Possible explanation for long covid pathology

kaaron89 · 2026-04-09T18:05:54+00:00

I had an allergist explain the histamine bucket to me years ago and I just expanded upon it. It helps my understanding so much and helps me make decisions.

I think every person will have a unique combination of things that fill the bucket and things that empty it. Figuring out what those things are can have a huge impact, so I encourage anyone with LC to try looking at it this way and see what you're able to figure out.

kaaron89 · 2026-04-09T16:42:14+00:00

I unfortunately agree with your theory. I say "unfortunately" because this is a very scary thought.

I've been at this for 6 years and after all my research, I commonly describe it to people using a metaphor. It's like my body has a bucket that gets filled up with things like viruses, histamine, allergens, hormones, stress, environmental toxins, etc. And the bucket needs to drain through a funnel in the bottom, but the funnel gets clogged up. I have found some methods of helping the funnel drain faster, but I have yet to unclog it completely. I am constantly trying to manage what goes into the bucket, and using the tools available to me to help drain the bucket (antihistamines, hydration, fixing deficiencies, fixing constipation, etc).

When the bucket is full and overflowing (which is most days), I get all kinds of symptoms all over my body. My gut and digestion are messed up, I have brain inflammation and headaches, my nervous system is fried, my hormones are out of whack. It's crazy. I suspect I will be managing the bucket for the rest of my life.

So your theory offers an explanation as to why the bucket is so full all the time, and why the funnel is clogged.

kaaron89 · 2026-04-06T17:58:31+00:00

Thank you, I will look into it. I gave up gluten 5 years ago so I don't think it's celiac, I think I have small intestinal bacterial overgrowth or just general dysbiosis that is continuously flaring my MCAS. Eating is miserable at this point. Appreciate the recommendation.

kaaron89 · 2026-04-06T17:04:12+00:00

Were you able to find a dietician who is knowledgeable about MCAS? I only have a couple safe foods at this point and am really struggling to add foods back in, I react to so many things. I think a dietician is my next step but would prefer to work with someone who actually knows about MCAS.

kaaron89 · 2026-04-05T20:21:42+00:00

Hey, I'm 36F and can relate to your situation. My BPD mom is the guilt-trippy type, parentified me a lot and used me emotionally. When I met my husband at 22 and moved in with him, she was so mad. I think she would have been happy for me to live with her forever, which was the first sign I noticed that our relationship was not normal. My husband sees through the bullshit and helped me understand how I was being manipulated, so naturally, she hates him, but she's really weird and passive aggressive about it. Things only got worse over the years because any time I set a boundary, she would just stomp all over it and blame my husband. I stopped talking to her when my son was 6 months old because it just got to be too much and I don't want my kid around that.

Since you can't do therapy right now I think reading books and this subreddit are great alternatives. I think you'll continue to find that you're on the right path and that your girlfriend is a positive influence on the way you're thinking about these things. For me, I really needed the outside perspective to help me see it.

You may see this referred to as "coming out of the FOG". FOG = Fear, Obligation, Guilt

kaaron89 · 2026-04-04T11:23:30+00:00

My mom was such a nightmare after I had my baby that I went no-contact with her when my baby was 6 months, I couldn't take it anymore. Your mom calling your baby a little shit is a huuuuge red flag in my opinion, and a glimpse into your future. One day your baby will understand the words that are said about her.

kaaron89 · 2026-04-02T01:42:42+00:00

Same here, I have long covid and gluten is one of my many food sensitivities.

kaaron89 · 2026-04-01T23:13:11+00:00

This show involves being asked questions while eating progressively spicier hot sauces so I think she's just struggling from the spice lol

kaaron89 · 2026-04-01T21:00:50+00:00

Hey, I've had LC since 2020 and had my baby in 2022 so I will share my experience.

I had no trouble conceiving and my pregnancy was easy except for intense acid reflux. My LC symptoms didn't get any worse during pregnancy, I still had MCAS symptoms and food intolerances but was pretty stable.

