Crashing seems to have stopped & energy has increased

[Mary]

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).

I see what you're saying about more resting, in addition to that which was required to recover from PEM. However, I did TONS of additional resting when I would get sick after crashing - I'd rest and recover from the crash and still be sick, and then have to rest several more days because of being sick, and none of that extra resting increased my energy or activity threshold. Being sick just made it that much more likely that I would crash if I tried to do something so I had to be extra careful when I was sick.

So now I've been fighting a bug for some 5 weeks and yet not crashing, and overall feeling better and having more stamina - so even though I've had to do additional resting because of the sinus infection (which is almost gone now), I don't think it's the cause of my increased energy and stamina. The additional resting I had to do before when I would get sick never increased my stamina or energy or lessened PEM.

 

[Mary]

Has your gait become more supple?

I guess it has, in the sense that it's easier to walk because I have more energy. If one is tired and has to walk, you go slowly. Also, I was always worried about conserving energy so even if I felt halfway decent, I would still tend to go slowly in order to conserve energy.

I didn't have a coordination problem - I guess I'm a little confused by what you mean by supple.

 

[Mary]

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

Here's a blurb from one of the articles I linked above. I have trouble with Krebs diagrams and understanding all the links. All I know is that the Krebs cycle represents aerobic metabolism and glycolysis is anaerobic and people with CFS tend to have inefficient anaerobic metabolism. So this little blurb I think is referring to these metabolic processes and how BCAAs can help:

"4. Branch chain amino acids may help CFS patients.
If the tryptophan to BCAA ratio is too high, neurotransmitters made from tryptophan increase, causing physical and mental fatigue.4 When patients first contract CF, the body activates a metabolic pathway that increases the rate of conversion of ATP to cyclic AMP, which is used for immune system stimulation. It seems that CF patients have difficulty turning this pathway off when it is no longer required. The inability to properly regulate this pathway leads to losses of ATP in times of inadequate production. Branch chain amino acids can down-regulate this ATP to cyclic AMP process.5 " http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=41341

I realize I have been dismissing your suggestions re pre-emptive resting. I have heard of people improving with "aggressive" resting, which I never really did - but I'm very glad it helped you. It might have helped me recover sooner - though I shouldn't use the word "recover" here as I am nowhere certain that I might be recovered, but I know I'm better. If I had rested more, in addition to resting after crashing and after being sick, it might have helped (though I think I would have had almost no time to do anything then , but still maybe it would have helped) And it probably would be good to keep resting even more than I want to .....

 

[lansbergen]

I guess it has, in the sense that it's easier to walk because I have more energy. If one is tired and has to walk, you go slowly. Also, I was always worried about conserving energy so even if I felt halfway decent, I would still tend to go slowly in order to conserve energy.

I didn't have a coordination problem - I guess I'm a little confused by what you mean by supple.

My gait has improved. I now land on my heels and push off with my toes. That feels more energetic. Before I could not do that, I landed on my whole foot and could not push off with my toes, When it was real bad I did not even lift my feet, I shambled.

 

[Mary]

My gait has improved. I now land on my heels and push off with my toes. That feels more energetic. Before I could not do that, I landed on my whole foot and could not push off with my toes, When it was real bad I did not even lift my feet, I shambled.

Okay, I guess I would say my gait has improved too - I'm bouncier now when I walk because I'm more energetic. Before it was more a matter of just putting one foot in front of the other, plodding.

 

[lansbergen]

Okay, I guess I would say my gait has improved too - I'm bouncier now when I walk because I'm more energetic. Before it was more a matter of just putting one foot in front of the other, plodding.

I assume we mean the same. English is not my first language, In dutch I call it veerkrachtig.

 

[Mary]

I assume we mean the same. English is not my first language, In dutch I call it veerkrachtig.

Yes, it sounds like we mean the same thing - shamble is a good word, similar to plodding. (your English is very good!)

