Cured of PEM

Creekside

Active Member
I still have ME, but do seem to have managed to stop physically-induced PEM (not sure about cerebrally-induced PEM). A couple of years ago I discovered that cumin (cuminum cyminum) effectively blocked my physically-induced PEM. A level tsp of ground cumin would block PEM for three days; larger doses only increased the duration slightly. After taking cumin every three days for a year or two, its effect seems to have become permanent. It's been months since I've had PEM, despite some fairly heavy physical activities that should have triggered PEM.

I've posted about cumin as a PEM blocker before, and no one has reported similar benefits, so for whatever reason, it seems unique to me. Even if it doesn't work for anyone else, some of you may take heart from knowing that it's at least possible to treat and cure PEM.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I still have ME, but do seem to have managed to stop physically-induced PEM (not sure about cerebrally-induced PEM). A couple of years ago I discovered that cumin (cuminum cyminum) effectively blocked my physically-induced PEM. A level tsp of ground cumin would block PEM for three days; larger doses only increased the duration slightly. After taking cumin every three days for a year or two, its effect seems to have become permanent. It's been months since I've had PEM, despite some fairly heavy physical activities that should have triggered PEM.

I've posted about cumin as a PEM blocker before, and no one has reported similar benefits, so for whatever reason, it seems unique to me. Even if it doesn't work for anyone else, some of you may take heart from knowing that it's at least possible to treat and cure PEM.
Wow..Do you have any idea why cumin is doing this? It's worth a try... Do you take it by itself?
 

Creekside

Active Member
I'm pretty sure it's the cuminaldehyde that was doing its magic. I found a list of components for cumin, and tested other herbs with different subset of the components, and I'm pretty sure it was cuminaldehyde. I couldn't find another source of that to verify it.

Many years ago I noticed that a flare-up of symptoms didn't occur as expected. Experimentation showed that it was the cumin in my curry the night before. The first time I took a spoonful of cumin, it gave me temporary (the rest of the day) remission. After taking it for a week or two, I realized that at some point it had stopped working, as is all too common for ME treatments. I tried cumin at least several times a year after that, just in case it would start working again (nope).

A couple of years ago, I did some strenuous activity (chainsawing), fully expecting bad PEM the next day. It didn't occur. My journal showed that I'd had cumin the previous day, so I tried that and found that it indeed blocked my PEM completely. At somewhere under a level tsp it stopped being 100% effective. Over that didn't provide any further benefits other than a slight increase in duration. I did lots of activities that otherwise would have caused PEM, but didn't...unless I forgot to take my dose on time. Even then, taking after PEM developed would block the PEM after an hour or so.

I should mention that while it was 100% effective at blocking physically-induced PEM, it did not block cerebrally-induced PEM (from driving or socializing). My physically-induced PEM had a consistent 24 hr delay, while cerebral activities would trigger PEM more variably, possibly in under an hour. My guess is that physical activities trigger the immune system, which after delays and maybe multiple subsystem activations, triggered some neural response which caused the PEM symptoms. Cerebral activities seemed to be able to trigger the same response directly.

A further experiment I did: I took my tsp of cumin sublingually for 5 minutes or so, and then spat it out and rinsed my mouth out.. It was still effective that way, so it seems that it worked on my brain rather than the gut or body. FWIW, LDN was also more effective sublingually than swallowed, which is part of what convinces me that my ME is mainly in my brain.

I recheck the effectiveness of any treatments I take occasionally, since we and our ME change over time. It took about two years of every-3-days cumin before a recheck (doing activity after missing the scheduled dose) before I found that the PEM didn't occur. It's been (half a year?) since that happened, and I haven't had PEM since. Thus I consider it cured.

