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Posted 8/30/2022 7:56 PM (GMT 0)
Just wondering how people are getting on who started using antioxidants inspired by the redox thread or recent hydrogen peroxide paper.
My background in brief is: perforated intestine, sepsis, emergency temp ileostomy and chop out of the broken bit, subsequent ileostomy reversal and resection, prednisone, azathioprune, 6mp, remicade, entyvio, double entyvio, currently on stelara. I try to prop up the drugs with anything that might help including gluten free, loosely follow ibd-aid diet, extra vitamin d b12 and iron, fermented fish oil (yum), herbs and bone broth when I can face it.
Feeling pretty awful from around may so added gradually grape seed extract, quercetin and black garlic, just adding in turmeric. I have to be careful with turmeric due to anaemia.
I would say slightly improved. Will be interesting to see if my stelara induced psoriasis comes back this autumn like last year. Due a blood test soon not due a stool test for several months.
Curious to hear how others are getting along.
Posted 8/30/2022 8:59 PM (GMT 0)
HI Delta.

Given the controversary this topic has created and the amount of ill feeling and nasty comments made (remember the comment that Mark made to one of the members on here) do you not think it is best to maybe steer away from this topic. You have the email address of the members who wish to discuss this and my understanding is there is an active site where all of such is discussed in full. You could post there among people who have a genuine interest in the topic rather than the members here who in good respect want to move on from these ideas.

I would say post there instead of here in the interest of keeping all discussions civil and in accordance with the rules. There is more to be gleaned by you on that other site and very little here in regards to that topic; only controversary.

Kind regards,
Posted 8/30/2022 11:25 PM (GMT 0)
Thanks for your suggestion. I have an alternative which is that people who are not interested in the thread ignore it and people who are interested reply as they wish, being mindful of the rules of the forum. I don’t read threads about hookworm treatment for example.
The problem with being exiled to a group in cyberspace is that any future forum users wishing to find out whether the antioxidant theory turned out to be brilliant, so-so, useless or harmful won’t be able to.
I also think there is something slightly unhealthy about banning an entire topic that is relevant to this disease. You might have heard of an English professor called John Herman-Taylor - long written off for his ideas about a map vaccine but he persevered and now decades later they are finally trialling it so we get to find out whether he was right or wrong. Imagine if he had been shut down because many thought he was wrong. Another door closed which there is a slim chance will be the one we all eventually gratefully walk through.
I do recall the nastiness - “van quack” was a particular low point - I hope people won’t repeat such unpleasant behaviour.
So I’m summary thanks but no thanks as I am interested in hearing from anyone with helpful comments.
Best wishes, Delta
Posted 8/30/2022 11:48 PM (GMT 0)
Damo, you are starting to sound like You-Know-Who's mirror image, what with you trying to control what people can talk about. Alternative treatments are not my jam personally, but such discussions have been going on for as long as HW has. There's room for both approaches.
Posted 8/30/2022 11:56 PM (GMT 0)
Have the people using the "alternative site" been given instructions to keep boosting the topic on Healingwell? I just find it bizarre that every couple of days a "reminder" post on the subject pops up. It's verging on proselytising.

There are hundreds of diets and supplement regimes that help people.

Elaine Gottshall wrote a whole book on the diet which helped her daughter's UC, aka the specific carbohydrate diet. The book is on amazon and from the hundreds of verified purchasers leaving 5* reviews you can see that the odds are the diet does help many people.

If something is really effective, people will find it without the need to constantly "push" or "sell" it to other UCers.

Maybe I am just too long in the tooth... when I was in the first 1-2 years of diagnosis, I really wanted to find a "cure" and was incredibly open minded to try things. Now I'm more accepting of the idea that my body does stuff I can't control and that if there was a simple cure, there wouldn't be so many people suffering.

Apart from that delta hippo I hope you can get some relief one way or another.
Posted 8/31/2022 12:07 AM (GMT 0)
Well for what it's worth, I am interested in reading about this topic -- NOT the fighting that went along with it - but I would like the discussions and updates to continue. But no fighting. Am I dreaming?
Posted 8/31/2022 1:24 AM (GMT 0)
I asked that question a couple times on the last thread that was locked and, if I remember correctly, the only person claiming remission was the person pushing the theory. There were some others who said they felt better, but they had recently started new meds so there is no way to tell if it was the meds or the antioxidants (after that was pointed out is when things got out of control).

I don't mind when people discuss alternate therapies at all. I DO have a problem when someone claims it's the root cause or a cure or trashes meds. I will comment then.

I am curious if anyone achieved remission on the antioxidant protocol and if so, I hope they share details -- exactly what they are taking, including meds, and how long they have been in remission.
Posted 8/31/2022 3:59 AM (GMT 0)
It is interesting to find out if something helps others. I don't have any issues with alternative treatments or the discussion of them.

Everyone just has to keep their cool. We need to find a way for honest logical discussions.

