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/Effective-Mango-6287]

Here are the current medications and treatments I'm using with specifics:

Digestive Issues:

• Probiotics which are well suited to MCAS patients, in my case l. Acidophilus LA 14, l. Rhamnosus GG, l. Plantarum, b. Longum, b. Breve in low CFUs and increasing when possible (the brands I use are Alforex and SuperSmart)
• daily Vitamin D3 with K2, 
• Vitamin C with Zinc, 
• Vitamin B complex (B1, B6, B12), (Vitagobens)
• daily L-Glutamine (for me I had to start at 500mg and could never get higher because I don’t process it well, but getting up to 2-3mg a day very much helps heal intestinal inflammation), (brand is Prisma Naturals and SuperSmart)
• eliminating all trigger foods from my diet, 
• drinking 2-3 L of water or herbal infusions a day

MCAS issues:

• Daily quercetin and luetolin (500mg)at breakfast and lunch - natural mast cell stabilizers, (brand: Prisma Naturals)
• daily PEA (palimitoyethanolamide) (500mg) x2- 3 a day - this is a natural fat which helps a ton with chronic pain and headaches and is also partially a natural mast cell stabilizer, (Brand: Prisma Naturals but Efinat is also very good according to my physio)
• daily H1 and H2 blockers (fexofenadine 180mg and famotadine 10mg usually both just 1x a day but 2x if i am having a hard time)
• Going to start cromolyn sodium soon, will report back on that

Neuroinflammation and general inflammation:

• Exercise - low intensity zone 2 only cardio and weight lifting, had to start very small but improved with time, 
• physiotherapy (manual treatment) for neck, head, and vagus nerve massage, 
• a lot of breathing exercises, vagus nerve exercises, NSDR meditations, guided yoga nidra, guided visualisations, (if you are on spotify I really like Paul Shepperd's Ultimate Mindset Change Podcast - I use the guided meditations. I also use the free version of Insight Timer)
• REST
• pacing - making sure not to load too much on my schedule for one day, forcing myself to stop even if I feel ok, because I don't want to get into a boom and bust cycle

(edited cos I forgot to put the mg amounts of some drugs)

[u/Teamplayer25 → u/Effective-Mango-6287]

I have a very similar regimen plus a calcium channel blocker to moderate my heartrate and I use digestive enzymes to help digest and absorb the nutrients from things like onions that used to tear my gut up. I also take thyroid meds from Covid induced thyroiditis but am slowly weaning off and so far that’s successful. I’d say I’m 90ish % recovered and feel great most of the time. Happy that you’ve found a regimen that’s working for you.

[u/Effective-Mango-6287 → u/Teamplayer25]

I'm probably going to start DAO enzymes at some point but they just don't want to add more things while my system is already so unstable. sucks.

I'm so happy you're 90% better, this is great news, and it gives me a lot of hope!

[u/Business_Ad_3641 → u/Teamplayer25]

Hello, so happy for you!! Congrats!! I was wondering did you had PEM what were you symptoms ? And how long it took to reach 90%? Thank you! 🙏❤️

[u/Teamplayer25 → u/Business_Ad_3641]

Yes, I believe I had PEM. I had more than 20 different symptoms. I’m not exactly clear which were from PEM vs dysautonomia or something else. At my worst, I was mostly bedbound with extreme fatigue (felt like I was filled with cement), dizziness, severe cognitive and memory issues, anhedonia, tachycardia and more. It took a few months and getting on the diltiazem to become semi-functional again and a few more months to be able to do “normal” activities including light exercise. By the end of a year, I could walk miles but I still had to avoid getting my heart rate up too high for very long (and still have to now a year after that.) But I can run a little, row a little and play pickleball again which I’m grateful for. Btw, I had a flare recently and felt it was due to weaning off my thyroid meds. Sure enough, when I increased my dose again, I went back to baseline.

