Nuun Good, Peg Bad.

[imapumpkin]

I have been holding back on making a post about this for a while because often whenever I post about an improvement, things start to backtrack for me, or whatever I find is helping me loses it's effectiveness after I rave about it. Weird and supersticious, I know but also mostly true.

For the past 5 weeks I have been drinking 16oz of water with a Nuun tablet in it each day. My POTS doctor (Neurologist) recommended drinking 16oz of water plus a tab at 8 am and again at 12 pm but given my overactive bladder, I just physically can't do that because I would literally never get anything done as I'd be in and out of the bathroom every 10 minutes. My doctor says that on this regiment, some of her patients are able to be completely medication free, which is huge. I quickly went out and bought some Nuun and tried it.

I'm happy to say that it has made a HUGE difference in my energy level. I'm not exaggerating; these past five weeks are the first time I've felt human in two and a half years. I do not feel miserably tired. I do not have to peel myself out of bed at 2 in the afternoon because I still feel exhausted. I have more mental clarity and less brain fog than I have in a very long time. The change in how I feel is remarkable and I am so thankful that I found these tablets.

HOWEVER.

This afternoon I had an appointment with my integrative medicine doctor. He has other POTS patients and has actually never heard of Nuun. I brought in a tube for him to look at. He said he was really happy to hear that I was doing much better and remarked that in the 15 months that he's been treating me, this is the healthiest I have ever looked to him. He did however say "I wish this didn't have polyethylene glycol in it."

I asked what it was and he explained it was a preservative but that it's often associated with antifreeze. He obviously wasn't concerned enough about the PEG to advise me to stop taking it, but being the generalized anxiety-ridden girl that I am, I started googling it when I got home. I hadn't realized that PEG was what was in Miralax (which, by the way, explains why the Nuun totally cleans me out on a daily basis. No complaints on the regularity, but your technically not supposed to take miralax for more than 7 days) and there are all kinds of things on the web about the toxicity of PEG.

I guess I'm asking for other people's experience with Nuun because even though I think it is an absolute GODSEND (and believe me I don't use that term lightly) I would at least like to be more educated about the possible toxicity of something I'm putting into my body on a daily basis. Again, I'm assuming if my integrative medicine doctor was that concerned he probably would have said something and advised me against it, but the alarmist in me that never goes away it having a low-grade freak out about this.

Any thoughts??

[momandmore]

I worried about PEG because I had a child with chronic constipation as well as some mild neurological glitches, really nothing terribly bad but as a mom it's easy to focus on those things. I heard references about the toxicity of PEG on message boards and then I started to ask questions and do some research. While some raise questions about the long-terms safety of PEG, there have been studies to show no problems. For some families with kids with chronic, debilitating constipation Miralax has been a life-changer, and they keep using it with no ill effects. Fortunately or unfortunately, Miralax actually caused more GI problems so we were able to avoid that dilemma.

I tend to remember that the are cases when families have seen scary effects while using Miralax, there is a suspicion of leaky gut syndrome. In other words, the inflammation in the GI tract provides a pathway for the PEG to get into the bloodstream and affect the brain, etc. When I have read those types of stories, people seem to feel, that once they realize what's going on, the connection is absolutely clear for them. For someone like you, on the other hand, who has felt better than you have in years and other people are commenting on how wonderful you look, you do not seem to fit into that category so you may not share that same risk.

I'm sorry you are having a low grade freak. Making these decisions are never easy. Even my cardiologist hesitated over giving me meds because he's worried about side-effects that I might find troublesome, so now I have to wait for our next appointment so he can re-evaluate. And the meds we're talking about are things that everyone is taking here and often finding helpful. It's frustrating!

[gjensen]

I would ask your doctor to clarify his/her concerns, and follow the advice. PEG is a concern for some, and not for others. The internet is full of concerns. Some valid, and some over played. Everyone has theories, and is an expert on the internet. It is difficult to know what is helpful and is not. I would not consider anecdotal evidence unless you have a rational faith in the source. Have you found any authentic studies on it's use, and it's effects? Even many studies are only suggestive, and more is known later. So much that would be bad for us, is not in trace amounts.

Is there any manufacturer guidelines concerning long term use? I do not know, I have only heard of the product.

If you have a concern, is it worth the benefits? Can your receive a similar benefit with something that does not have PEG? Consider that no medication that we take is good for us and without risk all together. It could be argued that the extra salt is not good for us, and an argument could be made that it is not harmful at all.

I have no position of my own. All I can communicate is how I might approach the subject.

[jknh9]

I used to take Nuun, too, and I noticed positive effects, especially in summer when I had trouble moving. I stopped taking it because of the ingredients, though. I wasn't having adverse side effects, I've just gradually chosen to follow a cleaner diet overall and cut out ingredients that I wasn't sure about. I'm already on several medications and just didn't want to add more chemicals into my body if not absolutely necessary. As yet I have not found a good substitute that is "cleaner." I agree with gjensen, though, about looking into long-term use studies, if they exist.

[Nymph]

I think that the Salt stick capsules have a pretty similar mineral profile if you take 2. Maybe that would work for you instead? I take plain salt tabs, but I guess that's not for everyone. They certainly make me have to pee less often.

[blueskies]

Hi,

I cant take movicol (aussie version of mirilax, I think) because polyethylene glycol taken at doses that make my bowels work also gives me migraine and erythromelalgia flares, more dizziness and confusion and a worsened lack of energy - it flattens me. But it is present in other meds I take and doesn't seem to cause me problems - I guess its because it is a much smaller amount. I do react to other things in some meds - such ad sodium glycollate and quinoline/sunset yellow as well as have a problem with e133 (brilliant blue) which can be in some foods and meds. Although I have to grin and bear the negative effect of e133 in one of my meds because the med itself helps me and there is no colour free alternative. I avoid anything with e133 in it but this one med. I believe e133 is banned in europe.

it is interesting to read that polythylene glycol, which seemed to be thought of quite begnignly when it was first introduced, is now attracting its critics. I could not cope with taking it from day one for my ongoing constipation. And I experienced horrible reactions to it each time I retried it.

blue

[blueskies]

Having just posted, I went back and read gjensens post and I think its a good one. W e are all different. And my experience is only one experience.

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