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LDN: A potential treatment for certain conditions?

Started by urbanorca · · 👁 6 views · 101 replies

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Participants urbanorcaAngela WrightEthan Reed2melloworca6Scott Allen10wirednomad42jadesailor14wiredlynx33Lawrence Castillo2slysurfer14amberhawkfadedmarlin402Ryan Patel64Samuel Morgan40
urbanorca urbanorca MemberOP
48 messages
joined Jan 2012
#1 ·
I’m living in the United Kingdom, I'm 70, fully retired, and honestly, I just want to be useful to people as much as possible.

On top of everything else (and there's plenty, like how we promote US tourism through www.visit-usa.com), I also run a health blog www.healthinfo.blogspot.com.

While digging around the web for my blog about two weeks ago, I stumbled upon this absolute game-changer called LDN (low dose naltrexone). It’s helping folks dealing with multiple sclerosis, Crohn, colitis, lupus—basically all sorts of autoimmune issues, and even some cancer cases.

I’ve dropped a few posts on this forum already (specifically in the Chron and colitis sections), but I was shocked to see how little interest there is here in the States. Meanwhile, reading what patients in the US and elsewhere are saying, the results sound incredible, there are virtually no side effects, and since the patent expired, it's dirt cheap.

Just to be clear, I have zero connection to this drug—I don't sell it, and I don't need it myself. So now I'm wondering if I should even bother spending more time researching this if nobody in America cares. I've already sunk over 20 hours into it. It feels like a waste, IMO. Maybe I should move on to something else.

I really think more people ought to just Google "LDN" and see the benefits for themselves. Most of the good info, websites, and forums are in English anyway.

By the way, the main site is http://www.lowdosenaltrexone.org/

Sorry if I'm being a nuisance!
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2 ·
I took a deep dive into what’s currently published onPubMed. For the most part, the data shows the drug isn't toxic, and there are some promising signs that it actually boosts quality of life for patients. However, there's a catch—every single study includes the same disclaimer: we still need much more rigorous testing and development before we can claim any definitive, concrete results.
urbanorca urbanorca MemberOP
48 messages
joined Jan 2012
#3 ·
Angela Wright, look, I’ve gone through the studies myself, plus over a hundred patient testimonials. There are tons of positive results out there.
Ethan Reed2 Ethan Reed2 Newcomer
5 messages
joined Oct 2010
#4 ·
urbanorca said:Angela Wright, look, I’ve gone through the studies myself, plus over a hundred patient testimonials. There are tons of positive results out there.

I’ve been reading about this on various forums for quite a while now, and people seem to have great experiences. Even those who went through surgery to "get rid of it" mention they stopped all their other treatments but stuck with LDN, and they feel significantly better.
Now, here's my question for you... how does one actually get a hold of it? How do you track down this medication?
Not long ago, I ordered some vitamin supplements online from the US, and when they hit customs, things got messy. If I hadn't been so persistent, they would've just sent them right back to the sender. And those were just vitamins—imagine the headache if we were talking about actual prescription drugs. It was the same story when I was using Enkorten... I had to basically smuggle it across the border. Same with Prokarin. So, the big question remains: how?🤷
You mentioned being surprised by the lack of interest... Honestly, I used to feel the same way, but I've grown used to it. 🤷 Most people are pretty indifferent; they just stick to whatever their doctor tells them without doing any research or looking into anything themselves.
There are others, of course—people willing to try anything just to feel better—but they're definitely in the minority.
Thanks, truly, for taking an interest and contributing to a group of people you aren't even connected to. Some of us actually appreciate it. 👍
urbanorca urbanorca MemberOP
48 messages
joined Jan 2012
#5 ·
Quick reply yesterday, and I’m typing this on my iPad, so excuse any typos!

Your take on LDN honestly caught me off guard—you seem pretty negative about it. If you just look at the main website, there are like 5 or 6 studies proving how useful LDN is, and they're coming from top-tier USA universities. Plus, there are links to segments on major US networks like CBS and ABC that all say positive things about it (check the link in my first post).

Reading through this forum makes me feel sick. So many people here are suffering from all sorts of illnesses, yet it feels like almost nobody in America is actually interested in looking into real options. Everyone would rather run to some fringe healer like Torabi. I truly believe LDN could help them, especially since it's cheap and doesn't have side effects.

