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Van Jordan

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Ulcerative Colitis
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VanJordan
Veteran Member
Joined : Dec 2019
Posts : 566
Posted 7/22/2022 1:10 PM (GMT -8)

Pinocchio said...
Medication never really worked for me, I even felt like it made me worse. Remicade did a bit, but I dont really wanna go back to Biologicals, they scare me. I'm not in a bad flare, but this one is nearly going on for 2 years. I feel like, I'm missing out on my youth.
I will try smoking ~3 cigarettes a day and see, if this can reduce the hydrogen peroxide production. Already had some success with my supplements.

I'm sorry to hear your UC is troubling you. This is indeed a frustrating disease to deal with!

Smoking inhibits the electron transport chain (ETC) in mitochondria, which means less end hydrogen peroxide production. In those with mild to moderate UC, smoking can sometimes help for this reason. For those with more severe UC, antioxidant production is so bad that even the small remaining amount of hydrogen peroxide production, leading to UC.

Smoking didn't work for me at all and actually made me ill... but then, I've never been a smoker in my life so it was really out of left field for me.

Inhibiting the ETC means lower energy production in the body, which has negative downstream effects in many other areas. Not to mention the toxins in cigarettes. Cyanide compounds found in cigarettes mildly inhibit cytochrome c (a.k.a cytochrome IV), for example, but the dose is too low to be fatal. At higher doses of cyanide, the ETC is completely inhibited and all cellular respiration stops. This is the mechanism for how cyanide kills people.

You're basically using a mild poison to inhibit normal physiology in order to prevent the end dysfunction of excess hydrogen peroxide production.

It would be healthier to experiment with antioxidants that neutralize hydrogen peroxide, rather than use a toxin to inhibit a healthy cellular function that happens to produce excess peroxide.
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Pinocchio
Regular Member
Joined : Jun 2022
Posts : 23
Posted 7/22/2022 2:01 PM (GMT -8)

VanJordan said...


I'm sorry to hear your UC is troubling you. This is indeed a frustrating disease to deal with!

Smoking inhibits the electron transport chain (ETC) in mitochondria, which means less end hydrogen peroxide production. In those with mild to moderate UC, smoking can sometimes help for this reason. For those with more severe UC, antioxidant production is so bad that even the small remaining amount of hydrogen peroxide production, leading to UC.

Smoking didn't work for me at all and actually made me ill... but then, I've never been a smoker in my life so it was really out of left field for me.

Inhibiting the ETC means lower energy production in the body, which has negative downstream effects in many other areas. Not to mention the toxins in cigarettes. Cyanide compounds found in cigarettes mildly inhibit cytochrome c (a.k.a cytochrome IV), for example, but the dose is too low to be fatal. At higher doses of cyanide, the ETC is completely inhibited and all cellular respiration stops. This is the mechanism for how cyanide kills people.

You're basically using a mild poison to inhibit normal physiology in order to prevent the end dysfunction of excess hydrogen peroxide production.

It would be healthier to experiment with antioxidants that neutralize hydrogen peroxide, rather than use a toxin to inhibit a healthy cellular function that happens to produce excess peroxide.

