Well I have been on LDN about 5 1/2 weeks now and I' not feeling very well. I kind of feel yucky. Is that normal at the beginning - my body getting use to things?

It took my bod awhile to get used to it. The first week was the worst. I'm still achy, though.

I had even considered quitting, but remembered I promised myself to give it a good trial period. It's been 4 months since I started.

I do have better stamina, so that's the tradeoff for the achiness, I guess.

What kind of "yucky" are you experiencing, jnet?

Well, It feels like an increase in symptoms. I'll probably start my monthly cycle next week lol - I always get an increase in symptoms. I should keep track of when I start but I don't, I just know it probably next week. My tile floor usually feels cold, now it doesn't - it feels dull. My bablance is bad but now it's really bad. I'm not sleeping very well. But I will do like you did and give it some time. I just get nervous.

Gazorpa is gonezorpa

http://crystalangel6267.webs.com/gazorpaldninfo.htm has all the files



You can Now get there via http://www.larrygc.com/gazorpa or http://www.larrygc.com/gazorpa.com

any of the above links will take you to the same page

:grouphug:

http://dailystrength.org/groups/ldn/news/view/1083940 has some info for new LDNers

you may find all your old symptoms come back for a few days in Reverse order as the body checks out old wounds to see if/what it can do

don't panic

people try to "take over" and that just complicates matters

But how long is a sufficient trial before you feel like you gave it a good shot really? (I know any answer can just be opinion since there hasn't been any in depth trials.) I tried it for 3 months in 2005 and never noticed any improvements/symptom control, but was thinking of giving it another try and have a new script for it from my neuro for 3 mg. I tried for a 1.5 mg script ,but this was my response from my neuro.

"Whether LDN works and what dose of LDN is optimal is unclear. The theory is low-dose and it is unclear whether 3 or 4.r or for that matter 1.5 is best is not known. I suggest using the 3 mg and if you have no trouble with that consider increasing. but again there is not published data that LDN works."

And my response to my neuro, which I'm still awaiting a response to:

"I think there's no published data on LDN because the money is not there to go forth with the trials. There's no money to be made off LDN even if they find out it's a good and reliable treatment for MS,Chrohn's ,etc. I find that so incredibly sad as a former nurse. I'll try the 3mg ,but if 4.5 mg would work best for me I'd need to get an entirely new prescription for it. I was trying to avoid that by getting one prescription for 1.5 mg. "


Thanks! :hug:

As I understand it symptom improvement is a "perk" that some, but not all, experience. The main objective with LDN, I believe, is to slow progression and that can only be verified through MRI's at varying intervals throughout the years. Sx improvement is always good.....at least you feel like you're doing the right thing in taking LDN but not everyone gets that benefit. Someone correct me if I'm wrong....but that's my understanding of it. :)

so if LDN can kick up some old Sx... would that be why i am having an increase in old ON Sx? i talked to my neuro about it and she tossed some solu-medrol to me just to be on safe side.

so far i still have nothing bad to say about LDN.. my only small gripe is it causes me to get less sleep at night but that is not affecting my day to day living... so i can deal with that..

What Larry and HereKitty say is true for some LDNers. Not all get a lot of symptom relief...I only had a little, because I was SPMS, when I started.

The one thing I had, from the very beginning was a feeling of well being. I thought it was just the placibo effect but, it never went away. I must have needed that raise in endorphins.:)

The important thing, to me, is that, except for an occasional stress or heat related flare, I have had no lasting exacerbations and very little progression of disability..(my growing older is what adds more to my disability than the MS.

I would say a good try time for LDN is probably 6 months to a year. I can't tell you how many times I threatened to quit LDN, in that first year but, everyone encouraged me to stay the course....and I am so glad I did. It didn't stop my MS and only gave me some symptom relief but taking it made me feel better.:)

I did have better stamina, balance, clarity of mind, when clsing my eyes in the shower, I didn't get dizzy and fall anymore and I had better bladder and bowel control.

I'll tell you what I was told.......Stay on, at least 3mg, stay the course and things will slowly get better. Maybe I talked myself into it, but that seems to have been the case for me.

