LDN and what to expect

[wabi-sabi]

I really struggle with the experimental part.

Yes, this is one of the more frustrating parts. Right now it feels like the doctor knows what medication to give me, but I have to find the correct dose of the medication myself. That can take weeks of trial and error, and the does is usually much smaller than the prescribed one. I've been trying out a new mast cell stabilizer since June and have only now started to home in one the right dose. Too much or too little and I am delirious and bedridden. The right amount and I was able to leave the house to get a massage yesterday!

You might try a tiny dose of the LDN before giving up on it completely. I've gotten the most benefit by taking astronomically small doses of medication that work well for other people in normal doses. I just react to things so strongly. Not sure why. LDN doesn't help all of us, but it helps enough of us that I think it's worth trying in a smaller amount. Doctors that are unfamiliar with ME/CFS often give too big doses, but of the right medication.

For a good experiment you might try to see if there is a dose that he doesn't have much reaction to at all. Then keep the dose at that level for a while. Could be a week, could be a month. Then try to increase and monitor the reaction. I built up to 3 mg over years!

The only point I'm trying to make is that 0.25mg is a very high starting dose. I would expect a bad reaction from that high a dose. In order to know if LDN will work or not, you need to start with an appropriate size dose and see what happens then. Our systems are quite fragile and can't respond quickly. Every time I want to take more medication faster-to get better faster- my immunologist reminds me this is not how immune systems work.

On a practical level it's hard to break a 0.5 tablet or capsule into a small enough dose to start. You might try getting it made as a 0.25mg and then dividing that. It's a compounded medication, so it can be made in custom doses.

 

[Wishful]

The only point I'm trying to make is that 0.25mg is a very high starting dose. I would expect a bad reaction from that high a dose. In order to know if LDN will work or not, you need to start with an appropriate size dose and see what happens then. Our systems are quite fragile and can't respond quickly.

This is an example of how different we all are. I started on 4.5 mg LDN, and that worked fine, no problems. Anything below 2.25 mg didn't have a noticeable effect. If I started on tiny doses that some people recommend, I might have given up before reaching an effective dose, or maybe gradual increase would have made higher dosages ineffective, so I would have lost a valuable treatment. There's just no way to know how different experiments would have gone. For someone else, maybe starting with 4.5 would have been a disaster, while microdosing would have been the solution.

I think I only had one treatment (prednisone) that took longer than 24 hrs for full effect; that one had no effect for 5 days, then I awoke to full remission, that lasted until the prescription ran out. The few treatments I tried for weeks or months with no effect never did show an effect, so I no longer bother testing treatments for more than a few days, unless I know that the theoretical mechanism does take longer.

We don't know how we'll respond to treatments without trying them. If your best judgement is only a wild guess, that's just how it is, and there's no expert to turn to for better judgement for your specific case. I was lucky in not suffering any lengthy bad reactions to experiments; nothing longer than a day or two. I didn't have any experiments I regretted. I've had some I regretted not trying sooner. I expect there are some that I'd regret not trying sooner, but I don't know what they are. Such a frustrating disease!

 

[wabi-sabi]

Such a frustrating disease!

Isn't that the truth!

 

[Hope_eternal]

Yes, this is one of the more frustrating parts. Right now it feels like the doctor knows what medication to give me, but I have to find the correct dose of the medication myself. That can take weeks of trial and error, and the does is usually much smaller than the prescribed one. I've been trying out a new mast cell stabilizer since June and have only now started to home in one the right dose. Too much or too little and I am delirious and bedridden. The right amount and I was able to leave the house to get a massage yesterday!

You might try a tiny dose of the LDN before giving up on it completely. I've gotten the most benefit by taking astronomically small doses of medication that work well for other people in normal doses. I just react to things so strongly. Not sure why. LDN doesn't help all of us, but it helps enough of us that I think it's worth trying in a smaller amount. Doctors that are unfamiliar with ME/CFS often give too big doses, but of the right medication.

For a good experiment you might try to see if there is a dose that he doesn't have much reaction to at all. Then keep the dose at that level for a while. Could be a week, could be a month. Then try to increase and monitor the reaction. I built up to 3 mg over years!

The only point I'm trying to make is that 0.25mg is a very high starting dose. I would expect a bad reaction from that high a dose. In order to know if LDN will work or not, you need to start with an appropriate size dose and see what happens then. Our systems are quite fragile and can't respond quickly. Every time I want to take more medication faster-to get better faster- my immunologist reminds me this is not how immune systems work.