I'm completely on your side. I just thought, I might use this tool for inducing remission; from there I may be able to stop the smoking and handle the hydrogen peroxide with just supplements. I always felt staying in remission is quiet easy, but inducing it is really tough.
I used to smoke weed daily in my early 20s; we always used tobacco for stretching the joints. I took a break months before my UC developed. May be connected, may have been a part of the process.
I will give this a shot for 1-2 weeks; I don't recommend anyone to follow my plan tho.
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CCinPA
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Joined : Dec 2014
Posts : 2524
Posted 7/22/2022 3:56 PM (GMT -8)
Pinocchio -- why are you afraid of biologics? Smoking is far more dangerous in my opinion. If you used to smoke weed, can you try that again? That would be more safe than cigarettes and I have heard people on this forum who have said that marijuana helps their symptoms
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VanJordan
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Joined : Dec 2019
Posts : 566
Posted 7/22/2022 8:40 PM (GMT -8)
I think he said that medications didn't work for him before he mentioned being scared by biologics, but maybe I am not understanding clearly.
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poopydoop
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Joined : Dec 2018
Posts : 1799
Posted 7/23/2022 1:57 AM (GMT -8)
Well it's not really clear if all (or even many) medications were tried, especially since a lot of new things have come out in the last 5-10 years. And the newer ones are not all biologics either.
I'd be interested in knowing the stats for risks of smoking vs risks of UC meds (but not so interested that I can be bothered to look it up). But at the end of the day, we choose our own risks....
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damo123
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Joined : Jul 2007
Posts : 942
Posted 7/23/2022 3:37 AM (GMT -8)
CCinPA, I don't think anyone should be smoking cigarettes or even weed with an autoimmune condition. Have you any research or reference links to back up your claim here that weed is safer?
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Pinocchio
Regular Member
Joined : Jun 2022
Posts : 23
Posted 7/23/2022 4:25 AM (GMT -8)
I already had Humira and Remicade in my first, very severe flare. Humira lessened my symptoms by around 30% for 4 weeks, then lossed it effect and gave me an allergic reaction. Remicade helped me around 70%, but also only worked for 2-3 months. I'm also reacting very poorly to steroids or mesalazin (they might have even made it worse, got in the ER after using them). I don't have high hopes in the remaining biologicals, which effectiveness isn't much higher than placebo.

Don't get me wrong, I have a friend, which got diagnosed with Crohns, Fibromyalgia, Athritis and Rheuma 1 year ago and all of her symptoms vanished with humira; it has been a blessing for her. She has been sitting in the wheelchair already and is 100% again now. But for me, medication somehow doesn't do what it should. And seeing the sideeffects of biologicals, knowing that they most likely won't work for me - thats not a great deal for me. I rather try smoking 3 cigarretes a day, knowing it will play a part in the hydrogen peroxide reduction theory, than going for biologicals right now. I don't plan to become a smoker in the longterm, I'am still young (28) and super healthy in other lifestyle habits - smoking 1-3 months won't kill me. But I get your concerns and am grateful for your opinions. I will keep you guys updated.
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IamCurious
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Joined : Jan 2010
Posts : 3692
Posted 7/23/2022 5:51 AM (GMT -8)
Everyone knows that smoking cigarettes is not healthy. The statistics that used to be published were that smoking one pack is better than two packs per day. And half a pack was even less dangerous.

I have to believe smoking only 3-4 cigarettes per day is very low risk that won't outweigh the benefits (if you see any benefit from it).
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poopydoop
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Joined : Dec 2018
Posts : 1799
Posted 7/23/2022 7:00 AM (GMT -8)
Well these days there are a lot more drugs besides humira and remicade, which each work by a different mechanism, so having a poor response to one is not a predictor of how you will respond to others.
I had a partial response to remicade and entyvio. Didn't bother trying humira as it's too similar to remicade. Then I went on xeljanz, which is not a biologic and was first licensed for UC in 2018. We were sure i was going for surgery, but after a few weeks the xeljanz kicked in and I have been in remission for 3 years. I tried a lot of dietary interventions and supplements but they only made me weak and malnourished, and sometimes they made my symptoms even worse.
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CCinPA
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Joined : Dec 2014
Posts : 2524
Posted 7/23/2022 9:15 AM (GMT -8)
Damo -- I don't have any studies to show that weed is safer than cigarettes and don't really care one way or the other. Weed isn't filled with a lot of additives like cigarettes are which is what I meant by it being safer. There have been posts here about people using weed to help with their UC symptoms. So shoot me because I don't have a lot of internet scientific studies to back up my statement. I am sure there are "studies" available that would support either of our positions.

Pinnochio -- It took me a couple years and dosage changes before I achieved complete remission though I was most of the way there after a few months -- see my signature.

There are a lot of newer biologics and other drugs like Xeljanz that are now available for UC that weren't a few years ago. We can all point to the info that is known about these drugs because of the trials and monitoring that these drugs go through before they were approved and after. If even one person gets cancer or another side effect while on the trial the companies report them. And then some drugs are required to carry warnings even though there isn't even 1 case with that drug, but a similar drug had an issue (example is the warning about PML with Entyvio even though there has never been even 1 case of it associated with Entyvio use).