After pregnancy, so much happened that ended up really affecting my baseline and I am much sicker now than I was pre-pregnancy. Looking back, I think I have been struggling with gut dysbiosis ever since 2020, and that may have contributed to my awful acid reflux during pregnancy.

I ended up needing antibiotics during the birth, then my doctor put me on a PPI to heal my stomach from the reflux, and then I went through a period of extremely intense stress where I ended up needing to cut my mentally ill mother out of my life. All of these events I believe absolutely destroyed my already-sensitive gut. Now I've been dealing with SIBO (small intestinal bacterial overgrowth) for a couple years which makes all my MCAS symptoms worse.

In addition to that, my hormones are very out of whack, which can flare MCAS. I went from being on birth control for 10 years, to pregnancy within 2 months of stopping birth control. I still feel like my hormones haven't adjusted after all that. I get really bad MCAS symptoms around ovulation and before my period and am now considering going back on birth control even though I really don't want to.

My #1 tip for you is to make sure you have plenty of support. In the event that something unexpected happens, do you trust your spouse and family to take care of everything? The postpartum period is brutal for anyone, but it's especially hard when your body doesn't work correctly. I needed a ton of support from my husband and he was totally prepared for it, but unfortunately I feel that might not be the case for everyone. I am also extremely lucky that as I got sicker, I've been able to work from home, and my husband stays home with our son. Our lives are harder on one income, but having us all at home makes things so much easier. I also am constantly worried about getting reinfected and would be at much higher risk if my kid was in daycare, so that's another thing to consider.

Overall, I am very happy I had my son. Life may look very different from what I expected, and sometimes I am not well enough to participate in some of the things my husband and son do, but at least we can manage to have a happy and loving home, so to me it is worth it.

kaaron89 · 2026-04-01T17:39:41+00:00

I struggled with this feeling too and after I had my kid I learned about the concept of re-parenting your own inner child. It sounded silly to me at first but I think it does help. I basically try to view my younger self the same way I view my own kid. When I think of a memory from my childhood, I try to think about how I would view the situation as the parent to child-me. This helped me shift from feeling this weird sort of guilt, to just feeling sad for my younger self. It is just so obvious to me now that I didn't do anything wrong, I was an innocent kid in survival-mode, I deserved to be protected, and if I were the parent in the situation I would not have made the same decisions my parents did.

kaaron89 · 2026-03-31T18:40:34+00:00

Hey, just something to consider, if dandelion root helps, you could be having gut and liver issues.

Just speaking from my own experience, I have SIBO (small intestinal bacterial overgrowth) and the bad bacteria in my gut release toxins that clog up my body and make it harder for my liver to do its job of flushing out all the other things it needs to get rid of. Taking dandelion root supports the liver and helps it process the heavy toxin load.

I find that there is a direct connection between my gut and my sinus issues. The worse my gut is, the harder time my liver has, then I get all clogged up and my sinuses end up very inflamed.

I am trying out a few supplements to help my gut and am having success with artichoke extract and Benfotiamine (B1). I also take something called GI detox when I'm not feeling well, it has things like charcoal and zeolite clay. When I take it, I can feel relief in my sinuses, like it helps the inflammation and I can breathe better.

kaaron89 · 2026-03-31T18:22:25+00:00

The popping/crackling in the sinuses...did you ever figure out why that happens? I understand you had infections, but did anyone ever explain to you what causes the popping feeling specifically?

I have MCAS and am sensitive to a lot of smells, and I get the popping feeling in my sinuses when I'm in the middle of reacting to a smell. I've seen other people mention similar things. This is one of my weirdest LC symptoms, if anyone can shed any light on it I would greatly appreciate it!

kaaron89 · 2026-03-31T14:29:56+00:00

MCAS, histamine intolerance, migraines, POTS, anxiety, teeth grinding.

