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Crashing seems to have stopped & energy has increased

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Mary, Mar 21, 2015.

  1. Mary

    Mary Senior Member

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    It seems too good to be true but after 16 -1/2 years of faithful crashing, I seem to have stopped crashing as of a few weeks ago. My stamina has increased. I don’t know what my limits are now, whether or not I will still crash if I do enough, as I’ve been fighting a sinus infection now for almost 5 weeks so that is limiting my activities - exertion seems to cause me to relapse with the infection, but I’m not crashing like I did before. So I’m able to do more than my prior limit of 3-1/2 hours of very light activity a day. I’m walking faster, basically don’t have to count my steps when I go to the store, just have more energy in general, but then the sinus infection will flare up often in the afternoon and I have to rest, just as before. But then I will get some energy back after resting, which never used to happen and instead would be on a downward spiral into a full-blown crash.

    I think branched chain amino acids and l-glutamine are primarily responsible for this. Here are some links about this:

    http://www.ncf-net.org/forum/Fword.htm
    http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=41341
    http://jn.nutrition.org/content/136/2/544S.full
    http://www.ncbi.nlm.nih.gov/pubmed/11310928
    http://www.sportsci.org/jour/9901/rbk.html

    I’m working on boosting my immune system with AHCC, inosine, Echinacea and vitamin C. The inosine has boosted my energy. Dr. Chia told me to take it after equilibrant did nothing for me. When I first tried inosine maybe a year ago, it did nothing for me, but I retried about 2 weeks ago and was very pleasantly surprised by the energy boost.

    However, I’ve just had a bout of diarrhea and subsequent fatigue and feeling sick after about a week of taking two 500 mg caps of AHCC a day, so am cutting that out for a few days and maybe will restart with one cap a day.

    I think the BCCAs and glutamine may be very important for at least a subset of people with CFS (SEID). I first started the BCAAs (which had glutamine added) last November, and crashed a few days later, but my recovery from the crash was maybe 30% or 40% quicker than usual - I had never recovered that quickly before, so I’ve taken them ever since and also take l-glutamine. And it seems to have been a gradual but definite road to improvement ever since.

    Very very briefly, other things I’ve done (and some of which I still do) which I think were very important are:

    Drenatrophin PMG for very weak adrenals (initially had to take a high dose - about 4 x the amount on the bottle, I don’t think a smaller dose would have helped at the time)

    Pantothenic acid for adrenals
    Armour thyroid or equivalent
    Methylcobalamin and methylfolate
    Potassium - 1000 mg. a day
    B6 - P-5-P - 125 mg. a day in divided doses

    I take a ton of other supplements too, including magnesium of course, but the above ones seem to have made the most difference for me.

    I did a major liver detox in 2003 - one glass of wine would make sick for an entire day, 2 glasses would make me sick for 2-3 days. My chiropractor who does muscle testing helped me with the detox, it seemed I had a build-up of toxins from a job I’d had when I was 19 and had heavy exposure to chemical solvents. After the detox my alcohol intolerance disappeared and my digestion in general improved by a huge amount. I also have taken milk thistle ever since to support my liver.

    The chiropractor also gave me AF Betafood for my gallbladder when it was inflamed (magic stuff! Really really good for the gallbladder), and I eventually learned I had to take HCL with meals and this helped my liver and gallbladder too. My liver and gallbladder problems seemed related and both resolved around the same time.

    I eat almost no wheat or dairy or sugar, haven’t for many years. My diet has been very good for a very long time, but it wasn’t enough.

    So I’m hoping I can get my immune system functioning better, am just very curious to see exactly what my limits would be if I weren’t sick so much. Also, I know I am extremely deconditioned from all these years of inactivity and am aware it will take time to strengthen my muscles and build up stamina.

    One more thing - I used to have a terrible time with detoxing (even after the liver detox). I believe it was from mercury (I had around 8 or 9 mercury fillings removed in the late 1990's). Anyways, up until just recently several things would cause often severe detox symptoms (spaciness, fatigue, trouble concentrating, appetite off), including glutamine, insositol, and glycine, all of which are involved in phase II liver detoxification. Also chlorella, far infrared sauna, foot detox bath, apple cider vinegar, cayenne, I’ve lost track of everything that made me detox, but it didn’t take much and my detox symptoms were very strong. And now the detoxing has stopped. I’m tolerating those amino acids now.

    I recently had the Quicksilver mercury tri test done and it said my detox systems are working great - but I know they weren’t until relatively recently and I don’t know if the BCAAs affected that as well. I did do Andy Cutler’s protocol for several months a couple of years ago but it got too hard to do. Perhaps the BCAAs, in addition to helping shift my metabolic pathway to the Krebs cycle (which I am assuming is what has happened), are also helping to shift my immune system away from Th2 dominance which may help with detoxing, I’m not sure. I thought I read this recently but can’t find it.

