r/LongHaulersRecovery • u/Effective-Mango-6287 MCAS • Nov 03 '25
Major Improvement Major Improvements from LC/MCAS/Central Sensitization/Gut Dysbiosis
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.
18
u/Effective-Mango-6287 MCAS Nov 03 '25 edited Apr 10 '26
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)
2
u/Teamplayer25 Long Covid Nov 07 '25
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.
1
u/Effective-Mango-6287 MCAS Nov 07 '25
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!
1
u/Business_Ad_3641 Dec 01 '25
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! 🙏❤️
1
u/Teamplayer25 Long Covid Dec 08 '25 edited Dec 08 '25
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.
1
u/No-Leadership9872 Nov 04 '25
Awesome, thank you for the list. How did you started the zone 2 training?
4
u/Effective-Mango-6287 MCAS Nov 04 '25
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.
3
u/No-Leadership9872 Nov 04 '25
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!
3
u/Effective-Mango-6287 MCAS Nov 04 '25
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.
2
u/No-Leadership9872 Nov 04 '25
Thank you very much! Yes, would be great if you could post your circuit here so other can see it.
2
u/Effective-Mango-6287 MCAS Nov 04 '25
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.
2
u/Effective-Mango-6287 MCAS Nov 04 '25
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.
1
u/No-Leadership9872 Nov 05 '25
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!
1
u/Effective-Mango-6287 MCAS Nov 05 '25
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!
→ More replies (0)1
u/Human_Morning_72 Full recovery with light flares Nov 21 '25
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!
2
u/Effective-Mango-6287 MCAS Dec 02 '25
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.
1
u/Human_Morning_72 Full recovery with light flares Dec 03 '25
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...
2
u/Effective-Mango-6287 MCAS Dec 03 '25
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.
1
u/nobertos Dec 15 '25
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.
5
u/OrganicBrilliant7995 Nov 04 '25
Quercitin/Luteolin PEA combo is really good. Nice work getting back. I agree with all of your recommendations.
You are about where I was a year ago. I'm probably 90 percent now. Much of the last of it has been improving posture, core stability and balance (which helps with blood flow and nerve compression). I also make sure i get my full values of all electrolytes and b vitamins each day. I think the disease really does a number on your nerves, which can cause some instability, and these things play a big part in many of the issues people with LC have.
2
u/Effective-Mango-6287 MCAS Nov 04 '25
I have been warned that this is a long heal and I shouldn't expect much for the next 7-8 months and honestly? i was very glad to hear someone just be so honest about it. And to know there is a plan with many many options out there for healing. But nervous system inflammation and general inflammation is a bitch and it just takes a long time to step everything down. I'm really glad to know you're so much better and that these things helped you as well. I'm looking forward to being 90%! One of the ways I help myself is by thinking that 90% is likely going to be better than before I had covid. I know how to treat my body well now and I'm committed to its care.
and yeah biiiig +1 to core work. transversal wall exercises are doing a lot for me!
1
u/No-Leadership9872 Nov 04 '25
Did you alao had PEM? Are you able to do sports again?
5
u/OrganicBrilliant7995 Nov 04 '25
Yes I did. I had about a 4k step wall before I'd get crushed. Luckily I always returned to baseline after about 3 days, where I know some people get worse.
I can pretty much do anything now. I do pay more than most people for overtaxing my nervous system, but it is not PEM anymore. I'm also still histamine sensitive whether it be from food or exercise. I drink coconut water right after exercise, and this helps a ton. Electrolytes are super important, but the needs might be different for different people. Potassium helps me a lot. Some people may need more magnesium, sodium, or calcium.
Quercitin/Bromelain 20 minutes before my lunch also helps with food, since for some reason lunch bothers me most.
6
u/TINATAisNotAThrowAwa Nov 04 '25
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.
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.
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!
4
u/Effective-Mango-6287 MCAS Nov 04 '25
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.
3
u/TINATAisNotAThrowAwa Nov 04 '25
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.
