[Could Yoga be bad for me?]

I'm sorry you're experiencing such pain. That sounds really rough.  

Starting a gentle yoga practice seems like a great idea and it stinks that your efforts aren't yielding the expected benefits. A glimmer of hope is your body is telling you something, and you're listening. 

I haven't had your experience exactly but will throw out a few ideas based on my family's health. 

Both pain and non-restorative sleep can be symptoms of ME/CFS, and 50-75% of people with Long Covid meet the diagnostic criteria for ME/CFS. Since finding some relief with sleep could help other things, my first thought is to line up several things to try for sleep and work your way through, assuming first try won't be magical fix. Give several days to a week for each to see if there's any benefit. For dd20 it was starting a steroid inhaler for post-Covid reactive airways, for me it's reducing histamine with holy basil and fennel tea in the evening and having guided meditation ready for my 3 am wakeup, for my sister it's a GABA Max supplement. 

While playing with night-time sleep, could non-sleep deep rest, mindfulness meditation or yoga nidra help at all during the day? Suzy Bolt's Long Covid FB group and programs have helped my dd20 so much. Suzy's FB group is free and has a really supportive and positive vibe. The leveled programs started at 0, which is simply logging into a class and resting in bed if needed, up to 3 with Pilates and light home weight training. The whole concept is to listen to what feels right for your body, and if that's moving up or down a level or two in a given week that's exactly what you need. It has really helped dd step away from the cultural imperative to constantly push ourselves and toward an ethic of listening to and caring for her body. She says she's never going back 🙂 

Addressing inflammation is another thought. (Forgive me if we've interacted on this in another thread--my brain is officially over capacity these days). A low histamine diet, probiotics that break down histamine, turmeric, holy basil and fennel all reduce histamine and inflammation. Some folks with LC sleep better if they take antihistamine meds. I wouldn't want to do that forever, but for a couple months to get some rest, sure. 

Last but not least breathing exercises like box breathing and others, several times a day, are helping lots of people with LC with sleep and feeling better generally. Dd was part of a Mayo Clinic study on breathing exercises and kept going after the study ended because it really helped. So simple but I keep hearing the same from others with LC and practitioners.

Sending all good energy that you find some relief, @stephanier.1765!

[Omicron anecdata?]

13 hours ago, wathe said:

*excluding immune-compromise

Thank you so much for this explanation of the data on Pax (or lack thereof). 

Any observations on patients with immune compromise receiving Paxlovid?

Dd has Long Covid, gets frequent respiratory infections, and her doctor recommends Pax for patients with LC who get reinfected. Thankfully dd hasn't had another bout yet but just wondering if you have any thoughts on Pax for people with immune compromise or LC based on what you're seeing clinically. 

[Long Covid Information and Therapies]

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. 
 

[Donate extra insulin? Any ideas?]

Thank you for doing this! 

[Omicron anecdata?]

Wow--in this study prevalence of Long Covid was 36% of George Washington University students & faculty who tested positive. Median age was 23, and median number of LC symptoms was 4. Authors note most had no underlying conditions (75.2%) and did not seek medical care when they tested positive (96.6%). 

The study spans the time before vaccines were required on campus, and after. Haven't had time to parse out what they say the difference in prevalence based on vaccination status.

Postacute Sequelae of SARS-CoV-2 in University Setting

https://wwwnc.cdc.gov/eid/article/29/3/22-1522_article

ETA: the prevalence does surprise me somewhat, but generally tracks with the fact that I keep hearing people describe post-Covid health issues that sound like a list of Long Covid symptoms to me, which they don't attribute to Long Covid. 

[Long Covid Information and Therapies]

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.

[Long Covid Information and Therapies]

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!

[Long Covid Information and Therapies]

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.

[Long Covid Information and Therapies]

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.

[Long Covid Information and Therapies]

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. 

[Long Covid Information and Therapies]

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.  

[Long Covid Information and Therapies]

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

[Long Covid Information and Therapies]

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.