I actually help out an LDN organization over here in the United Kingdom. People here seem to take things more seriously; they don't just fall for every fake healer.

The organization even sent me an address where you can get the medication without a prescription:

https://www.alldaychemist.com/249_Depade-50mg

It's based in Cyprus. For LDN, it's only $16.80 for a four-month supply (shipping probably costs a bit extra). People from the United Kingdom and all over the world order from here.
urbanorca urbanorca MemberOP
48 messages
joined Jan 2012
#6 ·
Ethan Reed2, thanks to you too, just caught your post.

My address is on my latest post. If there's anything I can do to help, just let me know.
Ethan Reed2 Ethan Reed2 Newcomer
5 messages
joined Oct 2010
#7 ·
Angela Wright said:I took a deep dive into what’s currently published onPubMed. For the most part, the data shows the drug isn't toxic, and there are some promising signs that it actually boosts quality of life for patients. However, there's a catch—every single study includes the same disclaimer: we still need much more rigorous testing and development before we can claim any definitive, concrete results.

That’s just how it works whenever something is actually effective and affordable. The priority is always pushing expensive drugs to line the pockets of doctors and big pharma.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#8 ·
Ethan Reed2 said:That’s just how it works whenever something is actually effective and affordable. The priority is always pushing expensive drugs to line the pockets of doctors and big pharma.

Not necessarily. You have these tiny pharmaceutical outfits that don't have massive capital to burn on endless clinical trials; usually, those are the exact players cooking up the most innovative "smart" compounds and combinations.
To actually prove something works beyond a shadow of a doubt and secure that "evidence-based" stamp of approval, you have to run trials on a massive scale—and science, not Big Pharma, is what dictates that process. In fact, Big Pharma would much rather see the opposite happen.
So, looking at the preliminary data, there is evidence this drug works for certain conditions and isn't toxic, but I wouldn't go labeling it a "miracle cure" just yet.
Ethan Reed2 Ethan Reed2 Newcomer
5 messages
joined Oct 2010
#9 ·
Angela Wright said:Not necessarily. You have these tiny pharmaceutical outfits that don't have massive capital to burn on endless clinical trials; usually, those are the exact players cooking up the most innovative "smart" compounds and combinations.
To actually prove something works beyond a shadow of a doubt and secure that "evidence-based" stamp of approval, you have to run trials on a massive scale—and science, not Big Pharma, is what dictates that process. In fact, Big Pharma would much rather see the opposite happen.
So, looking at the preliminary data, there is evidence this drug works for certain conditions and isn't toxic, but I wouldn't go labeling it a "miracle cure" just yet.

You've got a point, and I wouldn't label it a "miracle" either, but waiting for absolute proof that something works...🤷. Which drug are you referring to that you know for a fact works unequivocally? I live with MS, and I can't think of a single drug that fits that description. It’s a different story when you consider that giant pharmaceutical corporations can fund trials for THEIR own drugs for years and then potentially "massage" the results before going public... claiming their drugs are amazing and so on. Sometimes patients just don't have the luxury of waiting for the conclusion of endless studies that haven't been officially recognized yet. They just want to feel better... I don't see what's wrong with that.
urbanorca urbanorca MemberOP
48 messages
joined Jan 2012
#10 ·
Ethan Reed2, there are literally hundreds of testimonials floating around the internet from MS patients who swear this drug changed their lives. People call it a "miracle cure," and even some TV shows have featured it.

Angela Wright, I’ve gotta say, your negativity caught me off guard. Why all the skepticism? Look, a massive American corporation originally patented the drug, but since the patent expired, anyone can make it now. The biggest supplier out there is Intas Pharmaceuticals, which is huge in the generic drug game.
urbanorca urbanorca MemberOP
48 messages
joined Jan 2012
#11 ·
Igor88 posted this over in the colitis section:

