This Is MS Multiple Sclerosis Community: Knowledge & Support

I posed this question in an earlier thread but it did not receive a response. Perhaps everyone is on holiday or I phrased the question badly? However, being the persistent little soul that I am – here it is again.

I have to confess I am still struggling to figure out exactly how this stuff is working so the following is a “think bubble” for anyone to comment upon.

To set the scene:- I have never taken prescribed drugs other than painkillers for slipped disc and I had been following Dr. Lawrence’s dietary recommendations for a full year before getting access to ldn. I finally began ldn on 12th March this year so I am beyond the 3-month mark.

After an initial period of trying different times & dosage, I have settled to a routine of 3mg around 9pm. To inhibit any problem there may be with the filler (CC) I empty the capsule straight into my mouth and swallow the capsule too, in case I’ve missed any. Yes, it is disgusting but I am not taking any chances!

The result of this regime is that bladder urgency and frequency, spasm and pain are no longer a problem. Numbness is now noticeable only in my fingertips – nowhere else. Fatigue also, is a thing of the past and only a problem if I try to cram too much into a day.

I feel like typing that paragraph again, in upper case – it’s the sort of thing that should be shouted from the rooftops! These are not slight changes you understand – before ldn; these symptoms were so bad that I was effectively housebound.

Now this is where I start to get greedy – my mobility has improved, but nothing like as dramatically as the aforementioned symptoms. I think maybe it could be better, with a bit of fine-tuning on either the time or the dose. I have tried experimenting a little but to no avail.

The present situation enables me to undertake visits to friends, hospitals, physio, local shops etc. without help, and provided I time it right. The necessity for careful timing is because I get a period of about three hours in the middle of the day when stiffness is a real problem and I struggle to walk at all. I’m not tired – my legs are just totally unresponsive. This mobility problem also makes it impossible to begin working again

The thing that puzzles me is that, whilst I need a walking stick if out during the day and can cover only a relatively short distance, from about 7.30 pm there is a marked improvement. Now, this is BEFORE I take my daily ldn. If I went out in the evening with my husband, I would not need the help of the sick.

Even stranger, between 9.30 pm (30 mins. after ldn) and bedtime (around midnight), I can walk a quite brisk ½ mile or more, without any help at all because this improvement increases even more from about 15 minutes after taking my 3mg. I can’t decide if this is because last night’s ldn is wearing off, thus causing my endorphin level to be still falling or because today's 3 mg. is already having an effect. The improvement is wonderful, albeit not a lot of use if you live where, for most of the year, it is dark at that time and the normal working day is finished!

So here is my query - am I right in thinking that ldn is supposed to shut down your normal night-time production of endorphins for a temporary period in order that when you wake, your body boosts production of said endorphins because it has been fooled into thinking it is not making enough?

If so, is it this extra production that brings about my improvements? I thought endorphins were the body’s natural painkillers, so how does extra pain relief help signals get through the missing bits of myelin?

In addition, when does this extra boost happen? Is it when you next wake, even if that is as little as an hour after you fell asleep (like ‘cos the cat woke you!) or does this extra production happen when your body is in day-time mode and you are up and doing the next morning? On the other hand, does it fluctuate for entirely different reasons and if so, what are they?

Then other questions occur – why are all the other improvements so constant? Are they the result of the same defect that is causing the leg spasticity? If so, why do they not suffer the same set back for the same three hours each day?

It’s almost as though NOT producing any endorphins gives brain signals the best chance of getting through to my legs but does not interfere with improved signals to other functions. Is this possible?

All these questions aside, I feel sure there has been no progression since I began ldn. For this alone, you may say, I should be grateful. Indeed, I truly am but if there is scope for further enhancement, I should be a fool not to strive for more mobility.

If you have, thank you for reading my ramblings – any comments will be most gratefully received.

I loved what (and how) you wrote. So close to my heart and thus I feel compelled to reply despite admitting from the outset that I am unable to constructively help with your queries (many of which I have often considered myself).

