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Comedybob's LDN Update - Part II

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Crohn's Disease
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Posted 12/7/2010 2:45 PM (GMT 0)
https://www.healingwell.com/community/default.aspx?f=17&m=1927759

This is a continuation thread for comedybob's LDN updates on his son.

Posted 12/7/2010 6:51 PM (GMT 0)
Blood tests tomorrow! yikes. I raised the LDN dose to 4.5 on my own last week. I just open a couple of 3 mg caplets, mix the contents with 20 mils distilled water, and ad 5 mils to his regular pill each night. he says he seems to feel a little better. enough putting off the inevitable. time to see if this is really working.
my wife is getting ready to add the low fod-map diet, but I think. if he is doing okay, it's just cruel to do this at Christmas time.
Posted 12/7/2010 9:29 PM (GMT 0)
I don't know if you saw my post on Fodmap to Kiwi, but I am doing modified Fodmap to make it a little easier. Maybe to start (and during the holidays) you could do some not all and see if it helps.

I felt like the excess fructose was my main issue. I have never had issues with lactose or wheat so I still eat those things and follow everything else. Just omitting juice, the No veggies, and No fruits has made a world of difference. I feel like LDN is finally really kicking in and haven't felt this well in months.

At first I was doing just LDN. Now I am doing LDN, Olive leaf extract (just a maintenance dose), and modified Fodmap.

Just my 2 cents since your son and I seem to be on a similar path!

I hope your sons blood tests results are awesome!
Posted 12/8/2010 1:22 AM (GMT 0)
Thanks for the update! Good luck with the tests! 
Posted 12/13/2010 1:53 PM (GMT 0)
test results back. CRP is down from 71 to 46. still not good, but down. ESR is up from 35-36. Iron is up to 4 from 3 hemo is down to 99 from 112. my wife wants to give up on LDN. we are going to start the FOD-MAP diet right after Christmas, either inconjuntion with LDN or on it's own. Next is Remicaide
Posted 12/13/2010 10:50 PM (GMT 0)
Dang, sorry to hear this. Are you saying the Ferritin is only 4? If so, combined with the low hgb, he seems to be a candidate for an iron infusion. 
Posted 12/14/2010 1:47 PM (GMT 0)
We have an appointment with the GI today. Will mention an iron infusion. my personal preference, if we have to go with more meds, would be entocort with LDN for maintenance. any thoughts folks?
Posted 12/14/2010 6:37 PM (GMT 0)
Cimzia.
Posted 12/14/2010 7:18 PM (GMT 0)
Bob I think any drug is more risky in a kid.  Their high growth rate seems to magnify any chances for cancers.  That said, if you think it is time to throw in the towel on what you are doing then Remicade may be a good choice.  It brought me back from the edge this year BUT I am not a kid.

Did you ever watch that link on CD treatments?  I am not at home let me see if I can find it............Ah here it is.  Check it out

http://programs.rmei.com/CCFA139VL/start.html

Posted 12/14/2010 7:25 PM (GMT 0)
Thanks for the link
I don't want to, but my wife thinks LDN is a waste of time, as does the GI. if we go the Cimzia route, i have no intention of using it long term. get him through teen growth, and stick to the LDN. that's my plan, but I'm being out-voted.
Posted 12/14/2010 8:03 PM (GMT 0)
They say that if LDN isn't working well enough, to cut out gluten, dairy, and sugar: http://ldn.proboards.com/index.cgi?board=links&action=display&thread=1483


*activated your link*

Post Edited (spookyh) : 12/14/2010 3:55:26 PM (GMT-7)

Posted 12/14/2010 8:20 PM (GMT 0)
Bob I know some are having success with LDN when combined with diet. Maybe have him stay on the LDN and add the Fodmap diet??? Just a thought. I am so sorry this didn't produce better numbers for him.

I know you are anti traditional meds, but for your son's welfare they may be needed. And if a med is working you shouldn't stop it, or he could wind up in worse shape. Believe me I learned that one the hard way, and never would want that for your son. Hugs to you both!
Posted 12/14/2010 8:54 PM (GMT 0)
Well, I am not a kid. But I constantly struggle with traditional meds vs alternative therapy. I first had Remicade when I was 21, my parents wanted me well and they thought Remicade was my best option. At the time it really helped and put me in a several year remission. However 10 years later when Humira failed and the doctor wanted me back on Remicade, I refused even knowing how it helped the first time. I pay my own bills now and couldn't do it, even though my dad and fiance thought I should go back on it.

I can feel your wife's frustration with LDN. How long has he been on it now? I haven't quite been on it 2 months and would only consider myself in 90% remission. I still have some yucky days here and there. I do know when I added the Fructose/Fodmap modification and eliminated refined sugar I felt a huge difference, so maybe combining the 2 would help? I am hoping one day this really kicks in, my friend who takes it for UC felt like it wasn't helping until the 4 month mark and then felt significantly better, she is still in 100% remission at the moment.
Posted 12/14/2010 10:33 PM (GMT 0)
I am using a low dose of prednisone, if my inflammation increases, this in combination with LDN. It helps quite quick, and I only need to use prednisone for some weeks. I am using a low dose of 10 mg most of the time, but starts out on 20 sometimes 30 the first day.