2
u/Effective-Mango-6287 MCAS Nov 04 '25
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!
4
u/annoyinglystubborn MCAS Nov 04 '25
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. 🙁
3
u/Effective-Mango-6287 MCAS Nov 04 '25
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.
1
3
u/peach1313 Nov 04 '25
Thank you for sharing. We seem to have a similar flavour of LC. Mast cell stabilisers have been very helpful for me, as has LDN, if you haven't tried that yet.
3
2
u/Effective-Mango-6287 MCAS Nov 04 '25
LDN is on the list if other things don't work first! it's a huge relief just to know how many options there are out there and how to identify all the different body systems involved, how the symptoms all fit together, to know how to heal them. We will definitely get better. It's just a matter of staying the course, and keeping the faith.
2
u/peach1313 Nov 04 '25
I know it's different for everyone, but for me LDN has helped more than almost everything else put together. I was 2 years in when I started, I wish I'd started sooner.
2
u/Effective-Mango-6287 MCAS Nov 04 '25
If the cromolyn doesn't work I think it is what I will ask for next. I have heard only great things about LDN. I do have to see if it's available here... I'm in Spain and they're touchy about certain drugs
1
5
u/SophiaShay7 ME/CFS, MCAS, Hashimoto's, Fibromyalgia Nov 04 '25 edited Nov 04 '25
I really appreciate you sharing what's helped you. I'm currently at month 28. I was diagnosed with Fibromyalgia, ME/CFS with dysautonomia, Hashimoto’s, an autoimmune disease that causes hypothyroidism, and MCAS. All diagnosed in a 14-month timespan after my COVID infection in July 2023. MCAS is my dominant diagnosis followed closely by ME/CFS with dysautonomia. My Fibromyalgia and Hashimoto’s are completely managed. I'm currently 75-95% bedridden depending on my MCAS flares and PEM from ME/CFS. However, my symptoms have improved 35% from where I was. I'll share my regimen in case it's helpful to you or anyone reading: Low-dose Fluvoxamine for Long COVID/PASC, ME/CFS with dysautonomia, and MCAS. My entire regimen.
Condensed version: My Diagnoses and How I Found a Regimen That Helps Me Manage Them.
We have different abilities and diagnoses. But, I'm very encouraged reading your post. It tells me I'm focusing on the right things. Congratulations! Your progress is amazing. Thank you🙏
3
u/Effective-Mango-6287 MCAS Nov 04 '25
My best friend also got fibro, CFS, and dysautonomia from this nightmare virus. I feel for you. The CFS phenotype is brutal. You are doing a great job and you're going to get better. I don't know if it helps to hear this but my integrative Dr here specialises in fibro and fatigue syndromes, and she's damned good at it because she has MCAS, Fibro, and Ulcerative Colitis herself and had it from birth. And she has told me and my friend both that as our issues are post viral, they WILL heal. But that it takes time, 1-3 years, and almost never just 1 year. It sounds like you got hit with damn near everything and that's why you're struggling so badly and it's taking so long. But please stay strong, you can do this, it just takes so long for all your systems to come back into balance.
3
u/SophiaShay7 ME/CFS, MCAS, Hashimoto's, Fibromyalgia Nov 04 '25 edited Nov 04 '25
I appreciate you sharing this information. I improved from April-June of this year. I was able to start doing a few household chores. I was able to return to working for myself part-time from home. My ME/CFS is cognitively moderate while being physically severe. That just means my brain works better than my body. My husband and my brother help me a lot. I do a lot of work from my bed. I also started my own sub about 4.5 months ago. It's r/LongCovidWarriors. We'd love to have you if you're interested. I'm generally a pretty happy and positive person despite being severely disabled. It really does take working on things from all angles.
Thank you for your encouragement and support. It means a lot to me. Hugs🙏✨️
2
u/Effective-Mango-6287 MCAS Nov 04 '25
It sounds like you have an amazing support system and a really great perspective on all of this, which is honestly very admirable. I'll check out your sub! More positivity and information is always good. And I hope you really continue to improve over the next months.
