Hi Folks...Just catching up on my reading of your posts, since my DSL outage. I went through an anxiety attack and my MS numbness ramped up, yesterday. At Bedtime, I took my LDN and this morning, all was back to normal..:)

So thats my "thank you" LDN story...Wheeee!!!!





That's my LDN Doc (Dr. S) ...What a nice Guy..:cool:

Mine, too! I just luv him! :circlelove: Wish all docs could be so kind.

Glad to hear you are trying a higher dosage, Frank, and hopefully it works for you this time.

Remember, you can always mix it with distilled water (1mg drug to 1mg water), keep refrigerated, and only take +1mg or +.5mg if you find an increase of 1.5 mg too much to start. You could dump 5 - 10 pill contents to equal distilled water and just top up with a smaller dosage ... am I making sense?

Why did you drop from 3.0mg anyway, I can't remember? You wouldn't have been on that too long though, were you?

Hope this does the trick for you. :hug:

Yep, Marion, only one missed dosage and my symptoms come flooding back too. :eek: I was relieved when the anesth... said I didn't have to miss Sunday's dose. :cool:

Seriously, try benefibre Jnet. Works like a charm for me and I have gone WEEKS without going prior to finding that remedy.

Being stopped up like that does affect my symptoms, FOR SURE!! I have no idea why that would be :confused:, but as soon as things get going again, I am back to status quo. Good luck with that!

WELCOME BACK, SALLY . . . I MISSED YOU. :hug:

Has anyone tried one of the colon cleanses that are advertised nowadays? It cleans your insides (for lack of a better description) and supposedly gets your body back in balance.

I have used Dual-Action Cleanse in the past (pre MS) and ordered it again to take. I've been taking it since Wednesday and the difference in how I feel is incredible.

You do the cycle for 30 days on and 30 days off. It just consists of taking two pills in the AM and two in the PM. I don't get the bad side effects some of the cleanses cause you to have. But I do feel sooooo much better just since starting this.

I do believe a healthy digestive system plays a big part in your overall health and well being. This along with the LDN have made a huge difference for me. Medications can slow your digestive and elimination processes....and I have found that since I've stopped most of my meds (Neurontin, Baclofen, my AD, and sleep aids) my system is returning to normal. Of course, always consult with your doctor before beginning one of these cleanses.

I dropped down cause it was knocking me out I was lethargic at best, got to admit today i got that duh feeling, I dont like it, but I had a rough night so shall give it 5 days or so to see any diff in leg pain and the lethargic feeling

Herekitty, How did you know when you could start dropping your meds? How long have you been on LDN? I think I may have secondary progressive now.. I takr a lot of stuff and would love to drop some.

About the colon cleanse. I would be home bound for a while. I guess after Thanksgiving I could do it and make that commitment. I hate this and have never done this before, but I might have to wear a depends at night if I did this. Sometimes when I go, I have to go right then. I hate ms.

As far as benefiber goes, I do use it sometimes but I have to use more than the normal person. I have the chewable pills. That's why my gastro has me on konosyl.

Frank, I just doubt that LDN is having that lathargic effect on you..:confused: Could it be one of your other Meds and maybe LDN is not mixing well with it?

LDN usually has the opposit effect, as it causes you to be up, because of the raise in endorphins...it may even cause insomnia at first.

I sure hope you can get this worked out. I want you to benefit from the 3mg LDN, as I don't think the lower doseage does much.

Good Luck.:hug:

http://www.youtube.com/watch?v=8sHEW...x=0&playnext=1

I created a Playlist on Youtube from the LDN 2008 Conference

Wow, Larry thanks a heap. I didn't know this was out there....It's great. Susie Sedlock and I have been e-mailing for years and I knew a little of her Father when He started LDN and when Susie then started it.

I watched every film with great interest. I'm sure all here will enjoy seeing some or all of this presentation.

How are you doing and Your Dad? I hope Well.:)

Thanks again..:hug:

Hi Larry

I don't know if you remember me from msrefugees but I am finially on ldn. My husband and I went to the USC conference. I just started 3.5 mg ldn Dr skip is gradually bringing me up. We had company for 10 days so my eating was bad, but I'm getting back on track now, so hopefully in a couple weeks I'll start feeling good. Right now I don't notice much.

Keep a journal and hopefully you'll see some progress :) I see MSRefugees has new staff, just stopped by there today. Made the rounds :)



TropicalDawg has a lot more vids there, I only did a playlist for the 2008 conference so far.

Dad and I are doing well, thanks :) 20 months now for him. Over 2000 days for us :)

:grouphug:

Thanks for those videos Larry. I watched them all, too, and it's just amazing what some people have been through prior to giving LDN a try.