I suppose there are those of you who may be allergic to Naltrexone or the filler or both and some of you may be more susceptable to the SX such as stiffness and insomnia. If you are allergic, then stop, but if you can make it through the first week or two of SX, then stay on the 3mg and later, try the 4.5mg.

Some of you sound just like I did, at first. I expected too much and saw the wonders it was doing for some others, like Larry ( we started LDN at about the same time and while I was struggling, he was seeing great sx relief and success). I believe the difference is, that he was RRMS and I was SPMS, and a few thousand years older.:D

LDN still works for me, in the way it should, so I'm on it for life.

Good Luck and Love to You All.:grouphug:

Yes, LDN is known to TEMPORARILY stir up old symptoms in some people. I think this is particularly true for spasticity. Here is more information on that:

http://ldn.proboards3.com/index.cgi?...lay&thread=148

I would suggest that you call Skip if you have any major concerns, because he is most experienced is what would be deemed "normal" transition. He would also be most educated on the best course of action, based on your disease history and dosage increases, etc.

LDN doesn't work for symptoms for everyone, but for those who persevere, it USUALLY does help out in this way too. Like Kelly said, the goal is to reduce relapses and progression . . . and symptom improvement is a BONUS.

Cherie

LDN for Dad's Lymphoma
 

I've been on LDN for MS since Aug. 4th. My GP prescribed it, not the neuro.

Soooooh, I took Dad, age 95, to the GP today along with a printout of info (from the LDN site) which, this time he did not read. He asked, "Isn't this the same medicine you are on for your MS?" I nodded and admitted that Dad had been taking my meds for the past week.

He asked if there had been any noticeable difference. I told him, "No. But I figure it can't hurt."

The doctor agreed and immediately got out the Rx pad and put Dad on 4.5 mg. of LDN daily.

I'm really glad the oncologist would not prescribe the LDN, because then Dad wouldn't be eligible for Hospice. :Head-Spin:

Thanks you guys for all your replies. I think I have slipped into secondary progressive ms, so I'm looking for a miracle and it's just not happening. I just get nerous when I see old symtoms creep up. I put a call down to the pharmacy in Florida - Skip's Pharmacy and he has heard this call a thousand times. But it's scary. I have decided, because of a few of you to tough it out. I go up to 4.5 mg in a couple of weeks. I have had a couple of vivid dreams lol. I've had those before. My poor husband. I wake him up and ask him - "is there a man standing over my bed?" he tells me no - I know and he knows it's one of those dreams so I roll over - close my eyes and just pray until I fall back asleep.

I am hoping that the banding feeling around my calf's feel less. My badder is a little better, but balance is still shot. I have three plaques on my cerebellum. Still hoping for that miracle. I'll wish on that Christmas star! :)

I’ll be going on vacation on Thursday. I’ll still probably be able to check in most evenings. First, we go to Florida to be with hubby’s folks for Christmas. Then we’ll be in Jamaica visiting friends who live there this time of year. After that we will be driving from Florida to San Diego, where we will catch a flight to Hawaii. We’ll be there for 3 weeks, and then back to San Diego. I am sure that by then we’ll be very ready to get on home. I’ll miss the kitties, as well as all the comforts of home. I am going to try very hard to pace myself on this vacation, but no promises. <<grin>>

Holy cow, woman!!! That's a heckuva lot of traveling!

I hope you have a great time! You'll post pics, right? :D

Absolutely!

I live about 2 hours north of San Diego. We have a time share on Kauai. Last year was our first year in it. We took our kids there and our daughter got married there August 1st. It was wonderful.

I hope you have a wonderful vacation and a fabulous time!

