Somewhat dismayed...

TooManyHats · Post by **TooManyHats** » Mon Feb 28, 2011 5:32 pm

It's actually considered a "psychiatric" drug due to the fact that it's used as an opioid receptor blocker. Side effects such as sleep disturbance isn't at all uncommon with any type of medication that works in the brain. That's been my experience over many years of medication trials with my son anyway.

Linda in BC · Post by **Linda in BC** » Mon Feb 28, 2011 6:04 pm

Joe, on all sites that talk about using LDN, it is suggested that you should always start at 1.5 mg and slowly, over a course of a month or more, work your way up to the 4.5 mg max dose. And that is primarily because of the sleep dsturbances . So it's not my idea

Unfortunatley, this time around, I can't even get above the minimum dose! I got up to 3 mg last time, and never had any sleep issues except for the very first night I took it. Weird. I keep wondering what, if anything, has changed in my body, and the only differences is the last time I was not taking ENTOCORT!! But then... I haven't been taking Entocort for the last 8 days and it's still no better..

I am wondering, what diphenhydramine is? I've never heard of it. Is it somehthing like an antihistamine to prevent an allergic reaction ?

Linda

Joefnh · Post by **Joefnh** » Mon Feb 28, 2011 6:18 pm

Linda Diphenhydramine is the generic name for Benedryl. When I took Entocort initially it helped with the jitters. It is also used as a over the counter sleep aid.

--Joe

Linda in BC · Post by **Linda in BC** » Mon Feb 28, 2011 7:00 pm

Well, I'll be. I never knew that. I have some bennedryl here and yes, it sure does make me sleepy. Thanks, though I have pretty much decided to quit taking the LDN as the reason I was taking it was to have it support my tapering off the Entocort ( ie stop me from having D. ) and in that it has failed miserably!

Linda

Gloria · Post by **Gloria** » Mon Feb 28, 2011 9:08 pm

Linda wrote:I am finding this a bit of a dilemma.. while on the Entocort, I don't seem react to much, and can eat pretty much anything but my most reactive foods wheat, egg whites or casein. For example, I can eat all GF flours, and fruit and veggies ( raw or cooked.) But obviously I still have undiscovered intolerances. So how do I figure them out when on Entocort???

Linda,
I wish I had the answer for you. That's one of the conundrums with using Entocort. I have had the same experience as you. I've been fine while on Entocort, but once off, the D has returned with a vengeance. I will probably will be going off of it sometime this year and am worried history will repeat itself.

You might be a good candidate for the MRT testing. I don't recommended it for everyone, but I do think it has value for people who have spent a long time earnestly trying to determine their intolerances, have eliminated many foods in the process, but still cannot achieve remission.

I had already determined most of my intolerances by the time I did the testing. The new foods that it found reactive were mostly foods that I had not suspected at all, such as chicken, cucumber, beets, and cranberry juice. I was suspicious about some others, such as beef and potatoes, and the test confirmed my suspicions.

This time seems different, and I'm more hopeful that I have found all of my intolerances, thanks to the MRT testing. It's something you may want to consider.

Gloria

ant · Post by **ant** » Wed Mar 02, 2011 7:52 am

Dear Linda

Sorry to read this post. It is a real minefield finding a way to remission sans medication. I am thinking of you as you regroup and find another way through.

Best wishes, ant

Linda in BC · Post by **Linda in BC** » Wed Mar 02, 2011 11:10 pm

Aw, thanks, Ant. I started the Entocort again (1 pill only) the day before yesterday and took one again yesterday but not today and so far everything is good. I was thinking about what everyone said about probably having to take more than I had been, at first, to nip the flare in the bud, and it seems to have worked. I may try to wait a few days before taking another. I'll try one every four or five days again for a couple of months, and then MAYBE try to taper.

JoAnne, you know I agree-- being on Entocort, such a small amount anyway, is not really neccessarily a bad thing. I stopped mainly because I honestly thought I didn't need it anymore!! Sheesh! Talk about a positive thinker!

But as long as I need it, I'll be taking it!