I simply do not understand why more folks don't give this drug a try. It's so easy to use....and if you try it and don't think it's for you then you can stop without any withdrawl or nasty side effects. Those with sx that are not responding to steroids or other medications should at least try it....nothing to lose and lots to gain!

I was taking Neurontin, Baclofen and Zoloft. The Neurontin was causing me to gain lots of weight. The Baclofen made me woozy and even dizzier and I just felt like I didn't need the Zoloft after starting LDN. I weaned myself off each drug so as not to shock my system and had no problems. Now, the only meds I take are my BP medication, my thyroid medication and the LDN. I may not even need to take my BP med much longer because my BP has been on the low side of normal for about three months now.

If you are on lots of meds I wouldn't suggest stopping them all at once....or any of them without speaking to your doctor first. I'm not sure what you're taking but some meds require a doctor's assistance to wean off correctly.

You can read more about the Colon Cleanse by going to www.dualactioncleanse.com. It's a good product and I just do the "good" program and it's sufficient for me.

Good luck!

Kelly offered great advice!!

Glad to hear you and "dad" are doing great still, Larry. :hug:

Frank, I have to agree with Sally that lethargy as a LDN side-effect is extremely unusual . . . but of course anything is possible. Are you on A/D's? NOT that I think you should try to ditch them, if you need them, but I didn't notice much of a difference with fatigue and LDN till I went off A/D's.

Maybe your body just needs longer to adjust and it'll balance out over time. :confused: Or, are you attempting to accomplish much more when you up it.

Of course, LDN doesn't work as well for everyone . . . but I wish it would for you. :hug: Most importantly, I hope you can tolerate a therapeutic dosage (even if some of the side-effects aren't great) so that perhaps it has the opportunity to stop/slow the disease process anyway.

Cherie

Amazing Day!
 

LDN works! I don't even care if it's possibly the placebo effect. ;) I have taken 1.5 mg for three nights now and...

After two months of bed rest due to fatigue, 24 hours in pajamas, eye/balance troubles and headaches...

I was up, showered, dressed and exercised by 10:30 this morning. I ran a few errands in town, went to Costco for pies and did my grocery shopping. It's 11:00 at night and I am still smiling. :) My eye is starting to give me a headache, but I'm feeling pretty great otherwise. :yahoo:

And if that is not impressive enough for you...my husband informed me yesterday that his business may have to file bankruptcy, putting our house, cars, etc. in danger. And I'm still breathing! :eek:

Now, I know it may all catch up to me tomorrow and I promise to take it easy tomorrow...but I am relishing in the victory of today. :winner_first_h4h:

Yippee for you and LDN, Brenda!!!!

I hope your husband is able to pull his business out of the slump. :eek: That's very worrisome.

So happy for your good LDN results! You go, girl!

Hey, will you come help me fix Thanksgiving dinner -- you'd got all that energy and probably need something to do with it, right? :D:D:D

Brenda, that's wonderful news!!! I'm so glad you gave LDN a try. Isn't it great to feel so good!! :D

Brenda, isn’t it wonderful? LDN was the first improvement in MS symptoms I had ever had. Don’t expect that every day will be as wonderful of the first days. It isn’t like you don’t have MS. You are going to have to get used to pacing yourself at your new and improved level of function.

Enjoy!

Yep, Marion, you are absolutely right!! This drug is great . . . but it can't save us from ourselves. Actually, I have one friend who I've told NOT to go on it, cause I know he'd KILL himself if he realized the benefit of all the extra energy that most of us get.

Another point too though . . . which I have probably said too many times already :rolleyes: . . . is that the goal of LDN is to reduce relapses and slow progression. It takes time to see if it is going to work for this purpose, and in my experience it does for most everyone who sticks to it . . . but that is the REAL measure of it's effectiveness. Symptom improvement is just a HUGE bonus!

Glad you are feeling good, Brenda!!

Cherie

Soooooooo true, Cherie. :)

We had Thanksgiving dinner for eight at our house as usual. In previous years, I wasn’t much help with entertaining, and Gerry did a wonderful job of picking up the slack as my condition deteriorated. This year, however, I did much of the work, and my hubby is amazed by my stamina. My guests were also really blown away by my diminished MS symptoms. It felt wonderful to be a hostess again.

Thank you, LDN!

Okay everybody. I know what LDN is, but what little I've heard is not good. When did you decide to go on it, did you ask your doctor or did he suggest it, what symptoms does it help??????

