Just started at 4.5mg and feeling numb

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

Postby lady_express_44 » Tue Jun 28, 2005 3:02 pm

I'm just going to copy out of my "Risk Assessment" paper that my doc made me do up before he would give me the LDN rx. . .
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What are the preferred compounding filler options?

Unless the low dose of Naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

o Lactose is the original formula filler and the one that Dr. Bahari recommends, unless the patient is lactose intolerant.
o Avicel (microcrystalline cellulose) can be used unless a patient is allergic to cellulose, in which case it may cause nausea.
o Acidophilus is good option, and helpful for those with stomach irritations.
o Calcium Carbonate is often used because it is inexpensive to manufacture, and causes few sensitivity issues. However it can be compact too tightly in the capsule, causing the medication to become sustained or slow-release. Some patients roll the capsules in their fingers to loosen the powder inside

Note: If your compounder grinds down the "Revia" tablets, then there is already Lactose (among other fillers) in the tablets. The purest (best) form of Naltrexone is the powder, combined with a fast-release fillers.

Are there other ways to administer LDN?

In about 1 out of 50 patients, the patient will experience ongoing sleep disturbance. In this case, Dr. Bihari recommends that the pharmacy make up a 100 ml solution containing naltrexone in distilled water at a concentration of 1 mg/ml. The patient is told to take 1 to 1 1/2 ml. at bedtime - possibly working up to 2 ml. (2 mg).

Rarely, a pharmacist may opt to supply Naltrexone as a solution, in distilled water, with 1 mg per ml dispensed, with a 5ml medicine dropper.

Liquid LDN can also be made with Naltrexone pills. 1 pill = 50 mg + 50 ml distilled water or acidic fruit juices (not grapefruit juice) then let dissolve by shaking. Take either 1.5ml, 3.0ml, or 4.5 ml, as prescribed.

Note: If LDN is used in a liquid form, it is important to keep it refrigerated. Liquid LDN is best prepared as ‘fresh’ solution, as often as possible, due to it’s limited shelf life in liquid form.


http://www.larrygc.com/ldn/ldnrisks-doctorsletter.doc

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I have my pharmacists make the liquid up for me, in a monthly supply. He adds the bubble-gum flavouring too . . . very pleasant.

Cherie
<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
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Postby watergypsy » Wed Jun 29, 2005 5:39 am

Thank you Cheri, that is most helpful. I shall in future empty the capsule directly into my mouth since I doubt my supplier could change the filler.

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. Please do……..

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, when does this extra boost happen? Is it when you next wake, even if that is only a couple of hours 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 day?

In addition, for what length of time would endorphin production occur in a ‘normal’ person (i.e. no MS and no LDN)?

I wonder because I seem to get the best results when I take about 9 p.m even though I usually go to sleep around midnight. What puzzles me is that, after about only three quarters of an hour, my legs seem to wake up and I can walk our dog for nearly half a mile, and with no stick! At any other time in the day, a couple of hundred yards is my limit. It’s almost as though NOT producing any endorphins lets the brains messages get through to my legs. Is that possible?

All my other ldn benefits:- no fatigue, no bladder urgency or frequency, no spasms and no numbness except finger tips, all remain the same no matter if I take 2 mg or 3 mg. and no matter what time I take, as long as it’s sometime in the evening.

The reason I vary the dose is to avoid the spasticity effect I notice if I have too many days on 3 mg. Dropping back to 2 mg. seems to clear this.

I have no medical confirmation but I am sure there has been no progression since I began ldn.

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