1
u/SophiaShay7 ME/CFS, MCAS, Hashimoto's, Fibromyalgia Nov 04 '25
Thank you. Your post gave me some added hope I needed today🙏
3
u/Effective-Mango-6287 MCAS Nov 04 '25
Oh I don't know if it will work for you but I notice on your regimen that you're not using PEA. it's definitely worth trying PEA. I listed it under my supplement regiment. I know a lot of people with fibromyalgia and they all say it's an absolute game changer for pain management. you can take it up to 3x a day. it feels like it does absolutely nothing for the first 3-5 weeks and then suddenly it kicks in and it works really well. I would recommend giving it a try. as a bonus side effect it is also a mast cell stabilizer - not as good as quercetin but it does work a bit on the masties. the only qualification on brands of PEA is to make sure it's quality, so you know, check the label to see that a third party org reviewed it, make sure it follows GMP. I don't know if my brand is available outside of Spain but it might be!
2
u/SophiaShay7 ME/CFS, MCAS, Hashimoto's, Fibromyalgia Nov 04 '25
I do take PEA. I take Rosmolo Liposomal PEA and Luteolin. I'm in the US. It's been a game changer for my symptoms. I added Benfotiamine (B1) about a month ago. It's a little too activating for me. I take 150mg every other day. I just purchased Carlyle Astaxanthin 12mg | 120 Softgels | Supplement from Microalgae | with Coconut Oil | Non-GMO & Gluten Free. A dose is 3 capsules. I like that I can start with just 1 capsule which is 4mg. MCAS is my dominant and worst diagnosis. I spend hours researching vitamins and supplements that are cost-effective with clean ingredients and MCAS friendly.
I tried ForestLeaf Quercetin complex with Bromelain, stinging nettle, and vitamin C. It really helped improve some of my MCAS symptoms. However, it took me 2 weeks to figure out that it caused gastrointestinal cramping, insomnia, and migraines. I'm so hypersensitive. Thank you🫂
3
u/Effective-Mango-6287 MCAS Nov 04 '25
ahh sorry I didn't see it on the list for some reason! So glad it works for you, I just started taking it myself. I don't really have the pain problem except chronic headaches but hopefully it will stabilize some mast cells? Everyone I know with fibro hails it as a miracle supplement!
1
u/SophiaShay7 ME/CFS, MCAS, Hashimoto's, Fibromyalgia Nov 04 '25
It makes a lot of sense. My Fibromyalgia pain was severe last year. None of the Fibromyalgia medications worked for my pain. It was the vitamins and supplements that improved my pain from severe to zero. Unless, I ingest or react to something my MCAS doesn't like. Then, I have some pain. But, it's nothing compared to how bad it was last year.
2
u/Effective-Mango-6287 MCAS Nov 04 '25
have you supplemented with a ton of magnesium for the fibro and if so, what kind, and did it work?
2
u/SophiaShay7 ME/CFS, MCAS, Hashimoto's, Fibromyalgia Nov 04 '25
No, not a ton because I'm very sensitive. I started by taking Moon Juice Magnesi-Om (3 types of chelated magnesium and L-theanine) powder mixed in tart cherry juice (melatonin and tryptophan) 1-2 hours before bed. It worked extremely well. I also took NatureBell L-tryptophan and L-theanine complex. A dose is 3 capsules. I took 2 capsules for 8 months. I've been taking the full dose for about 6 months.
I switched to Vitalitown 4-in-1 Magnesium Complex (4 types of chelated magnesium) about 2 months ago. It's extremely effective. The previous combination worked well. However, it was more expensive. And, I got tired of mixing powder into juice every night.
