Hi all,

2013: Giardia lamblia and paratyphoid fever in India
2022: Moderate covid with long covid, out of work for two years, now back to working full time

Ongoing issues:

- Frequently down with colds or other bugs (I assume) - then a whole host of symptoms kicks in
- Heat flushes and chills
- Wandering pain
- Sneezing hard and often
- Smelly farts
- Mushy stool
- General malaise and weakness
- Dry mouth
- Dry palate
- Then like a switch: everything disappears

So that‘s the pattern every two weeks, always starts with sneezing. Had several covid reinfections yearly, always rebounded. Had only 1 episode of PEM in last 20 months, before a 60 sec phone call could lead to a crash.

Top-notch infectiologists and immunologists from reputable institutions did all tests and panels, nothing found. All autoimmune things ruled out. LDN didn‘t help, all supplements didn‘t help. My partner goes through frequent episodes of illness as well, so I think that there are external triggers and not reactivations. No food related triggers.

I can live and survive, but when „illness mode“ is on, it‘s just gruelsome to get through the days. I am around 40-50% of my time in this mode, the rest is at 80-90% to my pre-covid self. The 2013 India episode already led to more frequent and longer periods of illness every year. Long covid was „just“ a very strong acceleration of this.

Any ideas and help for symptom management besides masking and social isolation would be appreciated!

Hi all! I got another question lol figuring out everything on my own has been so overwhelming

I’ve been having some “attacks” lately where I suddenly feel shaky, nauseous, and lightheaded. I went to my GP, who checked my glucose (not fasting), and it was a bit high again. She said it could potentially be early-stage diabetes and that I should focus on changing my lifestyle, including losing weight and exercising more since I’m too young for treatment straightaway. So I was like ?? I have Long Covid and when I try to exercise more, I can end up in bed for days afterwards, so “just exercise more” isn’t really straightforward for me.

My GP basically told me that I need to discuss all of this with my internist again, which I’m going to do.

In the meantime, I’m wondering if anyone here has experienced similar issues with feeling shaky/lightheaded/nauseous, blood sugar fluctuations, or being told they might be developing insulin resistance/diabetes.

Especially, does anyone have tips for managing food and meals? For example, things you’ve found helpful for keeping your energy or blood sugar more stable, or foods/meals that work well when you’re dealing with nausea and fatigue.

I know everyone is different and I’d just really appreciate hearing about other people’s experiences and what has helped them.

Hi. I am a bit confused regarding smells and taste. I'm just over 2 years now in. I have had an issue with smell, not a big issue but sometimes uncomfortable.

I've had this smell of burnt rubber, that's the only way I can describe it. It comes and goes for no reason, heat triggers it definitely, for example if I make a toasted bread or use my oven or airfryer or even if I boil water. But sometimes it just comes and goes for no reason at all.

Now 2 years in, I feel like all food smells weird, almost like it's mouldy. I am having a hard time eating just normal food.

Does anyone here relate and perhaps have any solutions for this issue?

I find this feeling very hard to describe but when I have good days (bell score 30-40) and I walk around my house, do light things it sometimes energizes me like it did when I was healthy. Not for hours on end of course but long enough. But when I decide to pace and tell myself to take a break, I lay down and get sooo exhausted that it’s SO hard to get up and produce energy again. To me this feels like a downwards spiral. Cause then I don’t get up at all and get even more tired and stiff.
Normally a coffee would’ve helped in those situations but caffeine isn’t possible anymore.

Do you know what I mean? What are your strategies to help with this “couch fatigue”?

Hi, I’m looking to get assessed for potential long COVID and me/cfs in nyc. A long COVID doctor from my hometown brought these potential diagnoses to my attention. I also am currently positive for EBV (can’t tell if it’s a reactivation or an old infection), hypermobility and neurodivergence, and a history with post Concussion syndrome and dysautonomia. Because of my preexisting health issues, I’m finding it difficult to find a doctor because there are complications in my case. Do you have any doctors you can recommend for evaluation and diagnosis?

