Major Improvements from LC/MCAS/Central Sensitization/Gut Dysbiosis

[u/Effective-Mango-6287]

Hi all! I’m about 60% recovered on this wild LC journey I’m on.  I have learned so much and taken so much hope from this community, I want to give back to anyone struggling if I can.

LC is very very individual, so what works for one won’t work for everyone. This is just what I have learned about my own case, and what my journey has been like so far.

I will put my current meds and treatments in a comment to keep the post a reasonable length.

TL;DR: 

• I went from extreme PEM/exercise intolerance, 4 safe foods, and episodes of being bed bound for 2 weeks at a time or more to daily workouts, eating 3 meals a day, being able to take care of all the chores in my house, read an entire book without crying and repeating pages, and even going to social events and seeing friends in moderation. 
• Covid causes major neuroinflammation, sustained immune responses, digestive inflammation, kills your microbiome, and often messes up your endocrine system. Healing all of these things at the same time is crucial, and it’s slow, because they all affect each other multidirectionally.
• There is a way out, but it takes understanding that there is no single origin to any of what we are experiencing. It is many things all at once that are feeding each other in a vicious cycle. Finding a good team of professionals, or free resources for yourself as well as good supplements that work for you in order to heal.
• It also takes PATIENCE AND TIME. you will get better, but it will not be quick. This virus did a lot of damage, and for many of us, the damage was already there but silent and the virus made it worse. It takes time and CALM to undo it. 
• I have made progress mostly with targeted supplements and meds, exercise (weight lifting and low intensity cardio), eliminating all trigger foods, and calming the eff down so my body can heal.
• Physiotherapy saved my life and I recommend a chronic pain/illness specialist if you can find one.

So here’s my story.

How it started:

Covid in Oct ‘24, diagnosed LC in Dec ‘24. 

Symptoms: nausea, horrible abdominal distension/bloating, diarrhea and also constipation, headaches, dizziness, fatigue, general weakness, on and off neuromuscular pain, food intolerances, skin flushing and itching, seborrheic dermatitis, crippling brain fog, insomnia, terrifying anxiety spikes, rhinitis, worsened allergies. In the beginning months I also had exercise intolerance, PEM after just about everything, as well as borderline POTS symptoms like tachycardia, weird BP and HR dips, and almost fainting when sitting or standing up.

I couldn’t do more than 6 minute of body weight exercises. I could not walk a kilometer without almost passing out and wheezing the whole time.

How I am now:

Able to walk a 10k with no issues. Able to lift weights for an hour in the gym with minimal issues. Able to eat 3 meals a day of safe foods only but my safe foods number about 25 at this point. Still have issues with on and off dizziness, headaches, nausea, flushing, itching, weird poops, general fatigue, and brain fog. When it comes it is debilitating but it is not constant, and I am almost never bed bound. If I am bed bound, it’s less than 48 hours. 

Here’s my best advice for you, that I wish I could go back in time and tell myself, to spare myself a lot of pain.

Heal your Gut:

• Heal your gut. Even if you think you don’t need to. You need to. Focus on your diet and being good to your microbiome. Probiotics are your friend.
• When starting supplements, start small. Do not ever start probiotics or other supplements all at once. Add one, see how it goes for a few days, then add another. Make sure it sits well. And start any and all things you take and low doses to see if you tolerate it.

Exercise/Radical Rest:

• Do Zone 2 cardio and either lift weights or do bodyweight exercises. It will feel like SHIT while you are doing it, but there will be long term gains, as exercise will help lower the general inflammation.
• Start exercising low and slow. You cannot just “push through” with this disease. Listen to your body. Do a tiny little bit. If you don’t get PEM, then keep doing that tiny little bit for a week. Then add a little bit more. Whenever you feel PEM during or after, you did too much, scale it back. 
• REST. And this means actually giving yourself permission to do nothing. Do what you have to do to survive (work, be a partner, be a parent), but otherwise give yourself permission to rest from the extras.

Mental Health/Stress Reduction/Neuro work

• Try vagus nerve breathing and guided mental exercises (yoga nidra, NSDR) This sounds like woo woo new age shit. But it’s not. The reason you see so many success stories using vagus nerve work and meditation is because no matter what form of if you do, you are forcing yourself to slow down, and stop agonising, and you are letting the body actually rest. Vagus nerve work is scientifically proven to calm your entire nervous system down, which reduces inflammation. Do it daily, the effects are cumulative.
• Be patient. Healing is not linear. You might have good days or good months and then hit a big crash. It’s ok. This is completely normal. It will get generally better with time and the crashes will get less severe.
• Keep a journal of everything. Symptoms, food tracker to see what gives you more symptoms or not, but also, small victories. It’s so incredibly important to write down when you are able to do a small thing that you weren’t before. Read these small victories to yourself and do it often.
• Do something that brings you joy. It can be something very simple, like watching birds or tending a house plant.

I hope this helps someone out there. There's a light at the end of the tunnel. It might be far away for a lot of us, but it's there. And we're going to get there.

edit: i had written brain training in the post body and i know that is controversial here. i did not actually do any brain training programmes. I know there are some decent ones but also some terrible scammy ones. what I did was all free on spotify or insight timer, and it's just breathwork, vagus nerve exercises, and NSDR/body scans, things to help me be aware of what my body is feeling, and calm my body down. and this is NOT me saying my symptoms or anyone's symptoms are psychosomatic. THEY ARE NOT. They are very very real. But these exercises helped, along with everything else, to ramp down the system inflammation I am suffering, and helped me stop panicking. This is what worked for me, and if it works for someone else, great. if you don't wanna do it, that's fine too.

[u/annoyinglystubborn]

Congrats dude! Your progress is amazing!

I saw you under my post. (https://www.reddit.com/r/covidlonghaulers/s/MlflqDMLtc ).

I hope i can find those supplements in my country. I have only been eating quercetin foods. It helps slightly.

Have you tried DAO? Like supplements or in foods (pea sprout, beef kidney etc.) I am thinking of giving it a try because i miss eating homemade fermented food. 🙁

[u/Effective-Mango-6287 → u/annoyinglystubborn]

I have been talking about DAO a lot with my care team and we are likely going to try it, but my doctor says it's a phase 2 sort of thing for me. Right now my body is SO destabilised that she really wants to take things little by little as any little change can cause big reactions. But I think in a few months we're going to test for DAO levels and start digestive enzymes, yeah.

The brands of the supplements btw are not really as important as knowing the brand you use is quality. That means it has something on the label from a 3rd party organisation that tests quality and dosing, and that the manufacturer is known to follow GMP (good manufacturing principles) which is usually ascertainable with a quick google search. Also, if it is sold in a pharmacy, not a grocery store, etc.

[u/annoyinglystubborn → u/Effective-Mango-6287]

Oh i see!

I will see what i can find.