LDN Day 5 & 6

[Linda in BC]

I posted yesterday morning but when I sent it I saw a message that the system was down for routine maintenance. Now I see the posting did not go through, so I 'll try this again.
The good news is my blood pressure continues to be low with out meds, and I am not experiencing any hypothyroid symptoms despite not taking any meds.
The bad news is that I am a not a very good guinea pig
Not doing so well this past couple of days and I suspect it may be diet tho am not sure exactly why. I have narrowed it down to a few possibilities.
1) I quite taking the L-glutamine the day I started LDN and it may be that it had started to heal my gut and that is why I did so well at first. I tried to do some research on taking the two together, and there was not much info on this but I did find a couple of people who were and were not having any problems. So I am going to assume it can be done safely ( L-glutamine apparently does not pass the blood/brain barrier.) I think I will start the L-glut again in a bit. but first I am going to correct the diet thing.
2) I had also been almost GF for a week or so before starting LDN. Not so much over the past week, mostly because of having company, being lazy and wanting to see if gluten really was a problem. I am not convinced it is but am becoming more and more so. I also accidently caseined myself
while eating out.
3) We have had our first corn on the cob this weekend ( my sweetie loves corn on the cob!!) this could also be the source of the problem.
4) It could be that my body has adjusted to the level of med I was taking and I will need to slowly increase the dose up to the 4.5 recommended for this treatment ( I am at 1.5) if I want to continue to see the benefits I saw when I first started it. I am just hoping that my Dr will renew the prescription and wondering how long I will be out of it before more comes as it took three to come the first time. I don't have an appointment to see the doc for another two weeks!! Hoping he will renew by phone.

I am still hopeful that LDN will work for me once I get these things sorted out, mainly because I had such good days the first two days.
TTYL
Linda

[Stanz]

Well, I'm just completely confused and I guess I cannot relate because I had already been GF for 4 mos. when I started the L-G and I NEVER viewed starting L-G as an invitation that maybe I could eat gluten because of that. I've been strictly GF since August '09.

I'm glad to see that your BP and hypothyroid symptoms are okay w/o meds, I have no idea why, I'm not a doctor, but can only assume that either diet or mindset are the reason for that.

I don't know if you gave up on the L-G too soon, all I know is that it worked for me and I never needed the LDN, but as I've said, I was already 4 mos. GF when I started it and I have been fanatical about it.

"Almost" gluten free is pointless. You do it 100% or you have no base to compare with, and it can take weeks or months.

You're sick, Linda, you need to decide on the path you will take and I have no idea what your PCP is telling you, but you truly do need to do more research and make a commitment to your path to health. No drug or supplement is going to cure what ails you. I hate the thought that I may need L-G for the rest of my life, but the reality is that it stopped my D, along with vitamins and probiotics, and if I miss a day------I have a small reaction---------if I miss 2 days------------well, I'm back where I started, but I've still avoided steroids.

MC is incurable, but it's treatable. You're 6 years younger than I am, the very thought of this disease progressing in me is just too much. Stop it ASAP however it works best for you.

[Linda in BC]

Hello Connie:
I am sorry that my post was confusing. I have been reporting my experiences with the LDN on a regular basis and wrote this post somewhat as a continuation of what I had written before. It seems that maybe you haven't been reading those other posts and I just want to offer a little more information in response to some of your comments.

Well, I'm just completely confused and I guess I cannot relate because I had already been GF for 4 mos. when I started the L-G and I NEVER viewed starting L-G as an invitation that maybe I could eat gluten because of that. I've been strictly GF since August '09.

I have never been GF. I just came to this site 3 weeks ago, having known for 7 yrs that I am casein intolerant, but never having had even an inkling that wheat might also be a problem. I was only just beginning to suspect soy. It was only then that I learned that many people with MC are gluten intolerant. As I am sure you know, it is not easy to just instantly change your lifestyle so drastically as to eradicate wheat totally in 1 week and it is nigh on impossible to do so when you are not even yet convinced that you need to. I started the L-glutamine one week after finding this site but I am still in the stage where I am experimenting with different foods to see if I react or not, while waiting for the results of the enterlab testing. I have not committed to a GF diet. I am an extremely determined and committed person once I know I have to do something. I have just not reached that decision yet. I think it might take a bit more than a couple of weeks to reach it.

