Personal experience of using cumin to treat PEM

alex3619 said:
How many tried doubling the dose I wonder?
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I've done that plenty of times, including higher multiples. Usually with no effect. Cumin at something like 5 heaping tsps increased the duration from 3 days to 4, but no other effect I noticed, so I went back to a level tsp. I also usually try effective treatments at lower doses, to find the minimal one that works.

As for doubling the dose, if you've bought a bottle of the stuff and it doesn't work at the recommended (for disorders other than ME) dosage, why wouldn't you try it at higher doses (unless there are obvious hazards)? You can't get a refund for the unused portion, and there's at least a chance that it might work at a higher dosage. I've also tried the "didn't work" treatments again later, in case something prevented them from working the first time, which is possible. Maybe it needs a cofactor, or there's a counterfactor (some foods block some drugs). If you've bought it, why not experiment in different ways.
 
Creekside said:
For me, I settled on a level tsp every 3 days. Larger amounts or more frequent doses didn't help more. You can swallow the powder or use it in cooking or baking; cuminaldehyde seems pretty tolerant of heat.
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After walking up and down the mountains in 10-day 1500-mile trip, I was struggling again at home. I figured it was a good opportunity to test cumin, so I swallowed a spoonful in the morning. In the afternoon, I was on my bike. 2 days later, I was struggling again and I took another spoonful. In the afternoon, I was washing my car. It felt like a magic. It's only 2 tries though, and there is a good chance that it's just a coincidence. I'll test more systematically with coin toss in upcoming months and report.

So far, it's taking me 7 hours for the effect to take place. And it only last 2 days. If it holds up though, I'll owe you one.
 
Yes, anything that reduces ME symptoms feels like magic. I think we forget how it feels to be healthy and energetic, so any return to that feels wonderful. I hope it keeps working for you.
 
Creekside said:
Yes, anything that reduces ME symptoms feels like magic. I think we forget how it feels to be healthy and energetic, so any return to that feels wonderful. I hope it keeps working for you.
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When the constant need to lie down went away all of sudden in 2016, the surreality of it almost brought tears to my eyes. That went away after a few weeks and I was back in the familiar water. Now, it's more like "how did you do that? show me again!" type of magic; I've tasted recovery off and on since 2021, so it's not as surreal. It'll sure add another arrow in my quiver though, if it works out. Thanks again.
 
"constant need to lie down" struck a big chord since it describes my last few years.

Doctors ask about increased heart rate, dizziness, sweating, inability to stand, etc. None of that, just the overwhelming nagging urge to lie down. For me it is the subtle defining characteristic of PEM.

If things aren't too bad an hour or so of pretty much any activity (including gym, walking, making dinner) then back for an hour or two of lying down. Or maybe two days.

When I was teaching, before I knew anything about PEM or ME/CFS, I would have a huge cup of coffee at lunch, then go lie down for an hour on my office floor. I'd bike home, have a large pot of coffee and go lie down and suntan on the deck for an hour. In both cases I couldn't help but fall asleep.

In the computer lab I'd usually pull up a chair next to students rather than stand. If there was no available chair I'd sit on the floor or keel at the student's workstation.

The symptoms were so subtle that I spent years subconsciously adapting.

We talk about the years of time to medical diagnosis. While most people report sudden onset ME/CFS, I have a hunch that subtle onset is more common than we think. I also suspect that while we've seen the initial long COVID cohort, there are many undiagnosed cases that will slowly materialize.
 
@Creekside, have you tried NSAID for your PEM?

Cumin seems to have a potent anti-inflammatory property. I injured my hand a few weeks ago and my fingers would lock up in the morning when I wake up. The morning after taking cumin, however, I was able to move fingers. By the time I got up, I was able to make fist. I was impressed that I recovered so quickly, and then I realized it was cumin doing the trick when the problem came back the next morning. It happened 3 times, so I'm now fairly certain that it is cumin.

So, now I'm thinking cumin works for PEM through its anti-inflammatory properties. After biking, my inflammation temperature would go up to 25C, for example. Cumin then could be bringing it down to 15C, below my PEM threshold of 20C. This could explain why cumin doesn't work for some people; it can't bring the inflammation temperature to below their PEM threshold of 10C. So, I'm now hypothesizing that cumin works for mild/semi-recovered patients but not severe/moderate cases. This could also explain why it works to block PEM, but not baseline symptoms at ambient inflammation temperature of, say, 5C.

I'll be adding naproxen to my experiment. I know it didn't work for me before, but maybe it will now since I'm now in the mild/recovered column.
 
If cumin was anti-inflammatory in real life some pharmaceutical company would have made billions out of generating a cumin-based drug by now. The haven't.

If cumin was anti-inflammatory n real life at least one of the thousand or so patients I looked after with inflammatory arthritis would have told me about it.. They didn't.

As far as I can see the evidence is based on very limited data from adding extracts to some cells and showing reduction in cytokine RNAs. Very likely the extracted compounds are neutralised in the stomach in real life.

I have no problem with people feeling better after taking cumin but I wouldn't like members to get the impression that we know that cumin is anti-inflammatory.
 
Jonathan Edwards said:
If cumin was anti-inflammatory in real life some pharmaceutical company would have made billions out of generating a cumin-based drug by now. The haven't.
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Good point.

I have no problem with people feeling better after taking cumin but I wouldn't like members to get the impression that we know that cumin is anti-inflammatory.
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Hmm, I didn't realize I come across credible enough to make such impression. I'll have to be more careful with anecdotes then..
 
poetinsf said:
@Creekside, have you tried NSAID for your PEM?
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Yes, aspirin, acetaminophen and ibuprofen; none had a noticeable effect on my PEM, or my ME. I tried cyclosporin, which is a strong immunosuppressant, so I assume that also makes it anti-inflammatory, and that had no noticeable effect either. It doesn't pass the BBB, so that doesn't rule out neuroinflammation. For cumin, I just assume that its mechanism is one that hasn't been discovered yet. It's not listed as a wonder treatment for any disease, so it hasn't been studied much.
 
shak8 said:
Generally the more expensive brands of ground cumin are safe.
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Cumin grown in different regions have different levels of cuminaldehyde, which seemed to be the most likely component that blocked PEM. Cumin from some regions are quite low in cuminaldehyde. There was a list I found somewhere on the internet. Cheap no-name cumin worked well for me, so the more expensive cumin might be from a region that produces low cuminaldehyde.

At a level tsp every 3 days, I wasn't worried about traces of heavy metal or other contaminants.

Haveyoutriedyoga said:
I wonder if grinding cumin seeds using a coffee bean grinder be safer, unless the whole seeds are just as vulnerable
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I don't see why commercial grinding would affect the level of contaminants in the seeds, FWIW, I used both packaged ground cumin and seeds from a bulk bin, and didn't notice any difference in effectiveness.
 
I have a suspicion that most of the toxin problems with spices relate to colouring. At one time a highly carcinogenic red dye was found in one red spice - you don't need much for such things to cause cancer. I think maybe lead, mercury and arsenic are also used for colouring or whiteness.

Seeds might be safer in that the adulteration is very likely in powder form that would show up with whole seeds.

Since cumin is a boring brownish green colour I suspect it isn't too problematic but I don't have any specific data!
 
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