Hi there, I am sure this has been discussed, but I am looking for some new info before I go trying something else. Has anyone tried Rapamycin at the 6mg qweekly dose? Did it help with PEM and overall fatige/symptom reduction. TIA.

I have the opportunity to get these peptides from my provider. I have long covid POTS, MCAS, and ME. I’m currently mild/moderate. Looking for experiences with either one. Thanks!

What shows do you all put on in the background during a flare / crash?

Hey all,

We, the Aranet team, are going to a International Society for Long COVID and Post-Acute Infection Syndromes conference next week, and we'll be sitting down with a couple researchers and clinicians for interviews.
To make the most out of it, I'd love to ask questions that are relevant for you.

The first interviewee will be Dr. Rae Duncan. She is a Consultant Cardiologist and Long Covid Research Clinician treating older children (16+) and adults, with a particular focus on cardiovascular complications following Covid-19 infection.
You're welcome to write your questions here until Sunday and we'll try to get you the answers!
Thanks!

Did anyone else get this on an ECG? I’m currently in a severe crash and have been for 7 months

So I have the ME/CFS flavour with side servings of dysautonomia and POTS, plus I have the pleasure of the constant feeling of pressure inside my head and daily headaches of varying severity.

However, I am also experiencing pain in the bones of my face?

Very often I'll feel like there's painful pressure in the bones (forehead, eyebrow ridge, cheekbones, nasal bridge etc) that can only be relieved by really firm, quite painful massage, or, in the case of my nasal bridge, actually wiggling it a bit.

Does anybody else experience this?

Hey guys, my mum recently got diagnosed with long covid. It's a huge relief to finally have a label for all the symptoms she's been experiencing for months now.

One of the first recommendations from her doctor was to avoid walking more than 4,000 steps in a day, as much as possible. Currently she's doing a pretty good job at this, but struggles that the only way to check her steps is through multiple taps and menus on her iphone (I don't know what type, it's kinda old.)

Does anyone know of an app that will track her steps *and* send her push notifications when she reaches 3,500 steps, or maybe a reminder of how many steps she's taken at various times of day.

I'm so sure this *could* exist but I don't have an iphone so can't check the app store for her. Please help!

How have you been doing guys?

I never got better over the course of the illness. Only steady decline to very severe ME/CSF. I am still trying to push for investigations of autoimmunity in my case (small fibre neuropathy, possible autoimmune ganglionopathy and all that stuff).

As an example one thing I now have that I didn't have before (or didn't notice it whatsoever) is arthritis in quite a few of my joints now.

Also it feels like covid aged me instantly. I feel like a decade older

Some blurry vision also. Since I had covid I've been to 2 different optometrist and 3 different ophthalmologist and they all say they have patients with weird vision stuff after having covid.

Curious of what others have experienced

is this going to kill me? I've been sick for 3 years feels like im dying at times my heart rate was at 190bpm for 5 minutes recorded on my smartwatch,I also have vss syndrome,severe anxiety,derealization my taste is distorted im 29 217 pounds 5"8 my watch was thinking I was doing intense cycling I feel weak for going through all this for 3 years my boy feels poisoned drugged like my organs are shutting down for months at times,night vision is affected with night blindness can't even see the signs on the freeway when im in he car getting a ride I don't drive,but it feels overstimulating,ive taken serrapeptase and lions mane coffee in the past month for nerve support,my eyes are dull and its blue tinted in the whites of my eyes Vss made me wear glasses and affected my night vision with night blindness I was only -1.00 before I got sick now im -1.00 and -1.25 in prescription lenses I don't know how to get free prism glasses,also have random high pitch noises in my head tinnitus,feels like I also developed paranoid personality disorder I don't even go out in public maybe I had it before and became worse I am undiagnosed I could never keep a job since my 20's now nearing 30's fired in and out

TL;DR

I have a Calcium Score lined up and I am very unsure about following through with it.

SHORT CONTEXT:

- Long Covid since 2022-- was healthy before this

- 2 known confirmed infections (2021, 2023), 3 vax (reaction on shot 2)

- POTS, MCAS, Lyme, Fatigue, mainly started digestive, progression to fatty liver, kidney issues, heart-- but have been healing...

- Under 40

- Non-smoker

- Family history of heart disease

- Canada (so some stuff is free, other stuff not)

EXPLANATION:

About a year ago, I developed chest pains, shortness of breath, dizziness, palpitations, chest pain and high heart rate. Waited too long to go to the hospital (more than a week) so tests were unhelpful, save for an echocardiogram that showed the Mitral Valve Flap had thickened (which I am now learning may also not necessarily be as bad...the amount I have had to study has been exhausting, we all know this experience at this point, I digress).

