My experience with autoimmunity

This is a personal story but it is important for this information to be out there. As of now, I would call my current state “OK, but not great.”

Background

Last year, my symptoms began with sharp pain in the upper left region whenever I ate different foods. I then started burping a lot and developing foamy urine. My ANA Titer was 1:640. My gut feeling is that it was some sort of latent reaction to a medication I took (it also raised my bilirubin to 1.6 from 0.8; it made me annoyed when Dr. casually said b.c. of “Gilbert’s Syndrome”). I had some facial swelling after drinking water and eating certain foods, which I felt bode badly for my kidneys.

Later on the Dr. in the US tested for Anti-DFS70 antibodies, which were positive, which he took as a good sign that meant I wouldn’t develop actual autoimmune disease. But clearly he just read a paper with 60-something citations on PubMed that anyone could find, so he wasn’t an actual practitioner, just someone who repeats things they hear.

Despite weird feelings in my joints, chest X-Rays are normal according to the Dr. My joints are still a bit crackly but I don’t hear them much anymore if at all.

At first, I believed it was a pancreatic problem or kidney problem due to the location, pain, and foamy urine.

Some notable moments:

I ate cashews, and had so much gas in my upper left quadrant that the region bulged upwards and felt hard.
Any sort of spices or seeds (black pepper, chilis, garlic, cashews) caused the following:
- Intense optic nerve pain
- Joints felt bad; they cracked and popped all the time; especially notable in my upper back (anklydosing spondylitis). It was difficult to sleep because I could feel my joints so much.
I had peripheral neuritis (solved with B12 supplementation).
My heart often felt weird because of all the gas.
At its worst, I was so stressed after eating something and due to gas production that I felt like I was choking.
I have oral allergy syndrome to strawberries. I ate a strawberry that wasn’t microwaved enough (which destroys the allergens) and suddenly my blood pressure dropped and I tasted metal in my mouth.
I felt things that felt like worms on my brain. Maybe it was the blood vessels.
Bier spots on my hands and feet. Blood pooling.
White stools (wonder if it just from gas blocking the ducts), yellow diarrhea, undigested food, mucus, and everything in-between
Purple fingernails (likely intestinal bleeding leading to blood loss)
Brain fog (literally unable to recall a word)
Vision problems: could see in front of me but eyes couldn’t focus
Increase in tinnitus. Dry eyes.
There were some moments where the SIBO seemed to “activate” and I suddenly became super fatigued.
My throat still sometimes hurts if I eat too much sugar. Maybe it has to do with Candida, not totally sure on this one.
Loose teeth were very scary. After eating Vitamin D, it caused pain where the tooth is (heard that is “calcium being pushed back in.“)
If you don’t want to lose teeth you should exercise. I think it dilates the blood vessels so if you haven’t ran for a while it causes toothaches. The benefit of exercise I think is mostly the blood flow.

I highly suspect all of the following are related:

Autoimmune symptoms
Intestinal biofilms
Bier spots on hands
Foamy urine
Bad breath
IBS-C/IBS-D
POTS

I believe IBS-C is the advanced form of SIBO where it has migrated to the ileum, the last part of the small intestine, and causes nervous system problems/bloating/water sounds, leading to slow motility in that area. IBS-D may be SIBO in earlier parts of the small intestine and causes bile acid malabsorption, leading to diarrhea.

When my symptoms were the most severe, I think only beef and white rice didn’t cause me pain. I completely believe the ”Lion Diet.” Meat is very non-reactive. I suspect if she tried rice, it would work too.

Feelings

I believed I was going to die. I read a lot of autobiographies and memoirs. At the end of it all and today, an observer might say that it made me a stronger person or more insightful or more appreciative of limited time… but it only cast a deep and impossible to fill emptiness on the reality of human life, a realization of the hubris in many of the health space who try to escape death, an understanding of the weakness of us all, and the inevitability of waking up each day in pain and forcing yourself to work and live.

But there was another side too. Where upon the verge of death, I worried if I had treated my parents well enough. Where perhaps in the world it was not incompetence that destroyed things but maybe a lack of love and support and encouragement. It sounds silly writing it out now, but I did feel the significance of love in that moment. As I get further away from the experience of death, the less these realizations become solid in my mind. And I can no longer find them.

Research

I started researching a lot because I was determined not to die. At first I thought it was just “gluten,” and I did notice pain when eating bread, but it wasn’t consistent. This led to my current realization of antinutrients in a variety of plant foods.

