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Possible PEM Blocker

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

  1. hamsterman

    hamsterman Senior Member

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    I think potential Pem-
    Very interesting. I would like to add my two cents here, for those who are experimenting with this, especially for Wishfull.

    Does Cuminum act as 1) PEM sheilding (ie PEM prevention) or is it a 2) PEM reducer? (ie, reduces severity and duration after the exertion has already occured.)

    Example of PEM reducer: CoQ10 does seem to help with PEM severity and duration, and it works well after the exertion, but I've taken loads of it before a social engagement, and I still get PEM afterwards.

    Example of PEM shielding (prednisone, which I take every Sunday)
    After I take prednisone (or equiv potency of hydrocortisone), and I do anything afterwards (and I do mean anything) that would normally cause PEM, I never get PEM. BUT... if I take prednisone AFTER the exertion, it does absolutely nothing.

    From what Wishfull is saying, it sounds like it may be PEM shielding, which is super valuable to me, and If that is the case, I would love to use it as an alternative to prednisone, since corticosteroids have long-term health consequences.

    I'll be ordering it shortly, but will be curious of other people's experiences with it.
     
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  2. Hip

    Hip Senior Member

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    That is a very interesting and important distinction that you have made: whether a supplement or medication that reduces PEM is either a:

    (1) PEM shielder — helps prevent PEM occurring only when taken as a prophylactic before you engage in the physical or mental exertion

    (2) PEM reliever — mitigates the severity and duration of PEM only when taken after the exertion has already occurred, where the PEM may already have begun to appear.

    I have added a new section in the first post of my thread on "PEM Busters" regarding this important distinction. (I have renamed your term PEM reducer to PEM reliever, so as not to create confusion with the title of my thread, which refers to supplements that reduce PEM. So perhaps term PEM reducer can denote any medication that has beneficial effects on PEM, and then further divide PEM reducers into PEM shielders and PEM relievers.)


    Have you tried many of the PEM reducers detailed on my "PEM Busters" thread? If so, do you have an idea which of these supplements might be PEM shielders, and which might be PEM relievers?
     
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  3. hamsterman

    hamsterman Senior Member

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    I've tried most of them, and I still use BCAA, COQ10, Creatine, and baking Soda. I think they have benefits for me. for me, I don't believe they act as PEM sheilds... but they might offer a very slight improvement in allowing more physical exertion before reaching my AT (Anaerobic Thresh-hold). So potentially pushing up the energy envelope (very slightly). But for me PEM shielding basically means, stopping the inflammatory reaction to exertion altogether... basically making the AT an irrelevant number. Its a holy-grail for us.

    One additional thing... testing for genuine Pem sheilding is quite an undertaking. Because I'm basically saying, 'Im going to over-exert myself, knowing that if the I'm not shielded... I will spend the next several days in excruciating pain. So, I think very few people want to do this type of testing. With corticosteroids.... I was unbelievably nervous while I was pushing beyond what normally causes PEM. I've gotten over that now... but I am very wary to try new things for shielding purposes, because if they don't work... Im in a world of pain. However... if there is something coming up which is unavoidable... like a doctor's visit... which you know will cause PEM... then that becomes a good opportunity for testing.
     
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  4. hamsterman

    hamsterman Senior Member

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    I think there is some research/science behind this, but its all very confusing.

    A really simplistic explanation: High-dose Corticosteroids are immunosuppressive and extremely powerful anti-inflamatories. For us, the biggest inflammatory trigger seems to be exertion. So stopping the inflamatory response to the exertion before it happens seems to make sense. But I understand its all much more complicated than this. But I do remember hearing that there was some sort of trial with immunosuppressants and CFS/ME, but I don't think it involved Corticosteroids... I think it involved Humira... which I know for a fact doesnt stop PEM... and many people I know who are on it for other AI issues still have severe ME.
     
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  5. Wishful

    Wishful Senior Member

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    I'm not sure yet just how the cumin is working. When I did the chainsawing, I 100% expected serious PEM. It didn't occur, and I noticed that I had taken cumin the day before that. I was PEM-free and feeling better than usual for those eight days, so it seems to work for me as a shield and possibly as a baseline symptom reducer. Since my PEM shows up 24 hrs after exertion and usually doesn't last more than a day, it would be difficult to test how well cumin works after the PEM symptoms appear. The effects aren't immediate, so I'd say it isn't a very useful reliever.

    I delayed further testing due to driving to town, which worsens my symptoms in a less-reliable way than sawing wood. I've done some wood sawing over the last couple of days, and that did indeed trigger PEM, which showed that the earlier cumin seed effect has worn off. Yesterday I had some more cumin (and sawing). I'm feeling a bit better than normal this morning, so it might be reducing baseline symptoms. I'm waiting to see if PEM symptoms show up later today. I'll also do some more sawing.
     
