My fatigue is gone. My poisoned feeling, gone. PEM, what PEM?

[seamyb]

Since my health has improved to mostly mild, I don't get that kind of air hunger anymore.

It seems to happen me when I'm at my most energetic and least plagued by other symptoms. Although my ribs ache when I have it bad. No wonder curing this is taking so long when we don't even have the manners to express it uniformly.

I noticed on half a Vicodin, the air hunger got much better.

Don't tell the doctor that or they'll put it down to anxiety. I'd try vicadin but it would probably ruin my life. Addictive personality!

Yes. I've used thyme and liked it.

I'll be trying thyme amongst many other random herbs and spices if the effects of cumin die off. I half expect them to, half have hope because of wishful.

You might like this chart

I do like that chart, thank you very much!

 

[seamyb]

My first thought is it's a brain thing. I had my oxygen level checked too. It was also fine.

Torn between brain or low CO2 levels. Nothing wrong with the lungs for sure.

 

[ljimbo423]

I'd try vicadin but it would probably ruin my life. Addictive personality!

I also have an addictive personality. Been in recovery for 30 years in August.

 

[seamyb]

I also have an addictive personality. Been in recovery for 30 years in August.

30 years, well done. 6 years here. Our reward wasn't great but every day above ground is a good one.

 

[Rufous McKinney]

I'd try vicadin but it would probably ruin my life. Addictive personality!

I seem to be capable of hording them for use during dire straits.

I was thinking maybe its the tylenol part but they say its not anti-inflammatory. It clearly does something. No its not anxiety but YES GASPING- literally GASPING in dire staits is anxiety rendering.

 

[ljimbo423]

30 years, well done. 6 years here. Our reward wasn't great but every day above ground is a good one.

Thanks. Congrats on your 6 years. I know first hand that it's not easy. I agree, every day on the green side of the grass is a good one.

 

[seamyb]

I seem to be capable of hording them for use during dire straits.

I was thinking maybe its the tylenol part but they say its not anti-inflammatory. It clearly does something. No its not anxiety but YES GASPING- literally GASPING in dire staits is anxiety rendering.

Oh I know it's not anxiety. But as a symptom it's as ellusive as PEM. And many doctors can't deal with not knowing everything, so it must be your fault. Oh vicadin helps? Must be anxiety? Oh you gasp for air? Must be because you watched a particularly enthralling episode of Sex and the City and couldn't believe the antics Karen (I presume there's a Karen) got up to.

 

[Rufous McKinney]

Oh vicadin helps? Must be anxiety? Oh you gasp for air?

I've never mentioned the symptom. I probably got my vicodin from the dentist, hence hording.

When I was starring in an episode of ER, I should have demanded oxygen.

I actually intended to ask my doctor:if its even possible to obtain oxygen. The last bout of this was the worst ever, gasping wise.

 

[Hip]

There are two or three others now, plus a couple who reported mild benefits. At least it's out of the 'only works for one person in the whole world' category.

Would you have links for these other ME/CFS patients who are benefiting from cumin? I'd like to add these stories both to the PEM busters thread, and also the ME/CFS Recovery and Improvement Stories thread.

They'll have to do it before it stops working (permanent cure of PEM) as it did for me after ~2 years.

So eventually after about 2 years cumin stopped working for you? So it does not work at all now, even if you take a higher dose?

I have had no medical support. My doctor did a full blood count and told me to be reassured. After begging him for help several times he eventually made a referral. That referral has still not manifested some 12 months later.

Here in the UK, there are almost no ME/CFS doctors who know how to run the right viral blood tests, let alone how to interpret the results, so it's something you really have to organize yourself.

See above for POTS.

What is NMH?

NMH = neurally mediated hypotension, which is another orthostatic intolerance condition where symptoms get worse on standing, and like POTS is also found in ME/CFS.

You can test yourself for POTS very easily at home, in about 10 minutes, using the active standing test for POTS.