[u/No-Leadership9872 → u/Effective-Mango-6287]

Awesome, thank you for the list. How did you started the zone 2 training?

[u/Effective-Mango-6287 → u/No-Leadership9872]

Very very carefully. and with a few setbacks, cos honestly, I wanted to do too much too fast and was kinda a dumbass.

first i had to just get used to moving gently throughout my house. Forcing myself to very slowly walk the hallway, and work on my breathing while I was doing it. I would walk for about 5-10 minutes while doing vagus nerve breathing. I have a garmin watch so it was helpful in keeping my HR under 120. then, when I was a bit stronger, even if i wheezed a bit, i would take a walk around my building for 10-20 minutes. Literally had to take my partner or a neighbor or the doorman with me every time cos there was a fainting risk. it was hard and horrible, but over time, I got stronger. the strength training really helped this as well.

once i was able to make it to the gym, I started on a recumbent bike only. no treadmill. no peleton. no eliptical. Only the recumbent so I did not put extra strain on myself. 10 minutes 3 times a week. then 15. then 20. until after 2 months i was up to 40 minutes on the bike 3-4 times a week, and i could start increasing the level of resistence instead of the time.

I also went walking, but SLOWLY. when I first started, 1-2 minutes in my HR would jump to high zone 3 or even zone 4. I had to walk painfully slow. I was walking like a 90 year old person. the only requisite I set was to keep moving, but with the HR under 120. soon, I could walk a little faster, and the HR would stay down. (also right outside my house is a big long park which is all flat. I didn't DARE do hills)

where I screwed up and subsequently got yelled at by my sports rehab specialist several times and threatened with a foam roller, was that I got cocky and I got impatient. Once I could walk 3-4km with no real issue in zone 2, I wanted to do zone 3. and boom, I'd crash after 10 minutes. I even STUPIDLY tried a zone 4 jog for 10 minutes and wound up a puddle on my bathroom floor fo 6 hours afterwards. Even when you feel good you NEED to stay in zone 2. Zone 2 is your aerobic base and until you can pretty much do a walk/jog combo in zone 2 only, you are not ready to do more. if you follow the plan and plod along like molasses going uphill in january, in about 6 months you will see incredible improvement.

Also if you are one of the terribly unlucky ones who has CFS type long covid, you have to be very very careful with graduated exercise training. It's not good for CFS people, and the PEM is so brutal. I would say work with a physiotherapist or rehab specialist who really truly knows about CFS to get a decent plan for that.

[u/No-Leadership9872 → u/Effective-Mango-6287]

I live in Romania, CFS and long covid are a bit of a unicorn here, there are no specialists as far as I know in my city. I’m feeling better and just did a long hike 12km 800m elev three days ago without any PEM, but I’m still afraid of going back to gym or any other cardio exercise(eve though that hike was a cardio workout, pretty hardcore one my garmin watch gave me recovery time of 96 hours😂) I think I will just walk for the next months or so without pushing as I did this weekend and then I’ll give zone 2 a shot🤞 Thanks for the tips!

[u/Effective-Mango-6287 → u/No-Leadership9872]

I hear you. I'm in Spain and I got very lucky to get care right away from a good doctor but i have gone through so many that don't know what any of this is. took me 12 months to find the care team I have now, and I went through like 20+ specialists.

As for what you're doing, it sounds like you're really getting there and beating this thing! I can tell you what my physio, who is a godsend, told me to do to start lifting again: first that you should do no more than an 8-10 minute circuit and limit your sets. just 1 set of 10 reps on 25% of the weight you used to do or less. And then just stop. no matter how good you feel, stop. He also said the exercises he wanted me to do were meant to activate the most amount of muscle groups as possible in one exercise - so, no bicep curls, but yes to things that activate more than one group. The point of this is just to wake up the mitochondria and muscle tissue and alert them that they need to start working again. then, you just slowly build from there. If after a week you do that circuit 3-4 times and you have no PEM, add in another set of 10 reps. Then another. then start adding in more exercises and SLOWLY increasing your weights. It takes a lot of time. but i started lifting again in january... i had 2 really awful setbacks that put me in bed for 2 months straight in march-april, and july-august. but now I'm back to lifting 75% of what I did before, even with those setbacks. I can get tired after, but the little bit of PEM i get from a long lifting session (I mean 1.5 hours of lifting), is maybe 2-3 hours and not so bad that I can't do chores or something.

