Low dose Naltrexone

[maddietod]

I started again at 0.1mg on the 13th. The next morning I had a killer headache, felt off-balance (but not spinning like vertigo), and nauseous. I haven't taken it since, but I had the headache for 5 days. The nausea went away quickly, and I've still got a tiny bit of the confusion about balance.

 

[daisybell]

Started at 2.25mg yesterday morning, and had the best day I've had for several months... About to take this morning's dose and hoping that yesterday wasn't a flukey coincidence!

 

[SDSue]

3 months into LDN, (1.5 mg x 1 mth; 3.0 mg x 1 mth; 4.5 mg x 1 mth - will stay at 4.5 indefinitely)

Improvements:

* sleep - much improved (after initial insomnia with each dose increase)
* anxiety - MUCH improved!!!
* motivation - much improved; actually have a desire to accomplish things (desire, not necessarily ability)
* incontinence - virtually gone
* headaches - much improved (after initial worsening for a few days with each dose increase)
* ability to communicate face to face - slightly improved, but still PEM's me
* POTS - improved (not taking any POTS-specific drugs for now)
* PEM - not as severe
* sugar cravings - much improved

I believe these changes are due to the LDN, but then again I always feel a bit better in the Autumn. Time will tell - but I've actually been able to leave my home once or twice a week for very short durations.

In addition to the LDN, I've also been on Inosine for 3 months, so that could be a contributor - but I always feel better on my scheduled breaks from the Inosine.

I remain unable to tolerate folate and/or B-12.

And so it goes.

 

[daisybell]

I'm up to 4.5mg, having stared on half that for the first week.
Initial side effects included stomach cramps and loss of appetite, but that seems to be settling down well. I have noticed some insomnia but nothing I'm worried about.

I definitely have more energy, and particularly less brain fog which is great. The only thing I'm not sure about is how much this is just down to the LDN, and how much might be due to my thyroid levels being raised... Also I am concerned that the doctor may not be happy for me to stay on the LDN given I am hyperthyroid.. Time will tell!

 

[knackers323]

@Sushi and others, anyone know where to get the compounded form without prescription on the net?

 

[maddietod]

I gave up on the crushed pills, and started taking compounded LDN drops about 3 weeks ago. I started at 0.1mg and have worked up to 0.4mg, in the morning. I haven't had the headaches, no changes to my insomnia, huge uptick in daytime energy.

I've had a major struggle with cold-like, seasonal allergy-like symptoms, so I'm sticking with this dose until that all clears up.

 

[Ema]

@Sushi and others, anyone know where to get the compounded form without prescription on the net?

http://www.antiaging-systems.com

@heapsreal posted a cheaper one in another thread, I think, too.

 

[fibrodude84]

Starting LDN next week. Starting low and going up. So excited to join the club. I'll give my results.

 

[knackers323]

@Ema thanks. I only see the 4.5 mg dose. For those that want to take a smaller dose do we open the capsule up and dose that way?

 

[Ema]

@Ema thanks. I only see the 4.5 mg dose. For those that want to take a smaller dose do we open the capsule up and dose that way?

I would think you would have to unfortunately. I would check with them first though I can't see why opening them would be an issue.

 

[daisybell]

@Ema thanks. I only see the 4.5 mg dose. For those that want to take a smaller dose do we open the capsule up and dose that way?

That's what I did... No problems except that it isn't very easy to know exactly how much you are taking!

 

[ahmo]

@Sushi and others, anyone know where to get the compounded form without prescription on the net?

the Yahoo lowdosenaltrexone group posts online providers of LDN. If you join, you can search the forum. If you don't find what you want, ask it again, but I know the topic's been up during the last couple months.

I open my 3mg capsules. Early on I opened them to pour out tiny amounts, now I open them to create .5mg doses as I'm increasing slowly from 3. No problem. Again, on the forum you can find suggestions re how to use 50mg tablets in solution if that's the only source you find.

Here's what I posted to that forum today: (And I craeted a new way for me to refer to the illness: ME/(cfs)...maybe that should be ME(/cfs).

I began LDN in July, starting with match-head size doses. I have ME/(cfs), I've followed a variety of protocols during the last 3 years that have returned me to the land of the living. I've found, as have many others w/ ME, that LDN easily sets off detox reactions. I've had plenty of that, but had already been deeply engaged in a detox protocol for the whole of this year. At the end of August I reached 3mg, 2 1/2 months. I've increased to 3.5 during the past 5 days. I'll continue to 4.5 or until I get signals to stop here and now.

What I've gotten w/ LDN is greatly increased stamina and resilience. I can only assume that the deep autoimmune inflammatory process I had has now been alleviated. My body no longer has to struggle in some deep metabolic process, and so has more energy for me to function in the world. I am very grateful.

 

[bertiedog]

LDN at only 1.2 mg also seems to give me a lot better stamina and energy and endurance. I am also 3 months into a modified Cowden protocol which also seems to be helping my immune system cos so far I haven't suffered with the usual viruses I get this time of the year.

I have been on LDN for 5 months now and I am still sensitive to the dose I take hence I have not raised the dose to more than 1.2 mg.

I am always worried when I write positive reviews because in the past things have often slid back but it does rather seem that I am consistently better with only 2 bad days (due to severe migraines) in the past month.

