I have to have my hair practically scalped bald if I want my haircut to last much more than eight weeks. My hair is also getting curlier. I always did have a bit of a wave, but this is ridicules. If the weather is humid at all, I get ringlets. My nails also grow faster and stronger. It used to be that my nails would break off once they detached from the nail bed. Lately I have had to take a nail file to them to keep them trimmed.

Marion I'm glad your eye surgery is over with and healing despite the infection or allergy to whatever they put in your eye during surgery. Wow two more surgeries to fix the problem, that must have been a real bummer.:(

Also happy to hear that the LDN is finally kickin back in for you. :hug: When I read you last post about forgetting to take it, I ordered my refill early. I don't want to find out what it's like to be without the LDN.. EVER.

As for my head hair, it has always been full and fast growing. My nails long and thick (except while on Avonex, nails and hair spit). I need to file them constantly too.

I keep them long and filed square, polished with pinks or wild colors (tee hee), so people also ask me if they are acrylic nails.

Btw, I have for about the last past 10 years or so lost all body hair from the neck down. Same place I don't sweat, from the neck down.:confused: Strange.

Did everyone miss my question about the healing of sores and the disappeardence of moles and stuff??

I responded to it...............

Yes you did, Kell and thanks..:hug:

Kelly, I hope this happens for me with longer use of LDN. Thanks to my father’s side of the genetic pool, I have a life-long and ongoing battle with skin tags.

:Wave-Hello: Hi Marion. :hug:

Sally, sorry I didn't get to answer your question, :hug: but I haven't been on LDN long enough to see any disappearing moles or any miraculous healings. (sigh).

I have normal healing time, no better, no worse. But I have always had problems with over-healing (scars). My dermatologist has been taking care of my many moles by making them disappear surgically. :) Over 100 at least, on my body and back, over the years.

As for skin tags, if I can reach it, I get a surgical blade from my dermatologist and cut them off myself. It cost too much to pay a co-pay for each visit $20.00.

In sensitive areas, I tie a string tight around a skin tag, knot it, and add alcohol daily to tighten the string. Then the skin tag dies and falls off in a week. They are from our clothes rubbing areas of the skin, like the neck, under arms, etc. Not many of them though.

I hope my cooking burns and paper cuts disappear faster in the future. You are very lucky Sally. The hot oven and a sudden hand tremor/jerk don't mix.:rolleyes:

Skin tags are easy, though annoying. I serialize them and snip them. It is important to keep them clean, but otherwise they are gone.

I had heard, from others on LDN, about the Moles disappearing and thought it was just a coincidence, because it wasn't happening for me....until the last year or so.

The hair, nails and quick healing was happening, for me, from the beginning.

Isn't it amazing how much a little bit of Naltrexone can do? No wonder Docs/Scientists scoff at it.:D

Very true Sally. :) And Big Pharma hates it too. :D Well it's just too bad for them. :p

I have my list of my "All Time Favorites" at home.
1. LDN
2. Duck tape
3. Baking soda
4. WD 40

With these items in your home you can fix or make everything better, including yourself. ;)

I should get a T-shirt that says this. Hmm

Has anyone else been scripted LDN 6mgs...3mgs twice per day??? A friend from Fl Was!! This just doesn't sound right, although I do know a person who was scripted 6mgs by Dr Bahari, but only for a short time, Temporarily, and then back to 4.5mg.

I'll have to keep in touch to see how that goes for her??

6 mg a day?? :confused: I wouldn't be able to walk if I took that much! :eek:

Sally maybe her doctor gives her that script, but she takes only 3.0 mgs a day?

This way she gets 2x as many pills per order, and less refills, or less phone calls or doctor visits. Just a thought. :confused:

No, she has been told to take 3mg twice per day. It's Dr S too...my Doc..:eek:

Can anyone tell me how to find out which doctors in the Phoenix area might prescribe LDN?

gmi

Call Skips Pharmacy in Florida, they should certainly know..:)

Thanks.

gmi

I've never heard of that, Sally ... but I think that LDN is likely to go through a major upset in reputation, the way that some doc's are rxing it.

It's great that they are becoming open to the idea, but they are not even following the regime that has been established. I have heard of all sorts of weird rxing protocol's going on over this last year, and this is bound to lead to some messed up experiences.

Cherie

There you are, Cherie!! I was wondering where you took off to.......you were missed!