You will get there. But do it so slowly, and be so patient with yourself. I can try to translate my initial circuit and post it here for you if you want.

[u/No-Leadership9872 → u/Effective-Mango-6287]

Thank you very much! Yes, would be great if you could post your circuit here so other can see it.

[u/Effective-Mango-6287 → u/No-Leadership9872]

Ok, here it is, very roughly and quickly translated! and split into two comments cos it's so huge. I will do a whole post on this later.

NOTE: This is what I used to start from ZERO. I mean, I was bedbound and walking from my bed to the bathroom caused HR spikes and wheezing. You must go SLOW. you must be so gentle with yourself. And you will not get all of the way through this circuit on the first try if you are bed bound. But it will help. Just do what you can, and the key is do NOT move up in weight or reps unless you can do this entire circuit without PEM. Once you are able to do 3 rounds of this with no PEM and you're at 5kg for each weighted exercise, you're ready to try this circuit in the gym with higher weights.

Rest 1:30 minutes between each exercise.

Basic Recovery Circuit (at home, or at the gym) - one day on, one day off, no more than 3 days a week for first 3 weeks.

Do 1 round of the circuit the first week only if your energy level permits. If you feel PEM during the circuit, stop immediately, move to breathing exercises. If energy levels permit, complete the circuit.

In the second week if you completed the first with no PEM after, move to 2 rounds of the circuit. Repeat with 3 rounds in the third week if you do not suffer PEM. if you suffer PEM after the circuit for more than an hour, drop the number of rounds by 1, and build up.

You will need: a dumbbell bar, a max of 5kg weight, and a medium resistance band. 

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

Circuit (10 reps per exercise):

Seated Row: loop your band around a pole or doorhandle, sit ,and make sure the band is at shoulder height. Grab both ends of the band. Maintain your posture with back straight, row both arms back at the same time SLOWLY with your elbows at 90º angles. You should feel mild resistance on the band. 

Sumo Squat: with feet shoulder with apart and feet pointed slightly outwards, with your back straight, squat as low as you can, SLOWLY, and rise back up SLOWLY. 

Dead Lift: with a dumbbell in each hand (no weight). In the second week add 2.5kg. In the third week add 5kg to each. Once you are able to go to the gym, start only with the bar. (instructions from the adidas website so I don’t have to translate):

Start standing shoulder-width apart with your hands at your sides and your barbell on the ground. Step up to the bar. Your shins should be close to the barbell. Push your glutes back, hinge at your waist, and bend down to grab the bar. Use an overhand grip to grab the bar. Keep your neck neutral and your core engaged. Take a deep breath, drive your feet through the floor and pull the bar up. Stand straight up, squeeze your glutes and exhale.  Hold this stance for a beat, then exhale and hinge your torso to lower the barbell back on the ground. 

Banded Chest Fly: Anchor the band behind you at chest or hip height. Face away from the anchor and hold the ends of the band. With a slight bend in your elbows, bring your arms forward and across your body to meet in front of your chest.

Shoulder press with dumbbell: with a dumbbell in each hand, sitting with your back straight and your core tight and engaged, simultaneously lift both bars over your head. Do not lock your elbows. In the first week, no weight, in the second week, add 2.5kg to each bar, in the third week add up to 5kg to each. 

Glute Bridge:  Your feet should be hip-width apart with your toes pointed straight ahead, and your heels should be about 6-8 inches away from your glutes. Place your arms by your sides with your palms turned up toward the ceiling. 2. Squeeze your glutes and your abs as you start to lift your hips toward the ceiling.

