Day 18 on LDN

[Linda in BC]

Well, I figure I am due to make a report on my progress taking LDN. I have been holding off, hoping I might have something new to report but unfortunately, I don't. The first two days after I started taking it I experienced significant decrease in frequency of BMs, down to one, two or three a day, which is a huge improvement for me, but there was only a little reduction in the liquidity of my movements. This has pretty much remained constant over the last 18 days. I have had a few bad reactions to foods I have eaten... sometimes I knew what did it, other times, I didn't. Generally though I happy with this much improvement. It has made my quality of life so much better. I can usually leave the house like a regular person and not have to worry where the next bathroom will be. And I guess, even if I never reached "normans", or improved a lot more than this, it has been so long since I've been there, ( I've spent 1/5th of my life with constant D. !) that I ask myself, do I really care?!!! And my answer is, I could live with this.

However, I m still hoping for normalcy, so I think I am going to ask to increase my dosage of LDN to see if that will bring any further improvement. That is, providing my doctor will even renew my prescription when I see him next Monday, although I can't see why he wouldn't. I am at 1.5 mg now and I have enough left for 12 more days. Sure hoping the pharmacy in Toronto can rush the order so I don't runout. In my research I have noticed that for many woman the optimum dosage is 3 Mg. If they increase it above that they get no benefit and often feel worse , so they go back down to that. I am going to continue with the cautious route and ask to go up to 2.25 mg and stay on that for at least a month. Then if I need to I will go up to 3 mg.

As far as my thyroid meds go, I have been taking half my normal dose for about 5 days. I've been monitoring my temperature for three days now(thanks, Tex, for that tip), and it's usually low ( average 96. 8) so I am pretty sure I will need to continue with the thyroid medication, and may even have bump it back up to my normal dose ( which is not much, 75 mcg of Eltroxin/day). I'm not getting the heart pounding as often as I was from the LDN . It was almost always first thing in the morning, when the endorphins are supposedly the highest.

My blood pressure stays low with a quarter of my previous dosage. I have found if I stop the meds altogether, it slowly creeps up by the end of the day, but if I take a half pill in the am ( I used to take one in the morning & one in the evening ) it remains normal all day and night. When I am off work for July and August I may not even need that. I figure I will get my Enterolab results back around the middle of June or about 10 days from now. I am so curious to know about Soy and Wheat. I am now pretty sure I am intolerant of corn and, of course, for sure the Casein.

So that's about it for me.

Linda

[Ginny]

Linda, glad you are posting your progress and keep posting. I have great faith that you will see a bigger reduction in your D once you know your tests results and can monitor your foods. It just takes awhile as Tex has said many times. We all differ in our recovery. I am in my 7 month of GF/DF/SF/EF and take one Entocort a day and can count on being normal for 80% of the time, but I know that I am not near remission yet! BUT to be able to function and not worry about where the bathrooms are is a big relief! I look forward to your continued posting and progress. I think most of us here have learned what patience is all about. Ginny

[Linda in BC]

Thanks for the encouragement Ginny.
I am sure you are right, that I will see even more improvement once I know what food I am intolerant of. It is just that I am so hoping and praying that wheat is not one of them (knowing full well that the chances of that are very slim.) Still, there is no law against hoping in the face of almost certainty!

Good for you that you are doing so good on your GF/DF/SF/EF diet. I so, so respect all of you who have multiple intolerances and how you so creatively, and detirminedly avoid them. I will likely join your ranks soon and I pray I will do as well as you guys seem to do. I probably sound like a whimp, but in some ways I would rather face the D. than all the hassle about food. I am not sure why that is but I suspect that it is because I am definitely not a "foodie" type of person to begin with. I don't particularly enjoy eating or cooking ; it is something I do because I have to, but I would much rather spend my time doing things I do enjoy than preparing or eating food. When I get doing those things , I resent having to stop to eat sometimes. It is just an inconvenience. Is there anyone else out there who feels, or used to feel, this way?

Luckily for me my sweetie loves to cook and eat so he usually (used to anyway until I started not being able to eat most things he cooked.. ) keeps/kept me well fed! But my disinterest in eating and cooking is the only reason I can think of why this prospect of multiple intolerances, and in particular giving up wheat, scares me so much. Wheat foods are just so darned convenient.

I had an interesting experience yesterday that bought home how hard it will be. I went to this wonderful healthy food co-op in Nelson BC, as I was there for work, to buy lunch. They had huge variety of wholesome foods prepared... tabuli salads, corn and spelt this and that, soy things, and a few GF baked goods and a couple of GF hot dishes. I finally settled on GF quiche (made with rice flour crust) and it was delicious, but on about the third bite I realized it had cheese in it! I was so focused on finding something GF that I could eat ( without corn or soy) that I completely forgot about my primary intolerance Casein and didn't even see the cheese which must have been listed in the ingredients. I realize now, that of the 50 or so dishes they had there, I don't think there was one that did not have at least one of my probable intolerance ingredients in it.

Linda

[collagastritis84]

Thanks for keeping us updated im sure we are all following your posts even if we don't always reply. Keep it up, best of luck!

