Hey everyone, few questions about CCSVI and LDN
 

This may be a dumb question but I was wondering that if LDN is used in trying to helping heroin addicts get off heroin, doesnt that mean

that theres a small amount of heroin in LDN?Because I thought when they wein people off of heroin they use a small amount of it to help

with withdrawl. Is there any opiate effect to LDN and could that be why people feel so much better? I was also wondering if LDN has been

proven to actually help prevent relapses or has it just shown to help symptoms of MS? Does anyone here take LDN as their only MS

treatment?

I also was wondering why more and more people arent looking into CCSVI? And how can doctors turn away patients with blockages in their

veins just because its not proven to cure MS? If a vein is blocked (especially a main artery in your neck) I think it should be unblocked and

if it wasnt it would obviously cause some problems regardless of whether you have MS or not. From what I understand 99% of doctors

dont know how to check or look for the right things when testing for CCSVI (and most doctors dont even know how to test for CCSVI) so

people are having to go to clinics specific in CCSVI testing to get checked.

Anyways, thanks for letting me ramble on and ask a million questions :) Thanks everyone for being so helpful in this forum! You guys help

keep me sane thru my limbo-land! :grouphug:

hello! and Welcome.

About LDN...NO it doesnt have ANY opiates in it. What it does is an antogonist or it blocks the receptors that a molecule of heroine or even an endorphin would expect to find as a way to plug in and turn on your system. When your body is unable to get as much endorphins (our own natural pain killer) as it expects, it ramps up the process and provides more for us.

A few questions answered from http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html


How does LDN work?

It is believed that LDN briefly obstructs the effects of brain endorphins (the brain's natural
painkillers). Sensing an endorphin deficit, the pituitary signals for increased production of
endorphins, which re-balances the immune system, thus reducing the activity of the MS. The effect
lasts around 18 hours.


But how can this work? Isn’t MS is caused by an overactive immune system?

Although there is a long-held theory that MS might be caused by an overactive immune system, this
theory has never been proven. Recent clinical studies indicate that this theory might not be true at
all. The October 2004 issue of The Archives of Neurology reports a clinical study which found that
intravenous immunoglobulin therapy applied after the first signs of MS significantly reduced the
probability of developing clinically definite multiple sclerosis. Patients receiving this immune-system
boosting therapy also suffered fewer brain lesions. [Intravenous Immunoglobulin Treatment
Following the First Demyelinating Event Suggestive of Multiple Sclerosis; a Randomized Double
Blind, Placebo-Controlled Trial; Arch. Neurol. Oct. 2004; 61:1515-1520.]


How fast does LDN work?

Although some patients have no symptom changes, around two-thirds of MS patients report some
symptom improvement within the first few days. Other patients report improvement over the course of
several weeks or even months.

As for CCSVI there are many folks here that have sought it, and others that have waited and are patiently waiting more, better, and more accountable answers. Even the original MD that was in partnership with Dr. Zamboni backed off of the original studies, so MUCH more information needs to be had.

As for the comment that if you have a blocked vein it should be fixed, even if it doesnt cure MS, well...thats tricky. Veins are MUCH more fragile than Arteries. We have alot of equipment out there for the repair and clean out of arteries, but veins are more tempermental and easily insulted by many proceedures. From drawing blood (ever have that big old bruise?) to scaring and scar tissue build up from medications that are required for things like chemo or even IV rehydration therapy. Several of us are in the waiting for better equipment, and better answers lane, before we call our vascular MDs.

ONe of the things that was going on was that we as MS (neuro) patients were asking MDs to cure or fix our neuro issue with a vascular proceedure and many specialties dont like to mix. This is why your regular MD will send you to an endocrinologist if you have diabetes or a immunologist for arthritis or even your child to a pediatrician for general health care. We are in a world where our special MDs are just now learning to talk to and behave with one another.

As for discussion of CCSVI. We talk about it alot! do a search. We have had many discussions about it. Some are for it, some are against it, and some are just waiting.

I hope you get the answers you seek. :hug:

Thank you soooooo much Dej. I admit that I get a little tired of trying to de-miff all the wrongo stories, out there, about LDN.

CG, LDN is a good thing and harmless at such low doses. Give it a try..:hug:

As Far as CCSVI, the jury is still out on that. It needs a little more study, for my taste.

Very true words!

From the very first time Zamboni was interviewed on Canadian television, I knew that the CCSVI procedure would turn into a firestorm. Here you have a vascular specialist announcing to the MS world (neuros who believe the auto-immune theory) that he has stumbled upon a theory that MS may be vascular related. Can you imagine how threatening that would be to the established world of MD medicine? Neuros have based their careers and drug companies have made billions off the auto-immune theory and who is this guy who dares questions us!!

There has been some ugly accusations from both sides of the fence and I'm afraid it isn't going to stop for quite some time. And as usual, the MS patient is caught in the middle.

Harry

My dad is an anesthetist, and when I heard about LDN, I asked him about Naltrexone. (the full strength stuff, not the low dose stuff) and he said it's a great medication. It's one of the meds they use to counteract anesthesia...sort of like an antidote to narcotics. He was really interested in learning about what it does in low doses. He's not sure it's true, but at least my dad wanted to learn about it.

I have to stop procrastinating on getting myself a prescription for LDN, since I hear so much stuff about it. I'm just one of those people that's scared of everything.

Me too Erin. My neuro poo-pooed it, would not give me a prescription, but a friend here gave me info using a different guy. Did I follow through? No. Too uncertain but I've tried other potentially harmful stuff my neuros would prescribe so I should try LDN. The side effects are way less.

From what I have seen, LDN provides positive results for about half the people who try it. While it does nothing for MS as a disease, it does boost Endorphin production by the body. This results in a much higher state of well being. So, while it doesn't do anything for MS, feeling better can be a great thing.

As for CCSVI, there is information starting to indicate that the Vein condition may be an effect of MS, not a cause of it.

There is much to be learned about these things, it will take a long time.

I respectfully disagree Bill, IMO LDN slows the progression by stopping major demilynating exacerbations. It has for me and also for DD.:)

From what I've been reading about LDN, I'm in the camp that it does slow progression for the people that it works for.

I need to get off my butt and call someone and get me some LDN. I'm starting to realize my 8th grade math teacher was right. Procrastination is my middle name. (he actually wrote that on my report card in the "Notes")

Me, too! :)