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  6. gregh286

    gregh286 Senior Member

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    yea, prednisone will block PEM in me, but need to take day before. Needs 12 hours beforehand at least to do the trick. Makes our body energy cycle better for whatever reason, hence PEM reduced.
    Good if you have a "must" attend event, wedding etc, can pop 20mg day before.
    Will try cumin.
     
    Mel9 likes this.
  7. Wishful

    Wishful Senior Member

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    Has anyone else here found that prednisone works as a PEM blocker or reliever? Just curious. I don't think I'll bother to try to get a prescription just to block a few hours of PEM, and it's likely that I can just reschedule a PEM-inducing activity to avoid a 'must' attend event. Some nice things about cumin for this is that it doesn't require a prescription, is cheap and it doesn't expire either (the batch of seed I've been using is maybe 10 years old). If I'd noticed the effect from an expensive and difficult to obtain drug, I'd have done more experimenting before reporting it. Since cumin is safe and simple, I decided other people might like the choice to try it now, rather than weeks or months from now.

    I didn't feel PEM yesterday, and also didn't feel the perceived muscle aches that I normally feel. Felt a bit better than normal, I think. Still feel that today, so I think it's continuing to block PEM and reduce baseline symptoms a bit. I'll keep updating how it goes. I measured two teaspoons of cumin this time. Next time I'll try half a teaspoon.
     
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  8. Wishful

    Wishful Senior Member

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    Well, this cumin test only lasted 2-3 days. I started feeling lousy again partway through the third day. Now, does this mean that 2 tsp = 2+ days and 4+ (I didn't actually measure the first time) = 8 days, or does it mean that each attempt gets less effective, or something else entirely? I'll wait a couple of days to make sure of my baseline before trying again. I think I'll try three or four tsp instead of half of one. I sure hope it's not a diminishing effectiveness per dose.
     
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  9. hamsterman

    hamsterman Senior Member

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    Glad to see someone else who has experienced the 'shield' as I do. And I do think 20mgs is probably better than 25 (which I take)

    Do you take you take prednisone or prednisolone? (with an 'l') I take the latter... and I've heard they are identical... except predniso'l'one converts quicker and is more readily available since it doesnt have to be metabolized.

    I say this because you say it takes 12 hours for it to shield.... but for me... I wait about 70 minutes... and then I do an extreme cardio with no PEM. (just did this 2 days ago, and I've been doing this weekly for several months.)

    I don't want someone to try this strategy... and then have it back-fire, because of taking it at the wrong type, or at the wrong time. I want to make sure HIP knows about this as well, since he is including this in his thread of PEM blockers.

    A little edit here, found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2850127/ Avg time to peak for prednisi'l'one: 1.3 hours, with prednisone (no 'l'), 2.6 hours. Also... there is a lot of variability to this... since certain people metabolize at different rates, depending on their liver. Also.. there are delayed release versions of prednisone too.. which delay delivery over 6 hours. Also... I've heard biological half-life varies quite a bit... avg is 24 hours... but for some.. it could be as long as 40 hours.

    Also... I was wondering if you know if your ME was originally triggered from an infection, or from an autoimmune issue?
     
    Last edited: Dec 11, 2017
  10. hamsterman

    hamsterman Senior Member

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    You are right about the prescription, and safety issues... but its super-cheap. I can try to find a list of users/posts who use the predno-shield method. I now have seen 4 others including myself.. so 5 total. 2 of them where in a different forum though... one on facebook I think. Again.. I'm the only one who does it weekly.

    When I first brought it up to my doc... I said I just needed a break from the PEM, for a few occasions... and he was fine... and I think most doctors would be. But when I told him about using it weekly, he was initially apprehensive... and I understand why. He only agreed to it if I did very frequent blood-work, and he monitored me closely. He wants to make sure it doesnt affect my HPA axis (which it hasn't... at all)... and that I don't start getting typical long-term coticosteroid side-effects... which I haven't. I have had a tiny increase in acne though... (which is nothing compared to what I went through for a 2 week regime to stop a Cronh's flareup)... but other than that... nothing. In fact... my doctor was really shocked at my last physical. Everything was better... across the board. But again... Im always looking for a a healthier alternative.

    But keep experimenting with the cumin. Even if its only a PEM symptom reducer... that is still very valuable. I've ordered some as well. I'm interested to see what others say.
     
  11. Wishful

    Wishful Senior Member

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    I'm a bit surprised that people 'order' cumin. Most grocery stores should have little packages of it. Indian (and Mexican?) stores likely have it in bulk.
     