[Gabes-Apg]

It has made my quality of life so much better. I can usually leave the house like a regular person and not have to worry where the next bathroom will be. And I guess, even if I never reached "normans", or improved a lot more than this, it has been so long since I've been there, ( I've spent 1/5th of my life with constant D. !) that I ask myself, do I really care?!!! And my answer is, I could live with this.

Linda this is a very key statement, IMO what is important to accept that life now will NEVER be like it was pre MC chronic symptoms and when MC was at its worst

After a huge huge exhausting week at work, few extra BM's overnight and this morning, I managed to go out, went to 6 different locations to do my hunt and gather for the work trip to France. I only had to have one toilet stop. i came home and I was elated that i had a good morning without any MC issues, i got some great MC friendly clothes (all on sale as Mid year sales are on!) that are classy enough for Head office in France.....
I havent had the courage to face shopping since November Last year....
i am ignorning the size tag- if it looks good, does not put pressure on my tummy and it is in budget its a winner!!!


Congratualations on your slow and steady continued improvement....

[JoAnn]

Hi Linda, thanks for another update. I've got my fingers, toes, etc. crossed for you that this treatment will be a break through. I've got to run and do my Saturday chores, but I'll talk to you soon. Love JoAnn

[Linda in BC]

Thanks for the encouragement, everyone. Gabes, new clothes are so important to have once in a while (for us ladies, anyhow!) Glad you were able to find things that met the criteria. Enjoy! So excited for you about your trip... only 5 more sleeps!

Linda

[angy]

[Joefnh]

Linda that's great news that your testing is showing excellent results. Thanks for keeping us all up to date. How long will you be trying the LDN for?

Gabes I have noticed that with MC that darn size number keeps changing (not always in the best direction ), don't worry about that ,if its comfortable go with it. Besides its the size of the smile that counts.

Good luck on your trip, don't forget to have some fun in the midst of all the work.

--Joe

[Linda in BC]

How long will you be trying the LDN for?

Joe, I am not sure how Long I wil take it for, but am willing to give it months, if neccessary. As far as I can find on the internet, for diseases like MS, the positive effects only last as long as you are taking it. Stop and the disease progresses again. With something like MC, I am hoping that once the inflammation is gone, I can cut back at least, if not stop, and possibly control with diet. If it is helping me by actually causing me to not react to the things I am normally sensitive to ( Ie causing me not to produce the antigens) then I suppose I may have to take it forever. I cannot find much information about going off of it, just lots on starting it, mostly for MS and Crohns, not MC.

Linda

[judy]

Linda, are you still on LDN? Success? I read your last post when you were on it 18 days. My gastro guy willingly gave it to me and I'll be starting it soon. Any guidance, info, dosage would be appreciated. I'll be starting at 1.5mg. Have been using AMP Floracel.

Judy

[nancyl]

Linda,
I have also been wondering if you have had any more N.A.E.T. treatments? Are you still able to tolerate eggs?

Nancy

[starfire]

I'd really like to hear from you again too.

Love, Shirley

[Linda in BC]

Shirley and Nancy, so glad you posted in this thread, which sent a message automatically to my inbox , and has given me that push, and easy link, that I needed to get back on here and post. I know that I could have any time, but there was just so much inertia keeping from me doing it~! Thank you!

I have had a few more NAET treatments, for candida, calcium, dairy, and b-vitamins and (no surprise) the dairy one doesn't seem to have worked, even though I've done it twice. It is my worst intolerance and I 've had it many, many years. Apparently, I am no longer intolerant of calcium, just dairy. But it doesn't seem to be as severe as it was.. I would say it is about 1/3 less severe, if that makes sense. If I cheat a little, like say, have a bit of cream in my coffee while away from home, or eat a tiny piece of cheese, all hell does not break loose. Reaction yes, but not severe like it would have been before.

And yes, I am still able to eat eggs, hallelujah!

I missed the last appointment I made with the naturopath ( second one in three months--very embarrassing-- just too dang busy) ) so have decided not to go for more treatments until my work schedule and life busy-ness settles down. (Ha! Could be a while!)

But even without the treatments, what has made the most difference in my life is just knowing all the foods I am allergic to and so now being able to avoid them. My condition improved 50-75 % when I started avoiding those foods. For me they were: corn, sorghum, tapioca, all grains including oats, quinoa, millet, citrus, coconut, alcohol, caffeine, sugar, lettuce and of course, dairy. Rice was a little iffy too, she said so I've really laid off the rice. I take an entocort only about once every two or three weeks, and probably would not even need that if I never cheated. My advice to everyone is if you are not getting results once you have cut out the gluten, take a serious look at other foods, and get tested for other intolerances, if you can, in what ever way you can. I knew that other foods were causing my flares, but was unable to figure them out on my own, even after a year of trying.

I have missed this forum so very much. I still think of you all often. I'll have to come on soon and read some posts and get caught up, as I did before Christmas. I hope everyone is well. We are almost finished the renovations on the upstairs our old farm house, are putting our other acreage on the market next month, so after that I hope to have a little more sanity in my life.
Take care,
Linda