    This is not as brief as I meant to make it, but it’s been a very long, complicated journey and I know I’m leaving out things.

    So I don’t know if the BCAAs and glutamine would have been as beneficial if I hadn’t addressed my weak adrenals, thyroid, toxic liver, poor digestion and taken all the other stuff above. No way to tell actually. I do know I would have been much worse off without my chiro who sorted out several digestion issues (there were even more than I listed) and helped my adrenals.
     
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  2. halcyon

    halcyon Senior Member

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    What is your dosing schedule like for the BCAAs?
     
  3. Mary

    Mary Senior Member

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    When I first started BCAAs last November, I was taking MRM BCAA+G (glutamine), 6 capsules on an empty stomach, twice a day - first thing in the morning and late morning before lunch. Each 6 capsule serving had 2500 mg. leucine, 1500 mg. valine, 1000 mg. isoleucine and 1000 mg. glutamine. I took that dose for several weeks I think - I didn't keep records - and gradually cut back, and now am taking Aro brand BCAAs by Vitacost, 1500 mg. leucine, 750 mg. isoleucine and 750 mg. valine (3 caps) twice a day, and 1000 mg. glutamine (now Foods) twice a day. I've been doing this for several weeks.
     
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  4. jeff_w

    jeff_w Senior Member

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    @Mary - That's wonderful!

    Do you think having retired two weeks ago has something to do with it, in addition to all of the supplements?
     
  5. nandixon

    nandixon Senior Member

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    That's great @Mary! Are you taking any antibiotics for the sinus infection, and if so which one?
     
  6. Hip

    Hip Senior Member

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    Very interesting stuff, Mary.

    Just for reference purposes, for others reading this, a number of different PEM/crash-preventing supplements are listed in this post. In summary, these PEM-busters that help prevent crashing are:

    PEM-Busters:
    Sodium bicarbonate ¼ teaspoon
    Creatine monohydrate 2 grams (or creatine HCl, which may be better).
    Citrulline 1000 mg
    Q10 400 mg
    Catalase 600 mg (taken after exercise)
    Branched chain amino acids 5 grams

    It might be a good idea if more ME/CFS patients started investigating these PEM-preventing or mitigating supplements, so that we accumulate more knowledge and understanding in this area. PEM prevention seems to have had very little scientific research devoted to it, so this research is something that patients themselves could develop.

    PEM/crashing from physical exertion is a major limiting factor for lots of ME/CFS patients, so if a supplement regimen can be found which effectively mitigates or prevents PEM, this would be of significant benefit. That's why it is worth investigating this.



    In my case unfortunately I cannot take part in the investigation, as my PEM is caused by mental exertion rather than physical exertion (I can run a mile without problem, but just 3 or 4 hours of light social conversation will leave me exhausted the following day). I have yet to find any reliable supplement that mitigates my mental exertion PEM well; though I keep trying different supplements experimentally, taken just before I do some socializing.
     
    Last edited: Apr 28, 2015
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  7. SOC

    SOC

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    Just curious... have you tried LDN, yet?
     
  8. Hip

    Hip Senior Member

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    I did try LDN on several occasions, but I never seemed to obtain any benefits that I noticed. I did not experience any side effects either, though, except for a mild worsening of the anhedonia symptoms that I have. I took around 4.2 mg of naltrexone each day before bed.

    It's still a bit of mystery to me how just talking could create such exhaustion the next day. If I do a more introvert and relaxing activity, such as spending 12 hours all day long reading or writing on the computer, this does not cause any PEM. My hunch is that talking and socializing may increase brain arousal, and it is the sustained arousal that is fatiguing. Arousal is linked to norepinephrine.
     
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  9. Mary

    Mary Senior Member

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    Jeff - I don't know what you mean by having retired 2 weeks ago - I stopped working in 2001 because of CFS. I've crashed faithfully ever since (actually I started crashing in 1998). My life has been extremely limited ever since. The main difference I'm doing now are the BCAAs and the glutamine.
     
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  10. Mary

    Mary Senior Member

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    Have you tried the BCAAS and glutamine? My crashing was affected by stress, working on the computer, talking to people on the phone, as well as physical exertion.
     
  11. Mary

    Mary Senior Member

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    Thanks! No, no antibiotics - I know my immune system is weak - I got sick every time I crashed with some type of sinus infection. I think it probably has to do with Th2 dominance. So I'm trying the supplements I mentioned above, hoping to strengthen my immune system. Actually the sinus infection is better, now it's primarily background noise, not interfering too much, so hopefully all the supplements are helping.
     
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  12. jeff_w

    jeff_w Senior Member

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    @Mary - I'm so sorry! When I read:
    I read "retried" as "retired," and I was very confused. But now I see you were talking about retrying Inosine, not about retiring.

