Pam C
4.6K posts
@anna_reise87030 It’s no where near as clear cut as the AI makes it sound. You cannot use VEGF to distinguish between the two conditions. Some studies found it was low in long term ME cases, others didn’t find it was low. Some pwME have high levels, and some pwLC have low levels.
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Interessant! Meiner war bei der letzten Messung Low, obwohl ME/CFS, Post VAC und Post Covid 🤔
x.com/danaherbert/st…
Dana Herbert@danaherbert
VEGF in Long Covid (high) vs ME/CFS (low):
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@Catinmyfamily Good luck! I’m sure I’ve mentioned it before but I was rx’d 60mg 3x daily & could never get to that dose because the side effects of the later in the day doses really bothered me. However, I had no trouble switching to ER 180mg taken once per day. I hope you see some improvement!
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@acrossthemersey You really need a sarcasm emoji. I’m afraid some won’t recognize it 😭
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Has anyone tested the Hantavirus patients for iPhone or iPad exposure? These devices are endemic to Argentina, so perhaps they were exposed to more blue light than usual. That may explain their symptoms, which we already know are the true cause of people developing LongCOVID.
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I was going through the list of Long Covid trials on clinical trials dot gov.
I’d like to have a word with the “eat walnuts” people and the “harnessing optimism” people
🥴🫠
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Just wanted to share something that was close to my late Mum's heart. Her garden.
I've been left with the task of trying to keep it nice since she died but I'm not in her league when it comes to this.
As well as the house to deal with, this is keeping me busy. Here's part of it:
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My #longcovid friends. Please listen to your body. I’ve had LC since 2021. All scans/labs clear until now. Yesterday I had a heart attack. No preexisting conditions. Arteries pristine, but troponin high & heart ultrasound showed a “sluggish” heart. My gut tells me it’s from LC.
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@jossyoursalad69 @Squijibo Ummm, I have long covid. Neurotypical as far as I know but I am an engineer so….
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Don’t get mad but I have a question.
Have you ever met a neurotypical person with LC and/or ME/CFS?
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@Naomi_D_Harvey @Heidi32262228 Agree. I have absolutely experience PESE but don’t believe I have ever experienced PEM.
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I can’t stress enough how bad this is.
“PEM” is being counted in Long Covid studies with a single question asking if you get worse symptoms after minor exertion.
That’s not what PEM is!!! So of all those people labelled with PEM many won’t actually have it.
ME/CFS Science@mecfsskeptic
@Naomi_D_Harvey @domsalisbury Thanks. The study they cite (Thaweethai et al. 2023) is from RECOVER and seems to have used a single question if I understood correctly. jamanetwork.com/journals/jama/…
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@wobbliestbear My yearly HR chart shows a range from 40-171. It’s just how my body works these days. I’m not aware of anything that helps, sadly.
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Anyone get a paradoxical swing with their PoTS into bradycardia? Had to be out yesterday. Today HR dipping into the 40s at rest. Normally it can dip low 50s after big exertion never been in the 40s awake. I think it's related to orthostatic stress. Is there anything that helps?
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Really needing all of the good vibes right now. David got his cytology results today and there are abnormal cells. I can even believe we're going through this again. My aunt is dying of cancer. My neighbor friend is dying of cancer. My soul cat just died of cancer. Now this.
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@acrossthemersey @Catinmyfamily Probably for the best. I have a complex medical history so any results I had may not have been beneficial for signaling effectiveness.
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Just checking in at NIH Recover to see what clinical trials have been fully enrolled to date. Apparently this is the best they can do.
- Online brain training
- Paxlovid
- IVIG
- Ivabradine
- Modafinil
- Melatonin
- Cardiopulmonary Rehab
- Pacing for PEM
trials.recovercovid.org/design
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@acrossthemersey @NotOstriching Here’s hoping the ivig one yields helpful info.
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@singingsox The shortness of breath I used to experience while doing dishes was unreal. Thankfully, mestinon really helped. Hope the propranolol helps you.
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So you’re telling me when a normal person does dishes they’re NOT tachycardic? And their heart rate doesn’t hit 120?
Fascinating
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@julie_bush Btdt and all it got me was mild pancreatitis and less money 🤷♀️
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i think everyone suffering from long covid and complex illness should try glp-3’s. in fact i think it’s the first thing you should try. start with a micro dose and titrate up until you start noticing effects
Warren Togami@wtogami
GLP-1 is a miracle. Since the beginning of LC I have been unable to exercise because exertion with damaged mitochondria causes multi-day neuro PEM crashes. GLP-1 normalized all my lipid metabolism, diabetes and liver markers. No change to my diet. I just eat less of everything.
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@GeauxGabrielle Vaccinated and used Paxlovid with both infections and still have long covid 😞
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@PammckC @AutonomicBrad77 That’s good. Mestinon midodrine and propranolol failed for me
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One of the best graphs I have seen showing fluctuations in Cerebral Blood Flow in Dysautonomia patients compared to Healthy patients. I have Long Covid and have the same fluctuations. #LongCovid #Dysautonomia #POTS #pwME #pwLC #EhlersDanlos #hEDS
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@Naomi_D_Harvey I truly hope this yields helpful tx for you so that you experience some meaningful recovery!
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Now, guess what I have too much of in my gut at baseline? TUDCA!!
So if I can lower just that one thing to a healthy level, it’s very possible I would feel a bit better.
But there’s a lot of other things I can target 🎯 so fingers crossed 🤞🏻 will be a long journey
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I’ve had some really insightful test results from a GI Map ordered for me by @CiaraGlenville at Positive Nutrition (she is my friend so yes, I’m biased but I strongly recommend her company).
I have full blown gut dysbiosis, with evidence of inflammation & bad gut permeability.
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@Catinmyfamily @HalfThePerson You are too kind. I wish I had a recipe I could share that would help but it just doesn’t work like that, sadly.
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@PammckC @HalfThePerson There are reasons why I always value your opinion! You are sensible and self aware.
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A woman posted she is mostly recovered from long covid. She seemed to attribute it in part to not identifying as sick.
Someone else responded to the post noting through his hard work/research he healed himself.
Luck is what these people had in common. That’s the key.
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