I really doubt that most supplements have undergone any testing nearly as rigorous as pharmaceuticals. And supplements are not regulated (at least in the U.S.) and with no oversight. Don't get me wrong, I use some supplements myself. It just doesn't make sense to me when people have a long list of supplements that they take and then say they are afraid of pharmaceuticals. Supplements -- no regulations, Pharmaceuticals -- heavily regulated and tested.

Still -- I get the desire to avoid drugs and try alternatives. If you can find something that works for you stay with it and don't ever stop. UC is for life and there is no cure. The most any of us can hope for is to find a treatment that can allow us to live our lives.
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VanJordan
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Joined : Dec 2019
Posts : 566
Posted 7/23/2022 11:57 AM (GMT -8)
Could you guys please take the biologics talk to a different thread? This thread is for talking about the hydrogen peroxide theory of disease and treatments, whereas biologics are frequently talked about everywhere else on the forum in thousands of different threads. If you don't believe in this theory or taking supplements, that's fine, but this thread is for those who wish to experiment with this theory and derailment would be unfortunate because so far the discussion has been very productive.

Thank you.
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VanJordan
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Joined : Dec 2019
Posts : 566
Posted 7/23/2022 12:08 PM (GMT -8)

CCinPA said...
I really doubt that most supplements have undergone any testing nearly as rigorous as pharmaceuticals. And supplements are not regulated (at least in the U.S.) and with no oversight. Don't get me wrong, I use some supplements myself. It just doesn't make sense to me when people have a long list of supplements that they take and then say they are afraid of pharmaceuticals. Supplements -- no regulations, Pharmaceuticals -- heavily regulated and tested.

Pharmaceutical treatment of UC has a very low success rate in terms of remission, despite the billions of dollars of design, research and testing. I think it's inappropriate to say that one thing is better than the other when a lot of patients are languishing despite complex treatment protocols. I am glad you've found success with biologics but I have failed all conventional treatments over the course of 10 years of having UC. Yet the "unregulated" supplements I talk about in this thread put me in remission in 1 month after 2.5 years of flaring and prednisone dependence.

Dr. Pravda is about to post peer reviewed data on this matter, and peer review *is* regulated. Just because a theory does not receive big pharma endorsement does not mean it's doubtful. It just means there's no profit to be made.

I think it's unfortunate that you have divided things into "unregulated = doubtful" vs "regulated = trustworthy" when it's not that simple, especially given how big corporate politics get involved. There are many trustworthy supplement companies out there who post their entire scientific methodology, often in peer review. Other companies are less trustworthy. That's why some supplement brands are recommended while others are not. Conversely, those who have failed biologics are unlikely to succeed on future ones by virtue of the fact that new biologics are largely just minor tweaks of previous ones, so that new patents can be filed and "new drug" profits can be made. Supplements, however, are highly diverse and are usually biochemical compounds derived from nature that have bio-compatibility with humans. So there is a lot to choose from and experiment with.

Up until now, supplements have been a total wild guessing game based on various shaky theories. However, now that we know UC is likely caused by hydrogen peroxide, it's a simple matter of choosing the highest quality, most bioactive antioxidants from the best supplement companies. I believe this theory is true after years of fidding with so many other incomplete theories. Nothing has healed me so quickly and so effectively. I believe this is the golden arrow we have been looking for and I encourage doubters to wait patiently for Dr. Pravda's next peer reviewed paper to be published.

Again, if conventional medicine works for you and is your preference, that's fine, but please allow others to openly discuss different alternatives and preferences without trying to shift the conversation back to your preferential treatment protocol. We are all just trying to figure out our disease and for some it's a very complex path. The pharmaceutical industry has committed to anti-inflammatories and immune suppression. They show no sign of changing from that pathway. Without alternative thinkers, we will be stuck with the same low-success treatment protocols indefinitely. This thread is part of a very important, larger conversation about how we are going to deal with UC in the 21st century. Respectfully, please grant it some latitude.