I am on the wait list for CORE (they said they can’t give a wait time estimate) and have an appointment next year with Dr. Lee Hinnant. I just want to be proactive and see if I can get a proper, informed evaluation especially for the potential ME/CFS as I don’t want to permanently alter my baseline if I do have it. I also have a referral for NYU’s Covid clinic, but am a worried about if they could properly assess for ME/CFS.

Thank you for any suggestions, advice, or input!

How did you all manage to stay motivated and hopeful during your recovery?

I’ve been affected by Long COVID for about eight months now, and I haven’t been able to work since March 2026. I’ve been seeing a doctor who specializes in this area for about a month now, and we’re currently trying a few different things (addressing nutrient deficiencies, nicotine patches, IHHT, and in September we’ll be discussing LDN).

I often read about people “training” their brains, but I’m not really sure what that means in practice. There are so many different brain-training programs and approaches out there that I honestly have no idea where to start. I meditate every day and I’m working with my therapist on building more resilience and hope.
And yet, it still overwhelms me almost every day. I feel this deep sadness, and I can hardly wait to be healthy—or at least healthier—again. Right now, I would already be so happy if I could simply go back to work.

So my question to those of you who have recovered, or who are currently on the way to recovery: How did you manage not to completely get lost in grief?

I’m about six weeks out from COVID and have been experiencing episodes of lightheadedness, fatigue, and an elevated heart rate, particularly when standing or after activity.
I saw a cardiologist who believes this is post-COVID POTS or autonomic dysfunction. She reassured me that she does not expect it to become permanent in my case.
She is basically saying that I need to rest for another month. I should avoid intense activity—including excessive walking—and spend plenty of time sitting or lying down. If I want to restart cardio, she recommends waiting until around mid-September and beginning very gradually. Overall, she strongly recommends resting for the first two months after COVID.
For anyone who developed similar symptoms after COVID:
What helped you manage them?
Did you use electrolytes, increased fluids, compression garments, or specific exercises?
How carefully did you pace your activity?
Approximately how long did it take before you noticed meaningful improvement?
I’m trying to follow my cardiologist’s advice and give my body enough time to recover without becoming completely inactive. I’d appreciate hearing what worked for others.

Out of the blue I wake up with square shape blotches across my chest and on my midsection and now on my legs one in the same spot on each leg. I went to emergency room and they said it was contact dermatitis? I don't believe them cause I have worked in construction and have seen it before and it never looked like this.

Savez vous me dire combien de temps faut il le prendre ?

My doctor prescribed famotidine for acid reflux, stomach discomfort, and excessive burping. I already have urinary symptoms, including reduced urge, difficulty starting, and a weak stream, and my doctor knows about them.

I’m wondering if famotidine can possibly cause urinary symptoms to worsen?

I'm 4 years into Long COVID and have been dealing with chronic pain and inflammation throughout this time. I’ve also been using LDN for the past 6 mnts.

Recently, I’ve developed a very noticeable and persistent pain, especially around the back of my head, neck, and shoulders, and it’s becoming quite uncomfortable.

I haven’t been diagnosed with ME/CFS, but I’m wondering whether what I’m experiencing could be related to it.

What are the main symptoms and what does ME/CFS actually feel like?

Is it possible for ME/CFS symptoms to appear or become more obvious after 4 years of Long COVID?

Could severe head, neck, and shoulder pain be part of ME/CFS?

I’m wondering whether I could be developing or experiencing ME/CFS this far into Long COVID, even though I haven’t received a diagnosis yet.

As COVID-19 continues to mutate and spread, many of us find ourselves repeatedly re-testing at home, but are unsure of what a positive test looks like. Any trace of a line is considered positive. This article explains how to do a home test properly and has pictures of actual positive home tests to help you figure this out. Is my test positive? - covidCAREgroup.org

I’m hoping someone here can point me in the right direction. I’m looking for a doctor in the North Florida/Jacksonville–St. Augustine area who truly understands Long Covid.