Pam

 

[ahmo]

Re taking small doses, here's something I've copied from the yahoo forum. I was working w/ 3mg capsules, diluted it for small doses. Later I used those empty capsules, so now I fump 1/3 of a 3mg capsule into one of these empties, and can then divide that easily in half, into another empty, for my 5mg dose. Confusing??

Suggesting that you cut one of them, and put the contents into a very small container, like a 2 ounce one.

Then, put a tablespoon of water, and a couple of teaspoons of water into it. Preferably distilled water, but not likely a terrible thing if you don’t have it right now.

A tablespoon is 15cc’s, and a teaspoon is 5 cc’s. Total, you would have put 25cc’s of water in with the contents of that 5mg capsule. So each teaspoon (5cc’s) of liquid will be 1mg.

Have one like that tonight. Then, have one and a half teaspoons of the liquid tomorrow night. And for the next week. One and a half milligrams is a good amount to introduce your body to it for a while. For the next week, or two. If you have vivid dreams, or sleep changes, it’s letting you know it’s doing stuff. That amount would be a good place to stay for a while, because 5mg is likely to be too much, but you can still express appreciation for the prescription.

From another poster:
ot knowing how fast I was going to increase my dose, I asked the doc to prescribe 3 mg capsules and that has been a good compromise. I do open the capsules and dump the contents into however much distilled water I need to be divisible into the doses I want. Then you store the extra doses in the fridge in a, preferable brown, glass bottle. I use one with an eye dropper as this makes it easier to extract the dose I want.

I have a glass ml measuring vial, but many just buy a plastic one from the baby section of the pharmacy. It only takes a minute to mix up the doses (after you do the math!) and the only trick is that the naltrexone crystals don’t dissolve but are suspended in the water, so you have to keep shaking the bottle well to get an even distribution when you extract your dose. Basicially, no problem!

@knackers323 Copying some info from today's yahoo forum re where to buy:

ordering from
http://www.buylowdosenaltrexone.com/about-us.html has worked out for you!

I am just about to place an order with Ian as with all the positives posted
here it seemed the only logical way to go with someone without a script!

[another member:] where to buy LDN -no Rx I just this week received 60 individually sealed 50mg Nodict brand tablets from Ian at http://www.buylowdosenaltrexone.com/about-us.html .Fast and discreet and I am set for a few years for less than $150. In the freezer, I believe they can keep for up to 3 years.
And you can't beat the price! For one person at 3 mg (ml) per day, 60 tablets would last 1,000 days, which is nearly 3 years, for less than $.15 per day or $4.50 per month (less than most co-pays). Of course, with the whole family on it, plus the horses and pets, it does not go that far

 

[knackers323]

Does taking LDN have any effect on urine drug tests?

 

[wastwater]

Does cannabidol work in a similar way to LDN could it be a substitute as LDN needs a prescription

 

[Sushi]

Does cannabidol work in a similar way to LDN could it be a substitute as LDN needs a prescription

I don't think anyone yet fully understands how LDN works. But it is known to temporarily block the opiod receptors (for a few hours) so this would seem like a different mechanism.

LDN does need a prescription unless you buy it from India, but there are enough studies of its benefits that many doctors are willing to prescribe it.

Sushi

 

[maddietod]

Just an update........I ran out of my compounded liquid and dissolved one of my 50mg tablets in water and have been taking that. I was at 0.6 from the pharmacy, but have had to increase rapidly to .75 with the tablet. My doctor is back and I'll be getting the compounded version again in a few days. I'm interested to see if I need to revert to the lower dose.

Remember that my worst days had me mostly on the couch but overall still able to feed myself and get out when necessary (I don't have OI)....I'm putting my house on the market. I just spent 6 hours sorting out and cleaning one room. After 2 months on LDN I feel confident enough of its effects that I'm finally able to move out of this house that feels so big with all the kids gone.

I've still got some brain-glitches, and I don't do heavy work like mopping/vacuuming. I pace myself. But a year ago at this time I was reading on the couch or sitting doing jigsaw puzzles all day, with no mental or physical stamina.

 

[heapsreal]

Just an update........I ran out of my compounded liquid and dissolved one of my 50mg tablets in water and have been taking that. I was at 0.6 from the pharmacy, but have had to increase rapidly to .75 with the tablet. My doctor is back and I'll be getting the compounded version again in a few days. I'm interested to see if I need to revert to the lower dose.

Remember that my worst days had me mostly on the couch but overall still able to feed myself and get out when necessary (I don't have OI)....I'm putting my house on the market. I just spent 6 hours sorting out and cleaning one room. After 2 months on LDN I feel confident enough of its effects that I'm finally able to move out of this house that feels so big with all the kids gone.

I've still got some brain-glitches, and I don't do heavy work like mopping/vacuuming. I pace myself. But a year ago at this time I was reading on the couch or sitting doing jigsaw puzzles all day, with no mental or physical stamina.

Maaadddie sounds good. Big thing moving house. Our youngest has 3 yrs left of school and I want to down size and move out to the country where house prices are cheaper too. Stressful thinking about it.

I'm glad ldn is helping you, it seem to take awhile before you found something helpful.

 

[minkeygirl]

@madietodd I can't afford compounded so I get the 50 mgs, crush them and put them in 50 ml water and then use a 10 ml syringe to draw off what I need. You can keep the liquid in the fridge for a month (per some earlier threads here).

Glad you figured it out. I'm hoping I'll have better luck with the LDN this time. I stopped after a few months when I crashed and was trying to figure out what was what.