[Ideas for 25th anniv in Montreal this summer?]

13 hours ago, Starr said:

You will have a great time whatever you decide to do. I've enjoyed a few day trips but don't remember names of restaurants to suggest.

Yay, thank you! Really needed something to look forward to, and Montreal feels just right for now. 

Maybe Italy or Greece for our 30th...

[Ideas for 25th anniv in Montreal this summer?]

Oh yum, I need to try the smoked meat! Biking around Old Montreal would be a great idea early in our visit, and you may have eased my festival fears 😂 Thanks so much! 

[Ideas for 25th anniv in Montreal this summer?]

Would love suggestions for anything—places to stay, things to do, great food. We won’t settle on dates until dd16s summer takes shape, but might try to avoid the big festivals for this first trip. 

We both love walking, biking, history, art and local food. Between us we have French Canadian and Irish ancestry from the area, so heritage stuff would be great. Dreaming and planning a trip like this is pure fun for me! 

[Is anyone else struggling with winter blahs and feeling it getting to you?]

23 hours ago, KungFuPanda said:

I JUST watched this yesterday.

 

Love this--I thought my climate required a lot of winter gear but at least I don't need a polar bear gun!

No really, these are great tips and sometimes when I'm struggling it does help to see how someone handles even more challenging circumstances. Candles, string lights, vitamin D, getting outside, prioritizing exercise and good nutrition--all simple but impactful. 

We left the Christmas candles in our living room windows when we took down the tree, and put the colorful string lights in the basement. The Advent wreath & candles on the table needed to go because the fresh greens were all dead, but I'm breaking out the candlesticks for dinner tonight, and going cross country skiing today (snow, finally!). 

Also love the idea of cocooning, hibernating, reading more, exploring what it means for me to live in season. Just saw my library hold on a relevant book came in--Wintering by Katherine May. Several friends have recommended it and the writing looks gorgeous. 

[Is anyone else struggling with winter blahs and feeling it getting to you?]

1 hour ago, Indigo Blue said:

I was looking at this one. I don’t know how it compares to others. You can get bigger ones on stands. I don’t know if this little one is just as good as those. 

 

https://www.amazon.com/dp/B08KFQBY43/?coliid=I2TUVN75PXQDF2&colid=ME3QPO9L7H58&psc=1&ref_=lv_ov_lig_dp_it

That's the one I have and I LOVE the timer, variable brightness & warmth. Its strength matches what research shows helps with SAD.

The only other thing I'd like is an overhead angle, which maximizes impact according to the research. Makes sense since we've evolved to respond to sun overhead. Sometimes I put my Happy Light on a box to shine down on me, but if I were buying a new one I'd probably look for a stand or angle to shine down. But I wouldn't want to trade too many of the features I love about my current light.

The detachable base does make it easier to pack. I still try to protect the rectangular light between firm books in my bag. 

[Is anyone else struggling with winter blahs and feeling it getting to you?]

18 minutes ago, Harriet Vane said:

I do actually find it helps. It hasn't raised my vitamin D levels, but it does charge up my brain. I find when I eat my breakfast with the Happy Light on, I'm most definitely more awake and more alert, more willing to move and to do stuff. 

Same. I know my Happy Light helps because I look forward to getting up and eating breakfast, checking my planner and journaling beside it. I joke with Dh that I'm going to the beach, because my body loves it that much in our cloudy winter clime. Without it I'd rather stay in bed all day. 

Also: this year is especially hard. Warmer winter temps mean less brightening snow, and more rain. And we're facing existential challenges with a young adult struggling w/Long Covid. It hurts that our societal response ranges from denial to not-caring about young people's long term health. 

Silver lining--the empathy, caring and inclusiveness of our younger generations. When they take the reins of power, this world is going to look very different. Bless them!

