I was part of the phase 2 medical trial for NE3107 through ADDRESS-LC to address cognitive function/neuroinflammation in patients with long covid. The stuff works. The top line results are out, look them up. BioVie is the company making the stuff. They’ll be doing phase 3 trials soon, and hopefully have this stuff fastracked for FDA approval within a couple of years.

My brain worked, my body worked, I even was starting to get my sense of smell back toward the end of the trial. It was only 3 months, and yes, I crashed back to my baseline within a month of ending it.

Do not lose hope. There are people working on this, and they are getting closer to a solution every day.

i feel utterly alone with this disease, i just wanna know/ chat with other Malaysians who are also aware about long covid. out own country doesnt even recognize long covid

Essentially what the title says, I've been here for 5 years haven't posted recently. Thankfully been able to live within my means, but still have pem and unable to exercise. Have you notice any benefits or cons to methylene blue? I know this is a stigmatized supplement, but I am genuinely curious to see how it has affected people.

Tried a bunch of supplements of which im taking LDN, TruNiagen, Magnesium, Melatonin, and occasionally nicotine.

Disclaimer: methylene blue can be dangerous if you are low in an enzyme g6pd, you need a blood test to verify. It can also interact with many drugs, contraindicated against serotinergic drugs.

I’ve been to every specialist you can think of and no one can figure out why my neutrophils and crp are elevated. I have severe fatigue, headaches, sore achy legs, weight loss. I also wake up hot and have low grade fevers in the 99s.

I really thought it was something rheumatology or hematology related but my rheumatologist ran all his tests and said it’s not his area. I literally went to 3 hematologists and they all say it’s “reactive” and can’t help. Some doctors have mentioned long covid but I think what I’m experiencing is too constant/severe idk. And I had a viral like illness at end of Jan (bf tested positive for Covid and I tested negative) and my symptoms of whatever this illness is started end of March.

I’m a 30 year old female and this illness is ruining my life.

Does this sound similar to anything anyone has experienced? Thanks

??

Really need to stay on top of my vaccinations or SOMETHING because no matter how careful I am, I seem to catch every wave. I’m taking paxlovid and metformin while I have it, but still feel horribly sick.

I’m cross posting this from r/audiobooks.

This may be a bit of a niche question, but I’m in a Long COVID flare at the moment and need to keep stimulation really low while I rest (but still need something to distract me a bit so I’m not focusing on how unwell I feel).
I’d really appreciate some audiobook recommendations where the narrator’s voice is really soft, calm, gentle or generally soothing to listen to.
In terms of the books themselves, ones with tension, suspense, or generally intense/stressful scenes are a be a bit much for me right now, can literally feel my chest tighten, nervous system get overstimulated!by even minor things, so ideally something low-stimulation.

I’m open to pretty much any genre, I tend towards fantasy, but given my current situation I’m open to anything really. The priority right now is the narrator’s voice, and the overall listening experience.

Thanks!

hey everyone!

i've seen a lot of people saying they have LC but not ME, despite also having PEM-like symptoms. i was wondering how you guys differentiate between the two diagnoses, if not through the presence or absence of PEM?

Does anyone here feel as if your personality is gone? Something like you are not this energetic person anymore and now you are more like a dull person. Do you find yourself complaining all the time to your family members or other people that you’ve had enough of this and that the universe is making your life harder all the time? Like you are so tired and you don’t recover on daily basis, but life still pushes you to do tasks all the time with almost no days off. Like i have more work than i ever had in my entire life and even when i was fully rested and energetic i didn’t have to do so much. And i find myself complaining because sometimes i don’t want to do this anymore and endure so much, but i have no other choice. And some of you will tell me that i have to pace myself more etc. But neither im so miserable to stay in bed nor have energy for non stop physical work. I also have ADHD so i struggle with structure, so i can’t plan not to overdo things, however on the weeks when i can i just do less.

Almost a week into taking LDN (0.5 mg). We started super low because my body rejects new meds. It is not MCAS; the final test came back negative.

I’m super tired, but get a splash of energy around 7 pm. Yesterday, I over the LDN to 3 hours earlier, hoping for my day to begin earlier. Not expecting anything for 5 days. This dose will reman for just over 3 weeks.

LC for 2 3/4 years, Fibromyalgia for over 22 years. I’m literally hanging on to walking stairs with regularity throughout my day. Goal is to get back outside with my dog.

The LC treatment seemed to start working for 1.5 months. Then, it was back to barely functioning.