I do have a problem with people pretending to be someone else.... Or with people calling names... Or those strange posts that suddenly appear from a new person just to challenge or promote something. They just leave me thinking someone is being sneaky... Sly.....

I also think that we should welcome differing opinions....even within the same thread. There should be people questioning and debating, plus sharing their experiences.

Clo
Posted 8/31/2022 6:00 AM (GMT 0)

CCinPA said...
I asked that question a couple times on the last thread that was locked and, if I remember correctly, the only person claiming remission was the person pushing the theory. There were some others who said they felt better, but they had recently started new meds so there is no way to tell if it was the meds or the antioxidants (after that was pointed out is when things got out of control).

I don't mind when people discuss alternate therapies at all. I DO have a problem when someone claims it's the root cause or a cure or trashes meds. I will comment then.

I am curious if anyone achieved remission on the antioxidant protocol and if so, I hope they share details -- exactly what they are taking, including meds, and how long they have been in remission.

Nobody can not do the pravda protocol at this moment because a very important component there is no on the matket now.
There was a theory and based on this theory Van Jordan created his own treatment.
I aggree the result is very important!!
We can define effectiveness of a treatment based on the results.
Posted 8/31/2022 6:07 AM (GMT 0)
I will chime in. Tried most of the listed antioxidants for a month and it definitely helped and I enjoyed the learning about the information but no it was not a cure for me in anyway. But I have always felt anything that can help is always a good thing and constantly learning should be encouraged IMHO. Unfortunately this isn't the place for that. I've been a member for a long time and stopped posting shortly after my diagnosis here due veteran's the same ones today that try and control the atmosphere and ruin it. I never felt welcomed or free to ask questions or discuss anything because they would swoop in for their precieved correction. Yes I would normally be one of those quiet ones, posters never thought existed but do. It is sad that a small handful of forum squatters rule here for over a decade but here we are. I feel it turns others away as it has me. But at the end of the day the regime did help and I'm grateful for that it is sad however that some just can't leave something alone after you have said your peace and move on, by not doing that Yes you ruin this place for people.
Posted 8/31/2022 6:15 AM (GMT 0)
Bad Gut,

How did it help you? We're the supplements expensive?.

I'm currently on a boat load of supplements and it's costing me about 200. A month for them..... I've tried the lesser priced versions but they don't seem to work as well... So sticking to the ones I am currently taking--which help me feel alittle better but are by no means a cure or substitute for my current meds. They will have to remain an"add on".

Clo
Posted 8/31/2022 1:58 PM (GMT 0)
The research people really need to look more into identical twins one gets IBD one does not. So what's really going on. Oldmike
Posted 8/31/2022 2:21 PM (GMT 0)

Old Mike said...
The research people really need to look more into identical twins one gets IBD one does not. So what's really going on. Oldmike

They are doing that at my hospital 😁. When I went for my first appointment they asked me if I had a twin. Sadly not...
Posted 8/31/2022 2:28 PM (GMT 0)

Bad Gut said...
I will chime in. Tried most of the listed antioxidants for a month and it definitely helped and I enjoyed the learning about the information but no it was not a cure for me in anyway. But I have always felt anything that can help is always a good thing and constantly learning should be encouraged IMHO. Unfortunately this isn't the place for that. I've been a member for a long time and stopped posting shortly after my diagnosis here due veteran's the same ones today that try and control the atmosphere and ruin it. I never felt welcomed or free to ask questions or discuss anything because they would swoop in for their precieved correction. Yes I would normally be one of those quiet ones, posters never thought existed but do. It is sad that a small handful of forum squatters rule here for over a decade but here we are. I feel it turns others away as it has me. But at the end of the day the regime did help and I'm grateful for that it is sad however that some just can't leave something alone after you have said your peace and move on, by not doing that Yes you ruin this place for people.

I'm sorry you felt that way. I value your input! I am aware that I get cranky with regards to one particular member (now banned) and one particular treatment protocol, because I see posters resorting to untruths or outright lying to support their viewpoint, and I see a doctor behaving in a way which is morally questionable. I'm really intolerant to that. I don't doubt diets and supplements have their role for some people. For what it's worth, the "veterans" that you speak of can be put on ignore. Sometimes I do this for a few months if someone is annoying me. It makes posting here a more pleasant experience. I've only been on HW for about 4 years so can't really comment how it was further back in the past. I do think people have a lot more online resources today than 10 years ago so HW has stiff competition.
Posted 8/31/2022 3:37 PM (GMT 0)
@Bad Gut, I clicked on your name after reading your post, it appears you were posting in 2015 & then stopped until this post. I read through the posts & did not find anyone flaming you & it looked like there were not any problems in those threads.

