Cumin (Cuminum cyminum): Possible PEM Blocker

[Wishful]

Yay! I'm glad it's helping you. I wish we could figure out how to make that first "full temporary remission" not stop working.

I eventually (2 yrs?) stopped needing cumin, so maybe you'll be lucky that way too.

Lucky also that you're not one of those people who detest the taste.

 

[ilivewithcfs]

Lucky also that you're not one of those people who detest the taste.

I don't mind the taste! It's not unpleasant at all, and even if it was, I'm ready to tolerate the taste of pretty much anything,if it helps me fight this horrible disease.

 

[Wishful]

I don't mind the taste either. It's not wonderful, but not bad. Blocking PEM the way it did would have been worth really awful taste.

 

[Mimicry]

Given the ME research that has been published this year, I wonder if cumin a) mops up ammonia (created when the cells use amino acids for energy) from the blood, b) alleviates the endoplasmic reticulum stress in other ways, c) decreases intestinal permeability, thus preventing endotoxemia (seems to play big part in PEM), d) activates the immune system to mop up the cellular waste and gut bacteria more effectively. Either way I might need to try it.

 

[Wishful]

I still think it works in the brain. I tried it sublingual, then spitting it out and rinsing to avoid digestive tract effects, and it worked just as well as swallowing it. That doesn't disprove blood vessel effects though.

 

[Mimicry]

I still think it works in the brain. I tried it sublingual, then spitting it out and rinsing to avoid digestive tract effects, and it worked just as well as swallowing it. That doesn't disprove blood vessel effects though.

I personally believe that brain inflammation is just a downstream effect of everything else that seems to be going on in the mitochondria, gut and immune system (also I read from Somewhere™ that it seems like the blood-brain barrier is malfunctioning so everything that happens in the blood vessels is basically also happening in the brain) so alleviating the other stuff would naturally lead to decreased symptoms in the brain. But since we don't yet know for sure, your guess is as good as mine.

 

[linusbert]

if cumin a) mops up ammonia (created when the cells use amino acids for energy) from the blood, b) alleviates the endoplasmic reticulum stress in other ways

alpha ketoglutarate does too.

 

[hapl808]

Yeah, my guess is it's all downstream I guess? So hard to know. It feels like my dopamine levels are off, but if I work too much on the computer I initially get a 'pressure' feeling in my head. That usually dissipates when I stop, but is followed within maybe 12 hours by digestive problems - acid reflux, lots of gurgling, etc. After that, usually reflux coughing and then headache or migraine.

So for me, my very vague guess is: starts with some neurological problem, which then leads to gut issues, which further causes mitochondrial and exacerbated neurological problems.

Obviously I don't really know, though. Physical activity leads to muscle pain that forces me to stop before it usually causes PEM, but if I push through, that will trigger it as well. Mental exertion of any kind reliably triggers PEM.

I have to try cumin separate from food - I often add extra, but maybe next time I'll try 1g or so and see if it does anything. When I tried that before, it seemed to help my PEM by 20% or so - noticeable but not a huge difference. I do like to revisit things.

I'm kind of interested in trying St John's Wort or Kava or stuff like that, since it really does seem neurotransmitter related in many ways.

 

[Mimicry]

I just drank a big mug of "herbal" tea with 1 tsp of cumin as well as rosemary and oregano (half tsp each). An hour afterwards my headache is gone and my PEM symptoms are a bit better. No idea if the tea helped, I need to try it daily for a couple weeks because it actually tasted pretty good.

 

[Mimicry]

I've been taking cumin for three days and so far no PEM despite me overdoing things badly yesterday. 🤔 And my peripheral neuropathy is a tiny bit better today.

 

[Mimicry]

Lol. I started going through this thread and noticed that I'd already commented that I tried cumin in 2021 😅 it apparently stopped working back then. But if my memory serves me right, it was the wrong kind of cumin (I was confused because in Finnish Cuminum cyminum is called juustokumina and the plant we call 'cumin', kumina, is Carum carvi which is called caraway in English). But now I'm taking the right kind! I've always loved it in curries and any foods that contain chick peas or lentils.

Funnily enough caraway helped my symptoms too. Then again, herbs have tons of medicinal properties, and I don't think it was a placebo effect because I've tried so many supplements over the years that did absolutely nothing. Even some of them that I was convinced would help my issues.

 

[Wishful]

Funnily enough caraway helped my symptoms too.

Caraway has cuminaldehyde too, as does Chinese cinnamon (cassia). I'm not sure of the levels compared to cumin.

Here's a paper studying neurological effects of cuminaldehyde:

Dietary administration of cumin-derived cuminaldehyde induce neuroprotective and learning and memory enhancement effects to aging mice https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7880363/

That may not be why cumin worked for me, but it does show that cuminaldehyde does cross the BBB and alter brain cell functions. There are plenty of theoretical "marvelous herbal treatments!!!" with the evidence being tests done on cells in test tubes with the chemical applied directly, when in real life, you might need to swallow 30000 kg of the herb to maybe reach the level in the test tube.

