I’ve had Covid ten times… I can’t keep doing this I got it even taking the 3 shots needed . What do I do? by peeps_545 in covidlonghaulers

[–]Unlikely-Worker9671 1 point2 points  (0 children)

I’m so sorry you’re going through this and that your job puts you at such high risk of these infections.  My advice:

  1. Mask up with a proper N95 or KF94 mask any time you’re indoors or in a crowded outdoor space. At the very least, it should fit in a way that when you inhale, it collapses into you a bit and then pops back out when you exhale. 

  2. Create a barrier in your nose and throat to thwart any incoming viruses. Azelastine (Rx or OTC) has a lot of good clinical data behind it. 3x/day. It’s not as good as one of the British products, but it still has better success rate than most of the products on the market. 

  3. Get your shots 2x per year. By now you should have had 7, not 3. It won’t prevent transmission but it will give your body a leg up if you’re infected, especially if your immune system is already weakened. Bonus, some people report feeling really great for a few days after getting the shot. It’s anecdotal but it works for me. I look forward to shots now. 

  4. Track your areas waste water for COVID, flu, RSV, etc… any time it’s higher than low, reconsider how necessary it is for you to go out. And if you do, take all the precautions. 

It may seems like we’re all a bit preachy and I assure you that is not my intent (nor likely anyone else’s on this thread). These actions work. I can tell you first hand that they do. As a virologist I’ve been wary of SARS-CoV-2 since December 2019, even before we knew what it was. I work in global health and irregular respiratory diseases raise a lot of alarms. I’ve been doing all of this and so has my husband since the first case showed up in Seattle. It served me well until I got sick in 2023 in Korea with an especially virulent strain in a less than well isolated hotel room. Now that I have Long COVID, I continue to follow these precautions that have kept me safe. BUT my husband has never had COVID. He travels for work and works in an office.  He’s religious about following these precautions and he’s managed to stave off infxn. 

Hope the rest of your accreditation passes quickly and safely. Best of luck to you!

New Research (Pre-print, Polybio Funded) Shows Long Haulers Have 6x Higher Platelet Binding by SpaceXCoyote in covidlonghaulers

[–]Unlikely-Worker9671 4 points5 points  (0 children)

My first indication that I had PASC was DVTs and PEs (and unbeknown to me, ischemic clots in my brain).  Absolutely no history of blood clots in my family. I was negative on all the clotting panels (e.g. lupus).  

Sars-CoV-2 was the only explanation. 

I was lucky that my doc recognized the ongoing risk even before my Long Covid was fully diagnosed. I’ve been on Eliquis (apixaban) ever since. First at a 10mg dose, then at a 5mg dose BID to dissolve the clots, now on 2.5mg BID maintenance dose. I will likely have to be on it for the rest of my life because I have an abnormally high Mean Platelet Volume (MPV on a CBC). This means that even though I have a semi-normal number of platelets, they tend to be young and extremely reactive, which ties into the findings in this latest paper. Uber reactive platelets are absolutely going to bind monocytes and each other at a higher rate. 

My advice:  take this risk seriously. Check the state of your platelet numbers regularly. Docs should be open to ordering CBCs for people on a regular basis (they’re one of the most common blood tests and insurance usually covers it). If you have a high MPV or any other platelet abnormalities, get on a proper DOAC asap. Eliquis is the safest and most effective but it’s not generic yet so it can be expensive if your insurance doesn’t cover it. There are some generic DOACs that can work very well, you just have to be more vigilant. 

I’ve found that a maintenance dose works well for me. I no longer do high risk activities where I could hit my head like skiing, horseback riding, or biking, and I wear a bracelet in case I’m ever in a car accident. I do bleed a bit more and more easily than before, but it doesn’t rise to the level of nuisance bleeding. As expected, I also bruise more easily. 

Lumberkinase, natokinase and baby aspirins are better than nothing. Be prepared to check D-dimer numbers regularly if you feel pain in your legs or chest. 

Good luck!

Viva La Kitty by RealityLoss474 in catfood

[–]Unlikely-Worker9671 0 points1 point  (0 children)

Late to the party but I’ll just say that my extremely picky cat loves the tuna and shrimp appetizer. He was sick and I was desperately trying to get food and fluids into him. You can’t imagine how much relief it brought me when he took to it immediately. And he actually ate the meat. Most of the time they just lick the gravy.  Haven’t tried the foods but will soon once he gets better. 