I had another issue that I thought was unrelated to PEM: years into my ME, I felt my baseline ME symptom severity increase, and I could restore the previous baseline level by taking T2 (3-5 diiodothyronine) or just iodine (part of which the thyroid gland converts to T2). Supplemental T4 and T3 gave me no noticeable effect, so it was specific to 3-5 T2. As with cumin, the first few times gave me temporary remission, then stopped working. Experimentation showed that if I took T2 daily, it would stop working after a few days. What I ended up with was one 100 mcg dose every 21 days. I'd often forget my dose, but I'd start feeling much lousier, and eventually think: "Oh, when was my last dose?" and my worsening would be 21 days after the previous dose. That was such a consistent long delay and an abrupt change of severity that it must mean something, but I haven't figured out what. Anyway, that problem seems to have gone away at the same time that I stopped needing cumin to block PEM, and that should mean something too.

As for experimenting with cumin, I tried it straight (I didn't really like the taste, but it wasn't unpleasant either). Cooking (in sauces or in pancakes) didn't seem to inhibit it, so steeping as tea might be safe too. Cumin's cuminaldehyde content does vary with where it's grown, so some varieties might be less effective, but I tried two or three no-name brands of ground cumin and bulk-bin seeds from a couple of different stores, and all seemed equally effective. I didn't experience any side-effects either.

One thing I never got around to trying was perilla (beefsteak plant) which contains perillaldehyde, which might have worked too. If someone finds a benefit from cumin, but hates the taste, perilla might be worth trying.


As for theories for why it worked for me, I'm still searching. There's just not a lot of research that's been done on cuminaldehyde. I found one mention of cuminaldehyde inhibiting alpha-synuclein agglomeration (the problem causing Alzheimer's), which is at least somewhat plausible. I believe that glial cells are involved in ME, and one job of astrocytes is cleaning A-syn out while we sleep, which could get messed up by immune activation.

If anyone else finds a benefit from cumin, please let me know. It's been such a wonderful treatment for me that I kept hoping that it would work for others, and maybe lead to an understanding of PEM and ME.
 

pbyr

Active Member
Thanks for posting the report. IMO, PEM is oxidative stress related. This PubMed states that it improved oxidative stress. I am sure there are many other features as you suggest.

Abstract
Metabolic syndrome (MetS) is a cluster of interconnected serious disorders, which is a major health problem whose prevalence is increasing. Oxidative stress and inflammation contribute to the disease pathogenesis and its complications. The present study aimed to investigate the effect of Cuminum cyminum L. (which has antioxidant and anti-inflammatory properties) essential oil (CuEO) supplementation on inflammatory and antioxidant status in patients with MetS. In this clinical trial, 56 patients with MetS aged 18-60 years received either 75-mg CuEO or placebo soft gel, thrice daily, for 8 weeks. Data on anthropometric parameters, food consumption, tumor necrosis factor alpha, high-sensitivity C-reactive protein, superoxide dismutase (SOD), glutathione peroxidase, catalase, total antioxidant capacity (TAC), and malondialdehyde (MDA) were assessed at the beginning and at the end of the study. Compared with the placebo group, CuEO increased SOD (149.17; 95% CI, [67.93, 230.42]), TAC (0.24; 95% CI, [0.09, 0.38]) and decreased MDA (-0.36; 95% CI, [-0.66, 0.06]), (p < 0.01). In within-group analysis, CuEO led to 13.3% decrease in MDA and 6.7% increase in TAC levels (p < 0.04). The results indicated that CuEO supplementation can improve some antioxidative indices, as SOD and TAC, while decreasing MDA in patients with MetS.
 

Meirav

Member
How interesting.
I wonder how other of its nutrients contribute as well

Have you tried nigella seeds (kalonji)?
My Indian friends say it is a powerful spice to restore health.
(as in traditional/folk medicine)
I think they soak the seeds in a glass of water?
I can't quite remember..

I love shiso (perilla)!
Not sure if it affects my health.
Didn't pay attention when I had access to it fresh.
 

Creekside

Active Member
IMO, PEM is oxidative stress related.
In my experience, it's not related. Many antioxidants make my symptoms worse. Peroxynitrite scavengers are even worse. While cumin may have antioxidant and antiinflammatory properties, that doesn't mean that it doesn't have other properties which might be responsible. Since all those other herbs and spiced that also had antioxidant and antiinflammatory properties had no effect or a negative effect, I don't think that's why cumin worked for me. Cumin may have worked by some presently unknown property, such as having the right shape and charge distribution to help or hinder some other chemical reaction.