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  12. hamsterman

    hamsterman Senior Member

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    lol, I order everything. Once nice thing of living in Los Angeles.. is they have a delivery service for everything, including fresh stuff... which is great for people like me.
     
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  13. Wishful

    Wishful Senior Member

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    I see that I'm really out of touch with modern urban life. I've been out in the woods for over a decade, going in to a small town every three weeks or so. I haven't even been in a large city for maybe five years. I've just trimmed my life down so that I don't need much. If I went in to Edmonton, I'd probably feel like a caveman looking around in shock. :wide-eyed:
     
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  14. Runner5

    Runner5 Senior Member

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    PNW
    A few people have posted about BCAA's -- I usually take BCAA, Magnesium, L-Glutamine afterward and have a sport drink during like Vega Sport. The combo usually allows me to work out, or it did until recently. It doesn't cure anything, and I still have joint breakdown and pain and stiffness that requires a lot of super gentle Yoga. BUT -- I don't get PEM typically if I adhere to that combo. My last workout I was just visiting a gym on a free pass, barely did anything but test a machine out and was in bed for two days. Ugh!

    I have had issues with my joints calcifying over. I lost the use of my right shoulder and had trouble with right ankle and now both hips particularly the left and my neck and most of my spine. The doctors are pretty mystified. I am a little worried it might be from the supplements I've taken having a very bad GI. When I went for the CAT scan they could not get my arm above my head, a young fellow thought he could put his weight against it and force the issue, which was incredibly painful and also did not work.

    As a runner, I really just want to be active again. I want to be outside and doing things.

    My hips have been too bad for me to attempt much other than walking, and at times that has been very painful and taxing -- however I do plan to go back to working out whenever I feel up to it in the future. *fingers crossed*
     
  15. hamsterman

    hamsterman Senior Member

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    I was actually quite a serious runner back in the day.... had a scholarship and everything. The first thing people say when I tell them about my situation now is.... 'but you were such an athlete...' I developed bursitis (because of poor technique early-in), which seriously affected my hips... and I had to stop playing basketball, and a few other sports because of it. But interesting thing is... I completely forgot about it over the last 10 years, (ever since my ME got worse)

    I would just say that if you have ME (ie exertion intolerance)... which it sounds like you do... be 'super' careful. Because athletes (or former-athletes) often are more tempted to 'push it' beyond their anaerobic threshhold (AT). You need to tattoo that number on your arm... become intimately aware of it.... so that you never ever go above it... especially when you get that burst of adrenaline that often teases you to push. I think if you train with that mindset....(and assuming your AT isnt already too low... like it is for many of us), I think you can potentially be somewhat active again. Oh, and back to your question...BCAA, (and creatine for me)... seem to allow me to do a 'tad' bit more without pushing past the AT... its very subtle... but its something.
     
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  16. Wishful

    Wishful Senior Member

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    My most recent trial was with 4 tsp of cumin seed. I remained PEM-free (and lower general symptoms) for six days. Three tsp lasted only 3 days. The days when it failed just happened to be the days following a day when I didn't go for a long walk, so I wondered if that was a necessary factor, but it seems to have been just a coincidence. Now I'll try to figure out the minimal and optimal dosage, and hope that it doesn't stop working if I take it too often.

    I had been going for hour-long walks without problem. Well, the -30C weather made extra clothing necessary, and I think my nose was at risk of frostbite, but other than that it was nice.
     
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  17. Mel9

    Mel9 Senior Member

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    I have continued to take 1 teaspoon cumin seed a day as a tea and still haven't had a PEM episode. I am being careful not to overdo exercise though.
     
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  18. Wishful

    Wishful Senior Member

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    I'm glad it's working for you too, and that it hasn't stopped working. As for exercise, I've been doing things daily that really should have caused severe PEM, but avoided it entirely. When the most recent cumin wore off, the PEM was really bad from the same activities that hadn't caused problems after doing them on previous days. I'll have to keep doing PEM-activating activities to determine the duration of different dosages, but I'll be glad to know when to stop doing them before a dose wears off. After enjoying those PEM-free days, yesterday's PEM really, really sucked.
     
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  19. gettinbetter

    gettinbetter Senior Member

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    Following
     
  20. Wishful

    Wishful Senior Member

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    Instead of just following, you could give cumin a try and report on whether it has any effect for you. I should post about cumin in the main forum, since many people don't read all the sub-forums, but I've been waiting to get more of my experimental findings, and for a few other people to report whether it works for them too (or has side-effects or whatever). I had 1/2 tsp today, to see what effect that has, and will do some PEM-inducing activity to see if that is effectively blocked.
     
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