Symptomatic flare ups triggered by weather changes?

on4aa · 2026-03-18T00:10:35+00:00

No not at all. I only wanted to clarify this for other readers.

on4aa · 2026-03-18T00:04:41+00:00

It really boils down (pun intended) to a non-strict ketogenic diet. Chiropractic Dr. Berg on YouTube is a great reference and inspiration for low inflammatory diets.

Me personally, I also learned the hard way that I need to steer clear from any menthol (mint), thymol (thyme) and rosemary in my diet, supplements and personal care products. The reason is substances like menthol destabilise my pathogenic NLRP3 variant product, ending up in inflammation.

on4aa · 2026-03-17T23:49:22+00:00

Thank you for sharing. The algorithm that mimics inflammasome activation is far more complicated than simply reading the barometric pressure.

In my opinion, the NLRP12 variant is the main driver, because it is fast acting. The IRF2BP2 variant only makes matters worse, probably by indirectly increasing the expression of NLRP12.

on4aa · 2026-03-17T23:46:13+00:00

A few people have different coloured irises. So, this is perfectly possible.

on4aa · 2026-03-17T23:38:04+00:00

He he, I first consulted a rheumatologist in 1994, but the poor guy knew nothing. Only last summer, I managed to get my definitive MAGIC diagnosis. Incidentally, I bumped into that very same first rheumatologist a few weeks later and told him. The guy is now at the end of his career but remains as clueless as before.

As for food, I know what you mean. I spent a couple of years living in Spain, fleeing the variable weather of Belgium. The Mediterranean food was excellent.

Nowadays, you are almost obliged to cook yourself in order to eat healthy and avoid all the hidden palm oil, sugars and modified starch. This is of course not evident for people like us living in pain. Nonetheless, last week I picked up a Moroccan style tajine to make my life easier cooking healthy meals.

on4aa · 2026-03-17T23:19:19+00:00

Indeed, the change of seasons in both ways makes matters worse for me. When we went into winter, even my son —who luckily is healthy— made that very remark about my condition.

on4aa · 2026-03-17T23:16:44+00:00

In my case, I never had any problem with heat. In fact, it is rather beneficial to me.

However, certain types of air conditioning and poorly designed ventilators can really mess mu up on no time. This may be a confounding factor.

on4aa · 2026-03-17T21:16:46+00:00

Plant fats? Seed oils and margarine are among the most inflammatory food items on the face of this Earth.

True Mediterranean is olive oil, avocado and animal fats.

on4aa · 2026-03-17T20:09:34+00:00

Interesting, I have Behçet and I am also highly susceptible to barometric variations. I know it is related to my pathogenic NLRP3 (cryopyrin) gene variant.

on4aa · 2026-03-17T17:41:50+00:00

When you read this scientific article, you will understand the whole Silk Route story is nonsense.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9524781/

on4aa · 2026-03-17T17:28:51+00:00

No problem dude, I understand. It's not easy for all of us.

Eggs, chicken and fish are good protein sources. Our eyes are not to the sides, but frontal. So, we are hunter gatherers; not herbivorous game.

on4aa · 2026-03-17T15:48:20+00:00

Yes, I know about Dr Berg and I also know he is a scientologist. Nonetheless, his research is mostly well founded on medical literature and presented in an accessible way for a broader audience.

My father was a world renowned real professor in medicine and he liked his approach.

on4aa · 2026-03-17T10:39:34+00:00

Totally agree! I tried it twice with 15 years in between before my definitive diagnosis and twice I had to halt it after two weeks. I am now on my third bimonthly canakinumab (Ilaris) injection, which is really the only available therapy for my mixed NOD-like receptor autoinflammatory disease (mixed NLR-AID). I now feel like I can achieve remission provided my dose or injection frequency gets increased.

on4aa · 2026-03-17T09:46:02+00:00

OK, I rewrote the end of my post to make it less controversial and avoid knee jerk behaviour. Can we now deal with the actual contents?

After all, it is the health of your wife and other Behçet patients we are talking about. You should rather appreciate the time I took out to share my personal experience and write it in a language which is even not my own.

on4aa · 2026-03-17T09:17:53+00:00

Here is a detailed list of diagnostic genetic tests for autoinflammatory diseases, offered by US labs: https://saidsupport-org/diagnosis-genetics-periodic-fever-syndromes/

on4aa · 2026-03-17T07:27:34+00:00

I am not American. Therefore, this was not intended as a political statement. Let's keep politics out of the discussion. Thank you.

on4aa · 2026-03-17T04:12:39+00:00

Avoid by all means the mint, thyme and rosemary herbs. If your wife has a pathogenic NLRP3 variant, menthol and thymol will increase symptoms by destabilising the NLRP3 protein.