Since cumin's effectiveness seems to be unique to me, I think the important points for researchers are that:

a) It is possible to find an effective PEM blocker.

b) It is possible to cure PEM independently of ME's other symptoms.

Those points may make a difference when a researcher is thinking about theories for ME and PEM.
 

Creekside

Active Member
Have you tried nigella seeds (kalonji)?
No, I hadn't encountered a convenient source for those--or a lot of other spices and herbs--yet. Most herbs and spices--despite the wonderful health claims for them--either have no effect on my ME or have a negative effect. Cuminum cyminum was an accidental discovery.
 

Meirav

Member
I've also found some things that do away with PEM symptoms.
some do that but make other symptoms worse (like my nerves going bonkers)
at the same time

even stranger:
I found something that ameliorates POTS (as in stabilizes my heart rate and blood pressure)
had to stop it because adverse reactions in lungs.
then I found something that only stabilized pulse pressure (difference between systolic and diastolic)
that left me with POTS
BUT NO POTS SYMPTOMS
(no nausea, cold sweats, trembling, dizziness, black-out vision, etc)

Now it is all topsy turvy after a failed experiment
I stopped all supps and tried something new.
the heart rate and BP postural changes and pulse pressure with postural changes are bonkers high again
and YET
only very little POTS symptoms
a sliver of where I was before experimenting began...

what a conundrum - what causes what...

I do like kalonji.
I wonder if that would have an effect on me...
I used to use cumin more liberally in cooking before.
I wonder
 

pbyr

Active Member
In my experience, it's not related. Many antioxidants make my symptoms worse. Peroxynitrite scavengers are even worse. While cumin may have antioxidant and antiinflammatory properties, that doesn't mean that it doesn't have other properties which might be responsible. Since all those other herbs and spiced that also had antioxidant and antiinflammatory properties had no effect or a negative effect, I don't think that's why cumin worked for me. Cumin may have worked by some presently unknown property, such as having the right shape and charge distribution to help or hinder some other chemical reaction.

Since cumin's effectiveness seems to be unique to me, I think the important points for researchers are that:

a) It is possible to find an effective PEM blocker.

b) It is possible to cure PEM independently of ME's other symptoms.

Those points may make a difference when a researcher is thinking about theories for ME and PEM.
Thanks for the response, regardless, I just ordered some. Certainly a worthy experiment!

For what it is worth, I have been using turmeric w/ black pepper, ashwagandha , Ceylon cinnamon and paprika (all bulk and organic) for a long time. These are a staple and have helped me tremendously.
 

pbyr

Active Member
Cuminaldehyde (4-isopropylbenzaldehyde) is a natural organic compound with the molecular formula C10H12O. It is a benzaldehyde with an isopropyl group substituted in the 4-position.

Cuminaldehyde is a constituent of the essential oils of eucalyptus, myrrh, cassia, cumin, and others.[1] It has a pleasant smell and contributes to the aroma of these oils. It is used commercially in perfumes and other cosmetics.

It has been shown that cuminaldehyde, as a small molecule, inhibits the fibrillation of alpha-synuclein*,[2] which, if aggregated, forms insoluble fibrils in pathological conditions characterized by Lewy bodies, such as Parkinson's disease, dementia with Lewy bodies[3] and multiple system atrophy.[4]

*Alpha-synuclein is a protein that, in humans, is encoded by the SNCA gene.[5] It is abundant in the brain, while smaller amounts are found in the heart, muscle and other tissues. In the brain, alpha-synuclein is found mainly at the tips of neurons in specialized structures called presynaptic terminals.[5] Within these structures, alpha-synuclein interacts with phospholipids[6] and proteins.[5][7][8] Presynaptic terminals release chemical messengers, called neurotransmitters, from compartments known as synaptic vesicles. The release of neurotransmitters relays signals between neurons and is critical for normal brain function.[5]

