Hi Cherie.. My friend talked to Skip, at my request, and Skip said it was OK, since it was just a temporary thing to build up her blood..

She has a lot of ON and Dr S thought that an increase, temporarily, might help???

It still makes no sense to me, but to each his own.....She'll let me know if it helps....

Now that I've been on LDN for just over a month, I thought I'd tell my story.

Iwas diagnosed a little over 3 years ago with RRMS when I went numb from the waist down. First flare was over 9 years ago with nothing much in between, so I've had MS for at least nine or ten years. My mother and a first cousin also have MS.

I've had a pretty mild course - heat intolerance, occasional fatigue issues and some sensory stuff. I can't ever imagine doing injections (wuss), most of the people I know with MS are doing OK without DMD's, and I just plain hate taking any kind of medicine.

I've been following this thread since its beginning, checked out the LDN website and, with some help from Cherie, got together a package about LDN for my GP. He agreed to prescribe it and I started at 3 mg. where I've stayed so far. Summer is my worst time of year so I thought now probably wouldn't be a good time to titrate up.

I wasn't expecting any results; more a hedge against progression. I didn't notice any difference at all and everything was going smoothly (did I mention that I hate taking any medicine?). One evening, two weeks ago, we had company over and several people were complaining about how hot it was. That's when it dawned on me - I was hot just like everyone else, but I was still functioning!

Heat intolerance has been my worst problem - probably my first MS issue way before my first actual flare. I am no longer the first person to complain about the heat! I still feel hot, I sweat, I retain water, my fingers get like sausages..... but I can think and function. Yay LDN.

Thank you to everyone who has shared their experiences with LDN - I wouldn't have done it without you!

C

That's great, Carol! Thanks for sharing your experience with us. I love LDN. Won't be without it! I did the shots before I took LDN and kept progressing. Never going back to that! LDN has worked well for me - and I was skeptical at first. Now, I'm so glad I tried it. It's so simple....just a pill before bedtime. Seems like the docs and everyone thinks treatment needs to be so complicated and have such terrible side effects. With LDN, I get none of that. I'm happy you had a good experience with it, too!

Ahhhh, (((((((Carol)))))))) another believer..

Hi Carol,
Nice to meet you. I am glad that the LDN is helping you. It has helped me so much I wouldn't think to stopping it. It still amazes me every single day. Things that are even non-MS are getting better. Can't beat that.

Hi everyone (waving)

Oh my goodness, Carol .... I can remember talking to you way back in the summer or fall of 2008, and here you are just getting started on LDN? Did you have a hard time getting it, or did it just take the 6 months of patience (tenacity) that some doctors seem to require from us.

I'm glad you are getting benefit from the heat as it sure would be coming in handy this year. I just heard on the news that June was the driest (or hottest?) on record for the mainland, so I imagine the island might be the same. (?)

Thank you for coming back and updating us ... I always appreciate updates from people (good or otherwise). Make sure and let us know how it goes over time for you too!

(My level of fatigue didn't improve until I went off antidepressants about a year after I started on LDN. Not sure why it worked out that way for me, but I'll take it. )

Cherie

Hi Cherie,

It was just me procrastinating. When I mentioned LDN to my GP last summer, he told me to give him some info. I sent that with DH on his next visit to the GP but I didn't go back myself until March. GP said if I wanted LDN, he'd RX it. I was going to start at 2 mg in pill form, but I just have a terrible time swallowing pills (psychological, not physical!). Gave it up after 4 nights. Then I just got busy and put it on the back burner.

In June, I got the pharmacy to make up the liquid version at 3 mg. Figured no guts, no glory. That was much better and here I am, nearly 5 wks later and not dreading the rest of the summer.

I guess I should head up to 4 mg or so at some point, but I'm also thinking, if it ain't broke, why fix it??

June was pretty hot and dry on the Island as well. We have a beautiful breezy day today. Going canoeing after dinner.

Thanks again for your help,

C

Hello, I live in Vancouver where my mum was diagnosed with PPMS just a couple of years ago. She is in her late 70s. She was on chemo through UBC, but went off it because the side effects were quite hard on her, and she didn't see any benefit from the therapy.

Now she seems to be getting steadily worse...so we were thinking about approaching her doctor about LDN.

Does anyone know of it being prescribed by any Vancouver-based doctors?

Thanks in advance for any comments -- I just joined the list, and looking forward to hearing from anyone.

TL

Hi TL,

I know that Cherie (lady_express44) gets her Rx for LDN from a Dr. in Vancouver and I believe she told me that there is a Dr. at the UBC MS clinic who will prescribe it. I just printed a bunch of stuff from a couple of websites and some points Cherie gave me and my GP prescribed it without problem.

I'm sure Cherie will come on with more info when she has time.

C

Thanks -- looking forward to hearing what Cherie says about which GPs are okay with prescribing it.


I took my mum to her MS specialist at UBC yesterday. We asked if he could prescribe the LDN for her, but no luck. He said that he was fine about it if we were to ask a regular GP to prescribe it.

Also, hearing about the liquid LDN sounds kind of interesting. My mum doesn't have problems taking pills, but maybe it will be absorbed better, or maybe it'd be better for her to ingest medication that's not in pill form -- might let her feel less overwhelmed by all the pills she has to take!

What should we ask for when we go to the GP: 2mg?

Enjoying the posts.

Thanks again.