LDN: A potential treatment for certain conditions?

Thanks for bearing with my posts, everyone. My intentions were always good—I just wanted to help out where I could.

melloworca6, thanks for the advice. It's true, I was being a bit much, but there were a lot of misunderstandings (that's on me). For instance, I didn't realize you can't just have medication sent through the mail here in the US; usually, that's how it works in the UK, and especially in America. Every pharmacy I mentioned has a solid reputation (in the USA, Canada, or the UK) and they specialize in shipping meds via mail.

Does any doctor in America even know about this medication? There are hundreds of doctors abroad who are actually well-meaning. That’s why you won't find a single doctor here in the US willing to prescribe it. Then again, maybe Big Pharma has something to do with that too.

Regarding studies and research: the FDA approved Botox for chronic migraines just ten days ago without even needing massive new studies or trials (it was the same deal in the UK about a month ago). They went off patient testimonials because everyone knows Botox is safe and it's been used for ages anyway.

As for the research itself, Big Pharma runs all those studies, then takes them to government agencies for approval. But according to Dr. John Ioannidis and his work, about 90% of these studies are flawed—either things are downplayed or massively exaggerated. A perfect example is Avandia; it was approved after a major study, but now it's considered to be based on fake data. In the US alone, between 50,000 and 200,000 people died from heart disease caused by taking that drug. The first 700 people in America affected by Avandia won a $10 million settlement without the manufacturer ever admitting fault, and now hundreds of thousands more are seeking compensation.

I honestly don't believe LDN will ever get approved because of Big Pharma. Like Chris Steele (a TV Doctor in the UK) says, they would be losing billions of dollars—which means a loss for the drug manufacturers.

Sorry again if I've been annoying, but my intentions are pure.

So, I was talking to my
rheumatologist today about how much LDN might actually help with my Lupus. After he did his little "research" on the drug, his answer was a hard NO. Not even close. He told me straight up that this stuff is strictly for addicts going through withdrawal from alcohol or drugs. I kept pushing, telling him I’d read all about how low doses can be used for Lupus and MS, but he just printed out the standard info on the medication. Nowhere in his papers did it mention anything about tiny doses being effective for Lupus or any of those other conditions where people claim small amounts work wonders. He made it very clear: he refuses to prescribe it because he’s responsible for my care. Honestly, I felt so embarrassed afterward for even bringing it up—like I was trying to play doctor with my own physician. Like melloworca6 said, please don't try anything before checking with your doctor. Our conditions are so sensitive, and one tiny mistake could trigger a massive flare-up, let alone taking unverified meds on your own whim.
After getting totally shut down by my doctor today over this med, I wouldn't even suggest consulting a physician about it. The guy I spoke to was actually reasonable, and he could have easily dropped me as a patient just because I fell for some online hype. And let's be real, this stuff isn't cheap here—a single pack of 28 tablets runs you well over $110.
For heaven's sake, everyone, let's get real here. This isn't like buying socks online; we're talking about medication that can seriously jeopardize a patient's health unless we're talking about detoxing addicts. Plus, that official brochure he handed me didn't say a single word about the side effects being as minimal as people claim on the internet.
I'm not trying to patronize anyone or be rude, I just want to open everyone's eyes. We all grab at straws hoping for a miracle, but we have to be careful.

Ryan Patel64 said:So, I was talking to my
rheumatologist today about how much LDN might actually help with my Lupus. After he did his little "research" on the drug, his answer was a hard NO. Not even close. He told me straight up that this stuff is strictly for addicts going through withdrawal from alcohol or drugs. I kept pushing, telling him I’d read all about how low doses can be used for Lupus and MS, but he just printed out the standard info on the medication. Nowhere in his papers did it mention anything about tiny doses being effective for Lupus or any of those other conditions where people claim small amounts work wonders. He made it very clear: he refuses to prescribe it because he’s responsible for my care. Honestly, I felt so embarrassed afterward for even bringing it up—like I was trying to play doctor with my own physician. Like melloworca6 said, please don't try anything before checking with your doctor. Our conditions are so sensitive, and one tiny mistake could trigger a massive flare-up, let alone taking unverified meds on your own whim.
After getting totally shut down by my doctor today over this med, I wouldn't even suggest consulting a physician about it. The guy I spoke to was actually reasonable, and he could have easily dropped me as a patient just because I fell for some online hype. And let's be real, this stuff isn't cheap here—a single pack of 28 tablets runs you well over $110.
For heaven's sake, everyone, let's get real here. This isn't like buying socks online; we're talking about medication that can seriously jeopardize a patient's health unless we're talking about detoxing addicts. Plus, that official brochure he handed me didn't say a single word about the side effects being as minimal as people claim on the internet.
I'm not trying to patronize anyone or be rude, I just want to open everyone's eyes. We all grab at straws hoping for a miracle, but we have to be careful.