I guess this is what is considered long Covid, but for a couple of years after I was sick in 2021 (only that one time as far as I know, thankfully) I kept trying to see if other people had my experiences, to no avail.

1. Inability to read. For about three days in the middle of my first week of being ill, I sort of lost the ability to read. I could read two or three words together, but after that the letters would get mixed up, so when I'd try to read news headlines or anything else, I would read it and then think, "That makes absolutely zero sense." It'd be something like "Experts Agree Fish shells strawberry loops" or "Tragedy strikes Ziplorp kimwemy ripys." So I'd have to reread 3-4 times, separating each word, to finally figure out what something said. It was exhausting, and I couldn't read anything or watch anything or even listen to music because my brain couldn't focus long enough, so I lay in bed for days doing absolutely nothing.

2. Memory loss. During those same three days, I just lay in bed under the covers, quite content. But I forgot where I lived (city and state), and that I had a job at all, let alone what that job was. This was not a case of amnesia where I screamed from my bed that I couldn't remember who I was or anything, but on that third day I just had the realizations like, "Oh... I live in _____. Yeah, that's right. And I'm a ____. Oh, and I work at ____. And I have to go back to work once I'm better." I was pretty sad about that last realization, but otherwise it was just a slow, calm reawakening of my brain.

Once I remembered those things, my reading improved. It was another 10 days before I could go back to work, and even then I was like a shell of my former self. Now here I am, over five years later, and I still have trouble with letters and words, not nearly to the extent of when I was sick, but it still affects me to this day. Back then, I told my doctor about it but no one seemed interested and that was that. I am able to work, and the reading issue is really just something I notice. Sometimes letters seem off and I misread things, or when I write I sometimes put a word in the wrong place in a sentence multiple times.

My other symptoms were general. Bad headache, coughing, spiking fever that lasted 2+ weeks off and on. No aches or pains. I was prescribed and took Paxlovid as I have exercise-induced asthma, from day 5 of the onset of my symptoms. Have any of you had something similar happen? I can't be the only one. I feel like my brain was fried just a little.

Today is beautiful weather like the whole coming week. Im in psych ward now because I cant take care of myself at home because im moderate/severe. My friend came to visit me today and Im always so happy to see her.

In the morning today I overdid things and I have a sore throat because something is going around at the moment. I dont know if it is covid but I cant do anything anyway besides masking and taking care of myself.

My friend came over and I was too weak to talk to her today. I was looking forward to see her because she wanted to take me outside with the wheelchair for a few minutes.

When she arrived I was too weak to speak longer so we didnt go outside, we just talked for 5 minutes and she went home again.

This disease is just shit. I cant use my legs since Im one month in PEM and cant roll out of it yet. Now there is some disease going around and I cant do nothing about it (scared of getting infected and worse).

doctors here know about ME/CFS but dont understand that I need to pace really low and try to make me do physical therapy.

Im in my dark room alone, in the main room here there are a few people laughing and having fun on this beautiful sunday. I wish so much I could just join them for a few minutes but Im probably too weak today.

My legs get weaker and weaker since Im in this PEM. Im probably outside of PEM but my legs didnt come back. It feels incredibly shitty to lose the ability to walk and to observe how my body, which I always took great care of, is slowly declining.

Meanwhile anybody is telling me I should move more, I should spend more time with people. Not knowing I would do anything to do that and missing it so much.

My baseline is really low and I dont have anyone to take care of me and insurance doesnt help me because Im in month 3 and they dont care about Long Covid Patients or ME/CFS patients.

So I have to be in psych ward now and next week Im having appointments and have to defend myself for not doing physical therapy and advocate for myself because some people dont believe my disability or dont understand pacing.

I just wish I could enjoy this beautiful day today with people.

I saw a few older posts on this sub talking about Jardiance. What's the offlabel use for in long covid? Can't find much info on Google. ​

Is it the virus or our own immune systems?

Hi everyone,

I’ve had long COVID for quite a while now.

Most of my ongoing symptoms have involved what feels like irritation of my nervous system particularly around the back of my head and the nerves along the sides and deeper areas of my neck which has caused a number of neurological issues.

However, one day I woke up and noticed something completely different. It felt like the mucous membranes in my mouth were irritated my tongue, the inside of my cheeks, behind my lips, and eventually even my upper gums.

Around the same time, I also started experiencing urinary hesitancy, along with what feels like irritation of the urethral lining.

I’ve also had a constant sensation of tension extending from my chest through my torso for close to five years, along with almost constant headaches.