On a practical level it's hard to break a 0.5 tablet or capsule into a small enough dose to start. You might try getting it made as a 0.25mg and then dividing that. It's a compounded medication, so it can be made in custom doses.

Thank you so much @wabi-sabi! This is very helpful. The LDN they gave him is in capsule form. I reached out to his doctor to see what our options are but haven’t heard back. Maybe I can sprinkle it in his yogurt in the morning or some juice? Im
Not sure how potent the taste is. Also did you take the small dose every day or space it out? I gave him 2 days before doses but maybe he needs more spacing even on the smaller dose?

 

[Hope_eternal]

ETA: I do eat store-bought yogurt but have switched from the cheap kind to full fat Fage - the Fage costs about twice as much but it's an amazing product, no comparison to the cheap stuff. So I'm wondering if it would be allowed under the SCD diet --

We make the SCD yogurt and it’s delicious. The author states that there isn’t any yogurt on the market that is suitable unfortunately. He really looks forward to the yogurt, it’s like a dessert when I add honey and strawberries or apples that I heat to break them down and make a thick juicy sauce with some addded fruit juice 100% juice not from concentrate. We have to get very creative with the diet. For his birthday Last week I made him. Vanilla cupcakes made with coconut flour and honey, topped with strawberry butter cream frosting. He was so happy lol.

 

[pamojja]

The LDN they gave him is in capsule form. I reached out to his doctor to see what our options are but haven’t heard back. Maybe I can sprinkle it in his yogurt in the morning or some juice?

If I start low and increase slow with a new supplement, I not only take a crumble of a naltrexone tablet (the form available to me), but otherwise also open capsules to take a fraction of its content.

LDN I take does taste bitter, but there are others using it even sublingual. Terrible taste might of course come from other additional ingredients of a tablet or capsule too. For me, stevia extract in water takes the edge off the unpleasant tastes. Curt or juice might work too.

 

[Wishful]

The LDN they gave him is in capsule form.

The capsule is most likely lactose as filler, if that's a problem for him. Other fillers are possible. I think there's also a liquid form; no idea what might be in that.

 

[Hope_eternal]

The capsule is most likely lactose as filler, if that's a problem for him. Other fillers are possible. I think there's also a liquid form; no idea what might be in that.

Ah yes that didn’t occur to me. I’ll have to look into that. Thank you!

 

[Hope_eternal]

If I start low and increase slow with a new supplement, I not only take a crumble of a naltrexone tablet (the form available to me), but otherwise also open capsules to take a fraction of its content.

LDN I take does taste bitter, but there are others using it even sublingual. Terrible taste might of course come from other additional ingredients of a tablet or capsule too. For me, stevia extract in water takes the edge off the unpleasant tastes. Curt or juice might work too.

Thank you. This is helpful. I haven’t given him another dose since Wed. and he’s still hasn’t been able to get out of bed. I think I might give him a few more days and then try a smaller dose.

 

[Blazer95]

i declined on LDN so i had to stop it. felt pale, heart was racing, and so on. but that seems to happen very rarely. good luck!

 

[wabi-sabi]

The LDN they gave him is in capsule form.

Mine is in capsule form too. Initially I got it compounded with rice flour just in case I had a reaction to other stuff, but that didn't prove necessary. I react to everything except food!

Anyway, I broke open the capsules and poured the powder out onto a plate. Then I divided the powder into parts (maybe 5) and just lapped it off the plate. It sounds a little strange, but it worked for me. I didn't bother mixing it in food since that just felt more awkward and messy. It's been about a year since I did that (that's how slowly you need to increase) so I don't quite remember. I usually do every other day when I start a new medication and just play it by ear on how fast to increase. It's always slower than I want.

 

[Hope_eternal]

i declined on LDN so i had to stop it. felt pale, heart was racing, and so on. but that seems to happen very rarely. good luck!

That does not sound like a pleasant experience. Maybe the dose was too high for you or it just doesn’t agree with you. I’m sorry you went through that. He’s had 3 doses at .25mg and so far no horrible reactions aside from the fatigue.

 

[Hope_eternal]

Mine is in capsule form too. Initially I got it compounded with rice flour just in case I had a reaction to other stuff, but that didn't prove necessary. I react to everything except food!