Can you just scan that thing and post it here so we can actually see it? 🙂

Ryan Patel64, thanks for the helpful input on LDN.

Look, obviously you need to talk to a doctor, especially when dealing with something as heavy as lupus. But let's be real—most doctors here in the States don't know the first thing about LDN or how it treats autoimmune issues. Your doctor probably gave you the runaround regarding Naltrexone instead of explaining LDN. It’s obvious Naltrexone isn't the answer for autoimmune stuff; the standard dose is 50mg, while LDN usually tops out at around 4.5mg. They aren't even the same game.

If you've got the energy, try searching "LDN lupus" on Google. There is a ton of info out there in English (you can always use Google Translate if you need to). Plenty of patients swear by it and claim it changed everything for them.

There are actually doctors in the UK and the US who prescribe LDN specifically for lupus.

As for the cost here in the US, that price you saw is definitely for the 50mg tablets, which you have to dilute down to 4.5mg or less. If you go that route, 28 tablets could actually last you a year or more. One American woman—I think she's from Norway—takes LDN for MS and was posting on page 71 of the MS section about how to dilute Naltrexone. From what I gathered, she wants to join public discussions, but she might just hit you up via PM. Otherwise, you can get it from a reputable pharma company in India for about $19 for 10 tablets (50mg), and a good number of people in the West buy it that way.

I still believe in LDN because it has helped so many people. Just be careful, though—don't go rogue and start dosing yourself without supervision. Wishing you nothing but the best with your health. Thanks again.

Ryan Patel64,
The doctor’s response is completely predictable. From both a legal and medical standpoint, they have zero authority to prescribe a medication for an indication where there aren't enough large-scale studies to justify a new approved use for a different disease.
I’ve already spent pages here venting about this exact issue.

My bad, our Norwegian woman doesn't want to jump into any public debates.

wirednomad42 said:Can you just scan that thing and post it here so we can actually see it? 🙂

Man, I feel bad, but this is all in Danish. Plus, I’m pretty tech-illiterate—all I really know how to do is write a post or a message.

I think you could probably check it yourself if you just search for LDN and set the language to Danish.

Honestly, after talking to my doctor and having him flat-out tell me NOT to use anything for lupus, I don't even want to think about asking about meds sold online anymore. It's just not worth the headache.
Look, it's totally fine that you're trying to help someone out by sharing what you've heard works or where to find it from a specific pharma company—hey, if people want to look, let them.

Maybe I'm wrong, but that's just how I am.

Angela Wright said:Ryan Patel64,
The doctor’s response is completely predictable. From both a legal and medical standpoint, they have zero authority to prescribe a medication for an indication where there aren't enough large-scale studies to justify a new approved use for a different disease.
I’ve already spent pages here venting about this exact issue.

Thanks, Angela Wright. I realize now you were just trying to help and wanted to open my eyes, just like I did. I guess I might have believed it at first too—secretly hoping it would work, even if I was being cautious until I could talk to my rheumatologist. He's the one I actually trust with my life.

urbanorca said:Ryan Patel64, thanks for the helpful input on LDN.