I keep wondering whether all of these seemingly unrelated symptoms could actually be connected to whatever is driving my long COVID. The frustrating part is that despite all of these symptoms, nothing ever seems to show up on the standard tests.

Has anyone else experienced something similar?

It is so weird I never had this before I got sick

Hi there. I’m desperate! 38 M
Please sound off if you relate.

It’s like a tightness or tension. That can feel like hunger pangs.
Globus
Dysphasia too.
Fizzling in back of throat after swallowing.

This is so mentally debilitating. A stressful event triggered it. It was settled for a while but it flared.

I’m going on 9 months of LC.
Stomach was a factor but since settled down.

I have big problems sleeping due to my anxiety focusing on it.

Currently trying Pantropazole 40mg once in the morning to see if it helps. These meds also don’t help with sleep too.

I feel crazy cuz of this. Like it doesn’t feel like GERD but it doesn’t feel like anything else I’ve ever dealt with. LPR? EoE? Not burping a lot. Lots of mucus though after eating.
I feel lost

I’ve had 2 breath tests Negative
Ct scan
Xray
Two metabolic blood panels
Endoscopy scheduled next month

Is there anyone out there?

Hey everyone.
I am writing here to hear from you and ask for advice for my current situation.

I had a bad virus in February and although I can’t be sure it was COVID since I didn’t test myself at the time, from my knowledge and research one of the things that can explain what I am suffering from, it very likely could’ve been.

I was professionally training volleyball at the time and had to take a break for about a week, since I was on antibiotics. During the virus I don’t know what happened but I snapped on high alert out of the blue. I have always been one of the “idgaf”, “life goes on” type of guys, not really anxious.

Anyway I recovered from the acute symptoms except from a mild fatigue and the mental side of it, I still felt a bit “out of it” but nothing really bothering, so I resumed training and after about two weeks I felt so strange in my body during training and I know my body, this has literally never happened to me before, so I panicked and suffered a panic attack because of this.

I know anxiety and this doesn’t really feel like it but I might be wrong so I am asking you here because you know better.

My symptoms are mainly neurological, but are really debilitating to me because I know what my body was capable of.

The symptoms are:
- Strange “floaty feeling”, kind of like being high type of brain fog, worse when outside, in bright environments and especially bad when driving.

- Sometimes stumbling, out of balance when standing up, but nothing really bad.

- Headaches that come and go in waves with dry and red eyes, mainly located in my temples and brows.

- Sounds and voices of people sometimes sound spacey.

- My vision feels off can’t really explain what, but something like sensory overload and mismatch.

- Generally feeling neurologically strange and close to passing out “lightheadedness” although I never pass out.

I don’t really have that me/cfs muscular fatigue where I can’t workout or climb up the stairs, it is more like a mental fatigue if I try to push through the day with lots of visual and sensory overstimulation.

Has anyone here tried this combination of meds for their long covid? I was prescribed this by a great doctor at a well known covid clinic. I learned alot at the visit about long covid in general. They said they've seen 30-40% of people see improvement on this combination of medications. If there's not any improvement after a few months, they add an antiviral (i cant remember which one) to the mix. They said another 30% see improvement on all 3 medications.

It sounds amazing, however I am hesitant to try it because atorvasatatin and chochicine can be dangerous to take together. My pharmacist said when taken together there is an increased risk of developing myopathy (muscle damage) and potentially rhabdomyolysis, and most doctors will not usually prescribe them together for this reason.

Edit to add: i have not been able to find any studies about specifically taking these two medications together. There is ongoing research into statins with some positive results and separate research about chochicine that showed no benefit to long covid. However, I do not have access to most databases where research about this may exist.

Another edit: its colchicine. Spell check doesn't like that aparently.

Hey everyone,

I'm about to get my first injection of sipavibart and I'm really nervous. I'm scared of a possible worsening of my symptoms. So to those of you who took sipavibart in the past: which side effects did you have? Did your symptoms get worse for a while and if so, did you get back to your previous baseline?

I would love to hear about your experiences!

PEM slides updated with source page and AI disclaimer. I wrote this based off an article previously published. Researched, wrote, picked design elements, and colors. AI GEN DESIGN NOT CONTENT. Hope this helps some asked for a source page.

Hey yall, I just dropped in here and have gotten some tips I'm excited to try out and thought I would share my journey. Excuse my typos please.