Thanks, Gloria (and Polly, from another post) MRT.. Yes, I really think I should look into getting the MRT testing done. It sounds like it could save me a lot of time and grief as I do seem to have so many intolerances too. I thought it was the sort of thing that you had to go into a practitioner's office to get it done. I didn't realize it was done with blood tests. Should I pm Zizzle to get the name and info about the lab I send it to? When I did the Enterolab test , it had to be there within 24 hours and it was with FEDEX. Cost $40.00 but was well worth it. I go down across the border to send it and I think it's faster than if I sent it from Canada, so I could probably get it there on time.

Linda

Kari · Post by **Kari** » Thu Mar 03, 2011 9:53 am

http://www.nowleap.com/

Hi Linda,

So glad to hear you're back on track. The link to the MRT test website is noted above. I agree with others here that the test is very helpful - it takes away some more of the guesswork. Eating only low reactive foods is great for healing, as well as long term MC management. You can always go back to it when in trouble (which of course inevitably happens :)).

Lots of luck to you

on your continuing MC journey.

Love,
Kari

Linda in BC · Post by **Linda in BC** » Thu Mar 03, 2011 11:18 am

Thanks, Kari.

linda

Gabes-Apg · Post by **Gabes-Apg** » Thu Mar 03, 2011 1:36 pm

Linda
apologies for my tardy reply.

I have had a similar situation where sweet potato which was one of my main stays for about 12 months, has started to give me issues, not MC issues but digestion issues.

Just when you think you have your MC Management plan sorted it seems the cheeky MC Monkey/our bodies decide to change the rules a bit.... which is why it is important to listen to your body and be ready to change direction when required.

I would love to do the MRT testing, Joe and I even tried to figure out if he could take a vial of my blood back to the USA during his April trip (yes i know it sounds very weird like billy bob thorton/angelina jolie ha ha ha)
any information that helps us get the ingredients right is well worth it!

hope work is not too busy for you, take care

Linda in BC · Post by **Linda in BC** » Thu Mar 03, 2011 5:27 pm

Thanks for your thoughts, Gabes. I have been meaning to ask you how is the new job going? I hope it has turned out to really be less stressful than your old. I am solidly overwhelmed with work, especialy the last two weeks. I know I always say that, and that really is always how I feel, but it seems just when I think it can't get any busier, or just when I think , good that's over with, now I can get a breather and get caught up, it just gets even busier!! Plus, my sister has a terminal illness and her condition is deteriorating rapidly. So my stress level is very high right now, and I am sure that is not helping my MC. In retropect, it was probably not a good time to try to stop the Entocort.

I imagine you have done a thorough internet search to see if anyone is doing MRT/LEAP in Australia. How frustrating it must be for you that there isn't anyone. You would be a very good candidate, I would think, to be helped by it. Well, I guess you can just keep looking and eventually, surely, someone will get the training and take it back down under... :-)

Take care, and enjoy your camping trip and visit with Joe.
Hugs,
Linda

Polly · Post by **Polly** » Thu Mar 03, 2011 5:31 pm

Gabes,

HAHAHAHAHA. You are so funny!!! I guess Joe would have to wear your vial of blood around his neck (like Angelina did) on the flight home.

Maybe there will be a way for you to get the MRT. I know you would definitely benefit from it. It has been so helpful to me, even after 10 years of tweaking diet. Of course I knew my major intolerances, like gluten, dairy, soy, yeast, and chocolate, but I never in a million years would have suspected how strongly I react to sesame, yellow squash, and celery, for example.

Love,

Polly

P.S. Love that you can speak Yoda!

Gabes-Apg · Post by **Gabes-Apg** » Thu Mar 03, 2011 5:38 pm

named must your fear be, before banish it you can.......

Fear is the path to the darkside
fear leads to anger
anger leads to hate
hate leads to suffering.

Linda
Camping in april we will not be, day trips will be the plan. MC'ers near reliable toilets they need to be.....

(harma - this more yoda speak!)

Joefnh · Post by **Joefnh** » Thu Mar 03, 2011 5:52 pm

Harma, Yoda this is...

Gabes lightsaber you want, for Aussie help you gave?

Gabes-Apg wrote: Linda
Camping in april we will not be, day trips will be the plan. MC'ers near reliable toilets they need to be.....

Too funny Gabes...

Every time I hear the word Fossicking (one of the day trips) I have to stop myself from laughing...

-Joe

TooManyHats · Post by **TooManyHats** » Thu Mar 03, 2011 6:04 pm

A good time you will have! But near toilets you must be. Wishing you well am I.