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Ulcerative Colitis
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Posted 8/31/2022 11:32 PM (GMT 0)
Well no joy sounding out my GI today as he has delegated the clinic to his trainee and she was running an hour late. The excellent news though was that my last stool test has come back with a FCP of 135. This is still outside normal range (below 50) but where I live they stop counting at 600 and I have been 600+ most of the time. Entyvio briefly got me down to 400 something then shot back up. Stelara dropped me to 140 something, then crept up to 301, so to hear 135 today when I was fearing it had crept higher is amazing.
Obviously I am not saying antioxidants are responsible- I’m on stelara special diet herbs and all sorts. But I am going to continue what I’m doing in case the antioxidants have made any contribution to this fantastic result. Today is a great day for me and don’t get a lot of those with Crohn’s. I’m going to stop now as getting a little tearful. Blessings all xx
Posted 9/1/2022 12:07 AM (GMT 0)

Delta_hippo said...
Well no joy sounding out my GI today as he has delegated the clinic to his trainee and she was running an hour late. The excellent news though was that my last stool test has come back with a FCP of 135. This is still outside normal range (below 50) but where I live they stop counting at 600 and I have been 600+ most of the time. Entyvio briefly got me down to 400 something then shot back up. Stelara dropped me to 140 something, then crept up to 301, so to hear 135 today when I was fearing it had crept higher is amazing.
Obviously I am not saying antioxidants are responsible- I’m on stelara special diet herbs and all sorts. But I am going to continue what I’m doing in case the antioxidants have made any contribution to this fantastic result. Today is a great day for me and don’t get a lot of those with Crohn’s. I’m going to stop now as getting a little tearful. Blessings all xx


Be carefull!!!
you will be the next member who will be threated that you are Van Jordan!!! :D
Posted 9/1/2022 12:12 AM (GMT 0)
MarkWithIBD
Click on Van Jordans profile name, and his email will be there. Good Luck
Posted 9/1/2022 12:35 AM (GMT 0)
Simon -- so sorry you are struggling. I hope you find something that works for you.

I hope that others can share their stories on whether the protocol works for them or not. I still would like to know if anyone has achieved remission.
Posted 9/1/2022 12:41 AM (GMT 0)
Good to see everybody jumping on this thread also to accuse people of being the new VanJordan. As previously stated many many times in these threads would it not be less fractious if those that felt the need to jump in and crap all over these threads didn't bother and left the discussion to those who did enjoy them or felt they helped?

What is the aim of everyone trying to turn these threads into arguments? What are you all trying to gain or frightened of? I'm genuinely curious. These topics would go on without you. If you're not interested don't read them maybe? I don't read surgery threads or stelera threads or helminth threads or "funny" threads, I move past them.

Be impartial or act more like Oldmike who only says something informative or helpful. This is meant to be a supportive group and once was really good in that regard.
Posted 9/1/2022 12:49 AM (GMT 0)

MarkWithIBD said...

You are one of the ones who made my life terrible here last time.

Forum Rule 3: No posts that attack, insult, flame, defame, or abuse others
Posted 9/1/2022 1:05 AM (GMT 0)
Yes they were very expensive over 200 dollars. What I'm going to try now is less antioxidants along with OOO and I ordered LDN that is now coming. Going to do 4.5mg of that and 3 drops of OOO once or twice a day. Speaking of the number of Marks on here one of them was really big on Oil of oregano and it has been one of the biggest helpers I have had over the years. Very thankful to whoever he was at the time, not sure if he is still around.
Posted 9/1/2022 3:54 AM (GMT 0)
People,

Stop accusing others of being Van Jordan. Stop accusing people of accusing people of being Van Jordan. Stop whining and complaining and trying to get your childish little digs in. Just stop. We are acting like little children. Good grief it's like herding cats.

Obviously Van Jordan decided to share his information in a different way. That's ok. It's equally ok for others to post information indicating that the protocol under discussion may or may not work for others.

And if you are in the group of people advocating for Van Jordans protocol and you really do want to share the information and impact others ... Logical discourse while ignoring distractions is one of the ways to accomplish this.

If I hit the ignore button to ignore all the catty remarks the whole darn page would be blank! LOL..

We are better than this.

Clo
Posted 9/1/2022 4:01 AM (GMT 0)
Bad Gut,

I ordered my LDN from a pharmacy in Florida. It gave me very realistic nightmares. There was some discussion that you should ease into it. I didn't. I just started out at the stronger dose and kept on going. By the time I had started it I had fistulas and was very ill so I didn't get to try it for long. I ended up in the hospital with sepsis. I still wonder if I had started it earlier if it would have helped. I did try to incorporate it in with my current meds but my body could not handle it so I stopped

There is a lady in one of my support groups that uses it. She does ok regarding symptoms... But she found out that she has really bad inflammation and they think she's had it for awhile. So if you go that route... Or any route actually, I just recommend getting your blood work done and your scopes. Her blood work was ok.... So they were very surprised when they found ulcers and inflammation during her last scope.... And she had put off the scope for 2 or 3 years...