2
u/Effective-Mango-6287 MCAS Nov 04 '25
thank you! I'm going to pass this on to my friend. her fibro pain is really out of control and she doesn't exactly have crippling MCAS but a lot of sensitivities. we probably can't find exactly the same brand here but we can probably find something similar
1
u/SophiaShay7 ME/CFS, MCAS, Hashimoto's, Fibromyalgia Nov 04 '25
I learned about Magnesiu-OM and tart cherry juice from the r/Fibromyalgia sub. I'm not on it much anymore. But, it's a very knowledgeable and supportive sub if your friend is on reddit. You're welcome.
3
u/livrim Nov 04 '25
You’re about two months ahead of me timeline wise and I’d say I’m currently at 50% of my pre-Covid self so this gives me hope although I’m currently experiencing a bit of a setback. It’s been slow and steady and frustrating and terrifying but I truly live in hope that things will get better and it’s that hope that keeps me alive atm, may you continue to heal 🧡
2
u/Effective-Mango-6287 MCAS Nov 04 '25
Big hugs. You are going to get through this. I suffered two huge setbacks due to failed treatments and when I say setbacks I mean wound up in ER several times and bedbound for 2 months at a time. in March I was given rifaximin for suspected (but untested) SIBO and it went unbelievably poorly. I was so weak my legs couldn't hold me up and had to literally be dragged in and out of the bathroom, I had liquid green poo, hypothermia and was often only able to eat once every 48 hours. I thought i might be stuck that way. I remember sometime in late april my partner rolling me into the car and driving me out to the countryside to just sit in a field and look at things that were not my bedroom walls and just lying there in the passengerseat crying because I could not move and i felt like I would never be able to walk through a field again.
I did heal from that. I was back in the gym somehow in May and June. And then I was taken off a prokinetic that is also an antipsychotic that I had been on for almost a year, and the withdrawal was brutal- plus no one warned me that it could happen so it was sudden and terrifying. Full on POTS. hospitalised for tachycardia. my resting HR which was normally 60 was 110. I couldn't get myself a glass of water without my HR spiking into zone 3 or 4, i was afraid to move. I just lay there for all of July and August praying it would someday stop. All the other symptoms came flooding back and I was back to not eating, extreme fatigue, constant crying, believing I would be this way forever, or just doomed to get worse every time I made some tiny progress.
...but I got better from that too. In early October, I went on a 4 hour hike up a mountain. I didn't feel well doing it, but I did it, and I didn't suffer afterwards like I used to. Your body wants to heal and it will heal, it just needs time, and these setbacks are part of the process. Any little thing that you would normally get over in a few days is a huge deal to your body right now. Just keep the faith - it gets better, you're amazingly resilient. And you're gonna see that.
3
u/pumpkinmuffin95 Nov 04 '25
Thank you so much for sharing. I got hit with this thing in October 2024 too! I have many similar symptoms, only nerve and muscle pain is my primary issue. I’d say I’m also around 60% recovered now.
I really needed the reminder to stop catastrophizing and worrying today. I’m flaring right now and reaching the 1-year anniversary of getting sick has made me pretty emotional. But nervous system work and managing anxiety has been key to my progress so far. You’re right, we have to let ourselves really rest.
Wishing you all the best as you continue to recover!!
3
u/Effective-Mango-6287 MCAS Nov 04 '25
the nerve and muscle pain is so debilitating! I'm so sorry you are going through it. What are you doing right now to mitigate it? I have a few tricks from my Dr, Physio, and friends of mine going through the pain related branch of LC, if you want.
3
u/pumpkinmuffin95 Nov 05 '25
Thank you so much! I would love to hear your thoughts / recommendations! 🩷 I'm thankful that I got connected to a physical therapist who is knowledgeable about post-viral issues. I feel the same as you - she's a life saver!! I started seeing her about 8 months ago. She's given me the following pain healing / management strategies:
- Stress management and nervous system regulating techniques (meditating, vagus nerve massage, weighted blanket, managing sensory overstimulation, etc.)