 

[MeSci]

Where are you approximately, Mary? The reason I ask is that I also have an unusual condition at the moment affecting my sinuses. At first I thought it was hay fever, but then I started feeling symptoms that I think are like those of a cold or flu, neither of which I have had for many years. My nose has been burning, and intermittently stuffy and runny. That is the main symptom, but I've also had slightly itchy ears (not unusual), brief sore throat (not unusual), and slightly higher temperature than usual, although still a bit lower than the normal range or at the bottom of the normal range, and some unfamiliar body aches which are perhaps suggestive of a cold or flu.

I haven't had it for long (a few days), and am intrigued and a little excited. Like you, I have been ill for a long time, but following a leaky-gut diet for almost 3 years, hoping that eventually it might wind back the damage that has occurred over previous years.

Take it easy, as others have advised. I have been a bit naughty, having just told myself and others not to over-exert during an infection, and exerted a bit today, but hopefully not too much. I don't want to throw away a possible second chance to do the right thing.

 

[Mary]

Where are you approximately, Mary? The reason I ask is that I also have an unusual condition at the moment affecting my sinuses. At first I thought it was hay fever, but then I started feeling symptoms that I think are like those of a cold or flu, neither of which I have had for many years. My nose has been burning, and intermittently stuffy and runny. That is the main symptom, but I've also had slightly itchy ears (not unusual), brief sore throat (not unusual), and slightly higher temperature than usual, although still a bit lower than the normal range or at the bottom of the normal range, and some unfamiliar body aches which are perhaps suggestive of a cold or flu.

I haven't had it for long (a few days), and am intrigued and a little excited. Like you, I have been ill for a long time, but following a leaky-gut diet for almost 3 years, hoping that eventually it might wind back the damage that has occurred over previous years.

Take it easy, as others have advised. I have been a bit naughty, having just told myself and others not to over-exert during an infection, and exerted a bit today, but hopefully not too much. I don't want to throw away a possible second chance to do the right thing.

I'm in California. Someone told me recently that there is a nasty bug going around - only my immune system seems to be almost constantly fighting some type of sinus problem. But I am doing better than a week ago. I've read very good things about inosine and the immune system, plus it helps with oxygen utilization.

Good for you and your leaky gut diet! I hope you are making real progress - it is scary to get one's hopes up though. Yes, rest, rest and rest some more - when someone first mentioned pre-emptive resting to me, I got angry. It was the last thing in the world I wanted to hear.

I'm sure you know that glutamine is supposed to be very good for helping to heal a leaky gut, and also help with the immune system and energy.

So do you think that your immune system may be kicking in since you seem to be a little sick? Whereas I seem to be a little sick almost all the time, and would like to stop doing that!

 

[MeSci]

I'm in California. Someone told me recently that there is a nasty bug going around - only my immune system seems to be almost constantly fighting some type of sinus problem. But I am doing better than a week ago. I've read very good things about inosine and the immune system, plus it helps with oxygen utilization.

Good for you and your leaky gut diet! I hope you are making real progress - it is scary to get one's hopes up though. Yes, rest, rest and rest some more - when someone first mentioned pre-emptive resting to me, I got angry. It was the last thing in the world I wanted to hear.

I'm sure you know that glutamine is supposed to be very good for helping to heal a leaky gut, and also help with the immune system and energy.

So do you think that your immune system may be kicking in since you seem to be a little sick? Whereas I seem to be a little sick almost all the time, and would like to stop doing that!

I need to read all of this thread, although a lot of it is perhaps not appropriate for me and seems very complicated. More complex self-treatment seems easier to do in the US than here, as it seems easier to get tests done on request.

My leaky-gut diet has brought a lot of improvements, and it includes glutamine. I've summarised the regime and results in my profile.

The reason I wondered where you were was in case you might have picked up the same thing as me - whatever it is! Alternatively, some media sources have been talking about a toxic smog drifting over the UK from Europe over recent days, but the more serious media seem to have ignored it, so maybe it's nothing. That sort of thing can probably carry micro-organisms too.

Our immune problems seem to involve some bits being over-active and some bits being under-active, and recovery would therefore involve correction of this imbalance. Maybe one aspect involves allergy-type antibodies being turned down, as I suggested in this post. So perhaps a new or re-emergence of an allergy might be a good sign.