 

[Mimicry]

Caraway has cuminaldehyde too, as does Chinese cinnamon (cassia). I'm not sure of the levels compared to cumin.

Here's a paper studying neurological effects of cuminaldehyde:

Dietary administration of cumin-derived cuminaldehyde induce neuroprotective and learning and memory enhancement effects to aging mice https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7880363/

That may not be why cumin worked for me, but it does show that cuminaldehyde does cross the BBB and alter brain cell functions. There are plenty of theoretical "marvelous herbal treatments!!!" with the evidence being tests done on cells in test tubes with the chemical applied directly, when in real life, you might need to swallow 30000 kg of the herb to maybe reach the level in the test tube.

That makes a lot of sense! I'm still not fully convinced it's my brain it's helping but who knows.

 

[Wishful]

I'm still not fully convinced it's my brain it's helping but who knows.

This is ME, so it could have been working for me by altering my brain cells, and for you it could be working via some different means, such as blood vessels or gut permeability. Difficult disease.

 

[lenora]

It's all so easy to figure out, isn't it? Well, that's the first time I've heard of caraway helping.

Does it offer any help for insomnia, I wonder. I'll check it out, but nothing seems to work for me after the first or second night. It's a long day that follows. No, I'm often not even tired. Yes, I've been to Sleep Clinics and I don't take any meds at all for sleep. Why? One night isn't worth it. Even my neurologist agreed. Feel better and I hope you both find some relief in either cumin, caraway or some other substance. Yours, Lenora

 

[Mimicry]

It's all so easy to figure out, isn't it? Well, that's the first time I've heard of caraway helping.

Does it offer any help for insomnia, I wonder. I'll check it out, but nothing seems to work for me after the first or second night. It's a long day that follows. No, I'm often not even tired. Yes, I've been to Sleep Clinics and I don't take any meds at all for sleep. Why? One night isn't worth it. Even my neurologist agreed. Feel better and I hope you both find some relief in either cumin, caraway or some other substance. Yours, Lenora

I'm sorry to hear about your sleep problems Lenora 😔 I hope you find something that helps. For what it's worth, sleep aids in general tend to be a hit-and-miss, because everyone's bodies respond to meds in their unique ways. Example A: amitriptyline and nortriptyline. They help some people to fall asleep and provide a better sleep quality, and they can help with chronic pain as well. The usual side effect is daytime drowsiness. I tried them for migraines last winter and both of them triggered hypomania so I basically didn't sleep at all and was way too energetic for my own good. 😆 So they're definitely not my drugs of choice! A combination of mirtazapine, pregabalin (Lyrica) and melatonin on the other hand seems to work for me.

 

[lenora]

Thanks @Mimicry. I'm sure that somewhere in this world is a magic formula with my name on it....I just haven't found it yet. Things are getting worse with age, and this no-sleep nonsense is very wearing.


No, I wouldn't think that nortryptiline and amitryptiline would be of much use for migraines. Horrid things, fortunately I don't get them very often at all now. Usually no-sleep doesn't bother me as much as this round is. As I told my husband, "I'm too old to feel this old."

I'm very glad that you found something that helps your condition. In this matter, long may it reign! Yours, Lenora

 

[Wishful]

Why? One night isn't worth it.

That's how I feel about it too. Melatonin sometimes allows me to fall asleep again, but then I feel groggy the next day, so it's not really worth it. I haven't found anything reliably effective with or without unpleasant side-effects, and one night of insomnia is less crippling than the side-effects of available treatments, so I just accept it and try to avoid known insomnia triggers the following day.

 

[Hope_eternal]

I only read a few of the posts in this thread so I’m
Very sorry if this has been asked already, just wondering how much cumin you are taking and are you speaking about the cumin in the attached picture? Also, do you know if it helps people improve their energy? Like if they’re bedbound, are they able to get out of bed more?

 

[ilivewithcfs]

I want to share my experience with taking cumin on an empty stomach, with food and sublingually. I think it might be important for people with GI problems.
I have a pretty bad chronic gastritis with a bunch of ulcers. I started taking cumin on an empty stomach first thing in the morning (it was a stupid idea), and after some time my gastritis flared up. Then i decided to take it sublingually (1 tsp under the tongue for about 9 minutes), and cumin stopped working! I had a major crash and once again I started to get PEM after minimal activity. I've read in this thread, that it works just as well sublingually, but, for whatever reason, it didn't work for me. After that I decided to take it with food, and it worked out well. For me, cumin is just as effective when I take it with food, and my stomach is doing ok at the moment.