Just wanted to give a heads-up to anyone looking into LDN. I swung by the pharmacy today to poke around and see what the deal was. So, the drug is available here in the States, which is a win, but there's a catch—it’s also used to treat addiction. Apparently, you can get it via a special double prescription or something along those lines... anyway, long story short, a specialist has to prescribe it. For what exact purpose? Honestly, I have no clue yet. I need to sit down with my doctor and hash it out. As soon as I dig up more info, I'll let you guys know. Bottom line: you can get your hands on it, but it’s going to be a massive headache to navigate... and yeah, for addiction, they dose it at 50mg, while for colitis or Crohn's, it's only 4mg. That's a huge gap.
melloworca6 melloworca6 Regular
551 messages
joined May 2010
#12 ·
I'm actually planning to bring this up with an immunologist, though I'm half-expecting them to tear me apart for asking. 🙂
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#13 ·
Ethan Reed2 said:You've got a point, and I wouldn't label it a "miracle" either, but waiting for absolute proof that something works...🤷. Which drug are you referring to that you know for a fact works unequivocally? I live with MS, and I can't think of a single drug that fits that description. It’s a different story when you consider that giant pharmaceutical corporations can fund trials for THEIR own drugs for years and then potentially "massage" the results before going public... claiming their drugs are amazing and so on. Sometimes patients just don't have the luxury of waiting for the conclusion of endless studies that haven't been officially recognized yet. They just want to feel better... I don't see what's wrong with that.

I completely hear you and I agree. But there's a massive gap between our personal desires and the regulatory frameworks in place. Those rules didn't just pop up out of nowhere; they were built on very specific scientific, medical, financial, moral, and ethical foundations. However, when dealing with progressive and debilitating conditions—especially rare diseases (which is my area of focus regarding rare tumors)—we desperately need a better approach to drug development. People simply don't have ten years to wait for a study to reach "evidence-based" status. Major international organizations representing both doctors and patients are actually lobbying hard, organizing massive summits where all stakeholders—patients, physicians, scientists, Big Pharma, and lawmakers—sit at the same table. The goal is to find common ground to break through this bottleneck and create a new way forward for managing these complex illnesses.
urbanorca said:Ethan Reed2, there are literally hundreds of testimonials floating around the internet from MS patients who swear this drug changed their lives. People call it a "miracle cure," and even some TV shows have featured it.

Angela Wright, I’ve gotta say, your negativity caught me off guard. Why all the skepticism? Look, a massive American corporation originally patented the drug, but since the patent expired, anyone can make it now. The biggest supplier out there is Intas Pharmaceuticals, which is huge in the generic drug game.

I really don't see why you're painting me as negative.🤷
I am simply presenting the data I've found and the facts as I know them. I'm not responsible for the fact that research policy operates the way it does.
As for the "miracle" label, I stay away from that kind of hype. In my experience, whenever someone starts using the word "miracle," there's usually a scam hiding right behind it. This isn't a scam, but calling something a miracle and relying on the anecdotes of anonymous people is just irresponsible—especially when we're talking about serious, life-threatening diseases. That is exactly why rigorous, controlled clinical trials exist; those are the only data points that actually matter. Whether something is truly effective or "miraculous" can only be determined by what can be indisputably proven.
That is the reality of the situation, and it has nothing to do with my personal feelings or anyone else's subjective take on the matter.
I’m really hoping these clinical trials kick off as soon as possible and recruit everyone who's interested. If they can pull that off, it would essentially make the treatment free and accessible to anyone who needs it, while simultaneously providing the kind of hard data required to refine and perfect the drug for the future.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#14 ·
urbanorca said:Igor88 posted this over in the colitis section:

Just wanted to give a heads-up to anyone looking into LDN. I swung by the pharmacy today to poke around and see what the deal was. So, the drug is available here in the States, which is a win, but there's a catch—it’s also used to treat addiction. Apparently, you can get it via a special double prescription or something along those lines... anyway, long story short, a specialist has to prescribe it. For what exact purpose? Honestly, I have no clue yet. I need to sit down with my doctor and hash it out. As soon as I dig up more info, I'll let you guys know. Bottom line: you can get your hands on it, but it’s going to be a massive headache to navigate... and yeah, for addiction, they dose it at 50mg, while for colitis or Crohn's, it's only 4mg. That's a huge gap.