Although the function of alpha-synuclein is not well understood, studies suggest that it plays a role in restricting the mobility of synaptic vesicles, consequently attenuating synaptic vesicle recycling and neurotransmitter release.[9][10][11][12][13][14][7
 

Creekside

Active Member
For what it is worth, I have been using turmeric w/ black pepper, ashwagandha , Ceylon cinnamon and paprika (all bulk and organic) for a long time. These are a staple and have helped me tremendously.
We all seem to respond differently. Turmeric and cinnamon make my symptoms much worse, as do resveratrol, rosemary, rhodiola rosea, and several other herbs and spices I can't recall at the moment. I haven't noticed an effect from black pepper or paprika, but I only use tiny amounts. I haven't dared try a whole teaspoon worth. 🥵
 

Kuapao

Active Member
Is the supplement curcumin different from cumin? I have curcumin from a holistic practitioner but since I started to have a new burning sensation soon after trying the bunch of the supplements for the first time, I stopped taking the whole set to help eliminate sources of the problem.

I am encouraged by your experience with regular spices. Thank you for sharing.
 

Creekside

Active Member
Is the supplement curcumin different from cumin?
Yes, it's completely unrelated. Black cumin is unrelated too.

Trying a bunch of new things at once does save time, but if you notice any effect, good or bad, you then have to try them separately to identify the active one. If you try a really large number at once, you can try half of them at once, and work your way down.
 

JameDiagonal

Active Member
Thanks for posting the report. IMO, PEM is oxidative stress related. This PubMed states that it improved oxidative stress. I am sure there are many other features as you suggest.

Abstract
Metabolic syndrome (MetS) is a cluster of interconnected serious disorders, which is a major health problem whose prevalence is increasing. Oxidative stress and inflammation contribute to the disease pathogenesis and its complications. The present study aimed to investigate the effect of Cuminum cyminum L. (which has antioxidant and anti-inflammatory properties) essential oil (CuEO) supplementation on inflammatory and antioxidant status in patients with MetS. In this clinical trial, 56 patients with MetS aged 18-60 years received either 75-mg CuEO or placebo soft gel, thrice daily, for 8 weeks. Data on anthropometric parameters, food consumption, tumor necrosis factor alpha, high-sensitivity C-reactive protein, superoxide dismutase (SOD), glutathione peroxidase, catalase, total antioxidant capacity (TAC), and malondialdehyde (MDA) were assessed at the beginning and at the end of the study. Compared with the placebo group, CuEO increased SOD (149.17; 95% CI, [67.93, 230.42]), TAC (0.24; 95% CI, [0.09, 0.38]) and decreased MDA (-0.36; 95% CI, [-0.66, 0.06]), (p < 0.01). In within-group analysis, CuEO led to 13.3% decrease in MDA and 6.7% increase in TAC levels (p < 0.04). The results indicated that CuEO supplementation can improve some antioxidative indices, as SOD and TAC, while decreasing MDA in patients with MetS.
This is veyr interesting you are great in posting this. :)
 
We all seem to respond differently. Turmeric and cinnamon make my symptoms much worse, as do resveratrol, rosemary, rhodiola rosea, and several other herbs and spices I can't recall at the moment. I haven't noticed an effect from black pepper or paprika, but I only use tiny amounts. I haven't dared try a whole teaspoon worth. 🥵
Hi Creekside,

Would love to hear which symptoms were made worse by the herbs you mention, if you’re willing to share. Even small amounts of resveratrol make me twitch (like myoclonic jerks) but when that happens with various treatments I never know if it is something I should keep trying to work up to very slowly or if it is just a no go for me
 

Creekside

Active Member
The herbs made my general symptoms worse: mental lethargy, neuropathic pain, general malaise. I don't recall any individual symptoms not being increased, nor any new symptoms added. Typical entries in my journal after taking one of those herbs are "very lousy" or "bleh". I do wish there were ways to reliably quantize symptom severity.

Muscle tremors are an ME symptom I've had in the past, and still get on rare occasions when my other symptoms are unusually severe. I don't recall them occurring from those herbs, but I didn't do lengthy testing of them; just enough to verify that they were responsible for making me feel worse.
 

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