At the end of it all, I think my direction and way forward on health, nutrition, and the medical establishment is clear. It’s a shame how many people have died and what their experiences have been. Time will tell if I’m right, and I think it beats what the conventional wisdom is.

A few months (June or so) after the ANA titer, I got a Cystatin C test which showed my kidneys were normal. So I stopped worrying about dying of imminent kidney failure and started thinking about how to kill SIBO.

In March, I went for a few days to the Canary Islands to get some sunlight. During that time, I noticed the foamy urine stopped. I burped less. Hair started growing out of my knee. It came back upon returning to Germany. It’s possible that Vitamin D is a missing a missing link in gut health, but I haven’t been able to replicate that despite spending time outside last summer.

Thoughts on Allergies

I think SIBO causes direct exposure of the gut to the food. When I ate oregano oil pills, I got a burning feeling in the beginning parts of my intestines. But now it seems to be further and further down, suggesting that perhaps mucus now covers the original burning parts.

I get a sore throat from time to time. One cause is sugar. But the other I think is when I eat things I am allergic to, like peatnuts. In the past, I woudl feel a little off, but not seriously in the throat like this. This suggests to me that allergies may involve leaky gut to some extent.

I also get nightmares as a result of SIBO, which I wonder if is the death of the intestinal cells. Since I am detoxing from isotretinoin, which is likely in the bile, SIBO in the upper parts of my intestine caused immediate leaky gut and nightmares after I ate it. But last night I had a nightmare near the morning, sugesting something lower in my intestines.

Killing SIBO

Things I tried (chronologically, but also from least potent to most potent, didn’t want to start with something like Rifaximin due to harm, but in retrospect I shold’ve started with something stronger):

Green cabbage juice
Red cabbage juice
Sauerkraut (didn’t do much)
Raw milk (sorta works)
Natto (works well)
Fermented coconut (works well)
Eating raw garlic (works well)
Juiced ginger
TUDCA (gave me light fevers but seems to help in killing SIBO)
Nystatin (got two boxes of 30. sometimes took 5 a day. didn’t work well by itself)
Oregano Oil (sorta works if I take 4-5 capsules (1.6-2ml) but causes a lot of pain)
- Black seed oil
Kefir (sorta works)
Fluconazole (not super effective for me. it’ll cause the tongue fungi to die off and I might feel slightly better but I think it’s damaging my liver)
Honey
- Combined with raw garlic
Lemongrass oil plus enteric coated capsules using something like confectioner’s wax/shellac
Eating a ton of fibrous vegetables
- (interestingly enough, eating raw salad once caused pain where the remaining SIBO bioflim is, which is a good sign, because pain usually means it’s detaching)
Digestive enzymes
Biofilm destroyers
- Enzymes
  - Update Fall 2024: I’ll probably have to coat these with shellac because I feel nose-bleeds after consuming these, so these are probably digesting me rather than the biofilm since the biofilm is further down now.
- Disodium EDTA
- Bismuth Thiols
Pineapple
Nystatin enemas (too much effort, not super effective since biofilm is at the end of small intestine, not large intestine)
Lugol’s iodine (there were online websites saying it is effective against fungal infections, but taking even 5 drops caused a racing heart for me, so I use essential oils instead for killing them)
Probiotic supplements
- Klaire Labs SFI 50 Billion SFU Daily Probiotics (worked a little bit, caused some stomach rumbling)
- PROGURT (useless for me. much too low quantity to work well)
- Klaire Labs Coagulans & Subtilis
- Visbiome at Costco (refrigerated)
- I take them with natto and milk to ensure their survival.
Garlic inside enteric coated capsules (too much effort to do every day)

How did I know these treatments were working? I would produce a lot of gas, get a light fever, bier spots would appear on my hands, the lymph nodes in my groin would hurt, and the stomach would rumble (I like to think the probiotics are fighting the SIBO), and sometimes I would quickly have diarrhea afterwards. Perhaps that also expelled a few biofilms. Slowly but surely, the symptoms lessened: I started to burp less, the bier spots got lighter and my hands became more pink, the foamy urine became less, and my emotions got better. For certain moments it also sounded like there was a lot of water sloshing around my intestines, which is because biofilms seem to affect the nervous system.

Update Summer 2024:

Still have this problem. Not as bad as it used to be, but still enough to where I can’t eat and gain enough calories or exercise. I can feel the bloating in the middle left part of my stomach, as opposed to the left top in the past. My intestines are hard from all the gas.