[Tell me about your paper planner/bujo/whatever you use]

On 1/1/2023 at 3:10 PM, Carrie12345 said:

Adding, I also keep a duplicate (different color) notebook for “Getting Things Done”. My notebooks come with movable dividers, so I have “actions”, “projects”, “someday/maybe” and random notes sections. I don’t follow the GTD method all that well, but this does give me a good place to store bigger things without getting too overwhelmed or discouraged. Unless I’m adding something to it, I really only give it a look once a week or so to pull actions into my plans.

What kind of notebook with moveable dividers do you like? Did not know these existed--very cool!

[fatigue and blood tests (thyroid, iron, cholesterol)]

How high was your ferritin? Dd has gotten an unbelievably wide range of recommended values from different labs, practitioners and experts in female endurance athletics. I think many women especially feel better with ferritin higher than some of the recommended ranges. 

[Tell me about your paper planner/bujo/whatever you use]

I like my Planner Pad, though it did take several tries to figure out how I like to use it. I'm a visual (and distractible) person and it helps me to have my project lists, daily to dos and schedules on one 2-page spread for the week. 

[What is your best international travel advice]

After I get through security, I fill my water bottle and drop in a Nuun hydration tab, then find a secluded spot to hydrate. Flying is super dehydrating so I feel better physically if I start the trip well-hydrated. 

Bring a few masks in different styles, both ear loop and head strap, because either one might get uncomfortable on a long flight. Include an N95 or equivalent high quality mask, even if you don't typically wear them. If someone nearby has a hacking cough you might be really happy to have it. Weirdly the straps of 2/3 dh's masks broke our first two days of travel, which had never happened before and he needs a large size, so pack extras.

So happy we did carry-on only to Dublin this summer! Other family members traveling separately had trouble with their checked luggage and we saw a bazillion bags sitting unattended at the airport. Not sure when you're traveling, but with all the delays and cancellations these days a carry-on gives you more flexibility. 

Practice packing early and try on your outfits, to make sure you like what you pack. I went a little too practical for Ireland--I wish I'd brought a pair of dress boots, in addition to sneakers and sandals, and some more glam options for the few nights we spent in the city. Decant toiletries into smaller containers for TSA and to save on space/weight. I have sensitive skin so I don't try new toiletries when I travel--just don't want a rash.

For flights to Europe or elsewhere with evening departure and morning arrival, I take melatonin and Benadryl after dinner on the plane and try to get some sleep. I'd rather arrive feeling semi-functional than watch movies, personally. I listen to guided meditations with earbuds and use a BCOZZY neck pillow from Amazon. It's a little pricey but the support is way better than others I've tried. It helps me sleep and provides support so I don't aggravate my neck injury from a car accident. 

Travel Fashion Girls on FB is a fun group for recs on travel clothes and shoes, and packing tips. 

Have a great trip!

[Long Covid Information and Therapies]

On 12/27/2022 at 2:43 PM, busymama7 said:

No side effects at all.   I think some people say it can keep them up at night or something but I take it twice a day and I don't feel anything.   I do still have symptoms although I was much better at 18 months out. Mostly what's left is neurological and possibly low ferritin / anemia we're still investigating that.

Dd had very low ferritin post Covid. My understanding is various iron levels can spike during the acute phase, then drop after. Getting her ferritin up made a huge difference for her but definitely didn’t resolve everything. 

[Hormonal Insomnia]

Sugar and/or alcohol in the evening definitely cause me to wake up more at night, alas!

I've been having good luck with a histamine-lowering herbal tea combo early evening. In one mug I put a bag of holy basil tea and one of fennel tea. I don't love the taste of holy basil tea alone, but for some reason the addition of fennel makes it appealing to me, and amplifies the histamine-lowering effect.

I can't remember all the interactions between hormones and histamine, but I do know high histamine can make PMS worse and plasma histamine peaks at night.

Something simple to try, anyway. 

ETA: I also do guided meditation if I can't get back to sleep after getting up to pee. I have Sleepphones that plug into my iPhone with an adaptor, keep my phone on airplane mode and play meditations I've downloaded.