Doxie

What negative things have you heard about LDN? I'd be interested to know your source because I've been hard pressed to find anything negative about it anywhere....hard as I've looked!! Of course, if it was coming from your Neuro that doesn't surprise me........they don't like anything that challenges their "supreme knowledge of everything neurological"....:rolleyes:

I decided to start taking it after reading all the posts in this thread.....and no, my doctor wouldn't even listen to me about it, so I found a way to get it without his blessing. It's not a money making med for the pharmaceuticals so most Neuros won't even research it...even if their patients ask for it. :mad:

It's been a huge help to me...helps me with most all of my MS sx, especially the fatigue. I take a Provigil maybe once a week now...and only take 1/2 of a capsule whereas I was taking one or two whole capsules a day before! It's helped with my cognitive abilities, my balance, my tremors. It's just helped me so much all around.....I cannot imagine not being able to take it.

I can't imagine how you could have heard only "not good" things about Naltrexone, so I'm wondering if perhaps you have LD Naltrexone confused with Novantrone. :confused: Novantrone is a somewhat risky chemo drug that is approved for advanced or particularly aggressive MS, whereas LDN is very low dosage of opioid antagonist, used off-label for all categories of MS.

I decided to go on LDN about 4 yrs ago, and it took me 6 months to convince my doctor. I heard about it through a friend, who's 13 yr old son had very aggressive MS. She had tried him on all the CRABs before she finally resorted to LDN ... which she had heard about on the internet. He quickly stabilized, and was able to get back to school. He had been on about 2 yrs at that point.

I didn't go on LDN for symptom improvement, and really never expected any either. I had been on a downhill slide for several years, especially the last two though, so I just wanted to try something to hopefully reduce relapses and slow the disease process. Within a week though, the relentless spasticity pain I'd been living with for that two years was gone, as was my claw hand (which had been getting worse for 5 yrs), improved bladder/bowel control, cogfog, walking/balance, etc.

Historically, most doctors and neuro's wouldn't "suggest" LDN to their patients because it is not a mainstream disease modifying treatment (DMT). Back when I was first looking for it, not many doctors had experience with it for MS, so they were reluctant to rx. Now-a-days though, almost every doctor has heard of the use of it for MS, many will rx, and some even recommend it (with or without clinical trials proving it's effectiveness).

Cherie

I forgot to tell my little story about my foggy-headed discussion with the anethesiologist the other day, just prior to my surgery . . .

I was laying on the table, just prior to being put out (but they had clearly already given me 'something' that made me a little spacey :rolleyes:), when the anesthesiologist asked me, "How long have you had MS?", to which I responded "18+ years".

(BTW, does anyone else find that hospitals, nurses and doctors make a BIG fuss about people with MS?? :confused:)

He commented that I seem to be doing well ... compared to many people he had seen previously ...". I know, I 'look so good'. ;) :rolleyes:

Then he says, "so why do you use Naproxen so often?".

I told him that I "use it for pain".

He responded "I've never heard of anyone being rx'd it that regularly for pain before. :confused:".

I said "It doesn't work for the neurological pain, but it does take the edge off for other pains I get (due to compensating from the neurological pain)".

He said, "hmmmm ... that's a first ... daily Naltrexone for pain". :confused:

It was at that point that the lightbulb went on that he was saying Naltrexone, not Naproxen. :o I quickly corrected myself and told him I use Naltrexone "off-label for MS". I told him that it was not an approved med for that purpose, but that it had been keeping me stable for 3 1/2 yrs now.

His immediate comment was, "Unfortunately there isn't any financial incentive in undertaking large clinical trials to prove some of the existing generic drugs work on diseases . . . ". :cool:

I've always thought that myself . . . but was a bit shocked to hear that coming from a doctor who never even has more then a 10 minute "relationship" with ANY of his patients!

Cherie

Hi Doxie. I hate to say it, but if you go back and read this Thread, you will find all your answers.:)

Also do look at some of the Videos in the link that Larry has provided, at post #649.

Good luck to you..:hug:

Wow...I am shocked too. That makes two doctors admitting that this week. The Chief of Neurology in SLC told me the same thing last week. He actually said that it would take 1/2 billion dollars to do human trials on LDN. And since there is no money to be made, it will never get done.

This last week has been nothing short of incredible. I am loving the relief from LDN. I hosted Thanksgiving dinner for 13 people and am living to tell the tale!

I'm a little bit tired today, but have thoroughly enjoyed being able to keep up with the festivities!

I am so thankful for LDN.

Brenda, I know what you mean. We had 8 for Thanksgiving dinner, and I was able to fully participate in the house cleaning before, the meal preparation, and the clean up afterwards for the first time in at least ten years. I am certainly going to kick back for a couple of days now, though, because I really did push a little bit too hard. I am simply amazed at how much more useful I am able to be.

I'm so happy for ya'll!! LDN is so simple to use.....and so affordable....no wonder the Neuro's don't want to promote it! It might just put them out of business! :p Not really, but I haven't had to put a call into my Neuro in a loooong time!

