Cumin (Cuminum cyminum): Possible PEM Blocker

[ilivewithcfs]

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 to energy? Like if they’re bedbound, are they able to get out of bed more?

As far as I know, @Wishful took 1 level tsp once every three days,and it worked out well for him over the years. I chose to take 1 lever tsp every other day, and it's working very well so far, but I've only been taking it for a couple of weeks. I'm not sure, if the cumin in your picture is the right one, maybe someone else can determine that better than me. The cumin I take is not that orange. I take the regular cumin from the grocery store and grind it in the coffee grinder. I'll attach the picture of what it looks like. Cumin definitely gives me more energy, I'm able to function so much better with it at the moment.

 

[Rufous McKinney]

I'm not sure, if the cumin in the picture is the right one

those look like cumin seeds to me.....

 

[ilivewithcfs]

those look like cumin seeds to me.....

Yeah, I guess... Maybe cumin comes in different colours? Because the stuff I take is brown-greyish, not orange.

 

[Rufous McKinney]

Because the stuff I take is brown-greyish, not orange.

cumin should not look orange.

Its more brownish/greyish

This web site shows an image of very orange cumin powder.

https://spicecravings.com/cumin-powder-ground-cumin#What_is_Cumin_Powder

 

[Wishful]

There are different varieties of cumin, and they do vary in their cuminaldehyde content. I've forgotten which country grows cumin with very low cuminaldehyde (Greece? Turkey? Egypt?). I had success with no-name packages of ground cumin, and also with cumin seed from the bulk section of the local grocery store. My guess is that the cheap readily-available stuff is generally effective, and fancy gourmet organic varieties are more of a gamble.

I'm not really surprised that it is working differently for ilivewithcfs. For ME, most treatments seem to work differently for different individuals. Cumin didn't give me an energy boost, except for the first few times when it triggered temporary remission, which put me in bouncy Tigger mode from sheer relief. Later, it just blocked PEM, so I avoided feeling less energetic due to PEM.

To @Hope_eternal , if the fancy organic cumin doesn't work, you could try the cheap no-name variety, just in case the fancy one is low in cuminaldehyde. Of treatments that have worked for at least one person (now two, plus a few others reporting minor benefits), cumin seems like a candidate for cheapest and lowest risk.

 

[ilivewithcfs]

I'm not really surprised that it is working differently for ilivewithcfs. For ME, most treatments seem to work differently for different individuals. Cumin didn't give me an energy boost, except for the first few times when it triggered temporary remission, which put me in bouncy Tigger mode from sheer relief. Later, it just blocked PEM, so I avoided feeling less energetic due to PEM.

You are right, treatments work differently for different people. It's such a weird disease. I've been taking cumin for a while now, and I still get an energy boost every time I take it. However,it doesn't block PEM 100%, I still have to be careful. I can definitely do more, but I can't do everything I want. Cumin makes my life bearable at the moment and I hope and pray,that it stays that way.

 

[Hope_eternal]

Thank you! I will keep trying other brands of powder and seeds if the one I got doesn’t prove helpful. I appreciate hearing your experience with it. Thanks so much!

 

[ilivewithcfs]

Here's my cumin update. I've been taking it for about a month now, 1 level tsp every other day. It still helps. My functioning is about 20-25% better. Less brain fog, more energy, I can do more without getting PEM. And if I do crash, it is less severe,than it used to be. It's not a cure, unfortunately, but overall I'm happy I found it. It's cheap, safe and helpful. Hope it stays that way.
I'm going to try other things, and, hopefully, someday I'll find the missing puzzle pieces.

I'm so tired of being sick.

 

[Wishful]

but overall I'm happy I found it.

It's good to hear that it's helping someone, and more than just "maybe it's helping a little bit". Also, finding something that does work helps keep you optimistic about the chances of finding something else.

 

[ilivewithcfs]

Also, finding something that does work helps keep you optimistic about the chances of finding something else.

Yes, definitely! Cumin is undeniably helpful to me, and so are fluvoxamine, valacyclovir and meditation. These things turned out to be helpful long term. This disease is not incurable and I'm going to keep trying.

 

[ilivewithcfs]

Cumin stopped working for me. I took it every other day.
I'm going to take a break and try taking it once every 3 days. Probably should've done it from the beginning.

 

[Hope_eternal]

Yes, definitely! Cumin is undeniably helpful to me, and so are fluvoxamine, valacyclovir and meditation.

My son takes Prozac and valacyclovir. These two meds brought him to a place he could handle conversations and be out of bed for 15/20 mins daily. He also takes a bunch of supplements too. We are trying the cumin. I may only do it a couple times a week and go from there. It did seem to perk him up. He’s been very chatty and happy 😊 I’m sorry it stopped working for you. I hope you find a combination of it that starts working again for you. Just curious, Have you tried experimenting with higher dose or maybe try taking it 2 times a day?

 

[ilivewithcfs]

Just curious, Have you tried experimenting with higher dose or maybe try taking it 2 times a day?