To return & call members names is not productive at all.
Posted 8/31/2022 3:47 PM (GMT 0)
Thanks for all the input guys and girls. One of the reasons I wanted to stay on this forum is there is a lot of experience and willingness to help. I’m just off to see consultant for my annual review- first one in person since covid - so wish me luck. Not expecting to have time for a debate on the merits or otherwise of antioxidants but I hope to ask him if he had a small budget for alternative treatments that might help support the stelara what would he spend it on (supplements, herbs, vitamins, acupuncture, decent reading material for the inevitable hospital stay)?
Currently I’m thinking about adding a liquid magnesium/ hawthorn berry/ vitamin e combo next (by Salus) and holding the turmeric til I have had my next bloods so I can assess any impact on iron levels.
Posted 8/31/2022 3:52 PM (GMT 0)
Clo - you make a great point about how expensive all this stuff is - I dread to imagine what I have spent over the years - and very hard to tell whether some of it helps or not. The only thing I can confidently say so far is that iron and b12 (sublingual spray) are definitely helpful and last winter neals yard calendula cream helped minimise the amount of steroid cream I needed for the psoriasis.
Posted 8/31/2022 4:12 PM (GMT 0)
I tried the advice given about this anti-oxidative supplements....with an open mind after reading the back and forth post over the last month....tried all the items listen in Van J's post....totally and utter disaster....made me sick, worsened my BMs, gave me headaches and brain fog...thought it might have been a herx so continued on....symptoms got even worse....said it to my PCP at my monthly visit and he advised me get off all that stuff and give my system and break

Feeling better this week now I stopped. Maybe it works for some but it sure ain't no cure for all
Posted 8/31/2022 5:36 PM (GMT 0)

Simon1729 said...
I tried the advice given about this anti-oxidative supplements....with an open mind after reading the back and forth post over the last month....tried all the items listen in Van J's post....totally and utter disaster....made me sick, worsened my BMs, gave me headaches and brain fog...thought it might have been a herx so continued on....symptoms got even worse....said it to my PCP at my monthly visit and he advised me get off all that stuff and give my system and break

Feeling better this week now I stopped. Maybe it works for some but it sure ain't no cure for all

What did you take exactly? and what was the amount of tue suplements?

This is also a feedback, we have to this kind of feelings too.
Posted 8/31/2022 6:50 PM (GMT 0)
i followed what was listed in the Van Jordan thread....to the letter....nothing worked for me only worsened my condition and made me feel sick....glad it works for some but i will not be trying this procedure again
Posted 8/31/2022 9:59 PM (GMT 0)

Simon1729 said...
i followed what was listed in the Van Jordan thread....to the letter....nothing worked for me only worsened my condition and made me feel sick....glad it works for some but i will not be trying this procedure again

i understand and sorry, but what did you take exactly ( what kind of supplements) and what amounts?
Posted 8/31/2022 10:10 PM (GMT 0)
I've become a lurker here too, haven't posted in a long time. Just wanted to drop a note to say that VanJordan's ideas and this doctor's research are helping me a lot, more than anything has. Not sure if VanJordan reads HW still or not, but he needs to know that a lot of us read but don't post. His info is appreciated and we benefit, so thanks man. Wish I could write to you, I'm still trying to find out how. It's sad to see this forum hasn't changed one bit since I was last here. You guys are so afraid of change that you get threatened by anybody with a different idea. You guys didn't treat me well when I was here last because I was vocal about my medical decisions. When it's pointed out that you're this way you double down. It looks like the admin banned VJ some time ago but you're still badmouthing him. Says it all really, that you'd do that to another patient in your own community. Some people here are immune to punishment and new ideas to boot. It's why I don't post anymore. I don't expect some people here to really think about themselves and try to change.

God bless Dr. Pravda and patients like VanJordan who fight the good fight to help people like us who's UC is very stubborn. I'm trying to avoid colectomy and it's troopers like these guys who keep our bodies in one piece. No insult intended against ostomates. I came here to say that and to also find out how to contact VJ.
Posted 8/31/2022 10:40 PM (GMT 0)
I remember you MarkWithIBD. You had a temporary ban placed on your account for fighting and attacking mods.

Did the helminths help you in the end?

VanJordan created his account the same day you got banned. What a lucky coincidence.
Posted 8/31/2022 10:48 PM (GMT 0)
Amazing how all these 'Marks' seem to have a link with VanJordan....and the pravda protocol seems to work for all of them too.....wish i had been called Mark!!!!
Posted 8/31/2022 10:58 PM (GMT 0)

poopydoop said...
I remember you MarkWithIBD. You had a temporary ban placed on your account for fighting and attacking mods.

Did the helminths help you in the end?

VanJordan created his account the same day you got banned. What a lucky coincidence.

Helminths didn't work. Tried two different kinds, NA and TSO. TSO helped at first then stopped. NA made me worse.

Are you trying to say that I'm VanJordan now? You are one of the ones who made my life terrible here last time. I'm not here to fight with you, it just leads to me being punished and you roaming free.

I came here to find out how to contact VanJordan then I'm out of here.
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