Basically, lie down for 10 minutes and relax (eg, lying horizontal on the sofa watching TV). After 10 minutes, measure your heart rate. Then stand up, and measure your heart rate after 2 minutes, 5 minutes and 10 minutes. If your heart rate goes up by 30 or more compared to your rate lying down, then you are diagnosed with POTS.

 

[Judee]

I'll be trying thyme amongst many other random herbs and spices if the effects of cumin die off. I half expect them to, half have hope because of wishful.

Yes, please just stick to the cumin until it starts wearing off which i hope it won't.

PwME (myself included) tend to throw so much at the problem at once that I think we mess ourselves up a lot of the time.

 

[Hip]

This great improvement in ME/CFS from cumin reminds me of an old thread by @cigana where he found eating an Indian curry in the evening gives him a good night's sleep. I don't think he ever worked out why, but perhaps the cumin used in curry might explain it.

 

[seamyb]

If your heart rate goes up by 30 or more compared to your rate lying down, then you are diagnosed with POTS.

And that's even if it drops back down after a couple of minutes? Then yep, I've PoTS.

eventually after about 2 years cumin stopped working for you? So it does not work at all now, even if you take a higher dose?

I think what wishful means is that it made no difference but that PEM was permanently blocked.

 

[seamyb]

I'd like to add these stories both to the PEM busters thread, and also the ME/CFS Recovery and Improvement Stories thread.

Let me get back to you in a while before you add me. I want to see what effect stopping b12 has. Stopping b12 before this would make me severe end of moderate. And there are many symptoms it keeps away. The fatigue was the only one that crept back in, as well as the air hunger which only happens with b12 these days.

So a bit of working out exactly where I'm at is needed.

 

[Hip]

And that's even if it drops back down after a couple of minutes? Then yep, I've PoTS.

Yes, you just note the maximum heart rate you get on standing, and if that is 30 or more beat per minute higher than your lying down heart rate, that is the official diagnosis of POTS.

I think what wishful means is that it made no difference but that PEM was permanently blocked.

So @Wishful you permanently cured your PEM after two years on cumin, so that you never get PEM now?

Let me get back to you in a while before you add me. I want to see what effect stopping b12 has. Stopping b12 before this would make me severe end of moderate. And there are many symptoms it keeps away. The fatigue was the only one that crept back in, as well as the air hunger which only happens with b12 these days.

So a bit of working out exactly where I'm at is needed.

I will not be adding you for a few months anyway, just to ensure that your benefits from cumin maintain themselves, as ME/CFS patients often get these flash-in-the-pan benefits from drugs or supplements which do not pan out in the long term (as you have already noted).

 

[Hip]

Here is the one paper I found which noted mitochondrial effects of cuminaldehyde. It says:

cuminaldehyde caused the loss of mitochondrial membrane potential

Basically this study found that cuminaldehyde caused a decrease in the electrical voltage across the mitochondrial membrane.

Now although that decrease in voltage would normally equate to a loss of power in the mitochondria, I guess it's possible that in the context of the dysfunctional mitochondria and energy metabolism of ME/CFS, that reduced voltage might have a beneficial effect.

For example, this paper finds that a mild reduction in mitochondrial membrane potential still allows ATP to be generated, but has the advantage of lowering reactive oxygen species created by the mitochondria.

Oxidative stress is considered to be a problem in ME/CFS, and a lot of oxidative stress arises in mitochondria.

So by slightly reducing mitochondrial power output, cuminaldehyde may be reducing the oxidative stress generated in ME/CFS patients.



As an aside, on @mitoMAN's ME/CFS discord server, there was a whole channel dedicated to a weight loss drug called 2,4-dinitrophenol (DNP), which similarly reduces mitochondrial power output, and which one patient with an ME/CFS-like illness found greatly improved his fatigue when taken at very low doses (about 3 mg of DNP daily).

DNP reduces mitochondrial ATP output, and in this way, reduces the amount of reactive oxygen species pumped out by mitochondria. Some studies have suggested that low-dose DNP could have a protective effect in neurological diseases involving reactive oxygen species.