If it's a virus, it could mean that the virus-fighting mechanisms are correcting themselves and switching to fighting viruses instead of ourselves.

But I may be getting muddled here - I have only recently got up and am not fully awake yet. I need to refresh myself on how autoimmunity develops!

I'll check back in later. Interesting thread.

 

[MeSci]

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
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.

I agree.

I've only tried two of the supplements in your list: sodium bicarbonate (2 tsp a day seems best for me, and I currently take the largest dose after lunch as I tend to be more active in the afternoon) and Co-Enzyme Q10, which I couldn't tolerate even at 100 mg as it caused dizziness, hunger and difficulty controlling bowels.

 

[MeSci]

"4. Branch chain amino acids may help CFS patients.
If the tryptophan to BCAA ratio is too high, neurotransmitters made from tryptophan increase, causing physical and mental fatigue.4 When patients first contract CF, the body activates a metabolic pathway that increases the rate of conversion of ATP to cyclic AMP, which is used for immune system stimulation. It seems that CF patients have difficulty turning this pathway off when it is no longer required. The inability to properly regulate this pathway leads to losses of ATP in times of inadequate production. Branch chain amino acids can down-regulate this ATP to cyclic AMP process.5 " http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=41341

This doesn't seem quite right to me, and I am concerned about the use of the term 'CF' - a symptom of many illnesses - interchangeably with 'CFS'. It is rather sloppy.

The phrase

neurotransmitters made from tryptophan increase, causing physical and mental fatigue

is also rather a mess.

What affects which compounds are made from tryptophan can in fact be diet/gut flora. I believe - if I recall correctly from another thread - that the fungus-based supplement someone (Mary?) mentioned does indeed have a beneficial effect in this regard, and moves the process from producing kynurenine to producing serotonin. Wikipedia has quite a good diagram showing these pathways, and this post cites a study that finds interferon-gamma to also affect tryptophan pathways. A recent paper has found high interferon-gamma in early ME/SEID but not in longer-term ME/SEID, and I have a theory that recovery might include interferon-gamma increasing again, which one might expect to have some adverse effects (maybe temporary?). Maybe it could go too high again for a while and then normalise as recovery proceeds.

Another way to boost the serotonin side of things is to take 5-HTP, which I am doing.

If the fungus-based supplement is the source of the BCAAs it sounds good to me!

Hope that all makes sense!

 

[MeSci]

My gait has improved. I now land on my heels and push off with my toes. That feels more energetic. Before I could not do that, I landed on my whole foot and could not push off with my toes, When it was real bad I did not even lift my feet, I shambled.

I can pick my feet up better sometimes now, but not always. I am also able again to use my hip muscles while walking so it's not such hard work for the leg muscles.

But on 'bad leg days' I revert to what I call the 'ME trudge'!

 

[MeSci]

OK, I've read the whole thread and these are my thoughts.

@Mary: Re not knowing what your limits are at the moment, I think you should stick to the ME-percentage of the age-relevant maximum heart rate for now at least. This thread

talks about that. It seems that as long as you stay below that, you should be OK.

Are you sure that your sinus problem is an infection? The reason I ask is that I developed sinus congestion after being ill for some time, and it got worse and worse. I tried lots of different remedies, but nothing really helped. It was after starting my leaky-gut regime that it started to reduce, until it was almost-completely absent again. It seemed to improve in line with my gut function.

That's one reason I suspect that my current sinus problem is an infection or allergy. My gut function is pretty good, so it can't be related to leaky gut (which I think the previous sinus problem was). This one also started with intense burning of the nostrils (different again), and my nose was/is much more runny than before, although when the secretions dry they are like glue and really hard to shift! It feels distinctly different.

I did wonder whether it could be to do with the fact that I got some glue on my skin when mending something recently (thought I'd got it off quickly), and then filed off the excess glue from the mended object after it dried so may have inhaled some glue particles from the air. Seems rather unlikely though!

I note that you eat some wheat, and wonder whether cutting out gluten altogether might help?