Anyway, I broke open the capsules and poured the powder out onto a plate. Then I divided the powder into parts (maybe 5) and just lapped it off the plate. It sounds a little strange, but it worked for me. I didn't bother mixing it in food since that just felt more awkward and messy. It's been about a year since I did that (that's how slowly you need to increase) so I don't quite remember. I usually do every other day when I start a new medication and just play it by ear on how fast to increase. It's always slower than I want.

Than you! I will split open up the capsule and divide it next time. I think I’ll space it to every 2 days and go from there. Thank you for the guidance. I get so nervous with all this. He was in good spirits today. I love it when he’s smiley. It helps me feel better to see him that way.

 

[wabi-sabi]

I love it when he’s smiley. It helps me feel better to see him that way.

I 'm happy to hear it.

 

[wabi-sabi]

Another thought- I take 3mg a day, but not all at once. It's 1 mg every couple of hours. My immunologist says this is better. Can't hammer on the immune system, but have to finesse it.

I think of my immune system as an angry feral cat that needs to be soothed down little by little, even though I want it to be tame all at once.

 

[bad1080]

The LDN they gave him is in capsule form.

try getting a liquid, it makes it so much easier to experiment with different doses! alternatively you can make your own from the 50mg pills (which makes it a lot cheaper).

 

[Hope_eternal]

Another thought- I take 3mg a day, but not all at once. It's 1 mg every couple of hours. My immunologist says this is better. Can't hammer on the immune system, but have to finesse it.

I think of my immune system as an angry feral cat that needs to be soothed down little by little, even though I want it to be tame all at once.

This is good to know. Thanks! I may play around with that approach, it sounds gentler on the system. I appreciate you letting me know.

 

[Hope_eternal]

try getting a liquid, it makes it so much easier to experiment with different doses! alternatively you can make your own from the 50mg pills (which makes it a lot cheaper).

Thank you. I will keep this in mind if our approach doesn’t work well. This is good to know. Thanks so much.

 

[wabi-sabi]

I will keep this in mind if our approach doesn’t work well.

Please don't do this. This is what compounding pharmacies do for you. They exist to custom make medications. It might be cheaper depending on what your insurance will pay for, but it is much, much harder to get a precise dose. If you are having trouble dividing up 0.5mg of powder accurately, just think of how much more difficult that will be when you have 50mg of powder from a bottle of smashed pills.

One smashed 50mg pill will need to be divided (accurately!) in 500 equal parts to get a 0.1mg dose (which is a reasonable starting dose). I really don't think that's possible for anyone to do at home. Smashing more pills at once just makes the problem bigger. The chances of getting too large a dose increase by a lot.

Pharmacists are there to help you measure medications correctly. They can mix any dose you (or your doctor) requests. Let them do their job for your own safety! I have to mix my own dose of cromolyn from the 5mL vials and I get it wrong and make myself sicker every couple of weeks. Even though I know the consequences and I've been doing it for over a year... It just isn't possible to measure really small doses accurately at home.

Using 50mg tablets to try to get a 0.1mg dose is like ordering an designer, custom wedding dress in the wrong size (on purpose!) and then bringing it home to do alterations yourself when you are not a seamstress or tailor.

OK, I'll get off the soapbox now

 

[Hope_eternal]

Please don't do this. This is what compounding pharmacies do for you. They exist to custom make medications. It might be cheaper depending on what your insurance will pay for, but it is much, much harder to get a precise dose. If you are having trouble dividing up 0.5mg of powder accurately, just think of how much more difficult that will be when you have 50mg of powder from a bottle of smashed pills.

One smashed 50mg pill will need to be divided (accurately!) in 500 equal parts to get a 0.1mg dose (which is a reasonable starting dose). I really don't think that's possible for anyone to do at home. Smashing more pills at once just makes the problem bigger. The chances of getting too large a dose increase by a lot.

Pharmacists are there to help you measure medications correctly. They can mix any dose you (or your doctor) requests. Let them do their job for your own safety! I have to mix my own dose of cromolyn from the 5mL vials and I get it wrong and make myself sicker every couple of weeks. Even though I know the consequences and I've been doing it for over a year... It just isn't possible to measure really small doses accurately at home.

Using 50mg tablets to try to get a 0.1mg dose is like ordering an designer, custom wedding dress in the wrong size (on purpose!) and then bringing it home to do alterations yourself when you are not a seamstress or tailor.

OK, I'll get off the soapbox now

Good points. I don’t like taking chances and am very cautious with meds. I’m even freaking out about splitting up the capsule