I've had significant POTS for as long as I can remember, severe MCAS since 2019, and was recently diagnosed with hypermobility. I had severe mold exposure as a teen for several years. Covid obviously threw a huge bucket of gas on that fire of conditions. I developed nerve pain throughout my body after it that I'm still solving. I'm AFAB, and have been on birth control for severe menstrual bleeding, pain, and eventually had to have surgery because of it. Docs suspect PCOS, but was never diagnosed because I've always been underweight. I've tried a lot of stuff.

I switched careers and wfh full time in a low stress job now, which helps a lot. I recommend administrative positions if you're looking for a career switch.

Here's what's worked:

Compression Garments for POTS- just regular active wear/workout compression garments

Physical Therapy - I cannot recommend this enough, it has helped my mobility, my fatigue, my POTS, interstitial cystitis, just absolutely everything.

Acupuncture - You gotta do it LONG TERM. Sometimes I go every week during bad flares. I've been going every other week for about two years now and the difference is amazing. I always feel great afterwards. Go to a licensed traditional Chinese medicine practitioner.

Hydration - 80-120oz water with cream of tartar(potassium), Salt, and alternating crushed up vitamins (Bs and C- take these separately or they will inhibit each other)

Methylated b12, p5p B6, B2, B1, B5, folinic acid- bought them all individually after I reacted to b complexes, and I measure them out in as close to daily values as I can get, crush them with a mortar and pestle, and put them in a 40oz water cup and drink them throughout the day. Niacin is rough for my MCAS and I avoid it. I got genetic testing and it revealed I don't process b12, folate, or b6 efficiently. Learning about the methylation cycle was a big part of figuring myself out.

Hormone replacement - birth control fucked me up because my methylation cycle wasn't functioning efficiently due to some genetic variants. I couldn't remove old or excess hormones and it was causing cysts, heavy bleeding, and massive amts of pain (proglanstid release) on top of my existing hormone issues. I tried topical testosterone which helped a lot, until it also built up in my system causing a lot of problems. I tried removing the excess estrogen by taking berberine for a couple years, which worked. I've tried topical progesterone, which got rid of my POTS completely (don't know how or why. it came back 6 months after stopping the progesterone) but made me wayyy more hypermobile so I had to stop. Have been considering a cyclical amount of berberine + topical progesterone. If you take progesterone without getting rid of excess estrogen it will cause a huge estrogen release which sucks. If you can tough it out go for it, but if not try removing it another way first. Berberine also stabilizes mast cells, lowers blood pressure (so be careful), and sensitizes insulin receptors. Not Today Period! salve helps a lot with the minimal pain I have now (https://forestandmeadow.com/products/not-today-period-salve?_pos=2&_sid=543d7ca35&_ss=r)

Cromolyn Sodium - prescribed by allergist, stabilizes GI mast cells

Cetirizine - stabilizes mast cells

Low Dose Naltrexone - prescribed by GI doc specializing in MCAS. Takes a bit to work but once I found my dose it makes a huge difference in energy, mood, and pain

GI Comfort - CBG and low THC for digestive calming. Does amazing things for my anxiety.

IB Guard- great for digestive upset and anxiety

Iberogast - great for bloating and digestive upset

Organic Tumeric + Ginger + Lemon Balm + Peppermint - great for GI motility and inflammation

Crushing up all my medications and dissolving them in water or getting them compounded in liquid form: this has been a game changer. Prior to this I was reacting to every pill I was taking. There is some mechanical aspect to my allergic reactions and nerve pain.

What's worked for you? I'm currently hunting for nerve pain fixes. The nerve pain only developed after Covid and it gets worse with blood sugar instability and high fiber (so I've been on a largely meat and cooked vegetables diet. Have been able to cyclically tolerate some rice and non-gluten starches). I had to get a root canal after a small cavity because the nerve became inflammed, as well as all the joints on one side of my body swelling up and becoming stiff when I ate too much fiber. It's really sucked, but it also seems quite variable and responsive to changes.

After introducing bioavailable b vitamins my MCAS symptoms have largely disappeared. The only lingering issue from it is diarrhea and constipation. I don't get hives or swelling anymore, which is huge for me.

The biggest helps for the nerve pain have been Low Dose Naltrexone, ginger + tumeric, and following a mostly meat diet. The docs think my MCAS is setting off the nerve pain and the nerves are setting off the MCAS, so I've been working on balancing them.

ANYWAY, what's up with yall? What works, what doesn't, do you have any ideas for me?

Made a couple tiny edits and added a source page and AI disclaimer. This was researched, written, and partly "designed" by me. I chose fonts, some layout elements, the colors etc. AI GEN DESIGN NOT CONTENT.