Therefore, I agree with you using prednisone in this combo could help him increasing his well being. I would also have a look at a gluten free diet, IF he is sensitive to gluten the result will kick in within a couple of weeks. Wheat _could_ create increased inflammation, so why not consider it?
The FodMap is another thing to try, it's a diet that is doing something for people, reducing sugars and sweeteners from food and different vegetables.

Have you tried Boswellia Serrata - to reduce his inflammation?

I've found that your some of your sons values are better now after using LDN since august, aren't they? I agree with Nanners due to infusions.

Have to mention that having low iron values is typical when a person has gluten intolerance, and it's possible having a combination of Crohns and celiac diseases. (I even think that we could have an intolerance to wheat which can create inflammations in our guts, even if we're not been diagnosed w.celiac).
Posted 12/16/2010 2:34 AM (GMT 0)
We love Entocort, but it works only in patients who have Crohn's confined to the terminal ileum. If your son's Crohn's is anywhere else, it won't help, but otherwise it might be a great help! You probably already know Entocort is designed to be released mainly in the terminal ileum, so not as much of it gets into the rest of the body as prednisone - which means lower risk of serious side effects. You CAN combine Entocort with LDN. In fact, my daughter's labs were best when she combined both. She had already used Entocort to go into near remission, and tapered to just one pill, so when she introduced LDN on top of that one pill, along with dietary changes, at three months her CRP went below 1 and her sed rate went to 2.

Because Entocort can cause damage if taken for years, and does not induce full remission, I have been intrigued that Spookyhurst managed to have a clean colonoscopy thanks to a combination of diet, LDN, and Pentasa. Am wondering whether LDN + Pentasa, with or without SCD, might eventually make a good combo for my daughter.

But right now, my daughter is on strict SCD and trusty Entocort, which has again saved the day by nipping symptoms in the bud - if your son's inflammation is high, Entocort, rather than Pentasa, is more likely to induce near remission (as long as he doesn't have Crohn's in the stomach, duodenum, etc - but has only in TI). 

I seriously doubt LDN can control Crohn's effectively in my daughter, even with the SCD. SO right now she is planning on introducing Pentasa while she tapers down to Entocort, and then throwing in LDN on top of Pentasa soon before getting off the Entocort.

Posted 12/16/2010 7:36 AM (GMT 0)
I felt less apprehensive about remicade after I watched that video on the link I gave you but that isn't why I started it. I went on Remicade because I was so sick and in so much pain that I really had no other choice left. I think perhaps your boy is in that boat. Look you wouldn't jump in sewer water would you??? But you would if you were on fire. Well I think perhaps your boy's intestines are on fire like mine were so it's time to get wet. Cup Cake above had several years remission as a kid on the drug and this, if it works for your son, could allow him to build some bone and muscle mass and give him a chance to grow and flourish for a few years until something better comes along. I sure do understand your reluctance. I don't even like to take an aspirin for a headache but sometimes a dip in sewer is the only choice. Good luck
Posted 12/16/2010 1:59 PM (GMT 0)
Funguy- I actually have jumped in sewers(wastewater technology course). my boy isn't in alot of pain. some days none, some days one or two twinges lasting 10-15 seconds, but nothing that slows him down at all.He has grown an inch since may, which is great(I think). We gave him the choice between Remicaide, Cimzia, or carrying on wth just LDN. He chose Cimzia. We are thinking the same as you. If we can get him through adolesence, we will be happy, and so will he for the most part. Right now, I just want to get through Christmas
Posted 12/16/2010 3:47 PM (GMT 0)
I'm currently on LDN and Humira, I hoping that eventually I'll be able to cut out the Humira completely but my body wasn't ready to depend on LDN alone. I get my perscription for LDN from Dr. Jill Smith from the Hershey Medical Center, she is one of the doctors who has done a lot of research and studies on LDN. She said she has patients who had success being on LDN and Humira, it takes longer for the LDN to kick in but it eventually does.

Me and my parents agree that I don't want to depend on medicine like Humira for the rest of my life but it is the best option right now to get me to a better place so I can focus on really staying healthy.

Good luck to you and your family!
Posted 12/16/2010 5:51 PM (GMT 0)
Sounds like a good plan Bob. I will be looking forward to hearing positive results and weight gain and the like. My class D Wastewater license expired 10 years ago. Never did jump in though lol. You kind of ruined my metaphor lol. Glad he isn't hurting much though.

He is lucky to have a great advocate like you. I could have used one myself at his age. Alas I am the shortest male in this generation of my family. Could be just the way it was meant to be but I wonder if I was diagnosed and treated sooner??????? Good luck and Happy Holidays.

Guy
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