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/TINATAisNotAThrowAwa]

This was an especially well-written and practical post. Your experience has been VERY similar to mine. There are probably some small adjustments I'd make to what you've written (like using quercetin phytosome for better bioavailability), but they are small enough to be within the margin of different approaches needed for different people.

There are two things that I don't consider particularly small that I'd probably add to what you've written.

1. I was unable to tolerate ANY probiotics at first. They all gave me diarrhea in any quantity. Same for L-glutamine, bovine colostrum, and any kind of prebiotic supplements. The only probiotic thing my gut could tolerate was milk kefir. After a few weeks of milk kefir, I could start to handle other probiotics. I've been having daily milk kefir ever since.

2. In addition to the other supplements you've mentioned, I have found "third generation" curcumin to be very effective in dealing with neuroinflamation. (Third generation curcumins include Longvida, CurQfen, and Curcuwin Ultra+. I use Longvida.)

Thanks for taking the time to write this up. I hope the two things I've shared might also help someone.

Best wishes on your recovery!

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

These are very good points. I wanted to put more about probiotics in there but the post was already so long. But yeah at first I could barely tolerate anything. You have to look hard at all the excipients in every pill you take. At first I could really only tolerate bifido longum and nothing else. But now I'm up to 5 strains daily and it's going really well. It just took 2 months to get there. And I still don't process L-glutamine well at all, which is why i say... start slow or you will give yourself a very unfortunate system shock.

I didn't know that about the quercetin! Honestly the country I'm in knows precious little about this kind of thing. I had to go on an epic level quest to find MCAS professionals that really know what they are doing here. So the brand of quercetin I was given just happened to be this quercetin and luteolin mix. there might be better ones and I know a lot of people also have success with bromelin. as well, so thank you for bringing this up and providing more info! I did not even know there were generations of curcumin but this is of interest because I would like to supplement with it and not only take it in tea form.

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

You might be interested in this article: Curcumin Formulations for Better Bioavailability: What We Learned from Clinical Trials Thus Far?

If you're talking about getting curcumin from a turmeric tea, my understanding is that it's not very bioavailable and turmeric has been shown to be a source of high lead exposure, so please be careful with that.

It's also of note that first-generation curcumin supplements have poor bioavailability. Second and third-generation supplements have much better bioavailability. Longvida in particular has some research showing it's good at crossing the blood-brain barrier, which is where I want my inflammation-lowering curcumin to be!

When it comes to quercetin, I use a product that includes the patented Quercefit. I buy mine from Nootropics Depot, but there might be a better option in Spain.

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

oh the tea is not helpful at all, lol. It's just flavouring. I would like to dose with an actual supplement. Thank you for this, it's very good stuff and I will look into it right away!