Posts by amberhawk

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!

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!

Nicholas Castillo17 said:amberhawk, thanks a million, you really helped calm my nerves because honestly, the thought of taking this makes me terrified... and since the only foolproof way to avoid getting pregnant is to stop having sex altogether—which would basically give my husband a nervous breakdown—I'm stuck... thanks again though! Wishing you a smooth, happy pregnancy, enjoy every second, there's nothing quite like that first one...

Ivy,

Thanks for the kind wishes. I completely get where you're coming from; my husband and I were trying to conceive while I was still on my medication, and my cycles are incredibly irregular—roughly every 45 days! 🙂, I was religiously using pregnancy tests every single month just to make sure I wasn't pregnant, purely to minimize any potential harm to a baby. But that one time when I actually did conceive? I didn't even bother with a test. Honestly, it was only because I felt so incredibly sick that I finally realized what was happening. 🙂

irontrucker9 said:Thanks, Angela Wright, I tried Googling the whole thing myself but came up totally empty...
Thanks for the number, by the way.
It’s honestly so weird to me that the doctors at the hospital haven't even heard of this stuff.
On Tuesday, I’m making the trip from my place out to Washington, D.C. to see the specialist who originally prescribed her treatment.
I really want to get as many expert opinions as possible. I'm not looking to play games with my health, you know?
Thanks again

irontrucker9,

OB-GYNs aren't exactly specialists when it comes to these specific medications, but the second I found out I was pregnant, I called my neurologist immediately. I told her I had stopped taking the meds because of the pregnancy, and she gave me the green light to move forward. She actually told me that being pregnant might be a blessing for managing my condition, and she warned me not to let it even cross my mind to stop the treatment mid-stream!!! 😉, and assured me that the medication wouldn't cause any harm to the baby.

Listen,

I’m quite familiar with Lyrica; I used it years ago for trigeminal neuralgia, and then again earlier this year for polyneuropathy.

Back at the beginning of June, I found myself pregnant while on a triple therapy regimen involving some pretty heavy-hitting medications—corticosteroids, an antimalarial, and Tegretol. Now, Tegretol falls into that same neurological category as Lyrica; to put it simply, Lyrica is the newer player on the block, whereas Tegretol is one of those older, established drugs, but they both sit in that same bucket of anticonvulsants used for neuropathic pain and such.

I was actually taking Lyrica before I switched over to Tegretol, and frankly, I couldn't stomach the Lyrica at all. The side effects were absolutely brutal, and I just couldn't deal with them!

I kept taking all of these medications until I was about five or six weeks pregnant—not that I even knew I was pregnant at the time—when, much like what happened with your wife, I ended up being rushed to the ER because of severe abdominal pains.

Fast forward to now: I’m currently in my sixth month of pregnancy. I’ve been getting regular checkups and have completed every single test the doctors ordered (which was quite a lot, given my underlying condition, the stomach issues, and the cocktail of meds I was on). An amniocentesis confirmed that I’m carrying a perfectly healthy little girl 🙂, and if it helps ease your mind, I’m 38 years old and this is my first pregnancy! 🙂

To be honest, I was so terrified when I realized I was pregnant that I stopped taking my medications cold turkey overnight. In doing so, I actually put myself at even greater risk, because you aren't supposed to just quit drugs like Tegretol, Lyrica, or corticosteroids abruptly; they really should be tapered off gradually. Fortunately, there weren't any complications, and my body seemed to handle the sudden stop surprisingly well. Based on what my doctors told me, I could have continued tapering them off without any issues, which suggests they might not be as devastating to a pregnancy as one might fear.

In my humble opinion, there shouldn't be any lasting consequences for the baby. I had my own moments of intense anxiety about it, but from the very start, the doctors insisted there shouldn't be any problems. I truly hope that sharing my experience offers you even a small amount of comfort.

Best of luck!

urbanorca said:Hey everyone. Thanks, wiredlynx33. I'm feeling pretty wiped today (9.3 miles was out at the bar last night). This might actually be useful for some of you—just some info I picked up from CVS in Canada. It turns out Naltrexone goes by different brand names depending on where you are in the world:

Nalorex (manufactured by Bristol-Myers-Squibb)

Nodict (manufactured by Sun Pharma)

Naltima (manufactured by INTAS)

Narpan (manufactured by Duopharma)

Antaxone (manufactured by Pharmazam)

Celupan (manufactured by Narconics)

Narcoral (manufactured by Siton)

Nemexin, Revez, Naltrexona, and Naltrexonum (manufactured by Bristol-Myers-Squibb)

But look, do your own homework. Don't just take my word for it; go out there and research everything yourselves.

Angela

Dear urbanorca,

You aren't going to find clinical studies online for this specific medication regarding MS or other autoimmune conditions. Period.

What seems to be missing from your understanding is the reality of being a chronic patient dealing with constant pain. We aren't "easy" patients. Sometimes doctors genuinely run out of ideas because even after cycling through every single proven therapy available, we don't get better—or worse, our condition actually deteriorates.

When that happens, both patients and physicians start looking at alternative treatment methods. When you're drowning, you grab at any straw. However, I have to point out that very few doctors would actually prescribe the specific medication you're championing.

If a doctor determines that a non-traditional drug won't cause more harm than good (for instance, if it's the case with LDN), and the patient has already exhausted all standard, evidence-based medical treatments without improvement, they might prescribe it. Even if the drug isn't a "cure," it can offer a glimmer of hope, which sometimes provides a psychological boost that helps the patient feel subjectively better.

Let me reiterate: LDN hasn't been scientifically proven to treat the diseases we are discussing, and there is no scientific evidence that it improves or cures the symptoms of autoimmune diseases.