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..:confused:

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..:D

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. :confused:

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. :D)

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

LDN for PPMS in YVR
 

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

LDN for PPMS in YVR
 

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.

All the MS Specialists out at UBC MS Research Center will rx it, or at least they were still doing so a month ago. I would contact them, or ask your mom's GP to contact them (or her current neuro) for confirmation that it is A-ok for the GP to do so.

I believe the MS Specialists at Bby Hospital MS Clinic will as well.

Is your mom seeing a neurologist vs. MS Specialist?

My doc (GP) does, but he isn't taking any new patients.

You could try calling some of the compounding pharmacies around town (where-ever you live) and ask them (on the sly) for the names of doctors locally that they know of who are rxing.

There are also some alternative doctors around that will rx it at a price, but it's been years since I've looked into that angle.

If you get desperate, PM me and I'll try to come up with some other ideas. The problem is that ANY doctor is likely going to want to know the patient before rxing a compounded med ...

Cherie

LDN for PPMS in YVR
 

Thanks for getting back to me, Cherie
This is very interesting -- my mum IS seeing a Neurologist at teh UBC MS clinic and he was the one who said that no one at UBC was prescribing LDN.

Now your comments have me confused and admittedly a little frustrated. I hate being stonewalled, if you know what I mean.

We have a friend who is a pharmacist and has his own pharmacy...which is a start, just not sure why my mum's MS doctor is being rather uncooperative.

Any thoughts? Also, not sure how to PM you?

New to this chat-thing!

TL

Welcome to NeuroTalk, TL. I sure hope you find a way to get your Mum on LDN. I think she will feel better.:)

Hmmm, that's interesting.

I know that the previous Director, Dr Devonnshire, was very pro-LDN, but she moved onto another position there in research or something. I also know at least some of the MS Specialists rx it, because I have friends that get it from there. One lady contacted me about it just about a month ago, and she went through her MS Specialist out of that facility to get the rx. She has been on it for the last month.

What I will do is send you the name of the two that I know that rx it there, by way of PM. To look at your PM's, go to the right corner of this screen where it says "Private Messages Unread 1, Total 1" and click on the underlined word. It will take to your private mailbox, where there will be a message from me.

Cherie

You know that really frosts my cupcake! I’ll bet that doctor didn’t even bat an eye as that lie came rolling off his tongue. I swear these manipulative doctors should save up and buy an ethical clue!

I type a big long response and lost it. :(

Unless something changed recently, it may be that only some of them rx it.

It seems the old-timers who've been around since the CRAB trial era are the one's that are ok with rxing it. I got the impression that they don't have much faith in the options available to us ...

Unfortunately they are also rxing it to those on the interferons, so maybe they've had some not so great results and decided to stop. I don't know.

Cherie

I get these email newletters. For good or bad.. I don't know, but here it is.

In this week's eMS News. Rocky Mountain MS Center

July 23, 2009

MS Therapies in the Pipeline:
Low Dose Naltrexone
Breaking News July 23, 2009

In this week's eMS News, we continue with our series, MS Therapies in the Pipeline

A web search of low dose naltrexone (LDN) brings up countless sites, each of which offers a differing account of the efficacy and safety of the therapy as a treatment for MS.

Click on Low Dose Naltrexone (LDN)

https://app.e2ma.net/app/view:Campai...reaking%20News

That is the usual response that comes from the scientists/Docs...."We need more studies"....but, none of them are willing to do them for free..:rolleyes: Sooooooo, we keep taking it and feeling a bit better because of it, and they keep saying the same thing.:mad:

Dose Timing
 

If you scroll down to the article titled Julie's Low Dose Naltrexone FAQs: Dose Timing it talks about the time you take your daily dose of LDN.

http://ms.about.com/?once=true&nl=1

I always take mine before I go to bed - usually somewhere between 9 PM and 11 PM. Sometimes earlier...sometimes later. I don't trust myself to fall asleep and then remember to take it when I wake up in the wee hours of the morning. I always wake up during the night, though.

What time does everyone take their LDN? Has anyone tried taking it in the morning?

Kell, some have self dosed themselves in the morning, but went back to bedtime, because it didn't work.

The idea is to have your endorphins blocked for a short time before your new endorphin production happens, which takes place in the wee hours of the am...between 1 and 4. I take mine around 11pm, but anytime between 9pm and 1am is OK.