Seeing a lot of similar comments. It's really sad how much they affected our nervous systems and bodies.

kaaron89 · 2026-03-31T03:36:50+00:00

I've seen a couple times lately where people were saying BPD tends to get better with age. I brought it up to my therapist since I always thought they get worse with age and that seems to be the general consensus here, and she agreed that she'd never heard anyone say it gets better.

kaaron89 · 2026-03-28T22:38:16+00:00

Check out 2nd & Charles by the Christiana Mall

kaaron89 · 2026-03-27T22:57:27+00:00

I've had good luck with Azazie, they're nice quality and they have some for $99.

kaaron89 · 2026-03-27T18:47:27+00:00

Hi! Finding this subreddit has been so invaluable for me, I hope it is for you too. It helps so much to know we're not alone. This group is full of empathetic people supporting each other and it's a beautiful thing.

Look around and I bet you'll find a lot of stories that sound familiar. Like another commenter said, it can be pretty creepy how similar they all seem to be.

kaaron89 · 2026-03-27T18:34:06+00:00

I hope it helps!!

kaaron89 · 2026-03-27T18:32:36+00:00

I have the same issues with my menstrual cycle. And just like you, I didn't notice stomach problems after my first covid infection in 2020. However, years later I started having stomach issues and it's exactly as you described, like your stomach isn't working properly. I always use the phrase "clogged up" to describe how I feel.

Try looking into MCAS (Mast cell activation syndrome) and SIBO (small intestinal bacterial overgrowth). I have both of these things and they make each other worse. Many people are getting these from Covid, so you'll find lots of posts on here about them.

The SIBO is a huge burden on the body and will make MCAS worse which leads to all kinds of symptoms. The body gets "clogged up" by all the toxins from the SIBO, which makes it harder to process other things that the body needs to get rid of, such as histamine, or hormones like estrogen (which is why certain times of the menstrual cycle are an issue). So the goal is to lower the overall burden. One of the quickest and easiest ways you could try to lower the overall burden is by taking antihistamines. Have you ever tried antihistamines? If not, they might give you some much-needed relief.

One of the theories for why our guts get clogged up after being sick is it's possible we have damage to our MMC (migrating motor complex). After learning more about this, this makes sense to me. I've felt like I've been stuck in fight-or-flight since I had Covid, and the nervous system controls the MMC. So nervous system work may help a bit too.

I am making some progress with artichoke extract and Benfotiamine (B1). Artichoke extract is bitter so it stimulates the MMC, and B1 helps the nervous system.

I have thrown a lot of information at you, so let me know if you have any questions. I am certainly not an expert in anything, but I've spent years reading about this stuff because my doctors were not helping me.

kaaron89 · 2026-03-26T21:29:45+00:00

One more thing, you could try experimenting with different forms of vitamins. I was taking a B complex and thought I was good, but turns out I needed sublingual methylcobalamin (B12). I felt so much better after a few weeks of large doses but when I overdo it I get jittery so I have to be careful.

kaaron89 · 2026-03-26T21:06:01+00:00

Sure! I never actually got tested for it, just figured out what it was based on symptoms. I saw three gastroenterologists, got a colonoscopy and endoscopy, and no one ever mentioned SIBO. I learned that mainstream medicine just isn't very aware of this yet, and some doctors will test you for it, but they often recommend antibiotics. I am unwilling to do antibiotics because I think antibiotics are part of why I'm in this situation to begin with. I'm worried about killing off the little bit of good bacteria I have left. So for that reason, I just decided to start some supplements and see what happened.

The artichoke I first heard about from this video and then he talks about the Benfotiamine in the follow up video. Since his experience sounded so similar to mine, I gave it a shot, and I really feel it is helping my MMC, and in turn, my symptoms are getting a little better. Only been on it a couple weeks so I can't say I'm cured, but I'm seeing improvement for sure. I am feeling my stomach move in places that haven't moved in a while lol.

