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Acadie

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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
  8. 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.
  9. Yay, thank you! Really needed something to look forward to, and Montreal feels just right for now. Maybe Italy or Greece for our 30th...
  10. 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!
  11. 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!
  12. 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.
  13. 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.
  14. 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!
  15. What kind of notebook with moveable dividers do you like? Did not know these existed--very cool!
  16. 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.
  17. 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.
  18. 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!
  19. 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.
  20. 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.
  21. Long Covid, the lymphatic system and neurocognitive symptoms--this thread is really worth reading. Persuaded me to schedule craniosacral massage for dd. I remember Fauci referencing issues with drainage across the cribiform plate.
  22. Yes, that's her--she's amazing! I so appreciate the expertise she brings to creating patient surveys and compiling data. She also summarizes available research on safety profile, efficacy etc. Here she is on Twitter: https://twitter.com/organichemusic It is inspiring to see a groundswell of collaboration between people with LC, clinicians and researchers on Twitter and elsewhere. I've never seen such commitment to patient-lead research, drawing on the wisdom of people living with the illness to identify areas with potential promise and set priorities. Here's a thread on LC researchers, some of whom are involved in patient-lead research.
  23. Really promising research. Dd20 is taking nattokinase, a supplement with an enzyme that is found in a traditional fermented food in Japan, to break down clots. Hard to say exactly what’s helping but trending better for her has correlated with taking it. Will swing back later to link to a pharmacist on Twitter posting surveys on efficacy of various treatments and supplements in people with LC. Super interesting to see what people report as helpful, harmful or no change. Nattokinase does seem to be helping many people.
  24. I feel the same way--dd's symptoms don't fit into a single category. We need research on treatments, not a decade shifting people among different buckets. One starting point would be what we already know about ME/CFS and other illnesses with similar symptoms as LC. The research on endothelial and vascular damage in unmanaged diabetes, for example, might give leads for potential LC treatments, along with efficacy and safety.
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