Polyuria, Nocturia and Polydipsia--ME symptoms?

[MeSci]

Such negative reactions as I have seen have been in a subset of patients for whom dysbiosis is a known issue. It's very clear from the the KDM study that it deals with a particular subset of ME patients as such it is 30% of a subset, not 30% of the general ME population.

What KDM study? AFAIK, a substantial proportion of us have dysbiosis.

The survey pointed to by Hip indicated that negative reactions to Ribose were no more prevalent than for CoQ10 with very few marked reactions.

I reacted badly to Co-Q10 too = hypo. Maybe that is because my blood glucose is well-controlled, so I clearly don't have an insulin problem, at least since being on my leaky-gut diet and supplements (don't know what it was like before). Many of us consider that the leaky-gut diet and supplements is the best way to fix dysbiosis, and I certainly have vastly better digestion since starting it, suggesting that I have fixed the dysbiosis. Gut flora are largely determined by diet. I don't know whether or how d-ribose could fix the gut or immune system, and my immune system doesn't seem to need boosting, as I almost never get colds or flu, like many of us here.

So far as the energy v. rest issue is concerned that is hellishly complex and more a coffee table debate than something to do in email. If you can't bear that in the short term (for me the fatigue was much worse - I decided to live with the discomfort) - I can see an argument for upward titration and morning weighting.

This is not email. It is a forum for discussing all issues to do with ME. Coffee-table??

I can bear a hell of a lot, but if an adverse effect is severe I take that as a warning.

 

[Leopardtail]

What KDM study? AFAIK, a substantial proportion of us have dysbiosis.




I reacted badly to Co-Q10 too = hypo. Maybe that is because my blood glucose is well-controlled, so I clearly don't have an insulin problem, at least since being on my leaky-gut diet and supplements (don't know what it was like before). Many of us consider that the leaky-gut diet and supplements is the best way to fix dysbiosis, and I certainly have vastly better digestion since starting it, suggesting that I have fixed the dysbiosis. Gut flora are largely determined by diet. I don't know whether or how d-ribose could fix the gut or immune system, and my immune system doesn't seem to need boosting, as I almost never get colds or flu, like many of us here.



This is not email. It is a forum for discussing all issues to do with ME. Coffee-table??

I can bear a hell of a lot, but if an adverse effect is severe I take that as a warning.

I had the section of the immune system that is operational in the gut in mind when I posted this, hence direct relevance to dysbiosis. With more severe ME I did not produce mucous in large amounts, it never discoloured and I was in permanent pain. The only way I knew I had an infection was through interleukins causing CRH production and subsequent effect on blood sugar (I over produce rather than under-producing Cortisol) - both alleviated with anti-botics.

The effect you saw with CoQ10 may have been attributable to improvement in ATP levels restoring normal action. Assuming you don't suffer T1DM you body would be able to produce more insulin to keep your blood sugars normal with slight insulin resistance. The combination of slightly elevated Insulin and normalisation of its effectiveness would have produced hypgclycaemia until either your rectified it or your body produced sufficient Cortisol / Epineprhine (I don't know what your status was/is).

I would greatly appreciate your input here: http://forums.phoenixrising.me/index.php?threads/collecting-data-from-users.31376/

 

[BadBadBear]

I found something similar occurred when I lifted from very-severe to just severe fatigue. I am diabetic as well as having ME for which reason I kept a very close eye on blood sugars. My 'gut hunch' aka 'crackpot theory' revolves around insulin resistance that occurs with ATP depletion. My thinking was that when my mitochondria were getting a rest and causing ATP to build back up and insulin to work correctly again a few hours after going to sleep. That meant that the high insulin levels needed to compensate for resistance became excessive once the resistance was no longer there. Result, hypo and lots of adrenalin etc waking me up. For that reason I found the need to take a small amounts of cabs at night, while things settled down.

I also found funnily enough that Ribose helped me sleep rather than worsening it, much more I found that if I took herbals teas (e.g. Valerian) for sleep with ribose they worked much much better. I also found that the 'wide awake' effect of Ribose disappeared with 'front loading' - meaning taking much more (15g at the start) to avoid an ATP roller-coaster. Perhaps how people react to that one depends on levels of fatigue?

The post-prandial check is definitely a good idea if you are taking limited carbs, it will allow you to head off any hypoglycaemia - I expected that having seen it in research so was 'ready for it'. BTW my overall insulin dose halved post Ribose.

I have no idea why, but my fasting blood sugars are significantly higher since I started D-Ribose. Sun. AM it had risen to 100 which is very high for me, I did not take D-ribose Sun. PM and my fasting sugar this morning was 85.

I don't think that idea about ATP is so far off. I have not yet checked serum insulin levels, I will do that in my next blood work.

I have never experienced Ribose making me feel wide awake. I was pretty foggy yesterday, with an a.m. dose.

ETA: I decided to take a tsp of ribose before riding my bike this morning (short ride!). I checked blood glucose before and after, and it's actually up a bit after. Usually I'm way down after a ride.

