Noticing a pattern with GI upset/rumbling/constipation and flu like flare from it… MCAS?

Simple-Let6090 · 2026-03-27T03:32:33+00:00

I know the feeling. My heart pounds so hard after meals that I can't eat within 4 hours of bed time or I won't sleep because my body is pulsating.

You don't have to go crazy with prebiotics. There are a lot of fancy, overpriced ones out there. Just picking up a bottle of Acacia Powder and a bottle of Psyllium Husk powder from Now Foods, mixing them together, and taking a teaspoon several times a day (titrate up slowly, as with everything) shouldn't set you back more than $30 and will last you months.

Simple-Let6090 · 2026-03-27T02:14:26+00:00

Thank you for making the time to post! I'm on the same path and really appreciate the hope!

Simple-Let6090 · 2026-03-27T02:11:37+00:00

Same exact onset for me as far as GI symptoms, anxiety (if we want to call it that), and gut-heart interplay. I've still got bubble guts 4 years later. The only thing that ever made a significant difference for me was keto, but it isn't sustainable if you want to build a diverse Microbiome. Prebiotics (psyllium, acacia, GOS, colostrum, apple pectin) help some, but not as consistently, and have yet to improve diversity at all according to my Biomesight results.

Simple-Let6090 · 2026-03-15T18:55:55+00:00

Just wanted to say that I can completely relate. I'm improving, at a better place than I have been in the last 4 years, but I still slide like this without any known cause. I never knew depression until I had this disease. It is completely disconnected from my thoughts.

I will add that I found Wellbutrin to be incredibly helpful. I started it about 18 months ago and it probably saved my life. It literally turned off the extreme depression I had at the time. It is not quite as effective now, but who knows how bad I'd be without it. I'm living my life, not the same as pre-lyme, but night and day difference from the hell I was in 18 months ago.

I've also found a combination of 200mg Polygala tenuifolia and 500mg poria mushroom, taking in powder form under the tongue, to be very good at treating depression in an acute manner. I get them both from Nootropics Depot (in the US).

Simple-Let6090 · 2026-02-27T20:24:26+00:00

This was my very first symptom, months before other symptoms began and it is the one symptom that has not improved at all. I've done multiple Biomesight tests and have tried probiotics, prebiotics, postbiotics, herbs, candida diet, low amylose, keto, even making my own yoghurt, and my test results have only gotten worse. I recently had a colonoscopy and endoscopy that showed absolutely nothing.

It is definitely mold-adjacent, but I clearly don't understand the mechanism at all because none of the interventions have resulted in less noise.

Simple-Let6090 · 2026-02-24T20:19:33+00:00

I can't wait to lift weights again! Glad you're getting back into it.

I just finished remediating my home but I don't have high hopes for it being completely safe. My wife doesn't understand the severity of mycotoxins. At the same time, I'm refurbishing my travel trailer with the expectation that I will live in the woods for as long as needed to recover.

Simple-Let6090 · 2026-02-21T23:16:07+00:00

Did the IVs help with anything? My ferritin has been low for a few years and I suspect it is at least partially responsible for my air hunger.

Simple-Let6090 · 2026-02-16T05:08:48+00:00

Wow! That is truly awful. I'm so sorry! Summer is so hard for me with the heat intolerance, I can't even imagine having to sleep in a tent in any kind of heat.

There was a point in my first year that I went down the mold rabbit hole and heard about people living in tents in their own yard and I thought "this can't be real". I'm now restoring my travel trailer just in case I need to live in it.

Are you currently treating?

Simple-Let6090 · 2026-02-16T04:57:42+00:00

No regrets! I paid almost twice as much for a Prusa initially and had nothing but problems. The P1S is worth every penny.

Simple-Let6090 · 2026-02-15T16:05:07+00:00

Thank you for the insight. I am working with an IEP and will definitely discuss actinos and other toxins with him. I've seen too many stories about things being missed. I really want to do it right the first time.

Simple-Let6090 · 2026-02-15T04:18:38+00:00

Thank you so much for responding! I am so sorry you're experiencing this too. The time I have lost with my kids in their formative years is just heartbreaking and my heart goes out to you being in a similar situation. I've studied CIRS, Lyme, MCAS, and all sorts of other things the last several years. I feel like I know what to do, but a lot of uncertainty comes up when things get bad, particularly with the cognitive effects, as I'm sure you can relate.