If a drug isn't officially registered in the US for your specific diagnosis—which requires a pharmaceutical company to trigger the registration process at a high cost—your chances of getting it via prescription are virtually zero. People battling cancer face this exact wall every single day, especially those with rare tumors. Even if the EMEA has cleared the drug for use across Europe and there are plenty of studies proving it actually works, the red tape remains.
Without clinical studies explicitly defining the dosage and administration for your condition, trying to fight the American healthcare system to get your medication covered is an impossible task.
melloworca6 melloworca6 Regular
551 messages
joined May 2010
#15 ·
Angela Wright said:If a drug isn't officially registered in the US for your specific diagnosis—which requires a pharmaceutical company to trigger the registration process at a high cost—your chances of getting it via prescription are virtually zero. People battling cancer face this exact wall every single day, especially those with rare tumors. Even if the EMEA has cleared the drug for use across Europe and there are plenty of studies proving it actually works, the red tape remains.
Without clinical studies explicitly defining the dosage and administration for your condition, trying to fight the American healthcare system to get your medication covered is an impossible task.

Are we talking about the pharmacy or the doctor?

Because hypothetically, if I track down an immunologist willing to write the script, what's the pharmacist going to do? Give me grief? Just asking.🙂
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#16 ·
melloworca6 said:Are we talking about the pharmacy or the doctor?

Because hypothetically, if I track down an immunologist willing to write the script, what's the pharmacist going to do? Give me grief? Just asking.🙂

You need a prescription from a doctor; you can't just walk in and buy this stuff over the counter. If you see someone in private practice, they might write you a private script, but since we're dealing with something used to treat addiction... well, I don't know, maybe try asking.
If you're trying to get it through a hospital system, there's zero chance unless you're officially cleared for that specific indication.
melloworca6 melloworca6 Regular
551 messages
joined May 2010
#17 ·
So, here’s how I see the situation in America: let’s say this drug is being used overseas to treat autoimmune diseases (hypothetically speaking, of course). Does that mean we can't get our hands on it here in the States for autoimmune issues just because the FDA only approves it for addiction treatment?

Does that logic apply to every single medication?

I’m honestly just trying to wrap my head around how this whole American healthcare system works, which is why I have so many questions. 🙂
urbanorca urbanorca MemberOP
48 messages
joined Jan 2012
#18 ·
Angela Wright, look, these aren't just some random anonymous trolls claiming LDN works. There are plenty of people out there who have put their actual names on the line to back this up. Plus, like I mentioned before, we’ve got four major universities right here in the States that have run the studies and reached the same conclusion: LDN is legit and provides massive help for certain conditions, especially autoimmune stuff.

You can find all their research online if you actually bother to look.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#19 ·
melloworca6 said:So, here’s how I see the situation in America: let’s say this drug is being used overseas to treat autoimmune diseases (hypothetically speaking, of course). Does that mean we can't get our hands on it here in the States for autoimmune issues just because the FDA only approves it for addiction treatment?

Does that logic apply to every single medication?

I’m honestly just trying to wrap my head around how this whole American healthcare system works, which is why I have so many questions. 🙂

The only exception is compassionate use—cases where someone's life is on the line, which requires approval from a medical board. In those instances, everything has to go through the hospital, and you're hit with sales tax and customs duties, often dragging the whole process out for months. It gets even more absurd when a pharmaceutical company tries to donate a drug; they actually have to pay the sales tax just to get it to the patient. Price isn't even the main issue there; imagine being a patient who needs an incredibly expensive medication—we're talking upwards of $0.00 per dose—and then the pharma company has to shell out all that extra tax on top of it. You can probably guess how much "charity" those companies feel like showing toward sick people in this country.

If a drug isn't approved for a specific indication, getting your hands on it in the US is nearly impossible.

Yeah, that's the brutal reality.😳
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#20 ·
urbanorca said:Angela Wright, look, these aren't just some random anonymous trolls claiming LDN works. There are plenty of people out there who have put their actual names on the line to back this up. Plus, like I mentioned before, we’ve got four major universities right here in the States that have run the studies and reached the same conclusion: LDN is legit and provides massive help for certain conditions, especially autoimmune stuff.

You can find all their research online if you actually bother to look.

Look, I could step up right here, put my full legal name on the line, and tell you that I beat my endometriosis using nothing but apple compote. But obviously, an anecdote isn't enough to be taken seriously or to justify treating millions of women that way. We need hard, concrete evidence, and that can only come through rigorous studies—and we need a massive volume of them before this kind of treatment becomes standard medical practice.
The trials you’re bringing up, unfortunately, simply don't provide enough certainty to eliminate all doubt when determining if a drug should be used in clinical settings. It’s a shame if you can't view this as a cold, hard fact rather than just my personal skepticism.
I think I've made my position crystal clear.

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