Starting LDN + Remicade

[Keno]

So I have been on remicade for awhile. Looks like again, I might need to go up in dosage, or bring it in to every 4 weeks. Rather than do this I would like to try LDN. I have read that the myth of taking anti tnf drugs + LDN can be counter productive. Some of you have cleared that up, but no one mentioned remicade being ok with ldn. So just to be sure I contacted Dr. Jill, and Dr. Zagon. Both said taking remicade with LDN would be fine. So I ordered my ldn, and will not stop remicade until ldn finally works (hopefully). It is just always that last week before remicade that always gets me!

Anyone have any comments on how sick you supposedly get first on LDN? I heard it kinda makes you feel sick before it works its magic ??

 

[QueenGothel]

How are you doing now?

 

[Kev]

Well, things definitely got worse for me before they got better, BUT... I was flaring out of control AND weaning off pred. I switched to LDN (basically just LDN, I say this because tho I was continuing my 4G of Salofalk, I'd never stopped taking it even tho it did nothing of notice to quell my disease before going to LDN. I still continue taking it, yet I have zero indication it ever did anything positive). If Dr's Smith AND Zagon are both in favour of your using Remicade with LDN, you couldn't have better authorities on the subject. I suspect the one/two punch combo you giving Crohns should be a big hit. I wish you all the best, and regardless of how it turns out, keep posting with updates.

 

[QueenGothel]

I didn't realize this was you. You were keno before kev?

 

[Kev]

Nope, I'm still Kev. (real name, not psuedonym). I was responding to Keno's question as to how sick supposedly one could get on LDN. I should have prefaced my response better, and directed it to Keno.

 

[QueenGothel]

Trying to get the LDN

Kev, i read you diary and wanted to tell you your story sounds a lot like my daughters in the 6 months she has had the disease. She started bleeding again today. There is so much going on over here. I can't even talk about it right now. I talked to the OnCall GI that works with Rowans GI earlier today. Of course I brought up the LDNscience.org website. Well I had to call her back bc Rowan kept bleeding today. She said she would talk to Rowans GI about LDN. I just told her I would like a GI to monitor her in the process. We have to try before removing her colon. We need a plan B and C. I figured a he is a U of M doctor in a teaching hospital, sounds like the perfect environment to me.

I hope it helped. Still planting the seed in the GIs ear. We shall see if I get anywhere.

Hope you doing well. Happy St Patricks day.

 

[Kev]

Hey Myreinhard

If your daughter has the same type/kind of it (IBD) that I had/have, you have my deepest sympathies AND my wholehearted prayers. My case initially stumped/confounded the best doctors in the field in this area. The disease spread so fast, so completely, that first they didn't believe it could do that... they thought I was mistaking/exaggerating the amounts of blood I was losing. I had to use a digital camera to photograph what was coming out of me. That persuaded them to take another look. That led to emergency surgery. Since they thought it was colitis, they pronounced me cured. The 3 month checkup scope seemed to confirm that. But then the bleeding all came back, worse than ever. The next scope told them that all of my remaining colon was involved, except my surgical scar. But again, since it spread so fast/so uniformly, they were still of the opinion it was colitis. But my GI wasn't so sure. The surgeons didn't bother with biopsying (word? sp?) what they removed, and the surgery before that was done laproscopically, so again no biopsy. But Crohns doesn't present like that, it is usually it splotches... a bad spot here, another there, but certainly not eveywhere.
Then I developed a fistula, and when that was factored in, it couldn't be colitis. So back to square one. They labeled it 'atypical IBD', and it stayed that way until a biopsy was done last year in connection with the pre-cancerous cells they found. Finally, the verdict was in.. Crohns.. a very rare and unusual form of it, no doubt, but crohns. And it only took 5+ years to label. In the long run, having a label they could put on it didn't gain me anything. Anyway, my long winded point is... if someone tries to pigeonhole your daughters case, don't put a lot of faith in it unless/until they have incontrovertible proof that they have the diagnosis right. Some docs are of the opinion that colitis can readily be cured with surgical removal of the colon. But if it isn't colitis, then you might just turn crohn's colitis into crohns disease... and you've bid farewell to a colon forever.

 

[QueenGothel]

Well she was diagnosed with mild UC in October out on asacol. Since she has been hospitalized for a total of 45 days within two stays. She has had 4 blood transfusions. Is now on pred and Remicade (covered completely by insurance) has had 3 infusions and is still in cronic pain and suffering from repeated rectal prolapse. They never got a complete colonoscopy bc of a bad prep so we are really fighting this disease blindly. They did a MRE and verified UC. Scary stuff bc as you said don't want to remove it and her have crohns. Hoping we can try LDN and SCD. Time will tell if we have enough time to get this done b4 a colectomy. Preparing for the worse, praying for the best, will be happy with some remission even if for a little while in-between. Thanks for the response. She has had a really rough go. Her doctors are baffled also. She went from mild to severe in 5 months.:ywow:

 

[Kev]

Yeah, that sounds familiar... I went from like 2 inches to 1 1/2 feet within 2 months, then from all clear to 4 feet involved within 3 months. Mine spread like wildfire, and my very 1st surgeon (department head who teaches the young GI's at the university medical school) was CERTAIN it couldn't have spread, then took a look inside, and not only admitted he was wrong (and did the emergency surgery) but very humbly apologized to me to boot. Said he'd never seen anything like it in his 30+ year career. I think the bugs are getting stronger.