I too have experienced similar improvements. Over a year ago now I was a living wreck struggling with innumerable symptoms and imprisoned by crippling fatigue which all told made day-to-day living herculean. After starting LDN with a slightly sceptical but a ‘what have I got to lose?’ attitude I was overwhelmed by almost immediate bladder relief and alleviation of fatigue along with a catalogue of other symptoms significantly improving.

At the time I was so thankful I could never have imagined that a year on I would still be searching for more. I agree, we should be grateful. Others have not seen similar amelioration from LDN and I too have felt ‘greedy’ for wanting more incremental gains. However, on reflection I’ve substituted the word ‘greed’ for ‘craving’ or ‘longing’.

You see, I have over the years (and more recently following an allergic reaction to Rebif) acquried plenty of what I refer to as ‘collateral’ damage. I doubt I shall ever shake it off no matter what but that still doesn’t stop me trying and at least I have the energy to pursue it these days!

I also have increased spasticity (more like stiffness really) in my legs from LDN (3mg Avicel filler) but I find exercise and stretching helps there. I am still ambulant although limited in how far and how long I can keep going. This is where my main focus is right now. I find your daily ‘mobility’ timetable uniquely bizarre. I wonder why that happens to you? This is where the trials are so greatly lacking and yet so greatly needed. I wish I could proffer some substantial advice but I can’t.

I just wanted to reply…

Regards,

Annette

PS Just had a thought.... have you tried supplementing with DL-Phenylalanine ? Dr. Bihari's recommends two * 500mg/day if you do NOT have high blood pressure. Dr. Bihari says this will keep your endorphins 'up' through the day. I wonder if this might regulate things more evenly for you?

I'm afraid I don't have any answers either, but perhaps I can add a few pieces to the puzzle . . .

LDN apparently remains in your system for only 18 hours, from the time you take it. So, theoretically, by 3:00 pm each day, you are operating without LDN.

I find that I start to wear down anywhere from 1:00pm to 6:00pm, daily. However, when I've adjusted my anti-depressant, to take it in the mid-mornings rather than my normal evening routine, my down time changes to when I first wake up. So, perhaps it is some other drug that is causing this fluctuation for you too?

Sorry that I can't help with answers to your questions . . . but I sure do love that LDN has given me back so much of my life!

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<div><span class="postbody">''In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices.''&nbsp; </span><span cla

Dear Cherie,

That sounds interesting re your combination of LDN at night and an anti-depressant mid-morning. Could you say a little more about it, please? eg. is the a/d desipramine as used by OddDuck, dosages etc. Sounds like there has been a positive effect.

Regards & thanks,
Phil.

Hi Phil,

I had my first Transverse Myelitis attack (NOT NICE!) in 1991 and recovered fairly well from it. I was dx with "probable MS" at the time, but was advised that there was a chance that the TM attack would be an isolated occurence and it wasn't MS-related at all. (TM attacks are an indication of something occurring in the spinal cord).

Basically I just carried on, ignoring all the symptoms until I had another TM attack in 2003. This time I did not heal completely, had an MRI, and was given the official dx of MS.

I researched the efficacy statistics and side-effects of the mainstream drug options (CRABs) for about 2 years, before I was ready to make a decision. During this period, I had quite severe spasticity pain, and was very fatigued with terrible brain fog.

In Nov/04, my Neuro suggested an anti-depressant for the fatigue. I made my doctor and Neuro both "test" me for depression because I did not "feel" depressed. The tests came back that I wasn't clinically depressed. However, I went on one of the other MS boards with a cry for help about how my body was processing "stress". Whenever I encountered even the smallest amount, my spasticity SCREAMED at me.

Several people suggested anti-depressants . . . so now I was getting this recommendation from all sides.

I started on Celexa (20mg) in Jan/05, and almost immediately saw a difference in my fatigue level & brain fog. I guess once I had an emotional stabilizer in my system (the anti-depressants), the spasticity pain also become much less bothersome. I was not a 100% (maybe 50% better), but so long as I got my afternoon nap (Celexa forced me to sleep daily), I was reasonably functional the rest of the day . . . . yeeha.