A few ME/CFS patients tried low-dose DNP on the discord server, but unfortunately none were able to replicate the benefits the original ME/CFS patient was obtaining.

But if cumin is anything to go by, cumin only works for a small subset of ME/CFS patients, and DNP might be the same.

 

[seamyb]

Here is the one paper I found which noted mitochondrial effects of cuminaldehyde. It says:


Basically this study found that cuminaldehyde caused a decrease in the electrical voltage across the mitochondrial membrane.

Now although that decrease in voltage would normally equate to a loss of power in the mitochondria, I guess it's possible that in the context of the dysfunctional mitochondria and energy metabolism of ME/CFS, that reduced voltage might have a beneficial effect.

For example, this paper finds that a mild reduction in mitochondrial membrane potential still allows ATP to be generated, but has the advantage of lowering reactive oxygen species created by the mitochondria.

Oxidative stress is considered to be a problem in ME/CFS, and a lot of oxidative stress arises in mitochondria.

So by slightly reducing mitochondrial power output, cuminaldehyde may be reducing the oxidative stress generated in ME/CFS patients.



As an aside, on @mitoMAN's ME/CFS discord server, there was a whole channel dedicated to a weight loss drug called 2,4-dinitrophenol (DNP), which similarly reduces mitochondrial power output, and which one patient with an ME/CFS-like illness found greatly improved his fatigue when taken at very low doses (about 3 mg of DNP daily).

DNP reduces mitochondrial ATP output, and in this way, reduces the amount of reactive oxygen species pumped out by mitochondria. Some studies have suggested that low-dose DNP could have a protective effect in neurological diseases involving reactive oxygen species.

A few ME/CFS patients tried low-dose DNP on the discord server, but unfortunately none were able to replicate the benefits the original ME/CFS patient was obtaining.

But if cumin is anything to go by, cumin only works for a small subset of ME/CFS patients, and DNP might be the same.

This paper says cuminaldehyde is found in cinnamon also... so one way of adding weight to the theory that it is this compound which is active would be to try cinnamon. I will try this.

It would of course help to have an understanding of what PEM is. I'm not surebif there's a consensus on that. All I know is Myhill's theory but I'm pretty sure that's just a decent guess.

 

[Wishful]

You might like this chart

For me, thyme, oregano, cinnamon and ginger (and several other spices&herbs) made my symptoms worse, so I'm not thinking that it's their antimicrobial properties at work.

 

[Wishful]

Would you have links for these other ME/CFS patients who are benefiting from cumin?

They posted in my PEM blocker thread, page 8 and later. Aspen, godlovesatrier, and Greenplum had significant effects, and Strawberry had a 'positive experience'. No one has posted (yet) that it stopped working for them.

So eventually after about 2 years cumin stopped working for you? So it does not work at all now, even if you take a higher dose?

It stopped working because I no longer have PEM for it to work on. 2 years of cumin seems to have made a complete cure of that part of my ME.

where he found eating an Indian curry in the evening gives him a good night's sleep. I don't think he ever worked out why, but perhaps the cumin used in curry might explain it.

My explanation is: happy tummy! Curry yummy!

This paper says cuminaldehyde is found in cinnamon also...

Cinnamon makes my ME worse, and I didn't notice it doing anything for my PEM before (although it took me years to notice that cumin blocked PEM, because when I did test it for general ME symptoms, I wasn't having or expecting PEM at those times).

 

[Rufous McKinney]

Cinnamon makes my ME worse

cinnamon is very heating- and so with an inflammatory condition, its contraindicated.

 

[Judee]

1.6% of cumin is cuminaldehyde. Ref: 1

If cuminaldehyde is unstable and breaks down in contact with air, this makes me wonder

No, I tried some cumin seeds that were many years old, and while it required about double the amount (IIRC), it still worked...The cheap no-name ground cumin bought in Canada worked for me.

Makes me wonder if it isn't something other than the cuminaldehyde if that degrades so easily.