 

[Leopardtail]

I have no idea why, but my fasting blood sugars are significantly higher since I started D-Ribose. Sun. AM it had risen to 100 which is very high for me, I did not take D-ribose Sun. PM and my fasting sugar this morning was 85.

I don't think that idea about ATP is so far off. I have not yet checked serum insulin levels, I will do that in my next blood work.

I have never experienced Ribose making me feel wide awake. I was pretty foggy yesterday, with an a.m. dose.

ETA: I decided to take a tsp of ribose before riding my bike this morning (short ride!). I checked blood glucose before and after, and it's actually up a bit after. Usually I'm way down after a ride.

One thing you need to be aware of is that D-Ribose is made from Glucose, once you have gotten over those hypos that can occur when starting, as a diabetic you need to count it as though it were sugar. I.e. 1g Ribose = 1g Carbohydrate and treat is as part of diet.

The other (theoretical) thing to bear in mind is that while you are recovering (if it's helping) you may see a rise in the production of Cortisol and/or Adrenaline that pushes your blood sugar up due to persistent infections etc.. I found the need to be keep a close eye on things and adjust accordingly as I went through various 'healing phases'. It was eventually much more stable than before.

 

[BadBadBear]

One thing you need to be aware of is that D-Ribose is made from Glucose, once you have gotten over those hypos that can occur when starting, as a diabetic you need to count it as though it were sugar. I.e. 1g Ribose = 1g Carbohydrate and treat is as part of diet.

The other (theoretical) thing to bear in mind is that while you are recovering (if it's helping) you may see a rise in the production of Cortisol and/or Adrenaline that pushes your blood sugar up due to persistent infections etc.. I found the need to be keep a close eye on things and adjust accordingly as I went through various 'healing phases'. It was eventually much more stable than before.

I don't quite understand, though, because I don't have hypos at all with it, which is different than what I expected after reading studies about it. Even in diabetics it is supposed to cause hypos. Maybe it's cortisol or adrenaline that is making me feel yucky today. I just don't feel great on it. Overstimulated, but I just feel muddy and not speedy - my head is muddled, and my body feels weird, too.

Can it cause over-methylation to kick in?? That's kind of what it feels like. And a bit of chest pressure and anxiety to go with it.

 

[Leopardtail]

I don't quite understand, though, because I don't have hypos at all with it, which is different than what I expected after reading studies about it. Even in diabetics it is supposed to cause hypos. Maybe it's cortisol or adrenaline that is making me feel yucky today. I just don't feel great on it. Overstimulated, but I just feel muddy and not speedy - my head is muddled, and my body feels weird, too.

Can it cause over-methylation to kick in?? That's kind of what it feels like. And a bit of chest pressure and anxiety to go with it.

The short version is that improving ATP levels (the effect of ribose) can raise the effect or a large range of supplements and/or medications. It may also cause your body to resume processes that were previously failing - the list of possibilities is endless.

Realising you are diabetic, my first thought is that needs to be given first priority here. Are you type I or type II diabetic? Who changes/manages your insulin or tablet doses - you or a medic?

I did have some blood sugar issues to sort out when I started on ribose, but I would not feel safe to give advice on diabetes on PR. The three simple points are:

1. Ribose is a form of sugar, it needs to be counted as such beyond the first two or three doses to keep your blood sugars stable.
   
2. Ribose can in the short term (in theory) wake up your immune system and cause the same disruptions to blood sugar that infection would without ME. That should be handled however your doctors advises for an infection.
3. Ribose can cause hypo type symptoms when you first start, but (from my experience) only when you blood sugars do gown rapidly. N.B. as per normal diabetes you can get some hypo symptoms because your blood sugar goes down rapidly, not only because it is low.

Have you regained control of your blood sugars, or do you know what to do? If the answer to both of those questions is no, I would lower or stop the ribose until you know how to handle the issues.

I hope I haven't 'talked to you as though you were daft'. I am just mindful I have had diabetes for more than forty years and don't want to lead you into trouble should you have less knowledge/experience.

Once I a feel confident you have your diabetes back under control, I will talk you through my personal experience of the Ribose and how it might impact your system.
While you are sorting out the diabetes, please post a full list of your supplements and medications so that we can spot anything that you may need to discuss with your doctor and get qualified advice.

 

[BadBadBear]

Thanks, but I am going to stop Ribose for now.

I am below the threshold for pre-diabetic (type II), so my integrative MD just monitors my glucose readings on my labs and home testing. I am also low carb, so my sugars are not ever very high - but they are not completely normal, either. I have been carefully watching my glucose readings for a few months - fasting and post prandial - as I think part of the fatigue is possibly from insulin resistance.

I rarely ever eat anything with sugar in it, closest I get is starchy vegetables, so it may also be that I am over-reactive to Ribose sugar. In any case, its just too much for now, and it doesn't help the nocturia, either. I'll probably go back on ALA instead since it improves sugars and nocturia rather dramatically.

 

[Leopardtail]

Thanks, but I am going to stop Ribose for now.