I disagree with you that UC has to be life long and that there is no cure. That kind of thinking comes from big pharma because they have failed so far. I also know all too well that it's a result of living with UC for so long and having so little treatment success. We are all dealing with some level of hopelessness. But permanent remission with return to normal lifestyle is a de facto cure. I believe a cure is not only possible but soon attainable. Stay tuned and don't give up hope.
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CCinPA
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Joined : Dec 2014
Posts : 2524
Posted 7/23/2022 6:11 PM (GMT -8)
No one is preventing anyone from openly discussing alternative treatments. This thread is now up to 8 pages as proof of that. I talked about biologics after someone said they were afraid of them and offered some different points of view. I did not attack anyone and didn't totally dismiss alternative options. Please don't say that I said things I did not.

"Peer reviewed" doesn't necessarily mean that the scientific community verifies and proves a theory. I did some research and asked someone who is in the scientific community and did some more research. I wish that having something peer reviewed meant that the findings could be duplicated or at least that all the raw data is reviewed and found to have merit. That sadly isn't usually the case. Still, after all your enthusiasm for Pravda and his paper I am interested in seeing exactly what it says.

The path of this disease is so different for everyone it makes me skeptical that a cure will be found any time soon. Some can use only mesalamine to keep the disease under control, others can do it with diet modifications or alternative theories, some need stronger meds and there are so many different meds now. Each one works a little differently and some find success with one but others don't work for them. What I do have great hope for is that within a few years there will be tests that can determine what the best treatment plan is for each individual so we don't have to just keep trying things until we find what works for us.

I hope that your current protocol works a lifetime for you. I know that you are convinced that "this" is the answer. I seem to recall that you thought the same thing about the previous treatment that worked for you ... until it didn't and you went into a 2 year flare that you treated with prednisone. I really, sincerely, hope this this time is the ticket for you. Just be open to the idea that it may not be the answer for everyone else.
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poopydoop
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Joined : Dec 2018
Posts : 1799
Posted 7/24/2022 3:54 AM (GMT -8)
And I would like to emphasise that many of the newer treatments like xeljanz, zeposia etc are NOT biologics.
Being unresponsive or partially responsive to biologics is NOT a predictor of how you will respond to other classes of drugs. (And vice versa).
I think it's important to be clear about ALL the options available to people.
I've followed Dr Pravda with interest including his linked-in profile and found his writing is emotive and at times misleading in a way which would appeal to non specialists. If he's found something that helps put a bunch of UCers in remission then great. I hope my doubts about his professionality are unfounded.
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Pinocchio
Regular Member
Joined : Jun 2022
Posts : 23
Posted 7/24/2022 12:39 PM (GMT -8)
Just wanted to mention, that I won't be able to answer anymore, because after my first account was banned from this subforum; now my IP got completely banned from accessing healingwell. Good luck guys, I won't use this place anymore. Some people don't want me to discuss this topic.

Post Edited (Pinocchio) : 7/24/2022 1:49:35 PM (GMT-7)

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Hambo88
Regular Member
Joined : Feb 2018
Posts : 257
Posted 7/24/2022 1:42 PM (GMT -8)
now i take Van Jordan' supplements(not complettely the same, i take only grape seed extract, sulforaphane, quercitin) 1 month ago, the effect is pending, mainly because i had covid the last week...therefore a picture is completly clear. But my UC is NOT worst than before when i started to take these supplements.
But according my oppinion there is a very importat data beside the brand of these supllements becuase i think the dosage is also a very important factor in this process. So Van Jordan you have not mentioned what is your dosage at these supplement? And how many kg you are? Because i think we have to calculate these amount into body weight!!!

Dr. Pravda has a video on yotube with some comments....some comments more than 6 months old, and Dr. Prvada presponsed for this old comment the new paper will be published very soon, ...6 month has passed and there is no new paper....I hope the new paper is coming realy, i trust Dr. Pravda very much, but parallel i have a critical feeling in this process, beacuase i dont know why they need such long time to publish a paper????
I hope very much Dr. Pravda is not a cheater,...but in the same time i trust in him very much to solve our problem.

