[LillyMS]

I have MS and will be starting LDN for the first time tonight. I just stopped Tecfidera as it gave me leukopenia (severe drop in WBC) and was too toxic (also have a HUGE concern it would eventually cause cancer). For those who take LDN for MS... what dose do you take? I'm trying to see how many take 3 or 4.5mg rather than ONLY 1.5mg.

I am VERY confused what dose would do the best job at preventing MS progression.

How many here went off all MS drugs and are ONLY using LDN like myself?

Thanks!

[SallyC]

Welcome Lilly, I hope you like it here.

I started on 3 mg, about 12 yrs ago and upped it to 4.5 mg a few yrs later
and have been on that(4,5mg) ever since. I will be on it forever.

[LillyMS]

SallyC,

Thanks for your response. I would be very grateful for your opinion on the following... and anyone else's also of course:

I was prescibed 1.5mg, but the MD I saw was very ignorant. He didn't even know what gelatin is. That is crazy!!! When I told him I'm happy I found a compounding pahramcy who can give me veggie capsules instead of gelatin... he proceeded to ask me "what is gelatin" and then asked his assisatnt to clarify what is gelatin. I also told this MD that I will be getting MRIs every 6 months and he lectured me (NUMEROUS TIMES regardless of whether contrast dye is used or not) that getting so many MRIs is bad/detrimental. The opposite is true!! Obviously, it is super imporant to get MRIs especially since I very recently, stopped all MS drugs and am trying out LDN and need to see what is happening!! I actually get MRIs without contrast sicne I had bad reaction to the dye previously. The dye is a toxic substance.

He also told me if I handle 1.5mg fine for the first 2 weeks, he would still REFUSE to increase the dose. I have now been forced to make another appointment with another MD who is hopefully more EDUCATED than the one I saw. The one I saw only charged $65 and I can clearly see why. The new MD I'm seeing next week charges $375... so expensive and doens't accept insurance but I feel like I have no choice. I REALLY need a valid opinion on optimal dosage of LDN for MS.

... so I am seeing this MD next week who seems very good but very expensive *admin edit*

I am very worried that 1.5mg will NOT do nearly as good of a job at keeping MS from progressing as let's say... a 3 or 4.5mg???

Thanks.

[LillyMS]

SallyC,

I forgot to ask, are you taking any MS drugs or ONLY the LDN?

Thanks so much.

[ashleyk]

I came across ldn 10 years when they said my wife had MS Turned out to be Parkinson's. My wife started taking ldn 10 years ago. Hard to get and expensive. She took it consistantly for the following 7 years. She gave up on it because she continued to progress where, now, she is severly disabled and at the place where many people with PD are after 12 years.
I did a lot of reading on ldn and was a believer but I no longer am. You can follow my ashleyk thread on Neurotalk Parkinson's, ldn dxm. If you want an equivalent opioid type drug for neuroprotection, look into dextromethorphan dxm (CVS cough syrup, 1/2 tsp day). It is easy to get, much cheaper and you know what you bought,
John

http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract
http://jpet.aspetjournals.org/content/305/1/212.full
http://www.fasebj.org/content/19/6/550.full

[SallyC]

Ashley I am sorry it didn't work for you. . I doesn't work for all but does still
work for many, including me. LDN is not an opiod, if mixed properly with pure
naltrexone powder and not just grinding up the 60 mg tablets.

Lilly, I am only taking LDN now. Tried Avonex and Copaxone, both of which
made me feel worse than the disease and did not stop my exascerbations.

The 1.5mg is a starting dose only, for those who are drug intolerent. As soon as
they are tollerent of the 1.5mg, they are upped to 3mg or 4.5mg.

[LillyMS]

ashleyk,
Interesting, I never of of sing dextromethorphan dxm before. I will check out those links, thanks for the info.

SallyC,
Thanks, that's what I thought! However, this MD I saw said he would refuse to up the dosage from 1.5mg. This is why I've been forced to book an appointment with another MD (Dr Dach in Fortlauderdale Florida). This other MD seems very knowledgable about LDN.

On a side note, I have a unique question I was hoping someone here might know answer to. I just got the LDN in veggie capsules because I am a vegan and did not want gelatin for numerous other reasons. So, I asked the pharmacy whether the veggie capsules contain any corn or soy as I definitely DO not want that either. This is thanks to what Monsanto is doing to the food in this country with their dangerous GMOs. I buy everything strictly organic and doing everything possible to avoid consuming any GMOs. I actually plan to eventually move to Europe because at least there I don't have to worry about being poisoned by a large corporation called Monsanto (GMO is mostly BANNED in the Europe). It is disgusting what is happening in this country. Very often GMOs are hidden in vitamins & capsules etc that people are not even aware of.

Since I was unable to find out whether the veggie capsules contain any corn/soy (because the compounding pharmacy I used didn't know anything and got aggravated with me when I inquired what the ingredients of the veggie capsules is. I felt this was was rather unprofessional!! and this pharmacy is recommended by many people). Is it safe for me to simply empty the LDN powder out of the capsules into a glass of water and take it like that? This is why I will have to consume capsules that are potentially GMO.

Next week I will be asking the new MD to write a script for LDN but in liquid form so I don't have this "problem" again.

If anyone here doesn't know what GMOs are and who Monsanto is please google "Seeds of Death" and watch that hour long documentary.

GMOs gave leaky gut, which then lead me to developing MS! GMOs was just one environmental trigger of several I've been exposed to.

[Erika]

I started with 1.5, then went to 3 after a few weeks, then went to 4.5 about a month after that. I also take Baclofen to control spasms, Ibuprofen for pain and Modafinal to counter narcoleptic fatigue. This body seems to react poorly to other medications, so I avoid them...or even trying them.

For me, the LDN takes the edge off of symptoms and the times that I have gone off of it for a few days, the body let me know with an increase in symptom intensity.

It is important that LDN be taken as close in time to when you have deep sleep (REM). I usually take mine around 11:00 PM.

Hope that it works for you.

With love, Erika

[LillyMS]

Erika,

So if I don't go to bed until 11pm I should take LDN around 10:30pm? This is confusing because they kept telling me to take it at 9pm, but I don't go to bed that early.

This is so silly, they should simply say take it an hour before you go to bed for example... NOT tell everyone to take it 9pm because everyone goes to bed at different times!

Thanks =)

[CarolM]

Hi Lilly,

I started taking LDN four or five years ago. I started at 2 mg and moved up to 3 after a month or so. I hate swallowing pills so I had it compounded in liquid form at first. It was only good for 3 weeks so I had to keep going back for refills before I sucked it up and got the capsules.

Taking LDN was life changing for me. The worst part of my MS was heat intolerance and that disappeared after the first month. I very seldom "crash" anymore and definitely have more energy. I can't speak to relapses because I only had two, six years apart, before I began taking LDN. I've never taken any other drugs for MS.

If you have surgery or severe pain and need opiates you cannot take LDN as it is an opiate antagonist. It will block the effect of the opiates.

I take mine when I go to bed as I never fall asleep right away. There have been a few times when I wasn't very diligent about taking the LDN. Little things started creeping in but once I resumed the LDN I was back to "normal".

I hope it works well for you, but I wouldn't expect much at 1.5 mg. "They" say that 4.5 mg is optimal for MS unless you get an increase in spasticity.

Anyway, I'm a believer! That says a lot because I also tend to be a skeptic.

Carol