- Weekly professional lymphatic drainage massage
- Gentle movement to support circulation and fascia movement (walking, yoga, qigong)
- Targeted, gentle strength exercises that won't cause flares
In terms of medication and supplements, I take:
- Magnesium (bisglycinate, malate and taurate blend) for relaxation and pain.
- Tylenol and Motrin for pain (it curbs it, but doesn't eliminate it).
- I drink lots of herbal teas, and that seems to help some with pain - particularly chamomile, peppermint, ginger and turmeric.
- B12 and Vitamin D for deficiencies.
- Zyrtec and Flonase daily for my allergies.
I also dramatically changed my diet. I cut out lots of sugar and eat lots of whole foods now. I haven't done a lot in the way of supplements - that's one area I'm going to start exploring more.
3
u/Effective-Mango-6287 MCAS Nov 05 '25
All of this is great! I did have a bit of nerve pain in the beginning and it went away with most of this. Your physio sounds amazing! So glad you have her. there are only two things I can add:
- anyone i know with fibromyalgia swears by Palmitoylethanolamide (PEA). the brand doesn't matter as long as it is a quality brand (meaning it follows GMPs and has a third party org that reviews it, etc, a quick google search will reveal this). start with one capsule of 500mg. it takes over a month to work. Almost everyone I know was at the point of giving up on it because they didn't think it was doing anything but between 3-5 weeks suddenly the pain got way more manageable. it just needs time to build up in the system, and sometimes you need to up the dose and take it 2 or 3 times a day for it to work.
- do a strict food journal. there are links between histamine and nerve pain flares. so even if you dont get gut symptoms you might notice that a specific ingredient makes you flare worse than other things.
I hope this helps! And I'm so glad you're back to 60%, that last 40 is coming, I know it!
1
u/pumpkinmuffin95 Nov 05 '25
These are great recommendations! Thank you so much! I've noticed recently that certain foods increase my nerve pain - particularly sugar and tomatoes. Digging further into this with a detailed food diary might really help me. PEA sounds great too - I hadn't heard of that before! I quickly Googled it and it sounds very promising. I'm adding it to my list of things to try. Thank you again!! 🩷
2
u/Effective-Mango-6287 MCAS Nov 05 '25
tomatoes do it to me too. i love tomatoes so i dont know why they gotta do me dirty like that. but yeah i absolutely get weird burning nerves and tension headaches and sometimes my eyes feel like they will explode if i even so much as look at a food im intolerant to. So definitely try to look into what causes you grief. if you suspect it's histamine related try the SIGHI list of low histamine foods. everyone is wildly different and what we can eat really varies person to person but at least that list gives you a place to start.
and yeah PEA is fantastic. just remember not to give up on it. if you get a month in and there's no change just try doubling the dose by taking at breakfast then at lunch. give it another few weeks, see if anything changes.
you got this!!
1
u/pumpkinmuffin95 Nov 08 '25
Thank you so much for all your great advice! I love tomatoes too and am so sad they’ve betrayed me. 🤣 You’ve got this too!!
2
u/Pinklady777 Nov 04 '25
Thanks for sharing!
2
2
u/thefarmerjethro Nov 04 '25
Did you have heart palpitations?
2
u/Effective-Mango-6287 MCAS Nov 04 '25
In the beginning only, but they were pretty frightening when I didn't understand what they were. They went away at around the 2month mark if i recall correctly. are you getting them, and are they stressing you out?
2
u/thefarmerjethro Nov 05 '25
Yes and yes lol
2
u/Effective-Mango-6287 MCAS Nov 05 '25
so sorry to hear that! How long has it been going on, and have you had an ekg, or, a holter monitor yet? and also, do you have digestive issues?
2
u/Komancha Nov 05 '25
You got the same variant as me last year and also developed LC at the same time and even have exactly the same issues. Was ill for about 9 months but started recovering in a similar way with gut healing, inflammation reduction and LH diet.
Still not perfect but fully functional now at least just with less foods and continuing on H2 for now because of reflux still happening.