Post Edited (Hambo88) : 7/24/2022 2:45:04 PM (GMT-7)

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CCinPA
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Joined : Dec 2014
Posts : 2524
Posted 7/24/2022 1:45 PM (GMT -8)
wow! Makes me wonder what your previous name was and why you were banned. I doubt that it was because of anything you said in this thread, but if you were banned then the admin had your IP from then and didn't take kindly to you trying to come back with a new name.

But really ... what did you do to get banned in the first place? I assume you went someplace else to get on the internet since you posted above. Sooo .... tell us who you were before lol
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VanJordan
Veteran Member
Joined : Dec 2019
Posts : 566
Posted 7/24/2022 1:47 PM (GMT -8)

CCinPA said...
No one is preventing anyone from openly discussing alternative treatments. This thread is now up to 8 pages as proof of that. I talked about biologics after someone said they were afraid of them and offered some different points of view. I did not attack anyone and didn't totally dismiss alternative options. Please don't say that I said things I did not.

"Peer reviewed" doesn't necessarily mean that the scientific community verifies and proves a theory. I did some research and asked someone who is in the scientific community and did some more research. I wish that having something peer reviewed meant that the findings could be duplicated or at least that all the raw data is reviewed and found to have merit. That sadly isn't usually the case. Still, after all your enthusiasm for Pravda and his paper I am interested in seeing exactly what it says.

The path of this disease is so different for everyone it makes me skeptical that a cure will be found any time soon. Some can use only mesalamine to keep the disease under control, others can do it with diet modifications or alternative theories, some need stronger meds and there are so many different meds now. Each one works a little differently and some find success with one but others don't work for them. What I do have great hope for is that within a few years there will be tests that can determine what the best treatment plan is for each individual so we don't have to just keep trying things until we find what works for us.

I hope that your current protocol works a lifetime for you. I know that you are convinced that "this" is the answer. I seem to recall that you thought the same thing about the previous treatment that worked for you ... until it didn't and you went into a 2 year flare that you treated with prednisone. I really, sincerely, hope this this time is the ticket for you. Just be open to the idea that it may not be the answer for everyone else.

Yes, study design and repeatability is just as important as peer review. This is true.

Bringing up my personal history is uncalled for. You don't know all the variables involved and it's not as simple as reading my forum posts to form such a judgment call. I will not address this point further.

Your doubts have been made clear. Thank you for your contribution.
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VanJordan
Veteran Member
Joined : Dec 2019
Posts : 566
Posted 7/24/2022 1:53 PM (GMT -8)

poopydoop said...
And I would like to emphasise that many of the newer treatments like xeljanz, zeposia etc are NOT biologics.
Being unresponsive or partially responsive to biologics is NOT a predictor of how you will respond to other classes of drugs. (And vice versa).
I think it's important to be clear about ALL the options available to people.
I've followed Dr Pravda with interest including his linked-in profile and found his writing is emotive and at times misleading in a way which would appeal to non specialists. If he's found something that helps put a bunch of UCers in remission then great. I hope my doubts about his professionality are unfounded.

Each class of drug has its own efficacy rating and they are all low. If you are a low responder to biologics now then you will likely remain that way, across that drug class. The same is true for other classes of drugs. For example, if you are a low responder to steroids then budesonide, cortifoam, and prednisone are likely to have low efficacy.

Modern medicine tries to compensate for this in low responders by putting them on several different classes of drugs, increasing efficacy but also increasing side effects and creating possible quality of life concerns.

Our collective hope is for a treatment that does not require elevated risk/benefit ratios. We want something that is curative (or permanently remissive, if you prefer), easy to take, and has a low side effect profile.

What is different about Dr. Pravda's theory is that he has actually discovered the root cause of UC, where nobody has before. There was just speculation or strong opinion. Secondly, in a person who has idiopathic UC (i.e. not due to poor blood flow, infection, etc.), which most of us do, the root cause is virtually the same: too much hydrogen peroxide. The source of the excess may be different. Maybe a person has normal genetics but they have high mercury, which is disabling their antioxidant enzymes. Or maybe they have poor SOD2 or GSTP like I do.