Look, obviously you need to talk to a doctor, especially when dealing with something as heavy as lupus. But let's be real—most doctors here in the States don't know the first thing about LDN or how it treats autoimmune issues. Your doctor probably gave you the runaround regarding Naltrexone instead of explaining LDN. It’s obvious Naltrexone isn't the answer for autoimmune stuff; the standard dose is 50mg, while LDN usually tops out at around 4.5mg. They aren't even the same game.

If you've got the energy, try searching "LDN lupus" on Google. There is a ton of info out there in English (you can always use Google Translate if you need to). Plenty of patients swear by it and claim it changed everything for them.

There are actually doctors in the UK and the US who prescribe LDN specifically for lupus.

As for the cost here in the US, that price you saw is definitely for the 50mg tablets, which you have to dilute down to 4.5mg or less. If you go that route, 28 tablets could actually last you a year or more. One American woman—I think she's from Norway—takes LDN for MS and was posting on page 71 of the MS section about how to dilute Naltrexone. From what I gathered, she wants to join public discussions, but she might just hit you up via PM. Otherwise, you can get it from a reputable pharma company in India for about $19 for 10 tablets (50mg), and a good number of people in the West buy it that way.

I still believe in LDN because it has helped so many people. Just be careful, though—don't go rogue and start dosing yourself without supervision. Wishing you nothing but the best with your health. Thanks again.

Thanks for trying to convince me, but honestly, whether we're talking about LDN or Naltrexone, I'm just not interested. I'm not taking it. To be fair, I didn't even bother asking my doctors here in the States—I actually reached out to specialists in Denmark instead. But look, does it even matter? Everywhere in the world, Lupus is treated with corticosteroids or Imural, or some other drug from that cytostatic group. Most people end up on Imural, but I’m not going to play philosopher here. The bottom line is I have zero intention of using that stuff, let alone diluting it. Thanks FOREVER!
That’s just my two cents on the whole lupus situation. If someone else wants to go a different route? Hey, go for it! At the end of the day, everyone has the right to call their own shots and live their life exactly how they see fit.
Look, I wasn't trying to start some big debate or jump into anyone's business. Honestly? I just wanted to open everyone's eyes after my talk with the doctor and share exactly what was said to me.
Everything was honestly coming from a good place. Look, when you're the one living with the illness, you know exactly what's at stake when you take the wrong thing. You get it. But at the same time, don't we all just want to believe anything if it means finally feeling better? It's so easy to get swept up in that hope, right?

Ryan Patel64, I totally get where you're coming from. Sending nothing but good vibes for your health.

Look, sorry if I can't go all out here, but I don't trust doctors 100%. Not after what I went through. A few years back, they put me on this famous statin, and man, it caused me nothing but trouble. Then, wouldn't you know it? I find out later the drug was actually banned because it was linked to over a hundred thousand deaths.

urbanorca said:Ryan Patel64, I totally get where you're coming from. Sending nothing but good vibes for your health.

Look, sorry if I can't go all out here, but I don't trust doctors 100%. Not after what I went through. A few years back, they put me on this famous statin, and man, it caused me nothing but trouble. Then, wouldn't you know it? I find out later the drug was actually banned because it was linked to over a hundred thousand deaths.

Thanks for the well wishes. Look, I've definitely dealt with medical mistakes too—doctors aren't perfect, and they mess up sometimes. But at the end of the day, I’d still rather trust them than go buying random stuff online. You know how it is—someone claims a product is a "cure" for lupus, but it hasn't even been vetted by the FDA or any actual authorities. Why risk it?

Once again, thanks for the kind thoughts about my health.

Ryan Patel64, sorry, it’s me again. I know, I know—I’m probably driving everyone crazy by now.

But this whole online thing is really bugging me. You see these massive, household-name pharmacies in the US and the UK selling this stuff, but they strictly require a prescription because, you know, they actually want to follow the law. Take Skips Pharmacy in Boca Raton, Florida, for example—one of the big names. Someone living in Los Angeles isn't exactly going to hop on a plane to Florida just to pick up a bottle of meds. No, they send over the prescription first, and then everything gets handled online.