I'm glad to see that your BP and hypothyroid symptoms are okay w/o meds, I have no idea why, I'm not a doctor, but can only assume that either diet or mindset are the reason for that.

I have been reporting that since starting the LD ( and the L-glutamine also) that my blood pressure has been just naturally lower, and I have not had to take my medication.

I don't know if you gave up on the L-G too soon, all I know is that it worked for me and I never needed the LDN, but as I've said, I was already 4 mos. GF when I started it and I have been fanatical about it.

From pretty much the beginning of being on this site I had posted that my first choice in treatment was going to be the LDN , and my reasons why. I started the L-glutamine while I was waiting for the LDN prescription and the Enterolab tests to arrive ( based on your favourable comments about it ) with the intention of continuing it along with the LDN. Only when I realized that L-glutamine also worked on brain functioning did I begin to have doubts about mixing the two together. I had seen some, but not much, improvement with the L-Glutamine and was committed to taking the LDN. I had to choose and I chose to stop the L-Glutamine. I posted about this and gave this quote, which I found in an article on L-glutamine " Glutamine, Glutamate, & GABA are all neurotransmitters which means they are chemical messengers in the brain without which the brain could not function. GABA is a calming neurotransmitter, Glutamate is a stimulating neurotransmitter, while Glutamine is a modulator of the inhibitory & excitatory activity of the other two."

You're sick, Linda, you need to decide on the path you will take and I have no idea what your PCP is telling you, but you truly do need to do more research and make a commitment to your path to health. No drug or supplement is going to cure what ails you.

Connie I have decided on the path I am going to take and it is LDN. No where in my research on LDN did I see that it required people going GF or taking L-glutamine. As much as I would like to continue the L-glutamine , I am hesitant to and I could not find much information on taking both simultaneously. And actually, my research into LDN has indicated that for some, just taking the LDN has "cured what ails them". It is hailed as such a drug. That does not mean I am counting on it doing so but I don''t yet know that, ultimately, it won't either.

I told the group I would post on my experiences with starting LDN and I have been very honest in doing this.... shortcomings, mistakes, "learning opportunities", warts and all. As I said, I am experimenting and trying to work things out for myself, as has been encouraged here. Please don't judge me for this. I don't even know what a PCP is and I don't think I have one, or at least not one that cares or knows anything about this disease ( if PCP means doctor.) I am doing this all on my own just as I have for the past 11 years.

It is going to take a lot of courage on my part to post on my LDN experiences again after reading your reaction to my last post. I do believe that your comments came from concern and caring and wanting to help. But ...ouch.

Linda

[Stanz]

I'm sorry if I came across as antagonistic, Linda, it is not what I intended and I truly apologise. I know we are all trying to find our way and my way is clearly not THE way. My ND never wanted me to do both L-G and LDN at the same time and I was leaving town for a month last Dec. and LDN needed to be monitored and L-G didn't, so we opted for the L-G and it worked for me.

To quote myself:

I don't know if you gave up on the L-G too soon, all I know is that it worked for me and I never needed the LDN, but as I've said, I was already 4 mos. GF when I started it and I have been fanatical about it.

I HAVE been fanatical about gluten and maybe this is what is different for us, especially since my genetic tests confirmed I was GS. I'm truly sorry that I hurt your feelings in my post and be assured that they DID come from concern and caring and wanting to help you find answers, however badly written.

I'm probably near the top of the list in hoping that LDN works for you, as from my research it has great promise and I hope you don't stop reporting your daily experience because I was insensitive and appeared to be judgmental. I know we are all on our own on this journey and I guess I have a bit of the Evangelist in me and I will try to temper that.

PCP is Primary Care Provider - which means basically your MD who hasn't helped you in your 11 years of dealing with this. My experiences are pretty well chronicled here already, so I've been pretty frustrated.

Didn't mean to be bitchy...friends?

Connie

[Linda in BC]

Yes, Connie... friends.

Thanks for your thoughtful response and for caring enough to be "evangelical".

Linda

[Stanz]

Thank you Linda, I can sleep now, the last thing I wanted on my conscience today was to feel that I had done something to make you feel you couldn't voice your feelings here.

C