I am below the threshold for pre-diabetic (type II), so my integrative MD just monitors my glucose readings on my labs and home testing. I am also low carb, so my sugars are not ever very high - but they are not completely normal, either. I have been carefully watching my glucose readings for a few months - fasting and post prandial - as I think part of the fatigue is possibly from insulin resistance.

I rarely ever eat anything with sugar in it, closest I get is starchy vegetables, so it may also be that I am over-reactive to Ribose sugar. In any case, its just too much for now, and it doesn't help the nocturia, either. I'll probably go back on ALA instead since it improves sugars and nocturia rather dramatically.

You are (in my view) right on two fronts:

• low ATP causes both fatigue and insulin resistance
• raised BMs and the bodies attempts to manage them cause fatigue

Best of luck sorting things out

 

[Leopardtail]

I don't quite understand, though, because I don't have hypos at all with it, which is different than what I expected after reading studies about it. Even in diabetics it is supposed to cause hypos. Maybe it's cortisol or adrenaline that is making me feel yucky today. I just don't feel great on it. Overstimulated, but I just feel muddy and not speedy - my head is muddled, and my body feels weird, too.

Can it cause over-methylation to kick in?? That's kind of what it feels like. And a bit of chest pressure and anxiety to go with it.

Now I know you are not going to get in trouble with diabetes (following cessation of Ribose) - I will answer for the rest of our coomunity.

The hypoglycaemic effect of Ribose is likely to occur only when you cross from having too little ATP to make insulin work properly to the point when you do, it's a transitional effect. With mild ME it might not occur, with very severe ME it might take some time to occur. The way in which ATP affects insulin action is not continuous, it changes on thresholds of ATP (as do some other hormones).

So far as your 'methylation' question goes: B12 and B9 supplements create Methionine. ATP is then needed to make SAMe (the stuff that does the work). This means when taking supplements that improve ATP (such as Ribose & CQ10) you may need less of the supplements for Methylation. The original research on methylation and ME by the late Richard van Koneynenberg was done on patients who had already been supplemented for ATP production which might well be the better way around to do things.

The other thing worth bearing in mind both for ATP-related supplements and Methyl supplements is that they potentially improve a wide range of functions in including hormone production. Hence if you are taking supplementary hormones, or anti-depressants you can have too much of a gpod thing. Having too much of any of the following causes agitation: Serotonin, Dopamine, Epinephrine (aka Adrenalin), Cortisol, T3/T4.

 

[BadBadBear]

@Leopardtail, just as followup... I decided that since I have started ALA it might be worth one more try with Ribose, so yesterday I tried a small dose of it (1/8 tsp.) after a bike ride to see if it aided recovery. I rode my bike before lunch, ate a balanced meal, added a bit of Ribose to my drink (sugarfree limeaide w/ salt).

I don't know why, but my post prandial BGL went up higher than I've seen it - at 2 hours it was at 138. Usually I am below 120, and often I am back under 100. I took a 20 minute walk, and rechecked and my BGL tanked down to 85.

It was all strange and I'm not sure what to make of it? BGL had been fine earlier in the day, and it was fine after dinner, too.

Re: your prev. post, I have both of the COMT mutations, so I def. can build up too much serotonin, dopamine, or epinephrine, though I don't have much trouble with over-methylation on a normal basis.

 

[Leopardtail]

@Leopardtail, just as followup... I decided that since I have started ALA it might be worth one more try with Ribose, so yesterday I tried a small dose of it (1/8 tsp.) after a bike ride to see if it aided recovery. I rode my bike before lunch, ate a balanced meal, added a bit of Ribose to my drink (sugarfree limeaide w/ salt).

I don't know why, but my post prandial BGL went up higher than I've seen it - at 2 hours it was at 138. Usually I am below 120, and often I am back under 100. I took a 20 minute walk, and rechecked and my BGL tanked down to 85.

It was all strange and I'm not sure what to make of it? BGL had been fine earlier in the day, and it was fine after dinner, too.

Re: your prev. post, I have both of the COMT mutations, so I def. can build up too much serotonin, dopamine, or epinephrine, though I don't have much trouble with over-methylation on a normal basis.

That COMT mutation could well be playing a role in your BM issues. Exercise can ramp up Catechol levels, and any supplement that gets your energy up can increase production. This lot is going to take some working out isn't it?

 

[Leopardtail]

I read one or more Life Extension protocols that said it was best to take it all at once. Here's a quote from one of their protocols:



I also have Life Extension's big book of protocols so I may have read it there.

Most amino acids are best taken on an empty stomach and the only time my stomach is empty is in the morning.

You indicated to me that you didn't want to derail this thread and change topics, so if you'd like to continue a discussion regarding carnosine and its various forms, we can continue a private conversation.

Thanks for that, will bear it in mind if I try it again.

 

[Dmitri]

Does anyone else get urinary frequency from cold exposure? By this I include even mildly cool temperature, e.g air conditioned train wagon. An extreme example being when I bathed in the ocean during the summer (about 22C), I had to urinate every 10 minutes.