You may not be as deconditioned as you think. I have a relevant blogpost here:

My muscles seemed to start becoming accessible for use again after apparently losing the layer of fat that they were wrapped in. That's how it felt anyway. It was like - the fat melted away with the diet and supplements and suddenly I could feel the muscles again, although one or more of the supplements I am taking are also believed to 'convert' fat to muscle. I don't know if that's feasible, but it's the results that matter!

Your 'detox' symptoms of "spaciness, fatigue, trouble concentrating, appetite off" sound the same as what I get with PEM (along with other symptoms).

The liver overload could be due to lactate, which I have also blogged on, e.g. here:

I think I have worked out a key difference between my current leg-ache and my usual leg-ache. My 'ME leg-ache' is usually accompanied by leg weakness and tiredness. But this time my legs feel strong despite the aching. Is this what a flu ache feels like? It's so long since I had flu that I can't remember!

Sorry to monopolise your thread - you can tell me to shut up now if you want.

 

[lansbergen]

I can pick my feet up better sometimes now, but not always. I am also able again to use my hip muscles while walking so it's not such hard work for the leg muscles.

But on 'bad leg days' I revert to what I call the 'ME trudge'!

My gait is back to normal for several days now. It just happens, I do not have to think about it.

The improvement started in the low back, went down to the pelvic area and then to my buttocks muscles.

I am pretty sure if I overdo the shamble will come back but at least I know now that it can be reversed.

 

[MeSci]

The improvement started in the low back, went down to the pelvic area and then to my buttocks muscles.

I am pretty sure if I overdo the shamble will come back but at least I know now that it can be reversed.

Yes, it's partly the buttock muscles that I can use now, and the area has tightened up nicely!

 

[Mary]

I need to read all of this thread, although a lot of it is perhaps not appropriate for me and seems very complicated. More complex self-treatment seems easier to do in the US than here, as it seems easier to get tests done on request.

Almost all of my progress has been made without testing. In other words, I started taking methylfolate because of Freddd's posts about B12 and folate, not because of any testing I had done. And the methylfolate was amazing in the way it helped my energy.

I started taking potassium because Freddd detailed how starting methylcobalamin or folate could cause a sudden increased need for potassium, and it was very true in my case. I didn't go get my potassium levels checked - I just read about potassium and started self-treating, gradually increasing the dose, and sure enough, the horrible fatigue related to low potassium went away. Everything I do, I do read about rather thoroughly before starting, but I've had very little testing done.

I did have my NK cells tested some years ago and they were almost at the bottom of the range, so I know that's a problem for me, as it for most CFS patients. It would probably be good to get them re-tested, but in the meanwhile I'm taking supplements I've read about that are supposed to increase NK cells. And I seem to be getting some good results.

Doctors have been almost useless with this illness. I don't rely on them for anything. They can order tests if necessary, but testing shows almost nothing.

One thing that has helped me a lot which seems to be controversial is muscle testing. I've very good results from a couple of different chiropractors. They've helped me a lot with digestive issues and my adrenals. If you google Great Britain applied kinesiology (or similar terms) you can find people there who do this. They helped me more than any doctor.

So I wouldn't have attempted adrenal glandulars on my own - I wouldn't even have known about my weak adrenals were it not for my chiropractor - I was weak as a kitten, but the docs just gave me an anti-depressant - right - which I took for 2 days and stopped because I hated how it made me feel and was not the solution to the problem.

 

[Mary]

This doesn't seem quite right to me, and I am concerned about the use of the term 'CF' - a symptom of many illnesses - interchangeably with 'CFS'. It is rather sloppy.

The phrase is also rather a mess.

What affects which compounds are made from tryptophan can in fact be diet/gut flora. I believe - if I recall correctly from another thread - that the fungus-based supplement someone (Mary?) mentioned does indeed have a beneficial effect in this regard, and moves the process from producing kynurenine to producing serotonin. Wikipedia has quite a good diagram showing these pathways, and this post cites a study that finds interferon-gamma to also affect tryptophan pathways. A recent paper has found high interferon-gamma in early ME/SEID but not in longer-term ME/SEID, and I have a theory that recovery might include interferon-gamma increasing again, which one might expect to have some adverse effects (maybe temporary?). Maybe it could go too high again for a while and then normalise as recovery proceeds.