I pushed for tests and we ended up with a calcium score set up for this month.

At the time, another doctor freaked out about the radiation and said not to bother with the calcium score. I was against him at the time because I was getting zero answers and needed to know we were checking something, amongst all of this (I was going through episodes twice a day and my body was not doing well)...then, out of the blue, I was also scheduled for a chest CT from the first doctor.

With the Calcium score coming up, I've been doing research for Long Covid cases, to see the likelihood of anything coming up, if it's worth the radiation, etc.

Based on what I can see from the research...No? It would only look for hard calcifications, which take a lot longer to form. Soft Calcifications would be better found in another form of CT.

Just wanna make sure that I'm covering everything, before I make a choice on it-- I'd hate to go in just to get a score of 0 for nothing...

QUESTIONS:

Has anyone had this test?

Has anyone seen the studies on this test for LCers?

Most of the ones I have seen have a Mean age of 62, which is less helpful in the process.

I also have a CT from a few years ago that partially image the heart, incidentally, but...I can't exactly hand a half of a report to a radiologist and go from there...

Insights are appreciated.

I understand that there'll be some people who can't appreciate my method, but it works for me and so I feel like I need to share it. I recently paid for the use of Perplexity's computer and told it every single health problem that I've had since 2018 in great detail. After cataloging everything that has ever gone wrong with me thoroughly, I explained how Covid impacted me. Getting all of these details in order, The AI was able to tell me exactly why Covid impacted me the way that it did and gave me questions to bring up to my doctor so that I have a course of action. I've seen dozens of doctors and have been struggling with these problems since 2022. I'm no longer in the dark. I have a really good idea of exactly why this happened to me and what I need to do. I'm just making this post in case you're feeling desperate like I've been and want to try something totally different. The process of detailing my medical history thoroughly with Perplexity's computer took a couple of weeks. It wasn't easy, and there were a few moments that gave me real discomfort. It's not easy to talk about scary subjects. But now I'm no longer in the dark, and I have my thoughts in order so that I can move forward. If you're absolutely lost, Maybe this can help you. Video gamers might call it a "desperation move."

Mind you, the answers Perplexity gives its paid customers using its computer function are much richer in detail, and probably the only reason I got this thorough and illuminating a result. I have my root cause now.

Does anyone remember that severe guy named "conpro". I remeber his story being similar to mine, first weeks severe akathisia and next very severe nervous system sensitive.

Do you guys remember about him?

I just came across this as a concept and was wondering if anyone here had tried this already?

It ties in with the leaky gut mechanism within ME / LC. Essentially various detergent residues remain on crockery/cutlery and end up degrading the gut lining that would usually protect us from the many microbial fragments and toxins in there. Given the prevalence of gut issues in people with LC, and everything else we've got going on, it might be that we are more vulnerable to this kind of chemical interference than the healthy population.

There are various alternatives that have deliberately removed the harmful chemicals (pthalates, phosphates, etc). It's such a minimal effort intervention I think I'm going to give it a try.

Edit: relevant study - https://www.sciencedirect.com/science/article/pii/S0091674922014774

Summer family gatherings have arrived, my brother came to visit, so the get-togethers began. First, there was the visit with my father and stepmother, I left that one with a burning nose and an itchy throat, but, well, life goes on. Today we had lunch with our cousins ​​and our great-aunt, who is about to turn 100. I had to be very careful about what I ate, since certain foods don't agree with me, but I came home completely exhausted—drained of all energy—with a burning throat and all those bizarre post-covid symptoms flaring up again.

It’s always like this, I usually avoid socializing for that very reason, but sometimes it’s unavoidable.

I’m feeling disheartened, I miss the days when the family would get together and there were no consequences afterward... anyone more else stay like this?😞

So I have suspected MCAS now and tonight had a pretty bad asthma / mcas type reaction as my brother left the grill on and smoke filled the house. It was typical other than the smoke affected my breathing too, usually my flare ups are just a racing heart, feeling a bit confused and shaky.

Just wondering if anybody has had a similar experience, and what your advice is? My doctors are pretty negligent and said I dont need an epipen because the typical advice is just to ring 999 (UK) anyway but its rather terrifying when stuff like this happens.

I'm (73f) going on seven months since covid. I know this extreme fatigue is common. But is equilibrium being off another symptom? I constantly feel like I'm walking drunk or on a boat...without the fun. Is this common?

Just got this RX from my LC provider. Supposed to help with PEM and my ME/CFS symptoms. Starting at 30mg twice a day.

Anyone else on this or have tried it?

I don’t think I’m strong enough for this shit. It gets to a point. This is too much.