Then you've got the situation with India. They ship without a prescription, and since it’s way cheaper—according to what people are saying on the LDN forums—lots of folks from the US, the UK, and elsewhere end up ordering from one of those massive Indian generic pharma giants. It's even gotten to the point where some Western pharmacies buy bulk supplies from India (like 50 grams at a time), then dilute it themselves to make specific 3mg or 4.5mg capsules.

Look, obviously, the gold standard is getting treatment with proper medical advice and doctor support.

Just one question for the group: did your doctor actually give you any real info regarding Naltrexone or LDN? Because let’s be honest, there is a massive difference between the two.

urbanorca said:Ryan Patel64, sorry, it’s me again. I know, I know—I’m probably driving everyone crazy by now.

But this whole online thing is really bugging me. You see these massive, household-name pharmacies in the US and the UK selling this stuff, but they strictly require a prescription because, you know, they actually want to follow the law. Take Skips Pharmacy in Boca Raton, Florida, for example—one of the big names. Someone living in Los Angeles isn't exactly going to hop on a plane to Florida just to pick up a bottle of meds. No, they send over the prescription first, and then everything gets handled online.

Then you've got the situation with India. They ship without a prescription, and since it’s way cheaper—according to what people are saying on the LDN forums—lots of folks from the US, the UK, and elsewhere end up ordering from one of those massive Indian generic pharma giants. It's even gotten to the point where some Western pharmacies buy bulk supplies from India (like 50 grams at a time), then dilute it themselves to make specific 3mg or 4.5mg capsules.

Look, obviously, the gold standard is getting treatment with proper medical advice and doctor support.

Just one question for the group: did your doctor actually give you any real info regarding Naltrexone or LDN? Because let’s be honest, there is a massive difference between the two.

My doctor gave me the rundown on LDN (Low Dose Naltrexone), and yeah, I get it—it's basically just a super diluted version of Naltrexone. But honestly, who can actually guarantee you're getting those exact micro-doses? To quote my doctor directly: "Absolutely not. This isn't a treatment for lupus, and I refuse to write a prescription for it because I'm responsible for my patients' care." I hope I'm being clear this time. Please, stop questioning me, and please don't use my name to try and sell or promote these online suppliers. I don't want any part of that. Sorry, but I just don't have the energy to keep repeating myself. I'm dealing with enough health issues as it is, and arguing about this just stresses me out—which is the last thing I need, since stress is strictly off-limits for my condition. I can't risk making things worse.
With all due respect, I hope that answers everything. I'm done discussing this with you since we clearly see things differently.

Even if it's a different medication being sold online, no matter how "proven" people claim it is, I wouldn't touch it.
Best,

Ryan Patel64, sorry for bugging you. I can see you're going through a rough patch right now, so seriously, don't even bother replying to this thread. You’ve got way bigger fish to fry than my comments. Honestly, I wasn't even going to say another word about LDN if you hadn't posted that message.

Sending you nothing but the best for your health.

As for everyone else out there: you won't find much negative press about it. There are studies on LDN—well, at least some available in English. On the flip side, there’s a ton of coverage, newspaper articles, and even TV segments touting LDN as a successful treatment. I won't dump a bunch of links here right now; I don't want to annoy you guys.

It really comes down to the individual. In America, if nobody believes in it? Fine by me.

The only reason I started this thread is because it drives me absolutely insane that Americans are one of the sickest nations in the West, yet we're among the highest consumers of medication. You can check the data in the US news if you don't believe me.

It’s honestly terrible. But nobody seems to want to comment on it, and frankly, it looks like nobody even cares.

urbanorca said:As for everyone else out there: you won't find much negative press about it. There are studies on LDN—well, at least some available in English. On the flip side, there’s a ton of coverage, newspaper articles, and even TV segments touting LDN as a successful treatment. I won't dump a bunch of links here right now; I don't want to annoy you guys.

It really comes down to the individual. In America, if nobody believes in it? Fine by me.

The only reason I started this thread is because it drives me absolutely insane that Americans are one of the sickest nations in the West, yet we're among the highest consumers of medication. You can check the data in the US news if you don't believe me.

It’s honestly terrible. But nobody seems to want to comment on it, and frankly, it looks like nobody even cares.