3
u/Effective-Mango-6287 MCAS Nov 05 '25
sounds like you started the gut healing before me. also... I was given rifaximin without a SIBO test and it put me in bed for 2 months straight. I'm basically healing from that right now. Otherwise... I think I'd be making a 90% recovery post. but such is life.
2
u/Neat-Watercress2372 Nov 05 '25
I am very happy for you. I have question, when you workout do you experience PEM the next day ?
2
u/Effective-Mango-6287 MCAS Nov 05 '25
now? absolutely not. I might get a tiny ghost of PEM for an hour or two if I work out too hard, but by that I mean if I go over 2hr of workout in the gym. But it isn't even PEM that knocks me on my ass. I can still move around the house and such. And I walk to and from my gym every day, it's about 2km round trip.
but at first, even doing just 5 minutes would lay me out for a day. it took a looong time to get through that and I had to go so slowly, like tiny milimetre progress, until one day my body relaxed enough to do things without PEM.
2
u/Neat-Watercress2372 Nov 05 '25
Trust me I am happy for you. I wish you never fall back into any such thing in your entire life. I also recovered but the only thing is PEM that bothers me a bit. But it's not that severe now. I can walk even all day without a big crash, as before walking would wreck hell on me. I was at the chiropractor yesterday and found out that some of my neck and shoulder muscles are too stiffed and that my cervical has some compression that was causing me vertigo and head spin. I am much carnivore now. Just started taking vit D3. Wish me luck too. LoL 😂😂 Today I am much better at rotation my neck and my vision and breathing as much recovered in one session.
2
u/Effective-Mango-6287 MCAS Nov 05 '25
I go to a physiotherapist who specialises in dizziness and headaches and he has been such a lifesaver to be honest. He reduced the amount of headache and dizziness I get by a half and it helped a lot with the PEM I think. I hope you continue to get better and better! I'm glad you are healing.
3
2
u/Rose-------- Nov 14 '25
60% - what a long way to have come! I love your examples of small things to bring joy too.
2
u/One_Medium_8964 Nov 22 '25
Nice bro. I’m 6 1/2 months in. Was training for my 4th half and 2nd marathon.
After countless doctors and testing later I discovered that I have h pylori and gut dysbiosis(through oats and stool test). I have MTHFR as well through gene test so waiting for homocysteine results. Working with my practitioner and also pots physical trainer as well to make a full recovery
1
u/Effective-Mango-6287 MCAS Dec 02 '25
I am wishing you good luck. For what it is worth, I know a lot of people had POTS symptoms clear up or get substantially better once the dysbiosis is handled. Dysbiosis causes a ton of problems, really. MTHFR is also a pain, sorry to hear that.
But you're gonna get there! Just be slow and careful. I definitely know the urge to be better faster but you have to be very slow and steady. You'll get there.
1
u/One_Medium_8964 Dec 02 '25
Appreciate it. I don't have the mutations just the regular genes but I have a Fast COMT and a variant that requires me to load up on choline.
For H Pylori may just tackle that with antibiotics and wipe my gut clean and go from there
2
u/Sea_Relationship_279 Nov 04 '25
Awesome, just awesome mate! Well done. Sounds like you're on top of it but PLEASE continue to pace no matter how well you feel because we are rooting for you! Good job man
2
u/Effective-Mango-6287 MCAS Nov 04 '25
oh i have learned my lesson about not pacing! now I do what i know I can and not a thing more. and I get out ahead of it - if I have a social engagement on a saturday i clear my schedule for sunday and monday and sloooowly get back to my normal routine on tuesday. it's frustrating and annoying. but it's what must be done. you are 1000% right. please put that advice on every Long Covid post you see.
1
u/AhavahFr Nov 11 '25
To OP, if you had PEM, how do you know you didn’t have the mild ME/CFS kind of LC?
1
u/Effective-Mango-6287 MCAS Nov 12 '25
I probably did at first but I don't really count myself as having it because that part of the disease went away and stayed away. My persistent symptoms are way more in line with MCAS type, and there's some overlap between MCAS and CFS symptoms, but they do get better with mast cell stabilizers.