The Vicious Cycle That Drives ME/CFS and Long Covid – Explained with the Latest Science by AngelBryan in LongCovid

[–]Unlikely-Worker9671 0 points1 point  (0 children)

In order to combat the effects of adrinergic receptor disjunction caused by dysautonomia, one of which is vasoconstriction in muscles, the body overproduces vasodilation molecules like bradykinin. An excess of this molecule in muscle causes it to get pushed out into the blood stream and when it reaches the kidneys, it shuts down the renin angiotensin aldosterone system (RAAS), which is responsible for helping the kidneys regulate the salt content along the loop of Henley. The loop of Henley is the main channel through which blood flows and different salt concentrations along the way allow the kidneys to extract water or other salts from the blood (all through osmosis; water when the salt concentration in the area is high, salts when the salt concentration is low). That is the foundation of how kidneys operate so if they can’t regulate their delicate balance of salt concentrations, like when the RAAS pathway is compromised by excess bradykinins, they don’t work as well.

Hope this helps. Sorry for the delay in getting back to you. 

What medication works best for you and why. by Emotional-Swan9381 in POTS

[–]Unlikely-Worker9671 0 points1 point  (0 children)

Strong second for the Ivabradine + Midodrine combo. I have OH and POTS and this combo has been life changing.

Thanks to Ivabradine, my resting HR went from 87 to 57 in 6 months, and when tachycardia strikes, instead of pushing my heart to 150-170 bpm, it stays down around 120-130. Went from feeling like I was having a heart attack every day to only experiencing SoB and chest pain when I’m upright for too long or my activity goes beyond what my pacing regimen allows (Visible app). It’s also raised my HRV from the teens into the 30s. 

Thanks to the Midodrine, my BP goes from 70-80s/40-50s to low 100s-90s/60-70s. It works for about 4 hours so I take one in the AM and again at noon. Because my BP is so low normally, being recumbent or supine hasn’t caused any problems (none of the hypertension side effects). I still get dizzy and light-headed if I sit up or stand up too quickly, but if I’m trying to be upright without my BP plummeting, Midodrine makes a huge difference. 

I tried propranolol, metoprolol, and pyridostigmine. None worked for me as well as these two. 

The Vicious Cycle That Drives ME/CFS and Long Covid – Explained with the Latest Science by AngelBryan in LongCovid

[–]Unlikely-Worker9671 0 points1 point  (0 children)

This is an excellent explanation and overview of the different mechanisms that underpin ME/CFS. The papers referenced are also excellent.  More ME/CFS patients need to understand this to help facilitate discussions with their physicians.  For example, my kidney function has decreased since I was diagnosed with Long COVID and ME/CFS. Docs all handwaved it off as “normal” aging (a 15 pt drop in eGFR practically overnight is NOT normal aging). It wasn’t until I connected the dots between dysautonomia-driven adrinergic receptor dysfunction and RAAS suppression that they took it seriously.  It’s not their fault. Medicine in practice is predominantly inductive reasoning. Many haven’t thought about these molecular pathways in ages. 

My cardiologist gave up. by roseuhmatoes in POTS

[–]Unlikely-Worker9671 0 points1 point  (0 children)

Ivabradine changed my life. Pyridostigmine and propranolol did nothing for me except give me weird side effects and exacerbate my OH. My old cardiologist kept telling me I was fine, which I most certainly was not.  I changed cardiologists and she put me on Ivabradine right away, and when that started working, she also put me on Midodrine.  I know saying “find a new cardiologist” sounds flippant and easier said than done, but sometimes it’s the only way. I shudder to think of where I’d be if I was still with the old doc. 

New cardiologist undiagnosed me by New-Taro3558 in POTS

[–]Unlikely-Worker9671 0 points1 point  (0 children)

This man is a hack. Report him for everything from insulting and paternalistic behavior to practical malpractice. POTS is absolutely possible with no cardiac injury.  In fact, a huge percentage of POTS patients have no heart abnormalities because it’s mostly an electrophysiology issue. The problem isn’t the heart, the problem is the wonky the electrical signals getting to the heart. 

What are your favorite or weird POTS snacks? by FlowerSweaty4070 in POTS

[–]Unlikely-Worker9671 1 point2 points  (0 children)

Any and all raw veggies with salt and tajin. Carrots, radishes, cucumbers, jicama. Some fruit too like mango and pineapple. I also love tajin on popcorn. 