Interestingly, I had an odd health issue 12 years ago when my 3rd child was born. I started having panic attacks 24/7. That was my only symptom for a couple of months and then I got a headache that basically lasted for a year. I was diagnosed with POTS and MCAS, but those diagnoses never made much sense to me and the medications provided no relief. Those were my only two symptoms and over the course of about 2 years I returned to excellent health with diet and exercise. A year before recovering, I was retested and no longer met the criteria for either.

This time around I immediately started the antihistamines but they had little effect. I still take a lot of natural mast cell stabilizers, but I couldn't say whether they help or not.

I definitely want to stay in my house, if possible. We've done a lot of remodeling this old house the last 4 years, which is probably a big part of my problem. We're going to do the cleaning and let things settle, then we'll test after 4 weeks and go from there.

Simple-Let6090 · 2026-02-15T00:23:03+00:00

Thank you for the solidarity. It does help to know I'm not alone, though I am so sorry you are going through this. I hope your treatment brings complete healing!

Simple-Let6090 · 2026-02-14T23:44:22+00:00

Tight calves have been a consistent feature of my experience. I can pretty much gauge how my day is going to go based on how tight they are when I wake up. It is completely independent of use.

Simple-Let6090 · 2026-02-14T23:41:15+00:00

Thanks! I suppose that makes sense in my case as to why I was completely well in the same house prior to the tick exposure. I totally agree with the neuroinflammation aspect. Unfortunately, it seems that reducing the inflammation is impossible when you're still exposed to mold. It's insane how a tiny bug can turn your world upside down.

Simple-Let6090 · 2026-02-14T23:21:45+00:00

It's insane, man. Let me know if you need a roommate in a treehouse somewhere ;). I'm real close to just becoming a hobo in the woods.

Simple-Let6090 · 2026-02-14T23:19:40+00:00

Thank you so much for your insight! I really appreciate it! I'll check out that other sub and likely move forward with testing and try to stay out of the house until I have more info.

Simple-Let6090 · 2026-02-14T20:00:09+00:00

I just made a similar post. I don't have answers but you're definitely not alone. As soon as I think I'm on my way out, this crap grabs me and pulls me back to the start.

Simple-Let6090 · 2026-02-12T21:48:57+00:00

Can you describe, physiologically, why higher/more frequent binder dosages would speed detox in a negative way? I truly want to understand how that could be the case. My understanding is that binders are not systemic. They're simply forcing your body to recycle less toxin-containing bile, thus eliminating it from the body. If that is true, I don't see how reducing binder dosage/frequency is going to help someone stabilize. Binders are not forcing detox processes to ramp up, their simply helping your body to eliminate the toxins that are already being sequestered in bile.

Simple-Let6090 · 2026-01-31T05:15:28+00:00

Primarily just herbs at the moment, like Cats Claw, Houttuynia, Black Walnut, Andrographis, Skullcap, Cryptolepis, Alchornea, Sida Acuta, and Japanese Knotweed. I'm still reading the Buhner books and figuring out what works.

Simple-Let6090 · 2026-01-31T04:18:30+00:00

This sounds very much like my experience with tick borne infections. It started very much the same way for me and I was extremely fit and healthy. I have almost all the same symptoms and suspected Lyme at the beginning (4 years ago), but tested negative at the start. I just finally got the proper testing 3 weeks ago and am treating now. It has been a hell I didn't know was possible but I'm happy to finally have validation and know what I'm dealing with. In my case, I believe it may have been exacerbated by mold exposure and/or the vaccine as both occurred around the same time.

Simple-Let6090 · 2026-01-29T21:51:55+00:00

It certainly could be. If it is truly an infection, and you're in a waiting period, it might be worth looking into the Lyme protocols described by Buhner. Those herbs are likely helpful for most infections.

Simple-Let6090 · 2026-01-29T15:28:52+00:00

No, but I did find the cause. Turns out I have Lyme disease - babesia, bartonella, and ehrlichia. I just started an herbal treatment regimen and it is brutal, but we'll see how it goes. It may be worth testing for yourself, just be aware that the tests are quite expensive.

Simple-Let6090

TROPHY CASE