Two other solutions I haven’t seen mentioned before:

Okra makes biofilm swell and fall off (I think this is a scam)
Vienna endoscopic biofilm wash

This is difficult and I estimate I’ll still be dealing with this for at least another few months. The only things left for me to attempt is consistency: more Vitamin D (from sun activated lanolin), fasting (so I don’t feed the SIBO continuously), continuously eating kefir and kefir grains, cabbage juice in the morning for at least a month, the okra solution, and some other herbals such as berberine, slippery elm, lemongrass oil, and so on. It may be that this combination of things can get finally get rid of it. (Update August 2024: continuous cabbage juice and kefir is not working anymore; the biofilm has become resistant)

Update August 2024: The SIBO has migrated down to the lowest parts of the small intestines. It now requires 5-6 pills of oregano oil and nystatin to do anything—I will get the stomach rumbling, diarrhea, and then feel marginally better as the biofilm is attacked, but the strength and degree of intervention is much more than I had in the past. I will sometimes get a sharp stabbing pain as well, but I assume that’s not a bad thing. I should also probably fast before eating these treatments, otherwise they get diluted.

The cabbage juice worked well in the beginning but worked less as it seems the SIBO migrated down. I still don’t know if it’s exactly SIBO or SIFO. For a while, my farts and poops smelled really bad but in a “different” way from how poop should usually smell.

I don’t really have a prescriptive solution for you, but it’s worth taking a look at the things I listed and taking things that naturally attack bad things in the intestines. Vitamin D seems to help just based on that one experience in the Canary Islands, but I don’t know if it’s because of VD or sunlight. There are less autoimmune diseases the further south you go. I did find this interesting hypothesis on reddit.

Is it fair to say that all autoimmune diseases are related to gut bacteria? No. But I would highly look at what things like what I did does to the symptoms. The long-term effect of steroids and immunosuppressants will fuck someone up, give them osteoporosis, and cause them to waste away.

This was the only comment I saw that addressed this. All other comments seemed to make vague claims like “garlic boosts your immune system” and “garlic is a FODMAP.”

Update October 2024: I think all of the above treatments have stopped working due to SIBO being too low in the intestines. Even ten oregano oil capsules do nothign to me. If I fast for a single day, it clears the stomach blockage/water gurgling/slow digestion in my lower intestines where the SIBO is, and that makes the treatments work, but I don’t have enough weight to do an extended fast easily.

The options I’m considering now are just eating normally and trying to gain some weight and hoping it’ll disappear, some variant of the carnivore diet, and a biofilm wash with the clinic in Vienna.

SIBO Migration/Symptoms

Looking back at it, I wonder if I got this because I kissed a girl who had bad breath and some sort of strong fungus/bacteria in her mouth, which then colonized the top part of my small intestines or stomach. My teeth hurt for quite a while after meeting her.

I already had diarrhea and a sharp stabbing pain when eating some foods in the two months before meeting her, so it may be that the environment was ripe for me to get sick.

But it might’ve also been due to COVID, which I somehow got twice around that time. I remember a dude near me sneezing both times, and I just thought “oh, fuck.”

Fungal cells have a similarity to human cells, and I think the autoimmune symptoms are not dissimilar to pregnancy, where the body literally rejects the sperm. I know it’s fungal because nystatin causes die-off symptoms.

The main autoimmune symptom I had was pain in my eyes (the optic nerve, more in the back) and joint pain. I also had lymph node pain at times. I think these symptoms occur when biofilm either attaches or detaches. It may be worth investigating what happens to women at the moments of baby attachment and detachment.

note: write stuff about bier spots connection, urination connection, and nevrous system connection

note: growth of biofilm causes nasal drip

I wonder if lymph nodes can become “full” since die-off now seems to trigger lymph nodes at a lower part of my thigh rather than directly at the groin.

The biofilm busters tended to give me the taste of metal in my mouth. There are two theories for this: kidney damage or the release of metals from the biofilm matrix.

IBS-C and spitting and throat spit mucus and growth feelings.

Bad breath/candida/coated tongue is the result of biofilm infections.

Juicing

This juicer sucks. Don’t get it. The opening is too small and vertical food input is dangerous.

Something like this is a bit better, but for long-term usage I’d want a metal juicer. Plastic smells off and starts growing mold and you can boil but but the plastics leech out and smell terrible.

It doesn’t matter whether it’s a centrifugal or masticating jucier. Get the centrifugal one because the quality tends to be higher and it’ll be less likely to break. The cheap ones are all plastic so they’ll all end up smelling bad and be disposed of in time anyways.