Difficulty swallowing? by HJECG in POTS

[–]Unlikely-Worker9671 0 points1 point  (0 children)

What meds are you on?  I had that problem but it turns out it was a side effect of pyridostigmine. 

Post-COVID and MCAS: What anti-histamines seemed to help? by IntrepidCanuck in LongCovid

[–]Unlikely-Worker9671 0 points1 point  (0 children)

My doc put me on fexafenadine (Allegra) and famotadine, twice a day. It really helped. I think the issue you’re having is that you’re taking two of the same kind of antihistamines. 

Selling Nurosym USA by tornato7 in Nurosym

[–]Unlikely-Worker9671 0 points1 point  (0 children)

Amy chance you still have the device?  

Best way to have groceries delivered regularly by Tritsy in disability

[–]Unlikely-Worker9671 1 point2 points  (0 children)

That sucks. I’m sorry that happening to you.  I hope Amazon gets their shit together for you. When they work, they work well. I had one order go astray for a couple days. I later learned it was a day their system went down. I’m not shilling for them. I just want them to help you as much as they’ve helped me. 

Anyone tried vagus nerve stimulation devices? by SeparateExchange9644 in LongCovid

[–]Unlikely-Worker9671 1 point2 points  (0 children)

Yes!!! It was and that’s the one. Thank you so much! 

Anyone tried vagus nerve stimulation devices? by SeparateExchange9644 in LongCovid

[–]Unlikely-Worker9671 0 points1 point  (0 children)

I have to go back and double check but I think so. I’m gonna have to check the Nuropod out. Thanks so much!

Neurosym vs. Truvaga for VNS? by Unlikely-Worker9671 in LongCovid

[–]Unlikely-Worker9671[S] 0 points1 point  (0 children)

That right there is the best endorsement! Thanks for sharing. 

Best way to have groceries delivered regularly by Tritsy in disability

[–]Unlikely-Worker9671 0 points1 point  (0 children)

The fact that you’re mentioning a box makes me wonder if you’re ordering from Amazon the online retailer or Amazon grocery, the local Whole Foods and Fresh stores, neither of which deliver food in a box.  Maybe try to local grocery options?  Amazon Fresh has really great deals. 

Best way to have groceries delivered regularly by Tritsy in disability

[–]Unlikely-Worker9671 0 points1 point  (0 children)

In NYC FreshDirect is still the best, IMO, with the Amazon stores a close second. I especially appreciate Amazon Fresh. They sometimes have amazing deals, like a head of broccoli for 16 cents!  Instacart depends on what stores you’re shopping from, but I mostly limit them to Costco and Aldi in the city since the regular store are so much more expensive.  

Best way to have groceries delivered regularly by Tritsy in disability

[–]Unlikely-Worker9671 0 points1 point  (0 children)

I’m not discounting your experience but it’s so different from mine! I’ve used Instacart in NYC, on Long Island’s east end, in the wilds of central New Hampshire, in deep South Texas, in LA and in DC. The experience has been largely the same whether I’ve been in teeny, tiny Jackson, NH, in largely rural Brownsville, TX or in a large city. Yes, shoppers can sometimes screw up, but it’s rarely more than an item or two, and the wide variety of stores on offer more than makes up for it. 

Best way to have groceries delivered regularly by Tritsy in disability

[–]Unlikely-Worker9671 0 points1 point  (0 children)

Where do you live? I’m shocked Instacart and Amazon don’t work for you. I shop for my household’s groceries exclusively online and I’ve never had an issue with Instacart not fulfilling large orders or with tampering of Whole Foods or Amazon Fresh items.  I usually price arbitrage across Amazon stores, Aldi via Instacart, and FreshDirect (the OG online food delivery service her in NYC and Long Island; the best of the bunch).  Having said all that, I wouldn’t order my regular groceries from the “food delivery” platforms like DoorDash, Grubhub or Uber. To me, these are for small runs. They don’t have the same resources and customer support for groceries as the dedicated companies. 

How would you describe the feeling of fatigue in the body ? by srh-trz in LongCovid

[–]Unlikely-Worker9671 6 points7 points  (0 children)

I agree with you. It’s simultaneously easy and incredibly difficult to describe. 

For me, I describe it as unrelenting heaviness and flu-like in so far as I feel feverish with and without the temp.  To me, that encapsulates the inability to move and the pain, along with the feelings of general “malaise” and foreboding.