I ditto this and don't forget your LDN!:D

Oh and have a marvelous time.:hug:

For the first time in 6 yrs, I feel my LDN may be failing me....I do hope it is only temporary.:eek:

:hug: Sally :hug: I hope you get to feeling better. I've been having a lot of pain in my right leg recently. Not sure if it's due to the cold/flu I've had or the cold weather or what. Hopefully it's just a bump in the road for you and you'll be feeling better real soon. Here's another :hug:

Wow.....I'm exhausted just reading all the traveling you'll be doing! I hope you have a great time and be sure to take lots of pictures. You'll be glad to see home by the time you get back! :)

WOW, Marion. I hope you have fun, and you SURVIVE!! :eek: I did a trip like that a few years ago, and I did well while I was away but it took 6 weeks to find my footing when I got back home.

Sally, I'm still trying to figure out what you mean by having an exacerbation when you have been SPMS for so long. :confused: Are you saying you are having an increase in symptoms? Are any new symptoms? Any chance you have a sickness or infection?

LDN doesn't take away all the symptoms (or ANY for some people), and many of us still have pseudo exacerbations, a few relapses and some disease progression. That is true when we are on ANY med available to us, and LDN has never claimed to be a "cure".

I still think it is the best option out there at the moment, and for me it helps a lot. The MonSter is always lurking, but he is a much more tame monster then he was pre-LDN.

Cherie

Hi Cherie, A Pseudo Exacerbation is probably a better way to discribe it. No new symptoms.

I feel stronger today (thank you Lord) and my lower back pin is letting up, some. I just had a horrible cry jaggy, day, yesterday.:rolleyes:

:hug: Sally :hug:.

My back has been giving me problems for the last couple of winters, and every year I end up back on a exercise program (which I should STAY on all year :rolleyes:). I started back on it three nights ago, any my back is already feeling slightly better. :)

I just don't get enough exercise and I sit far too much, particularly in the cold weather. :cool:

Here's the very EASY exercises my doc has me doing:

http://i12.photobucket.com/albums/a2.../Exercises.jpg

Cherie

Thanks, Cherie, I do those stretches every day.....well, almost every day..;)

Thanks for the reminder. I am thin so people don't think you need to excercise. But my core is very weak. I sit too much also.

Hello everyone! Just wanted to drop in for a moment. We are unpacking LOTS of boxes and getting things situated in the new house.

The LDN has made it possible for me to be like the energizer bunny, I am so grateful. I bumped it to 3.0 mg a week early after calling the pharmacy. The stress is monumental right now, but I'm hangin' in there. Hope to have internet at the house soon.

Hugs!

That is GREAT news, of course . . . but EXPECT to crash after this!! That's the problem with LDN; we can do so much more, then don't understand when we feel bad after. :cool:

Cherie

Well I officially started my Christmas shopping yesterday. Picture this, I have a nice 2007 Camry, keyless - I thought you couldn't lock your keys in your car. Well stupid me did it yesterday. Macy's split in 2 at our mall last year. I forgot. went to one, bought a few things. Then, threw my walker ( embarrassed I use it anyway, but I do, threw everything in my trunk, including my purse because I was just going to drive over to the othef Macy's. Well, my transponder to open my door was in there. My poor husband has to drive a 1/2 hr from work to open my door and trunk so I could get back in my car. Then I went to the other Macy's and was there for 3 hrs. Today is a vege day to recoup my legs. i over do it.

quick update..

i think my body is starting to adjust to the 3.0mg dose as i have been starting to fall asleep at my normal time again. i started out at 3.0mg... so if this keeps going like this i think ill try to bump it up to 4.0mg or 4.5mg starting in Jan.. at least i know what to expect now..

oh and my dreams have been quite wild and vivid.. but i kind of enjoy them.

ME TOO!! :)

Just don't try ignoring something that is going on in your life, that you should be dealing with . . . it'll haunt you in your sleep. :D

Cherie

OK I take it all back....LDN is working just fine, again..:D

That's one thing I notice, that my illnesses never last long when I'm on LDN..:)

You know, I had that cold/flu that is now gone and I didn't have a flare up of sx with it like I normally would if I were sick. I kept expecting it but it never happened. Must be the LDN! :D

I can't wait to see if Dad has another good day on LDN. He started just over a week ago and his dose is 3.0 now. The Dr. Rxd 4.5 mg. dose, but it hasn't arrived just yet.

