Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Possible PEM Blocker

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Wishful, Nov 20, 2017.

  1. Wishful

    Wishful Senior Member

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    Half a tsp has a different effect than a full tsp. Half still seems to provide 100% PEM blocking, but doesn't have the full baseline symptom reduction that the larger dose has. It's hard to clearly identify PEM from elevated baseline, but the PEM should vary more during the day.

    Doses over 1 tsp don't seem to provide greater benefit; just several days longer duration. I think it would be better to take 1 tsp every three days than 4 tsp for six days.

    I'll wait for the PEM to clearly show up, then maybe I'll try 3/4 tsp, just to see the difference.
     
  2. Wishful

    Wishful Senior Member

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    I tried 1/3 tsp just on a whim. Didn't seem to be at all effective. Since that didn't work, I tried 1.5 tsp, followed by some hard physical activity that caused sore muscles. I don't feel great (sore muscles, after all), but I don't think I'm feeling PEM symptoms. I definitely feel less brainfoggy and more energetic than I did during the 1/3 tsp trial, and I think it's less than during a period with no cumin.
     
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  3. lior

    lior Senior Member

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    Hey, I just love it how people can come together here to do these little experiments.

    Next time I'm able to cook, I will cook some kind of tomato sauce with cumin, and I'll make sure it's not old stuff.
    If I make 3 portions, and put in 6 tsp, that will be 2 tsp per day.

    I wonder if there's a difference chemically between cooking with cumin and having tea with brewed cumin seeds?

    I don't think I'd like cumin pancakes!

    I have to travel once a week and that always gives me PEM. Would you advise, for the sake of the experiment, to eat the cumin dish 3 nights in a row starting the day before the activity that will induce PEM, or on the day? Or something else?

    Any other advice to keep some scientific constants with you? (Bullet points if possible please :) )
     
  4. Wishful

    Wishful Senior Member

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    I was running low on the old bag of cumin seeds, so I bought some packaged ground cumin (no seeds to be found). While ground cumin may not last as well as whole seeds, I discovered that the packaged ground cumin was significantly more potent than freshly-ground 10 year old cumin seeds. ;) One and a half tsp of the new stuff blocked PEM for six days, as opposed to I think it was 4 days from 3 tsp of the old stuff. More experiments to be done with smaller amounts of the fresh stuff...

    I think cumin is having less reduction of the general symptoms as it did from that initial dose (okay that was a larger amount, so that may be the reason), but it's still blocking PEM. When this last dose wore off, the PEM was _really horrible_, so I've extremely grateful that it's still working as a PEM blocker.

    Cumin was effective cooked in curry, so it should be fine in tomato sauce too. I don't actually like cumin/flax pancakes myself, but I thought it was reasonably healthy as a food. My cooking options are quite limited due to reactions to quite a few foods, so pancakes (with no sugar or toppings) are a frequent part of my diet. *sigh*

    Having the cumin the day before a PEM-inducing activity works for me. No need for follow-up doses until it stops blocking PEM (for example: six days for 1.5 tsp). I'm not actually sure how effective it is at blocking travel-induced PEM. I felt lousy the day after my last trip to town, despite cumin, but maybe those weren't true PEM symptoms. I plan to take more careful observations the next few driving trips.

    Scientific constants? If you mean minimizing variables in an experiment, just minimize variables. If you want to test whether cumin blocks driving-induced PEM, go for a drive, but don't also go shopping, visit a friend, eat in a restaurant, etc. Don't fail to do an otherwise daily activity either. I'm trying to keep my general PEM-induction-testing activity to going for a 45-minute walk that includes a standard set of (somewhat painfully muscle straining) arm exercises. The walk doesn't induce PEM, but the arm exercises definitely do, unless the cumin is still working. I probably should go for an otherwise pointless drive (not for errands in town), just to test whether it's the driving that induces PEM.

    I eagerly await the results of your testing. I sincerely hope that it does work for you. I consider cumin to be practically magical in its effectiveness at blocking my PEM.
     
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  5. Wishful

    Wishful Senior Member

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    Well, so far cumin doesn't seem to be effective against the increase in symptoms following a drive and social contact. I took cumin two days ago (.75 level tsp), and yesterday drove for an hour, socialized for a couple of hours, then drove back. Today I feel weak, sluggish, sore, and overall bleh! Maybe the symptoms caused by such activities are not actually PEM.
     
    Mel9 likes this.
  6. Mel9

    Mel9 Senior Member

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    Two different types of PEM?
     
  7. Wishful

    Wishful Senior Member

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    Maybe two types. Maybe heightened mental activity triggers it in a different way than physical exertion does. I'm feeling PEM today from a drive yesterday, and it seemed to be around 24 hrs after the drive, which I'd followed a few hours later with a walk and PEM-triggering arm exercise routine. I have yet to figure out whether the trigger from driving is mental activity or just holding my arms up on the steering wheel.
     
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  8. Wishful

    Wishful Senior Member

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    I've just spent the last two days shovelling snow: over 30 cm of dense snow. No PEM, thanks to cumin. This time I did some arm exercises in the afternoon that should have caused PEM, then took the cumin (lvl tsp) 19 hrs after that. I felt a bit lousy that day, from sawing and shovelling before the exercise, but around 24 hrs after the exercise, I started to feel a bit better rather than worse.