Just a thought. I hope it helps you.

Clo
Posted 9/1/2022 5:10 AM (GMT 0)

Hambo88 said...


Be carefull!!!
you will be the next member who will be threated that you are Van Jordan!!! :D

Or some members could accuse you of being a Van Jones groupie because that’s all you post about. Your last 50 posts in your profile are very revealing.
Posted 9/1/2022 6:09 AM (GMT 0)
Delta! Congrats on your lower FCP score! May it be the beginning of remission for you!

And everyone, please listen to clo! It is enough.

I hope the antioxidant theory does turn out to help. My only objection all along was to not say it IS the cure when nothing has been proven yet. And I find it really distressing to read posts bashing medicine because that’s just unfair and untrue.
Posted 9/1/2022 9:24 AM (GMT 0)
Delta,

That's wonderful! Did I read that you hadn't started the tumeric yet? I wonder if that would help you even more?
I take 1500.mg a day. It's a blood thinner so be careful. I had to stop taking it a week before my surgery.... And after 5 years of being on it..... Even that wasn't long enough. Blood was going everywhere whenever they stuck me. LOL. When I do get off if it my CRP goes back up to 15 .... It's usually around 10 or 11. So it makes a difference for me.

Clo
Posted 9/1/2022 4:48 PM (GMT 0)
Yes, listen to Clo everyone and behave! Or else she will send Crazed Roosters and Killer Spiders after you!!
Posted 9/1/2022 5:47 PM (GMT 0)

Serenity Now said...
Yes, listen to Clo everyone and behave! Or else she will send Crazed Roosters and Killer Spiders after you!!

Lol.

I think we need to take the good with the bad; the reality is that the internet is a huge benefit to us and especially those with chronic illnesses but it also comes with the bad part of trolls, misinformation, and people fighting on the internet. I am of the belief that if trolls and misinformation are not pushed back upon then they will continue and it will only get worse - I do not think that a patient/medical forum should be a safe space for that stuff. For that reason, I have no problem pushing back on trolls and misinformation.
Posted 9/1/2022 6:17 PM (GMT 0)
But Keith if someone is being respectful and just talking about something they believe in are they a troll? Maybe they’re not spreading misinformation but misinformed. We can give them the benefit of doubt.

Yes their information can be not quite up to snuff but that can be pointed out in a calm manner without resorting to insults. That’s what we were dealing with from you-know-who for so long. Let’s not resort to his level.
Posted 9/1/2022 6:33 PM (GMT 0)
People leaving HW to make a separate group is not going to help this support site grow. Plus We won't have the information of what to look out for if this protocol works or doesn't work. People that leave will not come back and post their results because they will feel they were kicked out or not wanted.

I don't want anyone suffering from IBD to feel as though we don't care or that we are excluding them. What a horrible feeling.....

Plus if people keep leaving and there aren't very many people on here---will they shut down this site? I know.... Selfish thoughts... But I really don't want to have to go to Facebook.

Don't worry about the spiders and roosters... Lol... My neighbor has been bringing her hens over and letting them "free range" under my porch and around my house. I'm seeing lots less spiders. They go home at night....and I am getting 6 eggs a day. Twiddle Dee and Twiddle dum are in this new rolling cage thing she has. The family has been helping me since I fell trying to get away from those roosters and spiders..... I knocked my kidney stone loose in the fall and had to have surgery.....so they are feeling incredibly guilty....and have vowed to keep those two in rooster jail. LOL.
Posted 9/1/2022 6:42 PM (GMT 0)
There is nothing wrong with having debates as long as they are respectful. Once someone starts being disrespectful the Mods will give a warning and close the thread. It's that simple. If you don't want to see a post by a member, put them on ignore so you never have to see them.
Posted 9/1/2022 6:55 PM (GMT 0)
Yes...because perfection and respect and nondisagreement just isnt going to happen because some want it to only be that way. And those who are fighting hard for it are also creating an issue.

q
Posted 9/1/2022 7:20 PM (GMT 0)

FlowersGal said...
But Keith if someone is being respectful and just talking about something they believe in are they a troll? Maybe they’re not spreading misinformation but misinformed. We can give them the benefit of doubt.

Why give Hambo88's post the benefit of the doubt? They do it to provoke a response and then cry about the response they get... it's just the way the internet goes.

Hambo88 said
"Be carefull!!!
you will be the next member who will be threated that you are Van Jordan!!! :D"
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