LDN - how's it working for you?

I've been on LDN for...


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I just found it too frustrating. since insomnia had not generally been one of my symptoms, to take something that causes it, for days on end, in my case, is too much of a step down. I also felt no benefit to my cognitive functioning, which is my personal holy grail right now. A small increase in aerobic capacity at the expense of all my sleep and a resulting worsening of even my meagre cognitive functioning is just not worth it. I tried it for nearly two months, only taking every week even, and could not get past the insomnia, in fact it got worse. Even my normal old sleep which I need way too much of is preferable to lying awake at night. I also don't want to start taking a sleeping pill in order to take a medication. That is just adding in way too many factors for me and I don't want to permanently mess up my sleep. Since taking the LDN, other supplements have affected my sleep much more so than they did before, so I think there is some lasting effect form the LDN. Way too scary for me. Glad it is working for others.
 

*GG*

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I think LDN has helped me a lot also. Cannot say with 100 percent certainty, since I got tired of chaning 1 thing at a time, for weeks to months, and finding no benefit. So when I had a major flare up 3 years ago, I changed many things, lifestyle, meds etc..

GG
 

xks201

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I don't see how LDN could benefit someone with fibromyalgia because FM patients already have high levels of endorphins and low levels of dopamine in general. I would suspect that a real opiate would probably help more.
 

Mouse girl

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Nice to read the article from a reputable study like the Standford. But, one question I have is, how sick were the patients? I have CFS and fibro. Most fibro patients can work full time, these patients see the most improvement with any treatment modality. I have been severely ill and can't even work part time. If a bunch of people that are basically living a normal life respond well, doesn't help me to determine if it could be of any help to me. It's still great they are doing these studies, but I wish I knew if they were treating very ill, long term patients or treating patients who are just slightly affected. Hopefully they will do more studies that break down how ill the patients are. That's why my doc said they end up doing with these little studies.

I tried LDN at 2 mg for two days. I didn't sleep at all and since that is a major problem for me, i stopped it. Felt really sick that second day, all speedy and out of it. Might try it again though starting at something much lower like .5 mg if my doc will humor me. I know a few others who tried it and it didn't help them. But, my doc said he had a few patients respond well to it. He also said it is by no means a miracle cure. But, seams worth a try as it's inexpensive and a few people like it.
 

xks201

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The GI doc I see uses it to stimulate the small intestine to cleanse itself of bacteria. He is probably one of the top GI docs in the country. So basically he uses it for SIBO. I am about to try it for that after using his xifaxan prescription for 3 weeks.
 

CallieAndToby

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It increased the levels of all my other meds making me so severely sedated I couldn't get out of bed or even speak a word. I had to decrease all the meds that had taken years to build up. This lasted 3 weeks after getting off LDN and my sleep is still messed up and I am having trouble increasing my meds. Just be warned, LDN can increase your other meds and since I was taking a pile of downers, really messed me up.
 

penny

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It increased the levels of all my other meds making me so severely sedated I couldn't get out of bed or even speak a word. I had to decrease all the meds that had taken years to build up. This lasted 3 weeks after getting off LDN and my sleep is still messed up and I am having trouble increasing my meds. Just be warned, LDN can increase your other meds and since I was taking a pile of downers, really messed me up.
Hi Callie, I'm curious about some of the details of your experience - what your dosage of LDN was, how long you took it and what specific meds you felt it interacted with? That kind of information can be useful for folks thinking about adding LDN or who are currently taking LDN but might be considering adding another medication.

Thanks!
 

Charles555nc

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I am waiting on a disability hearing, and like you, I have severe symptoms and Fibro and CFS, Mouse Girl. I couldnt tolerate LDN at any dose above .5mg for 3months. I even had to start at .5mg every other day for the first two months. I did develop Rosacea and took a 2 month break to calm it down (benedryl and a scoop of baking soda on an empty stomach at bedtime helped alot).

Taking Famvir for 3 months and then starting Valcyte 250mg for a month made taking LDN pretty easy as far as symptoms. When I first started LDN, before the antivirals, I felt like someone hit me all over my body with a baseball bat. Taking melatonin for the immune boost and sleep helps deal with most sleeping issues (benedryl also puts me to sleep). One night I take melatonin, the next night benedryl, so I take a break off each, every other day.