    It's so good to read that you've improved!
     
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  13. Mary

    Mary Senior Member

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    @jeff_w - :p Got it! (I do the same thing a lot, very easy to do!)
     
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  14. lansbergen

    lansbergen Senior Member

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    Has your gait become more supple?
     
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  15. taniaaust1

    taniaaust1 Senior Member

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    Seeing you had (and still have) a sinus infection limiting your activities (causing you also to need to bed rest in afternoons which you may not be currently doing otherwise).. I'm wondering if the sinus infection limiting what you can do, has played a factor in your improvement.

    Don't underestimate how a period of doing less can help bring one up to a new baseline level to which then other things may be more likely to help then before. Maybe your body needed to be resting more at the levels you were at. I had my remission through aggressive rest therapy.

    I think many though they cut back on activities due to this illness, may not realise the degree they may need to cut back to stop crashing at whatever level they are at and this keeps some in the pattern of crashing a lot of the time. As baseline improves, one can do more without issues.
     
    Last edited: Mar 21, 2015
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  16. Mary

    Mary Senior Member

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    @taniaaust1 - you make a good point but I don't think it's applicable here. I was resting a lot before, to avoid crashing. If I stopped doing things after 3-1/2 hours of light activity, I had a good chance of not crashing. But my stamina or endurance never increased no matter how much I rested. I was never able to exceed that amount. I was sick a lot also, getting sick each time I crashed, it would take longer to recover from being sick than from the crash, and all that resting while sick never increased my activity threshold. And I spent a ton of time, days at a time, doing nothing.

    Seeing how much quicker I recovered from a crash aftertaking the BCAAs for a very short while is, I think, significant.

    If you read about BCAAs and glutamine, you'll see how they are supposed to help with exercise recovery. Also, the articles I linked talk about this in the context of CFS, it has to do with leucine/tryptophan ratio, it's really rather interesting. I'm just very surprised that it's not more widely known. And if crashing is caused because we are using the wrong metabolic pathway (primarily glycolysis) and the BCAAs are able to switch this back to the Krebs cycle according to at least one of the articles, it makes sense they would help stop crashing.
     
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  17. Hip

    Hip Senior Member

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    BCAAs are on my list of things to try, to see if they might help reduce my mental PEM. I have already bought some BCAAs for this purpose.

    I tried sodium bicarbonate, creatine monohydrate and citrulline for my mental PEM, but these did not seem to help.

    But I imagine that supplements like sodium bicarbonate and citrulline will tend work best for physical exertion PEM, since these supplements neutralize the lactate produced by muscles during exercise, and lactate, which crosses the blood-brain barrier easily, has been shown to release inflammatory sickness behavior cytokines in the rat brain. 1

    Creatine monohydrate I find does help directly reduce my brain fog a bit though.

    The only supplement I have found so far that does reduce my PEM a bit is Q10 at a dose of at least 400 mg.



    @SOC
    Are you still taking the high dose coenzyme Q10 on occasion in order to reduce your PEM (as you detail on this thread), and is it still working for you?
     
    Last edited: Mar 21, 2015
  18. taniaaust1

    taniaaust1 Senior Member

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    resting cause of a ME crash doesn't at all help raise a baseline.. it needs to be additional resting. Hence why I'd wondered if having an addition problem forcing one to rest when not part of the ME helped esp when combined with taking other things on top.

    nods.. I didn't mean to sound as if it didn't, Im sure whatever you do and feel like has helped. Thanks. Your post has been interesting to read about the BCAAs and glutamine as they are things I haven't as yet trialed. I think I may of had a rare double copy of something which affects leucine on my DNA tests (I know I had some double mutations of AA stuff).
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    I really wish I could remember some of how those things like Krebs Cycle works. I studied biochemistry 1 and 2 at Naturopathy collage but the ME has wiped my brain of how all this works.

    I wish someone could put a very easy to understand thing here on how the whole thing all works.

    Here's an easy to understand diagram of where Krebs cycle fits with other things (glucose, ATP etc) for those who have been following this thread and now wondering http://www.phschool.com/science/biology_place/biocoach/cellresp/overview.html
     
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  20. SOC

    SOC

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    Yes, I'm still taking high-dose (1200mg) CoQ10 and it seems to be reducing the PEM, although I haven't tried going off for a while to see if I have more PEM without it. I just can't afford that experiment at this time.

    I still have some major cognitive dysfunction, but I don't have the same degree of mental fatiguability I used to have and I don't seem to PEM from mental exertion anymore. Not that I do any mental heavy lifting these days. :(

    My doctor wants me to try a 4-day rotation diet to see if it will help with the cognitive problems. :eek::wide-eyed::grumpy: I am NOT looking forward to it as my life is already complicated enough, but I'm willing to give it a try. If it improves my cognitive function significantly, then it will be worth all the hassle.
     
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