WoooooHooooo!! I am so happy for you all, too..:D

Now, rest on your laurells for a spell, you deserve it.

I just finish a thanksgiving feast brought to me today, by my Cousin and the best cook in all the world, I'm not kidding..:p She is the head nutritionist and Chief at a very Posh retirement community and I'm just lucky enough to have her in the Family..:)

I'm very tired now from eating all that, so, time to rest..:p:D

Enjoy your turkey coma, Sally. It is rest well earned.

Did LDN help you all to survive TG and.....Are you ready for Christmas? :D

I still love my LDN..:Bow:

Oh, did it ever!! I was tired after all the festivities (cooking and eating) but nothing like I was the year prior. I actually enjoyed doing all the prep work and cooking. I paced myself, didn't try to do it all at one time, and was very proud of myself with what I accomplished. :)

I cannot imagine life without LDN. It's just not an option for me to be without it.

Sally, I sure did. I participated (and not in a trivial way) in the cleaning before, the meal preparation, the eating (of course), and the clean up after. Last year I did have hope, but mostly I sat in my wheelchair, and tried to make the best of my loss of function. This year … well, let’s just say that the stuffing was the best I ever made and I was able to be a fairly attentive hostess. I have been given back a big portion of my life that I had lost. How can this not be amazing?

Sheesh, with all the acronymns flying around, I thought TG was something neurological!!! hehehe!

Yes, TG was great! The Saturday afterward we hosted a Family Reunion for my husband's family. We had a cousin and her DH show up that we hadn't seen for 30 years! She has agoraphobia, but has been getting out a little lately. She did have to go lie down, as her drugs sap her energy at a certain time during the afternoons, but so nice to see her out and about.

I baked my MIL's rolls! She has been gone for about 12 years, but I made her Parkerhouse rolls. It just so happened that they won the bakeoff! I'm not much of a roll maker, but I guess it just made everyone nostalgic for their mother's excellent hot-from-the-oven light and fluffy ones. *sigh She made it look so easy.

I was just about to say that I doubt I could have done that a year ago, but I actually did make rolls, and some pies from scratch. But I still maintain that LDN gives me stamina and clarity of thought.

Want to know a little secret? I gave my Dad 3 weeks' worth of LDN (1.5 mg.) to see if they do anything for his lymphoma. He got the night sweats last night and slept poorly. I hope he hangs in there, though. We have an appt. to see the doc on Monday. This is the same GP that Rxd my LDN.

YES! I made it through and then some. :D It was so nice to enjoy company and the kids.

We are moving...here comes the big test. ;)

This is what I've heard through the NMSS-We have received a number of inquiries about the use of low dose naltrexone (LDN) as a treatment for multiple sclerosis. There are currently no published data from controlled clinical trials to support the use of naltrexone in MS. Further study is needed to determine if this is a safe and effective treatment for people with MS. This was in 6/08. All the other "negative" stuff have been in other MS magazines or MS books that I have. I also have heard the positive things. I'm going to talk to my neuro about in January. If she won't prescribe-any suggestions.

OH that "negative" stuff...

yeah, LDN has a big negative effect on their wallets

we've been running a live study of LDN in Humans with all sorts of diseases. MS is no longer the biggy! there's less and less of us each day... but our numbers haven't gone SMALLER, all the other disease usage has grown larger.... Crohn's, Psoriasis, Celiacs, all sorts of cancers, sarcoidosis, ALS, altzheimer's, and growing daily, AUTISM

And the AUTISM usage PROVES it's NOT placebo. Parents apply a transdermal application cream WHILE their YOUNG CHILDREN sleep. So 1. they don't know they're on anything, 2. they wouldn't know what they were on anyway.



I'm on it since 4/17/2003 for my MS, 3.0 MG

My DAD is on it since 3/28/2007, 13 days after being Given SIX months to LIVE. They put stents in his kidneys. They did chemo for 6 months, every Tuesday, and he took LDN 4.5 MG every day. He said he felt dead on Wednesdays, but by Monday's, ok. In September they did a CT scan, rushed him into the operating room, REMOVED THE STENTS, told him his tumors shrunk in half, they never saw that before on their chemo, and stopped the chemo immediately.

3 months later they declared him in remission and stable.

3 months after that, the next 6 month mark, they did another CT scan; on LDN only, his tumors shrunk in half again.

So I no longer care what anyone says. and my brother is on it since 4/07 for sarcoidosis, he was going downhill fast. he's now stable.

:grouphug:

oh, btw, I added more to the playlist from 2008 conference... http://www.youtube.com/view_play_lis...CAC&playnext=1

Actually if you go to www.lowdosenaltrexone.org there is a lot of information on the trials. There was one trial done where the conclusion was that it was "safe". Another great site for help is www.gazorpa.com

Best of luck to you!