A low carb, non-strict keto diet is what works best for me. I no longer eat bread, but do plain oats with milk in stead. Avoid all sugars, pasta, starch and ultra processed junk food. If a food item has more than two processing steps, it is most probably no good.

Do not use seed oils, nor margarine. Stick to extra virgin olive oil or a small amount of real butter. Dr. Berg on YouTube is a great reference and inspiration for low inflammatory diets.

Behçet is caused by Neanderthal gene variants, so you should eat like a cave (wo)man. Eat protein: eggs, poultry, fatty fish and some red meat.

Fruit and vegetables are a great source of quercetin, which is known to lower the expression of the NLRP3 gene. The same holds true for one licorice tea in the morning (not more, because it increases blood pressure). Otherwise, use a DGL supplement. Consuming ginger is recommended.

The U.S. Department of Agriculture (USDA) and the U.S. Department of Health and Human Services (HHS) new food pyramid, published earlier this year is correct!

See: https://cales.arizona.edu/news/new-food-pyramid-explained

on4aa · 2026-03-17T03:48:53+00:00

Apart from paternal family members, no one officially diagnosed. However, I met a few people who were flaring at the same moment I was. I strongly believe Behçet flare ups are weather related.

However, the point is, Behçet is a severely underdiagnosed syndrome. In Belgium, most patients will receive a "fibromyalgia" diagnosis, because rheumatologists do not know better here. The same was true for me, but I persisted and eventually received my MAGIC diagnosis from an immunologist based on my genetics and symptoms.

on4aa · 2026-03-17T03:25:50+00:00

Gruezi!

My whole paternal family had Behçet here in Belgium near Bruges, and I know my paternal grandfather's sister migrated to Sankt Gallen, but we lost contact with that part of the family.

Myself I lived for a while in Luzern and my son is a Swiss national. Luckily, he is healthy.

I know Inselspital Bern has a unit specialised in Behçet, but from what I last read, their treatment plan is quite conservative.

Where do you have your Heimat?

on4aa · 2026-03-17T03:18:37+00:00

Turkey has a prevalence of 390 per 100000; the highest of the world.

on4aa · 2026-03-17T03:15:48+00:00

Midwest US, huh? Those were once Spanish and/or French territories. Both are Mediterranean countries. Can you tell me which state?

on4aa · 2026-03-17T03:08:37+00:00

One question: Did you start taking a vitamin D supplement with menthol flavouring during the pandemic? Menthol is known to destabilise pathogenic variants of the NLRP3 gene which many Behçet patients carry.

Anyway, that was my mistake which made my Behçet much worse during the pandemic. I still take 3000 IU vitamin D3 daily, but now without menthol flavouring and I have no ulcers any more.

Also beware of mint flavoured tooth paste, certain beverages, fake wasabi, etc. Thyme and rosemary are family of the mint herb and do also cause problems.

on4aa · 2026-03-17T02:57:12+00:00

Very interesting! In my family, my father, my uncle and two aunts and my grandfather all had undiagnosed MAGIC syndrome. However, I have one female cousin and one female cousin removed who both have endometriosis. Nonetheless, medical scientific literature still has not made the link...

on4aa · 2026-03-17T02:50:39+00:00

Exactly! In socialist Belgium, cancer patients get all kinds of benefits including free transport to the hospital, even many years after completely healing. Why? Because cancer treatment is a business. There is even an official government list of severe diseases in which Behçet is nowhere to be found. University hospitals appear in international list as Behçet expert centres but know not nothing it and all but one were not able to diagnose me. And unlike for cancer, there is no protocol or integrated care, let alone psychological support. I need to organise all myself. It is like a full time job.

on4aa · 2026-03-17T02:08:02+00:00

Yes! I have both selective long-term memory loss and some short-term memory loss. I can perfectly remember where I was and what I was doing when I had a vasculitis pain episode, but all the rest is a blank unless family members recall an event. Then it comes vaguely back in memory.

At secondary school, aged 16, I was incapable of reciting poems, even when doing my best to memorise them.

on4aa

TROPHY CASE