Another way to boost the serotonin side of things is to take 5-HTP, which I am doing.

If the fungus-based supplement is the source of the BCAAs it sounds good to me!

Hope that all makes sense!

I'm afraid my brain seems to shut off when the chemistry gets complicated. What caught my eye about that quote is this section below. (I agree , use of "CF" is sloppy, although they do use CFS at the beginning of the section.)

"4 When patients first contract CF, the body activates a metabolic pathway that increases the rate of conversion of ATP to cyclic AMP, [Sarah Myhill talks about ATP to AMP being involved in crashing] which is used for immune system stimulation. It seems that CF patients have difficulty turning this pathway off when it is no longer required. The inability to properly regulate this pathway leads to losses of ATP in times of inadequate production. Branch chain amino acids can down-regulate this ATP to cyclic AMP process"

I've read the primary problem with crashing is that we CFSers make energy anaerobically, and this little blurb says that BCAAs can reverse that. I can't give you the chemistry of why that may be true, all I know is I tried the BCAAs and glutamine and I had results within a couple of days with a quicker recovery time. And now some 4 months later the crashing appears to have stopped altogether, although I'm not sure yet, but I have a huge improvement from 4 months ago.

The BCAAs are not from a fungus source, to my knowledge.

 

[Mary]

@MeSci - I want to see how much I can do before crashing. So far, so good, though I've had different things (including sinus infection) limit my activity. I'm not worried about my anaerobic threshold right now because I want to see if PEM is still an issue for me and I won't know that unless I push myself. I can handle a crash if it happens, but I won't know if I am still producing energy anaerobically unless I test my limits.

I'm sure my sinus problem is an infection, it was confirmed by my chiro, and I got very very tired with it and slept a lot. Allergies don't do that to me. Again, I think my NK cells are low. But I am doing better, I think all my supplements are helping. My gut function is pretty good too.

I eat about 1 piece of bread a week. That's all the gluten I eat. I don't think it's a problem for me. I feel better right now than I have in years, thanks to the BCAAs and glutamine.

My detox symptoms were from detoxing. I reacted very strongly to certain things (like glycine, inositol, glutamine initially) - the symptoms came on witihin a day, and sometimes just hours of taking these things - and they symptoms went away when I stopped them. And I had the same symptoms with anything that could cause "cleansing" - chlorealla, apple cider vinegar, far infrared sauna, etc., and the symptoms always stopped when I stopped the offending substance. It was not PEM. However, I am no longer reacting to these things. I think the BCAAs may be doing more than just helping my metabolic pathways. The symptoms were consistent with mercury toxicity and I have a history of mercury exposure. If my immune system (like many with CFS) is Th2 dominant, that can cause a strong reaction to toxins, so the BCAAs maybe helping my immune system to shift.

My liver problems were not from lactate. I had heavy chemical exposure. I got pretty sick during the detox but I stuck it out for a month and my liver toxic symptoms went away, although it did nothing for my lactic acid build up during crashing.

BCAAs can help with lactic acid buildup, and I think glutamine does as well.

I appreciate all your input but we may have very different issues. My PEM always manifested as complete physical exhaustion - but I never had brain fog except for when I was experiencing mercury toxicity, which was always related to a substance I had ingested or a protocol that was involved in detoxing.

 

[MeSci]

I'm afraid my brain seems to shut off when the chemistry gets complicated. What caught my eye about that quote is this section below. (I agree , use of "CF" is sloppy, although they do use CFS at the beginning of the section.)

Sorry about the science overload! It's basically that tryptophan will produce beneficial neurotransmitters if given the right environment, whereas that quote made it sound as though one needed to avoid tryptophan-derived neurotransmitters.

The BCAAs are not from a fungus source, to my knowledge.

I don't know where I got the fungus reference from - I must have found some connection somewhere but can't find it again! I think it was to do with a type of Shiitake mushroom being used as a source of some beneficial substance that had come up in this thread.