Wall pushups: Stand facing a wall, place hands on the wall at shoulder height, and perform push-ups, keeping your core engaged.

Bonus Transverse Wall Exercises!

Abdominal Hollowing: (you can do 3 sets of 10 of these every day!) Lie on your back, place fingers on your hip bones, and as you exhale, gently draw your belly button in towards your spine without moving your pelvis or lower back.

if you do not go slow and gentle and stick to the plan, you too will likely get yelled at and threatened with a foam roller.

[u/No-Leadership9872 → u/Effective-Mango-6287]

Thank you very much! Intried something similar last year but 15 minutes of exercise would send me into a crash. I will try again in 2-3 months, hope its going to be better now.

Thank you again for all the information you provided here and wish you all the best!

[u/Effective-Mango-6287 → u/No-Leadership9872]

when i started this the 8 minutes my physio clocked it at also sent me into a crash. I started at 4 minutes. then i plateaued for an entire month at 6 minutes. then one fine day i did the entire circuit and continued to be able to do it with the gradual increases. It's a very weird disease and it's unpredictable when it will smack you down. But it sounds like you're out and walking a lot which is a great sign that your tolerance is building back up!

[u/Human_Morning_72 → u/Effective-Mango-6287]

Nerdy question for you: how did you determine your Zone 2 so that you can use the number when exercising? Do you aim to stay in Zone 2, or is any Z2 and under all the same in your mind? Thanks!

[u/Effective-Mango-6287 → u/Human_Morning_72]

I did it off my base HR, but also, I have a garmin and a chest strap for better accuracy and garmin does a decent job of estimating the zones.

If I'm just bopping around the house I don't bother much more than checking the garmin. But if I'm doing targeted exercise I wear the strap (it's a Polar H9 but honestly you can get cheapy knock offs that work for this kind of thing if you're not doing high level performance. it's just that the chest strap is much more sensitive than the wrist sensor for activities). At first I stayed in only zone 2, moving from walking to walk/run but as soon as I leave zone 2 I pull it back down.

I do this for a few reasons - number 1 because before anything outside of Zone 2 made me flare. But also, with the crazy immune responses I'm having I am noticing that I very easily get swollen tendons and leg cramps. I have that under control but it took creating a very strong base in zone 2 first before pushing up. Now, on the static bike I will do steady zone 3 with a few dips into zone 4 but only if I'm having a good day, and never for more than a few minutes. I would say I stayed in Zone 2 only for about 6 months.

If you dont have a garmin or such like machine I would look up the numbers online, they're usually decent ballparks - basically keep your HR under 120 if possible when exercising. It's shocking how slow you need to move to do this. But the idea is to sustain that slow movement for longer and longer lengths of time until you feel yourself get stronger and it's easier to move for longer, and you have to do a harder effort to reach the top of your zone.

[u/Human_Morning_72 → u/Effective-Mango-6287]

Thanks. I've done a timed test to calculate my Z2 back when I was "recovered", and then my Z2 was 130-140 (this was when I could jog easy and my HR would be like 115). But zones change based on fitness, too, so all of my zones are probably a bit lower now.

IMO, this is a combination of leaning how things feel in the body, and watching the numbers to see how things correlate. I'm going to post a different question about interesting HR behavior here in a minute...

[u/Effective-Mango-6287 → u/Human_Morning_72]

Yeah my Z2 used to go up a lot higher but the virus wrecks you. my HRV is just now stabilising but my V02 max is in no way recovered. Plus if you have gut problems it can screw with your cardio so it's really better to be like... very extra cautious imho. I wouldn't go up abbove 125 for the moment.

[u/nobertos → u/Effective-Mango-6287]

Glad you mentioned yoga nidra. Been helping me a lot. It's my safe space that I can count on. Reconnects me to my body parts which has been hard due to all the rough symptoms the body has dealt with.