Dad's cancer (lymphoma) was beginning to give him pains at night and he'd have to get up a time or two and take some Tylenol PM. Last evening he was grouchy and didn't feel good at all. Hadn't been out to get his mail for the past 3 days (which is always a highlight). His dishes were piling up.

BUT this morning he was doing really good. Had a good night w/o having to take Tylenol. Not only did he go out and get the mail, but then he put out some seeds for the wild birds! He even ate a 2nd helping of pancakes for lunch (his appetite has been practically non-existent).

Keeping my fingers crossed for some more good days. The LDN may or may not do anything for the cancer. My hope is that Dad will at least be able to keep his energy UP and his pain DOWN.


EDIT AND UPDATE: The next day wasn't so good. Dad's Rt. leg gave out in the shower. I don't think it's a stroke or his rt arm would be affected, too. :( I wish we had known about his cancer months ago, then maybe the LDN would have had time to make a difference.

Oh Rochelle, that is such good news about your Father..HooooooRahhhh.:) I hope it puts him in remission.:)

I wish I had been able to get my best friend on LDN before she succumbed to lung cancer. She had a phone consult set up with Dr B on Monday, but passed on Sunday. I had been trying to convince her to at least TRY LDN for the prior year, but she was in denial . . . :(

I'm glad you recovered so quickly, Sally. :hug: LDN hasn't kept me perfectly stable either, but it has made a HUGE difference!! :)

Cherie

Hi it's been a while
 

Hi Sally, Cherie and All, *waving*

I recognize many names here.

My latest news.

I recently went to my Neuro for my check-up and SHE discussed LDN with me.:eek: She said she had some patients on it and wanted to know if I was interested. I have been on the other DMD's drugs in the past, and have not responded to them.:(

I said well okay, but she said she doesn't prescribe it. Huh! She said she can only write scripts for the DMD's. :confused:

She called me the next day and she said if I would like to try LDN, to go to my PCP and pick up the script. She had spoken with him. Huh again!

Needless to say, I got the script and sent it off to Florida. They called, and I am waiting for the meds to be delivered. I had PM'd Larry and he told me what dosage I should make sure the PCP writes. It was correctly written.

Now it is just a wait to get the med. I hope I respond well to this one. :)
Take care,
Lady

I want to go to YOUR Neurologist!! I wish they could all be so understanding. :rolleyes:

i kept getting my self ready for a big front of resistance from my neuro too. it never came. i was all ready to present my case,ready to argue my point for the whole appointment if need be. and he just said 'ok'.
man, did i feel let down.

but still. even with the LDN i still have good days and bad days. but when i sat down with a friend of mine who uses the copaxone, we compared our goods and bads and i have way more good days than she does, far fewer bad days than she does my good days are better than hers and my bad days arent as bad as hers.
she got an appointment with my neuro next week to see about getting a script for LDN too.



(BTW, my computers fixed)

Hiya Lady!! :Wave-Hello::welcome_sign: Glad to see you've found our forum and LDN thread. This is a very active and supportive place anyway, so you'll probably really enjoy the interaction here. :)

Well, that is one astute Neuro you have, and a keeper! ;) I understand that they want to try people on the mainstream meds first, but if there is no success with those methods, why not offer LDN? It's really a no-lose situation, and for many of us there is considerable benefit seen.

So, are you starting low at 1.5mg, or going straight on 4.5mg? Some people finding it easier to start at a lower dosage and work their way up, but many have gone straight onto 4.5mg with no problems either. Personally I had to work my way up (and down and up) to 4.5mg from 3.0mg, but I am very sensitive to ANY med ...

Glad to hear you are going through Skip's too. :)

I bet you are excited though, to at least have "hope" again. I sure hope you have as good of luck as I've had. :hug:

Glad you found us, and GOOD LUCK!!! Hopefully this works out to be be the best Xmas present you'll get! ;)

Cherie

I remember saying that my bad days, post-LDN, were still better than ANY good day prior to LDN. Nope, never "GREAT" like pre-MS, but it made life bearable again. :)

Cherie