Dear sir/madam,

Many of us don't live in the States anymore; we've lived in Western countries, so we aren't totally in the dark regarding the health status of other nations or how their healthcare systems function. In my opinion (and having lived in the UK), Americans are a much sicker nation due to lifestyle choices, poor diets, terrible weather, and so on.

I am asking you, please, provide a link showing that LDN has been tested and scientifically proven to help with the specific conditions you claim it treats. Where were these studies published? Which medical journals? If you don't have access to the full papers, at least show us the abstracts!

If there is no scientific, peer-reviewed evidence for this "cure," then I believe there is no point in continuing this debate.

Relying on random websites that write about this "medicine" is incredibly irresponsible. After all, anything goes on the internet, just as easily as anything can be printed on paper.🙂 😉

Someone mentioned earlier—maybe even you, I'm not entirely sure—that this drug isn't recognized simply because it's cheap and Big Pharma has no interest in pushing it. Forgive me, but Pronison is also an extremely inexpensive drug, yet it is still widely used to treat autoimmune diseases.

"Some doctors in the UK and the US prescribe LDN for lupus."

Then please, give me the names of these doctors and tell me where they practice in the UK if they are prescribing this to lupus patients. I spent years receiving treatment in the UK, and they were so strict they would practically count out my antibiotics one by one to ensure I didn't end up with a single leftover pill, let alone prescribe something like this without a solid scientific foundation!

Best regards!

amberhawk, thanks, but I honestly don't know if there's even any point in replying to your post.
You're talking about one thing, I'm talking about another—just like everyone else here in the States. I'm just wasting my breath!

I highly doubt anyone has actually clicked the links I already dropped on this forum. But fine, here we go again.

First off, regarding disease rates in America: you can find the data in the news or through reports from international organizations (maybe you can dig that up yourself? Check Google News or the New York Times; sorry, I don't have the energy to do your homework for you. Between the LDN and this forum, I've had enough—why am I wasting my time here?)

Since you clearly know more about the UK than I do, and I've been living here for nearly 50 years, I guess I must be clueless. There's no point arguing about it.

As for doctors over in the UK: Dr. Tom Gilhooly in Glasgow prescribes LDN and actually believes in it. Here’s his site:
http://tomgilhooly.com/

You'll have to ask him yourself if he'd write you a prescription for lupus.

Over here in the US, there are a few heavy hitters, like Whittaker and his famous Wellness Center in Newport Beach, California.

The most well-known doctor for LDN was Dr. Bihari in New York (he passed away last year), who spent years treating lupus with LDN. Now, his assistant, Dr. Zagon, handles it:

http://www.digitalnaturopath.com/treat/T74481.

There are other links out there, but I'm too exhausted to hunt them down right now.

You can find some smaller studies, but the big ones? They aren't coming, and they never will (at least, that's what a lot of people think), all because of the influence of Big Pharma.

You can find some of the studies on your own; I've shared links before.

This is the link to the most important LDN organization in the world, so why don't you ask them?

http://www.lowdosenaltrexone.org/

Regarding the comparison between Pronison and LDN—I haven't seen Pronison getting nearly as much praise as LDN. Let's be real, Pronison comes with a massive list of serious side effects.

What finally sold me on LDN being useful for various autoimmune diseases was when that famous British TV Doctor, Chris Steele (you probably know him?), made a public plea. He said the NHS could save billions—not millions!—if they were actually allowed to use LDN.

Anyway, I regret starting this thread. I had the best intentions—none of this was for personal gain—but I'm just spinning my wheels.

urbanorca said:amberhawk, thanks, but I honestly don't know if there's even any point in replying to your post.
You're talking about one thing, I'm talking about another—just like everyone else here in the States. I'm just wasting my breath!

I highly doubt anyone has actually clicked the links I already dropped on this forum. But fine, here we go again.

First off, regarding disease rates in America: you can find the data in the news or through reports from international organizations (maybe you can dig that up yourself? Check Google News or the New York Times; sorry, I don't have the energy to do your homework for you. Between the LDN and this forum, I've had enough—why am I wasting my time here?)