The LDN did cause me to develop Rosacea, but I see it as turning my immune system on, and trying to fight the systemic c pneumonae infection which my previously suppressed immune couldnt handle. 4 or 5 months of LDN and Im only up to 1.5mg a night but I feel better and better and I plan to take it long term.
 

heapsreal

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how would ldn go for me?? im on tramadol slow release for chronic back pain but only use it in the morning and it last 12 hours, so theoretically i would have no tramadol in my system at night when i would take ldn. I would like to see increase in immune function from it as well as pain relief.
 
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There is no "no difference in symptoms" answer on the poll so I clicked "used to take it".

It made no difference to my symptoms.
If I accidently took it at night I couldn't sleep. I took it in the day as told by the doctor and perhaps it made me a teeny weeny bit more alert but really it made no difference to my symptoms.
 

jstefl

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I spent a couple of years taking LDN. I needed to take it in the morning, and never got beyond 2.5 mg a day. I felt a small improvement, but not as much as I was hoping for.

Recently I found a combination of methylation supplements that started doing the job for me. As I started feeling better, I noticed that I was becomming extremely tired during the day. I stopped the LDN, and that feeling went away immediately.

I don't know exactly why, but it is clear to me that when the methylation cycle is working, LDN has a much larger effect than when it is not. I no longer feel the need for lDN, but perhaps the differences in our methylation cycle explain the different results with LDN.

John
 

Lotus97

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I noticed a lot of people in the poll seem to say "it's not nice" in the beginning. Does that go away after a period and then either it starts helping or it doesn't have an effect good or bad? Or do some people continue to experience negative symptoms. I ask because the options in the poll are kind of confusing. After month 3, there isn't an option for experiencing negative symptoms.
 

Sushi

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I noticed a lot of people in the poll seem to say "it's not nice" in the beginning. Does that go away after a period and then either it starts helping or it doesn't have an effect good or bad? Or do some people continue to experience negative symptoms. I ask because the options in the poll are kind of confusing. After month 3, there isn't an option for experiencing negative symptoms.
Here is my experience: With the first dose and every time I raised the dose I had immune activation (symptoms when the immune system goes after something) and temporary insomnia (until I reached about 3 mgs). But, I also had very noticeable good effects from the first day and these increased as the dose increased. So the only difficult symptoms I had were temporary insomnia and "fluish" symptoms with each rise in dose.

Sushi
 

Tristen

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I reacted very horribly to LDN every time I tried it, regardless of the dose. But I also hear reports of it helping many people....and yes, many of them report it was rough in the beginning, and to "go low and slow" to be the answer. I also know (a few) people who tried to stick with it through a rough initial period and ended up in a prolonged crash, one even called it a relapse. I've heard more good than bad reports. Came across some studies on this somewhere.....sorry don't recall where. Sushi may know. For most of us it seems the drug is far from benign, whether ones response is good or bad.

If I had to weigh out all my experiences and self reporting from others I've heard over the years to make a decision on LDN, I would lean towards giving it a try. I may give it another go someday.
 

Lotus97

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I reacted very horribly to LDN every time I tried it, regardless of the dose. But I also hear reports of it helping many people....and yes, many of them report it was rough in the beginning, and to "go low and slow" to be the answer. I also know (a few) people who tried to stick with it through a rough initial period and ended up in a prolonged crash, one even called it a relapse. I've heard more good than bad reports.
Sounds like my experience with methylation to a certain extent.
 

Lotus97

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Here is my experience: With the first dose and every time I raised the dose I had immune activation (symptoms when the immune system goes after something) and temporary insomnia (until I reached about 3 mgs). But, I also had very noticeable good effects from the first day and these increased as the dose increased. So the only difficult symptoms I had were temporary insomnia and "fluish" symptoms with each rise in dose.

Sushi
I think my immune system might already be overactive. For the past 4 months, anything that causes a herx (including probiotics) seems to trigger a depression in me.
 

Thinktank

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I tried LDN last night for the first time @ 1.5mg. It gave me a pleasant feeling after 1 hour or so but it kept me awake until 4.30am!
The insomnia should wear off in a few weeks, so why not use LDN in the morning for the first few weeks until the body is adapted, and then switch to using it at night?