    It certainly needs more experiments, but it looks like the blocking effect occurs within hours after the cumin, and quite long after the PEM-inducing activity. I think interferon-gamma might be involved in the PEM process, since it rises sharply around 24 hrs after physical activity, and fits with my observations linking kynurenines with ME symptoms severity.
     
  9. Wishful

    Wishful Senior Member

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    Cumin does not seem to affect the increase in symptoms that result from driving/socializing. I've taken cumin before my drives several times now, and I've always felt worse the next day: aches, lethargy, brainfog, malaise; total bleh! If it was PEM induced by muscles strain (holding the steering wheel) the symptoms increase shouldn't occur until later the following day. What does occur does so upon waking. So, two different types of PEM, or the driving one is only PEM-like, or it is PEM following a different biochemical pathway? Not sure.

    Half a level tsp of cumin seems to work well, with the PEM blocking lasting three days.

    After the strenuous snowshovelling, I didn't have the typical PEM symptoms, but I really, really didn't feel like doing any sort of work the next day, or the day after that. Just no energy. I was trying to remember what was normal for healthy people: do they feel that sort of fatigue for a day or two after such effort? It's really sad that I can't remember. However, sometime during the day some neurons decided to communicate and suggested that I check my diary. Sure enough, the fatigue set in 21 days after my last boost of T2. I took my T2 and the fatigue went away. I avoid tracking when the 21 days is up, because I want to avoid psychosomatic symptoms from expecting symptoms. Suffering a day or two of fatigue is a reasonable price to pay for keeping track of what is actually happening in my body.
     
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  10. Wishful

    Wishful Senior Member

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    Update: half a tsp seems to be only marginal in effects. It blocks PEM effectively, but the reduction of baseline symptoms isn't reliable. Sometimes it is as effective as 1 tsp, other times not. Since it's cheap and lacks nasty side-effects, I'll use 1 level tsp as my minimum. It's interesting that cuminaldehyde has a threshold action, rather than a dose-dependent action. That should mean something to a biochemist.
     
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  11. PatJ

    PatJ Forum Support Assistant

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    Healthy people wouldn't have that kind of fatigue. Before ME I used to walk 3K to work, work all day, walk 3K back, shovel my driveway, take my dog for a 2K walk and then do it again the next day. A healthy person might feel a little tired after intense shoveling but should recover after sitting with a cup of tea for awhile. :)
     
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  12. Wishful

    Wishful Senior Member

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    I suppose I should have realized that through logic: stories of soldiers marching all day for weeks/month, people harvesting crops by hand day after day, etc. Hard to really remember it though, personally. There were lots of times during this disorder that I wished our bodies came with reliable internal scales for pain, fatigue, etc. Something for genetic engineers to add in designing human(2.0).
     
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  13. 1gooddog

    1gooddog Senior Member

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  14. 1gooddog

    1gooddog Senior Member

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    I am curious to hear of other results.
    I was curious about using a cold pressed oil version.
    For me certain seeds, flax for example, don' seem to digest properly.

    As far as feeling relief and being active when there is even an hour of remission is how I have lived for years. I just can' seem to stay down, give in and let this completely overtake my life. Even if I have to pay the price the next day.

    As I am today. Nice outing yesterday morning and it was worth it.
     
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  15. gettinbetter

    gettinbetter Senior Member

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    Good Question
     
  16. Wishful

    Wishful Senior Member

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    My guess is that cumin interferes with the metabolic chain between cytokines and perceived symptoms, so I think it also blocks any sort of imbalance that could cause a crash. Does overexertion cause worsening of ME/CFS symptoms aside from PEM? I don't know. My personal observations say no. I've done physical activities that-based on previous experience-should have caused severe PEM, but with cumin I felt fine the following days. I still don't feel 'well' or 'healthy', because the baseline symptoms of lethargy, aches, brainfog, etc are still there, but strenuous activity doesn't worsen them.

    I've avoided taking drugs that merely mask ME/CFS symptoms because of the danger of hiding those warning signals. Also, those symptoms let me notice things that affect the severity, allowing me to minimize them, and reveal things about ME/CFS. Cumin seems to be preventing whatever processes cause the symptoms, rather than just countering or masking the symptoms.

    If cumin does block your PEM, keep track of your other symptoms following physical exertion, to see if it worsens them. For me, cumin allows me to do more things without suffering.
     
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  17. Runner5

    Runner5 Senior Member

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    I did find a brand of organic cumin that is awesome on veggies and I eat it about every day now :D I didn't really like Cumin before but this new brand, using it on everything.

    I always feel better after a nice walk - wish I could do that more often.
     
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  18. drob31

    drob31 Senior Member

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    What brand is everyone using?
     
  19. Runner5

    Runner5 Senior Member

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    I'm using Spice Islands -- but what I've noticed is that you get what you pay for with spices. I had to invest in something a lot more expensive to get that good robust flavor. Of course, figure there are supplements and other ways of taking it. I've been eating a ton of veggies lately so it's great for that. I have acorn squash spiral noodles - put a bunch of cumin on them with some other veg' -- good time.
     
    1gooddog likes this.
  20. drob31

    drob31 Senior Member

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    T2 as in the thyroid hormone? Is that easy to find?
     

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