Since you clearly know more about the UK than I do, and I've been living here for nearly 50 years, I guess I must be clueless. There's no point arguing about it.

As for doctors over in the UK: Dr. Tom Gilhooly in Glasgow prescribes LDN and actually believes in it. Here’s his site:
http://tomgilhooly.com/

You'll have to ask him yourself if he'd write you a prescription for lupus.

Over here in the US, there are a few heavy hitters, like Whittaker and his famous Wellness Center in Newport Beach, California.

The most well-known doctor for LDN was Dr. Bihari in New York (he passed away last year), who spent years treating lupus with LDN. Now, his assistant, Dr. Zagon, handles it:

http://www.digitalnaturopath.com/treat/T74481.

There are other links out there, but I'm too exhausted to hunt them down right now.

You can find some smaller studies, but the big ones? They aren't coming, and they never will (at least, that's what a lot of people think), all because of the influence of Big Pharma.

You can find some of the studies on your own; I've shared links before.

This is the link to the most important LDN organization in the world, so why don't you ask them?

http://www.lowdosenaltrexone.org/

Regarding the comparison between Pronison and LDN—I haven't seen Pronison getting nearly as much praise as LDN. Let's be real, Pronison comes with a massive list of serious side effects.

What finally sold me on LDN being useful for various autoimmune diseases was when that famous British TV Doctor, Chris Steele (you probably know him?), made a public plea. He said the NHS could save billions—not millions!—if they were actually allowed to use LDN.

Anyway, I regret starting this thread. I had the best intentions—none of this was for personal gain—but I'm just spinning my wheels.

Sir,

It seems it might actually be "the other way around"—we are the ones wasting our time with you, because you refuse to listen to a single thing being pointed out to you. I have to admit, I am completely disillusioned, and this post only confirms my suspicion that you don't actually understand the subject you claim to represent.

The links you provide are completely unsubstantiated. Claiming something is true based solely on news articles without any scientific proof is utterly nonsensical! And I can't even begin to ignore your condescending tone, whether you're referring to "unreasonable Americans" or belittling me for suggesting I don't know how life works in the UK, simply because I haven't spent 50 years there like you have!

The links you're posting don't support your claims at all! For instance, you cite:

http://tomgilhooly.com/

On this site, you can't conclude anything whatsoever about this doctor's actual work or commitment to LDN (let alone your assertion that he prescribes it specifically for MS patients!!).

Next link:
http://www.lowdosenaltrexone.org/

If you had bothered to actually read the "research" you keep pointing me toward—and I truly hope the English language isn't a barrier for someone who’s supposedly lived there for fifty years—you would have noticed that the studies out of San Francisco suggest that while LDN might offer some marginal help regarding the mental state of MS patients, they showed virtually zero results when it comes to actual physical functioning.

If you possessed even a basic understanding of what living with MS actually entails, these results wouldn't surprise you. But given your level of insight, I realize there’s really no point in debating this further.

And finally:

"Regarding the comparison between Pronison and LDN, I haven't seen Pronison getting nearly as much praise as LDN. Pronison has quite a few serious side effects."

That specific sentence completely clinches it for me. It's become abundantly clear that you don't have the slightest clue what you're talking about, whether it's autoimmune diseases or the very subject you're so aggressively trying to push here. Therefore, I'm concluding this conversation right now.

Look, Pronison (or Prednisolone) remains the gold standard for treating lupus and other autoimmune conditions, and as for LDN, frankly, you aren't in any position to offer an opinion on it.

That's all from me. Cheers!

Awesome, thanks everyone!

@Samuel Morgan40, I can't just sit here and stay silent about these studies. GlaxoSmithKline spent years pushing Avandia, even though they lied through their teeth—we're talking around 200,000 deaths in the US alone because of that drug. They think 90% of these studies aren't even accurate, according to research by John Ioannidis. Big Pharma knows exactly what they're doing. Just look at the US recently banning three obesity drugs that were actually approved after massive clinical trials. How does that happen?

@amberhawk, I've changed my mind. LDN is nothing. Just forget the whole thing, please.