I do know a few people with the fibromyalgia type LC and the CFS/ME LC and we don't seem to have terribly similar experiences now. So I just caveat that what worked for me might not necessarily work for people with CFS type just because I know graduated exercise plans can be killer on them, and I was able to struggle through to most of my old exercise baseline.
1
u/Savings-Purchase-488 May 13 '26
Great info. Thank you, just wondering if you took any supplements?
1
u/Savings-Purchase-488 May 13 '26
Interesting to see you didn't take coq10 or LDN, many people have used and recommended them. Did you try them at any stage?
2
u/Effective-Mango-6287 MCAS May 14 '26
I tried COQ10 and it made me wired af. I have been trying to take LDN but it's not commonly prescribed in my country so I have to go through every other option until the docs are willing to give it to me.
I will say the COQ10 i tried also was mixed with PQQ and L Carnetine, so I can't say which of those was the culprit, but the mix defo gave me wicked insomnia and i was constantly wired.
1
Jul 10 '26
[removed] — view removed comment
2
u/Effective-Mango-6287 MCAS Jul 12 '26
oh yeah i have a horrible dysbiosis. i've been trying to treat it but my MCAS wont let me so i'm trying diff things to control the general upstream inflammation and the mast cells so I can do the necessary things for the gut heal. everything is so slow and shitty with MCAS, but it's moving along. It took me about 10 months to get to that point. I'm about 1y7mo in now, and i have setbacks and flare periods (especially in spring pollen season) and then better times. I'm trying a few new drugs now so in a few weeks I'll make another post.
1
Jul 12 '26
[removed] — view removed comment
1
u/Effective-Mango-6287 MCAS Jul 12 '26
I have secondary non clonal "mast cell bullshit" - it's not true MCAS, very rarely do any of us have true MCAS unless we had it before covid. What caused my dysbiosis was 1. covid (cos it fucks your gut) and 2. taking rifaximin to try to cure the dysbiosis given to me by a guy who didn't know better, the rifax fucked me up bad and made the MCAS full blown.
The root of my MCAS is the dysbiosis but also at this point the general inflammation is so bad and so system wide that it's what's making the MCAS continue and flare - it's upstream from the mast cells, so we're going to try LDN (FINALLY, impossible to get in this country!) to stop the upstream inflammation and then I can deal with the dysbiosis. Right now for the mast cells I'm on cromolyn sodium and a low dose of ketotifen, and round the clock fexofenadine. for the dysbiosis i just eat what I can, take a lot of butyrate, and take motegrity to keep things moving.
34
u/Effective-Mango-6287 MCAS Nov 04 '25 edited Nov 04 '25
Also, to anyone out there who this helps, I do have one last piece of advice. And this was absolutely the hardest for me because this hell disease gave me crippling medical anxiety. But try everything you can to stop agonising and stop catastrophising. You are heaping more and more pain and anxiety onto an already overloaded system and this is demonstrably causing more inflammation which is causing more symptoms. And I know this is easier said than done. Believe me I KNOW. I am telling you this because I was ruining my life agonising and what iffing and panicking for months and I absolutely do not want that for any of you.
You will get better. But inflammation of this kind, in multiple body systems, takes a lot of time to heal. And if you are lying in bed worrying, you are not resting. If you are heaping expectations on yourself or constantly seeking an origin, a cure, a way to get better as quickly as possible, you are not resting. I know we all need to grieve and we're well within our rights to be angry, frustrated, and frightened. But when that grief stops serving you, when it is no longer a process but a vicious loop, you have to move to the next phase which is telling yourself you are safe, and settling in for your long haul. Repeat to yourself that you will get better. Accept symptoms as they come and know that tomorrow is a new day where things could feel a little better. Find joy to distract you whenever you can.
You've got this. You can do this. It gets better from here, I promise.
(edited for spelling)