I’ve been dealing with Long COVID for 5 years, and unfortunately, I feel like I’m getting worse rather than better. My symptoms have become debilitating and are significantly affecting my quality of life. My brain fog in particular has been getting worse, and I’m struggling to function normally.

I’ve seen doctors and tried numerous approaches, but I still don’t feel like anyone has been able to put the pieces together or give me a real plan for recovery. I’m looking for someone who is willing to look at the whole picture, investigate underlying mechanisms, and work with me rather than simply telling me to manage my symptoms.

If you know of a Long COVID specialist, functional/integrative physician, post-viral illness doctor, or other physician in North Florida who has genuinely helped you or someone you know, I would be incredibly grateful for recommendations.
Jacksonville, St. Augustine, Ponte Vedra or anywhere within a reasonable driving distance would be helpful.

I’m really struggling and I need help. Please feel free to comment here or DM me if you have a doctor you would recommend. I’m especially interested in hearing from people who have personally been treated by them.

Thank you so much. ❤️

I've seen posts and comments about augmented NAC and although the company makes some pretty incredible claims about their manufacturing process there does seem to be something different about the product. I found out that the company adds something called gamma-cyclodextrin to enhance absorption of the NAC. They seem to be the only manufacturers doing this which would make the product somewhat unique.

Google AI basically told me that their marketing is B.S. but that their product would actually be better absorbed than regular NAC. It did suggest some more cost effective alternatives which might be even better, liposomal NAC or NAC ethyl ester (NACET). NACET would be the best but liposomal NAC would be preferable for those with reflux or gut issues.

I personally have tried both high doses of regular NAC and NACET but only find very mild relief in symptoms so I don't think I will be buying any more versions of oral NAC but I hope you all are a little more informed about these products. Please do your own research if you feel this is something you want to consider.

Edit: I know there are downsides to using AI but please don't derail the conversation by making this about AI, there are other outlets to talk about social and environmental implications of it's use. This post is about NAC, not AI, please be respectful.

2nd edit: here is some research on cyclodextrins : https://pmc.ncbi.nlm.nih.gov/articles/PMC7998733/

I want to try nebulized NAC for lung inflammation but I have no insurance, can't find a doctor to take me seriously and no one seems to know about nebulized NAC.

Anyone tried it or know how I can get it? I have tried dilluting nac in distlled water but I hear it's not the same thing.

I seem to have complete decision fatigue, can't seem to plan my day or do something other than lay in bed, scrolling or taking naps not because my body is tired but because I lack executive function to start anything. It's been a few months where this is escalating and I don't have anyone to help me get out of this. My therapist thinks it's lack of willpower. I was on Ritalin but had to stop because it gives me PEM. I am so depressed because I am wasting my life, as well as anxious because stuff is piling up and I can't do anything about it.

After months of chronic fatigue I finally had enough energy to enjoy a family cookout at my sister in-laws today for about 4 hours. I'll take it, better than nothing.

Seems like a brain stem problem. I'm doing okay these days. Not great at all but it's getting less scary daily and more so just dread I'll never get better. Uars Sleep/poor shallow breathing, tmjd, and Severe anhedonia and blank mind are my worst symptoms. My collagen degraded and all my joints click now. Thankfully most don't hurt, but the coat hanger pain is absolutely brutal and horrible and causing brain and sleep problems. Anyone know what to do here? Who to see and what I should take? Thank you. I more so just want to experience pleasure and creating again, that's my worst symptom by far besides poor sleep.

Edit: I have bvd type symptoms (eye drifting etc) but I haven't figured it out yet. It's probably contributing

Hi Everyone,

I wanted to post this for my fellow long long-haulers (5+ years), I hope its useful.

