am going to suggest this to her.

[I talk to the trees]

44 minutes ago, KSera said:

You know, it honestly is good to hear other people say it's understandable I feel the way I do. This has been going on a long time now and I always feel like I'm being sluggish and lazy (because I am!) but it's somehow helpful to hear that it's understandable for me to feel that way.

I totally forgot about molasses. That's a really good idea. I will order some.

eta: is there a brand that's more palatable than others? Can I eat it in cookies? 😂

Here's my favorite iron supplement recipe: Combine equal parts tahini, cocoa powder, and molasses. Drizzle it over fresh fruit, spread it on toast, or just eat it with a spoon. It’s better than Nutella, imo, but I actually really like molasses. 

[Acadie]

1 hour ago, KSera said:

You know, it honestly is good to hear other people say it's understandable I feel the way I do. This has been going on a long time now and I always feel like I'm being sluggish and lazy (because I am!) but it's somehow helpful to hear that it's understandable for me to feel that way.

I totally forgot about molasses. That's a really good idea. I will order some.

eta: is there a brand that's more palatable than others? Can I eat it in cookies? 😂

Phew, I was worried my response might have felt discouraging! It's entirely understandable you'd feel winded and out of energy because your whole body needs more oxygen. 

Dd had side effects from several iron supplements and finally settled on the ones below. She did occasionally need to take magnesium citrate at bedtime to prevent constipation, but the supplements below were less constipating than others, and fewer other side effects too.

She gave up on trying to supplement vitamin C with iron--it caused issues and her levels came up without it. 

Ferrex 150, best absorbed on empty stomach, away from dairy in particular. Dd took it on waking up, and had breakfast an hour or two later. Ferrex did the heavy lifting when she needed to get her levels up quickly.  https://www.amazon.com/gp/product/B00UCFPPYY/ref=ppx_yo_dt_b_asin_title_o04_s00?ie=UTF8&psc=1

Iron Repair Simply Heme, can be taken with food, easy to take during day, a little expensive and might trigger symptoms in those with histamine issues. Dd was very sensitive to histamine when she was younger but has no trouble with this now: https://www.amazon.com/gp/product/B09N25B65N/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1

Ecological Formulas Lactoferrin--this is a form unavailable to microbes and worth a try if all other iron supplements are causing issues.

One other consideration--you can take iron every other day, which actually increases absorption. Taking a few times a week might really help over time if side effects of daily dosing are intolerable. Just depends on the impact.

Edited January 27, 2023 by Acadie

[Acadie]

14 minutes ago, I talk to the trees said:

Here's my favorite iron supplement recipe: Combine equal parts tahini, cocoa powder, and molasses. Drizzle it over fresh fruit, spread it on toast, or just eat it with a spoon. It’s better than Nutella, imo, but I actually really like molasses. 

This sounds so delicious!

[Harriet Vane]

1 hour ago, KSera said:

You know, it honestly is good to hear other people say it's understandable I feel the way I do. This has been going on a long time now and I always feel like I'm being sluggish and lazy (because I am!) but it's somehow helpful to hear that it's understandable for me to feel that way.

I totally forgot about molasses. That's a really good idea. I will order some.

eta: is there a brand that's more palatable than others? Can I eat it in cookies? 😂

I know exactly what you mean. I felt like such a lazy slob. Finding out how bad my iron was changed everything. When my numbers started improving, I was astounded at how much better I felt. Be prepared for a long, slow climb--it took me about eight months to inch into the low end of normal. But be encouraged--I felt better and better with each passing month, and I pray you will too. 

I didn't pay much attention to brand. I aimed for unsulphured. The only way to make it palatable for me was diluting in water as I mentioned--I could slam it down quicker, and it didn't coat my mouth. When I tried taking undiluted from a spoon, I felt as though my mouth was sticky with it aaaaallllll day, ugh. Sometimes I would follow up my molasses drink with a small portion of an astringent drink, like water with half a lemon squeezed in or even diluted apple cider. There was no particular health reason--just sometimes I was so glad to have my mouth feel and taste cleaner. 

[SoCal_Bear]

1 hour ago, Acadie said:

It is brutal, I'm so sorry. This was dd's reality for several months, and not being able to sleep or calm her nervous system was such an obstacle to healing. You're absolutely right to prioritize this. 

Different things work for different people, but dd was diagnosed with reactive airway disease when she got a second opinion with another pulmonologist. (The first one said her chest X-ray was normal and she'd feel fine a month, haha). The second night after she started a 3-month course on a steroid inhaler she suddenly was able to sleep, for the first time in months. She still has some nights with insomnia, but mostly she's sleeping well which has been a game-changer. 

She does do a lot of breath work, meditation and yoga and definitely feels like those things help, but the inhaler made an immediate and consistent difference. I mention this in case addressing breathing issues or another physiological issue might help you or someone else with sleep. 

Oh! For perimenopausal me, drinking a cup of tea in the evening with one holy basil and one fennel teabag helps me sleep through the night. Both herbs reduce histamine. Some LC folks take antihistamine medications like loratadine. My understanding is our histamine levels typically peak between 2-4 am, and in perimenopause and Long Covid histamine can be elevated and further exacerbate that normal peak, causing insomnia. Really hope you find something that works for you. 