So, when I finally decided on which MS drug to take, it was LDN. I started on May 20th, and have felt like a million bucks since the 21st. I realize that not everyone see's this immediate and drastic improvement, but I was one of the lucky ones!

I didn't want to take the LDN at the same time as the Celexa in the beginning (bok, bok), so I moved the Celexa from 11:00 pm to 10:00 am when I started on LDN. I took the LDN @ 11:00 pm instead. What I soon realized was that I'd wake up every morning really groggy, and I no longer wanted my afternoon nap.

After a few weeks, I was brave enough to move the Celexa back to 11:00 pm (same time as the LDN), and the morning grogginess went away . . . but afternoon naps were again a requirement.

I am working on weaning myself off the antidepressants this month, as I am hoping I no longer need them now that I am on LDN. I don't have the pain and fatigue I had for two years, and I feel great, so maybe the LDN will be enough. Guess I'll find out soon enough!

PHEW . . . so that was a long story!

What I was really trying to say is that it may not be the LDN that is causing the fluctuation in how we feel throughout the day. Other drugs, if we are using them, can enter into play too.

Now, what was the question again?

(BTW, is there a spellchecker somewhere on this board?)

_________________
<div><span class="postbody">''In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices.''&nbsp; </span><span cla

Thanks Cherie, that was very helpful and inspiring. It sounds like LDN may be having a positive impact on your spasticity. Regards, Phil.

an answer to one of the questions

LDN does create an increased production of endorphins (natural painkillers), however it is not the pain killing properties of these molecules that help in MS, like everything else in the human body things often have more than one role. The endprphins are thought to upregulate the immune system (to gain more control!) hence help with MS - nothing to do with pain.

Also as for the duration of action and when things work.. thats another tricky one..

Any drug lasts a certian amount of time in the body (i think it was quoted to be 18 hrs) So LDN is present for 18 hours...

BUT its not directly the LDN that works with MS, the LDN probably triggers a cascade of endorphins which in high levels may act upon a certain receptor which then produces a further type of endorphin / or other unknown molecule which then may act somewhere else to do something miraculous to our immune systems to make us feel better. This process takes time and the mechanism by which it occurs is probably unknown

So in short LDN may take 3 hours or 6 hours to have its effect and therefore if the drug leaves the body after 18 hours you may still be having a response 3 or 6 hours after that!! But it could still be having an effect 6 weeks after...Its a very complex issue... and dont forget people react very differently too!

If anyone wants to read about this do a search for the pharmacodynamics of LDN... this correlates the dose and time with the biological effects of the drug. You may find nothing though cause the PD is difficult to determine

Hi Phil,

Yes the LDN has most definitely had a very positive affect on all of my MS symptoms, but most importantly on spasticity pain, bladder/bowel function, and fatigue/brain-fog. These were my worst symptoms, so I am very pleased (and lucky).

My newfound energy means that I am always testing the limits, and I have come to realize that LDN doesn't make me invinsible. The MonSter is still lurking, even though I feel so great. I'm re-learning how to listen to my body because the messages to "slow down" are negligent compared to prior LDN.

I had a chance to look through OddDuck's recent posts, re: antidepressants, and I am going to do some research on this information. If LDN can make me feel this good, I guess there could be merit to other drugs having the same affect. I used to thrive on stress (before MS), and maybe I just used up my stress-credits for a lifetime . . .? I've never had depression though, except during PMS time, but it's possible that few days made up for the rest of the month of feeling happy.

Hir Resnet6,

You make some awesome points. Thanks for the information!

_________________
<div><span class="postbody">''In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices.''&nbsp; </span><span cla

These responses have all been most helpful and I thank you all for adding pieces to the puzzle.

Annette, after discussion with Dr. Lawrence, an order for Phenylalanine is being processed as I type – many thanks for the suggestion.

I am now trying to make some sense of the points raised by Cherie and rasnet6.

Cherie, I love your signature...........