No, not really. I have more than 8 years of experience fighting this disease,and I actually read all 18 pages of this thread, and based on this knowledge I conclude,that it's far more likely, that it stopped working because I took it too often. In this thread a whole bunch of people took a lot of cumin daily, and for all of them it stopped working at some point. @Wishful is the only one with serious long lasting benefits, and he takes it once every 3 days. A lot of supplements for cfs behave this way, they work initially, than the body adapts to them and they stop working. This happened to me a lot of times. The only possible way around it, that I know of,is space out the dosages. All of this is just my opinion, obviously. I don't claim to have the perfect understanding of this disease.
I'm glad your son is getting better, he is lucky to have an understanding caretaker.

 

[Hope_eternal]

No, not really. I have more than 8 years of experience fighting this disease,and I actually read all 18 pages of this thread, and based on this knowledge I conclude,that it's far more likely, that it stopped working because I took it too often. In this thread a whole bunch of people took a lot of cumin daily, and for all of them it stopped working at some point. @Wishful is the only one with serious long lasting benefits, and he takes it once every 3 days. A lot of supplements for cfs behave this way, they work initially, than the body adapts to them and they stop working. This happened to me a lot of times. The only possible way around it, that I know of,is space out the dosages. All of this is just my opinion, obviously. I don't claim to have the perfect knowledge of this disease.
I'm glad your son is getting better, he is lucky to have an understanding caretaker.

I understand. You certainly have done much due diligence and have endured the illness for quite longer than I have been acquainted. I appreciate your insights and the sharing of your experience. It’s very valuable. So thank you very much 🙏❤️‍🩹My son’s Crohns illness can be very similar in that what once worked all of a sudden doesn’t. He often develops antibodies and the meds stop working :/. It’s frustrating.

Thank you 🙏

 

[Wishful]

and he takes it once every 3 days.

Actually, I no longer take it, because after ~2.5 years, it resulted in a permenent (fingers crossed!) cure of PEM. When I was taking it, I did go for the minimum effective dosage and maximum time between doses, because I did worry about my body adapting to it and not working.

I did try higher dosages, but that only increased the duration slightly, so I didn't think it was worthwhile. More frequent doses didn't provide a benefit either. I had the same sort of response to T2: I needed one 100 mg dose every 21 days, and higher dosage or higher frequency made it stop working. I had a similar response to LDN too, so I went with the minimal dosage, and since its effect lasted ~36 hrs, I alternated morning and next day evening doses. I'm definitely in favour of minimal dosages.

Please let me know if you manage to get it working for you again. That might be helpful for other people.

 

[ilivewithcfs]

I did try higher dosages, but that only increased the duration slightly, so I didn't think it was worthwhile. More frequent doses didn't provide a benefit either. I had the same sort of response to T2: I needed one 100 mg dose every 21 days, and higher dosage or higher frequency made it stop working. I had a similar response to LDN too, so I went with the minimal dosage, and since its effect lasted ~36 hrs, I alternated morning and next day evening doses. I'm definitely in favour of minimal dosages.

Please let me know if you manage to get it working for you again. That might be helpful for other people.

That just shows how different we are. Cumin didn't cure my PEM, it just somewhat increased my energy envelope. However, it used to significantly diminish my brain fog and fatigue for about 7 to 12 hours, so taking it more frequently definitely provided benefits.
I will let everyone know how it goes with less frequent dosages.

 

[Wayne]

A lot of supplements for cfs behave this way, they work initially, than the body adapts to them and they stop working.

Hi @ilivewithcfs -- I can certainly relate to what you're saying, as it's happened to me what feels like countless times. I have a bit of different take on what this means however.

Though it may seem that something has 'stopped working", I think it's possible that it was able to bring as much benefit as it could, but never touched the core or root cause of CFS. I'm even open to the possibility that a number of these "stop working" supplements may actually start building somewhat of a "foundational base" that may make future interventions more effective.

Maybe a different way of looking at this is that sometimes somebody finds something that works really well, and it actually does continue to bring benefits. But is it possible that some of the earlier supplements that petered out actually helped create the condition(s) that made the latest supplement work?

I think anybody with CFS has a multi-faceted health situation, and a key may be to address as many as we can in the best order we can think of, and then hope there's a cumulative effect of getting a number of things to work.

For those who've tried cumin and find it's no longer working as well, I might suggest trying the whole turmeric with all its various compounds. I recently watched a video by a health care practitioner who used both in his practice, and the whole turmeric virtually always worked better in the longer run. I think he encourages people to take the turmeric with ginger to potentiate its strength about 10x.

 

[ilivewithcfs]

I hear you. I actually decided to change my approach a bit. I used to try things one by one to find out what works, right now I'm going to try several things at once, because treatments might work synergetically and also this way I'll probably find my answer faster.
I actually tried turmeric and cumin, and for whatever reason cumin worked much better. I don't know why.

 

[Wishful]

Turmeric made my symptoms worse.

The "shotgun" approach does have some advantages, such as providing cofactors or other synergistic effects. It's a quick way to test a lot of things. The disadvantage is that you can have negative effects masking something that otherwise would work. However, since you bought all those potential treatments, and didn't use them all up, you can try some or all at once and then individually or in groups.

 

[L'engle]

My son takes Prozac and valacyclovir.

I'm surprised they have him on Prozac and not a more modern ssri?