I'm also intrigued by Nasalcrom nasal spray (there's a generic that's cheaper by Bausch and Lomb, too). Active ingredient is cromolyn sodium, a very old and generally safe drug, that reduces histamine and prevents mast cell degranulation. The nasal spray helps some folks with brain fog. Once dd settles in with her supplement routine I am going to suggest this to her.

@Acadie you gave me some ideas to pursue. I actually was on an asthma medication because I have viral-induced asthma. So Covid was no different in this regard. I weaned myself off at some point because I was breathing better but perhaps I did that too early and still needed to stay on that longer even though I don't appear to have shortness of breath. The guy I see every month does say that I'm not breathing properly, and my diaphragm keeps getting blocked because of long Covid. I do notice that post treatment I breathe a lot better. I suppose going back on to see it that changes anything isn't a big deal.

I was stuck with using benadryl as a last resort to deal with histamine levels because I don't tolerate any of the OTC antihistamine meds. They all cause side effects of drowsiness and depression in me. I finally stopped benadryl because I was concerned about staying on it too long. I am taking quercertin though to see if it is effective as an alternative antihistamine/anti inflammatory. Do look into NAC though for brain fog and fatigue. I don't have the guanfacine prescribed yet...but NAC also helps with lung function.

https://medicine.yale.edu/news-article/potential-new-treatment-for-brain-fog-in-long-covid-patients/

[Acadie]

23 minutes ago, calbear said:

 Do look into NAC though for brain fog and fatigue. I don't have the guanfacine prescribed yet...but NAC also helps with lung function.

https://medicine.yale.edu/news-article/potential-new-treatment-for-brain-fog-in-long-covid-patients/

Thank you, I will. Really interesting that NAC helps with lung function as well as brain fog and fatigue.

Would love to hear if you try guanfacine.

[PeterPan]

On 1/26/2023 at 12:54 PM, Acadie said:

She's had 7 respiratory infections

I finally gave up and went on a stupid expensive inhaler (Breo). LDN can modulate the immune system and might help with that too.

[PeterPan]

On 1/26/2023 at 11:13 PM, calbear said:

histamine levels

Did you try an h2 blocker? Post covid I find I need both a regular antihistamine and h2. Allegra is the least problematic regular.

On 1/26/2023 at 11:13 PM, calbear said:

The guy I see every month does say that I'm not breathing properly, and my diaphragm keeps getting blocked because of long Covid.

That's kind of a vague assertion. Maybe just get a peak flow meter and see. I had been on just turmeric before covid, only occasional inhaler use, and now I'm on Breo. 

[Acadie]

34 minutes ago, PeterPan said:

I finally gave up and went on a stupid expensive inhaler (Breo). LDN can modulate the immune system and might help with that too.

Thanks for mentioning the immune-modulating effects of LDN—will look into that.
 

She was on a steroid inhaler for three months which made a big difference in relieving post-viral reactive airways and, interestingly, insomnia. 
 

[SoCal_Bear]

1 hour ago, PeterPan said:

That's kind of a vague assertion. Maybe just get a peak flow meter and see. I had been on just turmeric before covid, only occasional inhaler use, and now I'm on Breo. 

I legitimately could tell the difference before and after the treatments that I could not fully take a deep breath even though I was fine with peak flow meter and O2 stats. No problem with holding breath or shortness of breath either. It was the weirdest thing, and this was multiple times.

Tried H2 blocker. Worst abdominal cramping ever. It was so bad. Apparently I don't handle Pepcid well at all. It lasted all day from after taking 2nd dose. 

 

 

Edited January 31, 2023 by calbear

[PeterPan]

18 hours ago, calbear said:

Tried H2 blocker.

There's some genetics that drives response to antihistamines. Given how atypical your responses are, that may be where the answer is.

18 hours ago, calbear said:

I could not fully take a deep breath even though I was fine with peak flow meter and O2 stats.

I have no doubt it's happening because I've been feeling something similar. It's not extreme but it's noticeable. But what is the actual explanation? Sometimes things work through the back door for a sort of side reason. It's like when I did craniosacral for my concussions. It helped but wasn't really solving the deeper problem. 

Have you looked into HBOT? It's another thing that helps some people get breakthroughs. You need to be able to tolerate/process that much oxygen and the oxidative stress. And have you had fresh thyroid labs? The vax and the bug were both murder for my thyroid. The med that the FDA now claims it never told us not to take is the bomb (for me) for getting that thyroid stuff to reverse. Thyroid can cause that can't get a deep breath feeling and I don't know why.

[kbutton]

On 1/31/2023 at 4:47 PM, PeterPan said:

That's kind of a vague assertion. 

Diaphragm dysfunction is a real thing. They diagnose it with sniff fluoroscopy, I believe. My son is at risk for it, according to a pulmonologist who sees people like him at Johns Hopkins (Enid Neptune).

It might've been this thread; I'm not sure, but I think I read somewhere that with long covid, microclotting can effect the diaphragm.

I hope you get answers, @calbear!