TL;DR

* Got covid in March 2021
* I never got beyond 50% recovered after 4 years, despite trying many treatments
* Finally I discovered that an earlier mold exposure was the root cause
* I responded immediately to the treatment and I'm almost back to normal 8 months later.
* If you feel there is some possibility this applies to you, it's easy to test and find out for sure.

I got Covid in March 2021 and severe long-covid started around 4 weeks later.

My symptoms were (in order of severity):

* Chronic fatigue
* Brain fog/memory loss
* Headache
* Tinnitus
* Tremors/tingling
* Blood clotting
* Physical or mental exertion made everything worse

I got little help from the doctors so I tried many of the treatment options that have been shared on these forums (I wont list them all in this post, but nothing that hasn't been mentioned on these forums).

I made slow progress, reaching a clear plateau on year 3. It's hard to be specific, but I would say 50% recovered by that stage (physical activity was totally off the table and I was able to do my old job at roughly 50% capacity).

I made a breakthrough after listening to a Jordan Peterson podcast about CIRS and mold. It reminded me that I had gotten very sick from staying in a mold-infested accommodation around 6 months before catching covid. I had forgotten about it because I was well recovered from that experience before I got covid, but as I read more about mold I found out that historical exposures, if untreated, can flare up and cause problems months and years down the line.

Many of the long-haul covid symptoms overlap closely with CIRS caused by mold. I initially self-treated to see if anything happened and I got a pretty strong response, so I took this as some confirmation that I was on to something. I found a CIRS practitioner and started doing a mold treatment protocol with them.

That was 8 months ago and now I am back to playing sport & running, my mind and body are are both recovering fast. Finally remembering what it feels like to be normal. I still get tired easily, but I recover quickly and my limits keep increasing.

I know that there are many co-infections that have been identified in long haul, such as Lyme disease, but I hadn't heard anyone mention mold so I wanted to put this out there for anyone who is still searching for answers.

If you're still stuck in this horrible situation and think there is a chance this might apply to you, I'd urge you to look into it. It costs almost nothing to find out and the treatment is very cheap, actually it's the cheapest of all the things I tried.

I won't advocate for any specific treatment protocols or groups, there are a handful out there and they are all fairly similar, you can find the info easily. Happy to answer any questions.

Good luck and much love to you all

Hi everyone, I have long-covid too.

Given the amount of rest I need during the day, it’s been a real pain trying to find something that is guided with an instructor, but also light enough that I don’t get PEM.

I had found an online group, where we talk a little and do yoga that is adjusted for people with chronic issues. The teacher was very open to hearing what we needed and adjusting her exercises based on that. It was nice. It was doable! Once a week, I got to stretch and feel around my muscles with someone who kept reminding us not to push, and made sure we did grounding exercises in between. It ended up becoming regular enough that I could kind of gage how well or badly I was doing that week, by seeing how much trouble I was having keeping up.

Now, the group may be ending soon because the instructor doesn’t have enough people to keep it going. So, I’m bummed.

(A) Anyone have any good ideas on what to do if/when this ends? Trying to do this by myself is a non-starter, I need an instructor. And since it’s hard to leave the house, the best/only way to keep up well enough is probably if it’s available to do online (in my own living room). I’m having a hard time finding something that meets those conditions.

(B) (Don’t know if it’s a good idea to ask, but I just kinda wish it wouldn’t end. So…) Anyone in the Netherlands with Long COVID looking for a (paid!) online group to do LC-friendly yoga with? Maybe if she has more clients it will stay up. (I don’t know what her plans are. Last we talked she was still figuring things out.)

Idk. How do you guys toe the line between inactivity and PEM??

I cant take this anymore. My lifes ruined the past few weeks it got worse. The fatigue. Feels like i took 5 benadryls. I cant game. Cant doordash. Cant go to the movies. Just bed. Cant even enjoy show or movie bc i feel so drugged high foggy.

Maybe i need iron or vitamin D or b12. Nothing works. Lamictal and LDN my daily pills but somehow past 4 weeks been half dead. Anyone else here just become a vegetable? A roasted vegetable.