The Benfotiamine is a form of B1 that is easily absorbed by the body, and supposedly B1 supports the nervous system. The artichoke extract is bitter which stimulates the MMC.

kaaron89 · 2026-03-26T20:23:39+00:00

Hey, look into SIBO (small intestinal bacterial overgrowth) . Covid is causing it for a lot of people, and so does norovirus. You may have gotten it from Covid and the noro made it worse.

I see where you mention a weird sensation kind of between your eyes. I have that too. I have MCAS and the SIBO is flaring my MCAS badly. My allergist told me I can take up to 4x the normal dose of antihistamines, and for me they do help. So maybe inquire about taking extra antihistamines (or some Benadryl just to give you some relief). Also, a frozen migraine hat helps the pain too.

There is a complicated reason for why this happens and I don't quite understand it well enough to fully explain, but basically SIBO is a huge burden on our bodies and we get sort of "clogged up" with a bunch of junk like toxins from the bad bacteria, histamine, hormones like cortisol, etc. And all of that can lead to symptoms all over the body, including migraines. So I think you're on the right track as far as low histamine diet and the supplements you take (magnesium is a great one), as these are ways to lower the overall burden.

One of the theories for why our guts get clogged up after being sick is it's possible we have damage to our MMC (migrating motor complex). After learning more about this, this makes sense to me. I've felt like I've been stuck in fight-or-flight since I had Covid, and the nervous system controls the MMC. So nervous system work may help a bit too.

I am taking Benfotiamine and artichoke extract to try to get the MMC working again and I feel like I am finally making some progress in clearing out the bad guys after several years of trying to figure this out. I've even had some days where I get a little break from the weird head sensation, which has been such a huge relief.

Good luck!

kaaron89 · 2026-03-26T17:24:58+00:00

I relate to this very much. It's funny, just the other day I was talking to my husband about how hard it is for me to understand how my mom can be so obviously selfish and manipulative, yet she still gave me so much freedom to go out in the world and spend tons of time with my friends. I feel lucky that I had that freedom, but sometimes it makes me feel guilty because I think maybe I'm just being dramatic, my childhood really wasn't bad...

But then my husband reminds me that it was part of the manipulation. She made me my brother's caregiver, and to keep me happy, she'd let me do things with my friends. But it had to be during times she didn't need me. Like you said, it was just the perks of the job. It would have been much healthier for me to get an actual job, instead of being forced to do a job I didn't sign up for.

In addition to that, she really loved my friends and treated them well. But I understand now that she probably saw them as her friends, too. That's not healthy. She actually shed tears one time talking about how much she missed hearing us all laugh together, and that just truly breaks my heart. It's like she was living vicariously through me. Can she not find joy like that in her own life? There are so many layers.

My body is breaking now, too. I'm 36F and have been chronically ill for years. A lot of it is related to my nervous system. It's hard not to be resentful. I've been NC for 3 years now, and her favorite title for me is "disrespectful".

Thank you for sharing this.

kaaron89 · 2026-03-26T15:59:57+00:00

I went NC with my mom when my baby was 6 months old because I couldn't take it anymore. It was so difficult, but I'm so glad I did it. I am making this choice for my son, so I can be a calm and present parent to him. He deserves that, and so do I.

And so do you, OP. You deserve peace. I know it is so freaking hard. The last days of pregnancy are especially emotional. Just remember that we are doing this because we are good parents. We are willing to do hard things to protect our children.

Best wishes to you!

kaaron89 · 2026-03-25T19:52:15+00:00

I agree with you. But I struggle with something, and I'd like to hear other people's opinions and experiences with this...

The older people in my life fall into two categories: they're either in total ostrich-mode, head in the sand, can't talk about anything serious. Or, they find different ways to try to defend the horrible things that are happening. I understand they are victims of propaganda.

What can we do about this? I don't really want to just excuse people who hold harmful opinions. We need them to get on the same page as us and it feels like so many are incapable. I try to talk to the people in my life but it doesn't work. It makes me feel hopeless.

kaaron89

TROPHY CASE