That said, we need his paper to come out before anything is decided.
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VanJordan
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Joined : Dec 2019
Posts : 566
Posted 7/24/2022 1:56 PM (GMT -8)

Hambo88 said...
Dr. Pravda has a video on yotube with some comments....some comments more than 6 months old, and Dr. Prvada presponsed for this old comment the new paper will be published very soon, ...6 month has passed and there is no new paper....I hope the new paper is coming realy, i trust Dr. Pravda very much, but parallel i have a critical feeling in this process, beacuase i dont know why they need such long time to publish a paper????
I hope very much Dr. Pravda is not a cheater,...but in the same time i trust in him very much to solve our problem.

Anybody can publish a paper. Pravda could post his paper tomorrow. But peer review takes time, especially if the panel comes back asking for more data, clarification, or rewrites. Also, as far as I can tell, Dr. Pravda is not affiliated with a major institution, so without a big team behind him it takes longer.
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Pinocchio
Regular Member
Joined : Jun 2022
Posts : 23
Posted 7/24/2022 2:29 PM (GMT -8)

CCinPA said...
wow! Makes me wonder what your previous name was and why you were banned. I doubt that it was because of anything you said in this thread, but if you were banned then the admin had your IP from then and didn't take kindly to you trying to come back with a new name.

But really ... what did you do to get banned in the first place? I assume you went someplace else to get on the internet since you posted above. Sooo .... tell us who you were before lol

I always been only a reader and never had an account. This topic made me want to enjoy the discussion, so I made my first account, asking VanJordan about his opinion about Cistus Incanus (Rock Roses) and the Chaga Mushroom, which are both high in Antioxidants. After that, my comment got deleted and my account banned from the Ulcerative Colitis Forum. That's why I made this second account.
I'm currently writing from my mobilephone, so the IP isn't the same.

Post Edited (Pinocchio) : 7/24/2022 3:32:34 PM (GMT-7)

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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2524
Posted 7/25/2022 4:42 AM (GMT -8)
hmmm .... that doesn't sound like something to be banned for. Have you tried to contact the admin?
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IamCurious
Veteran Member
Joined : Jan 2010
Posts : 3692
Posted 7/25/2022 7:22 AM (GMT -8)

CCinPA said...
hmmm .... that doesn't sound like something to be banned for. Have you tried to contact the admin?

Yes, inform the admin. Moderators have been known to ban members by "accident".
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Hambo88
Regular Member
Joined : Feb 2018
Posts : 257
Posted 7/25/2022 10:58 AM (GMT -8)
Today I have received my hydrogen water generator, I have critical feeling in myself nevertheless there is tons of positive study regardig the hidrogen water. Theoreticaly the hidrogen is the strongest antioxidant in the nature. He is 176 times C vitamin, 431 times Vitamin E, Coenzyme Q10 863 times...SO theoreticaly is very strong....but i will be very wonder for the absorption....
Today i have drunk already 1,5 liter hidrogenized water.... smile nothing special feeling but my mood is much worst than normal case, i feel little depressive feeling.
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Mark4623
Regular Member
Joined : Jun 2022
Posts : 56
Posted 7/25/2022 11:38 AM (GMT -8)
Hydrogen water generators work well with certain kinds of water, but things can go awry faster than one might think. The majority of hydrogen water generators work in a way that puts something else into the water. Depending on the technology, some of these generators put chlorine, ozone, and other byproducts into the water. And the worst part? These hydrogen water generators may put these additional byproducts into your drinking water, and many of the manufacturers don’t even tell consumers what they should expect to drink!

The positive plate is generating oxygen, and with this chemistry combined with other molecules found in your water, other elements are created on this plate. If there are any chlorides or salts in your water, the positive plate is going to generate chlorine. This is the same chlorine you’ll find in swimming pools. And when ozone is generated on the positive plate, it’ll put it into this drinking water.

Just a thought...
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