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! :)

I suppose Dr. Swank would say that there is a vascular component of MS. As I posted just now in my thread about taking Nattokinase to lower blood viscosity, Dr. Swank's test for MS was to put a little of the patient's blood in a dish under a microscope, and add a drop of oil. If the person had MS, the cells in the blood would slow when faced the oil. He tested my blood this way, but he also used the more common diagnostic tools. My cells slowed.
He wanted all MS patients to be on a low saturated fat diet, and I have been on it for a long time. I always declined if I got off for a few days--some may say this was not an
MS reaction? A different vascular reaction? Whatever the case, Dr Swank lived into his
late 90's on his own diet, even though men in his family usually died three decades earlier (it's been a while since I read this, so if I am not exactly correct, excuse.).

I am now taking Nattokinase to lower blood vicosity, which I posted elsewhere.

I would not start LDN because opiates are my only pain killer other than anesthesia.
Otherwise I would love to try LDN. I was given naltrexone once by a quack who thought he would get me off Klonopin quickly. I had seizures and shocking low blood pressure....but this probably was higher dose Naltrexone. I have no idea. I obviously
needed the Klonopin for minor seizure activity, or else one might say that he took me off
Klonopin too fast by using Naltrexone. I know Klonopin is not an opiate, but I am just
reporting on what happened with the quack, who lost his license in WA state, although I think he is back in practice.

Mariel, they were probably using the full strength 50mg Naltrexone to try to wean you from the Klonopin.

I hope he didnt get his practice back! He sounds dangerous.

Erin, I noticed his name on the Directory of a Medical building near the elevator, when I was going to another doctor there. I know he lost his license but he must in some way have gotten it back, because there was his name. His partner was much better than he,
and the partner was the one who dx'd me with MS through MRI, eye tests, and so forth, but the partner seems to have been so affected by the problem that he left town and moved to the East coast. I believe deaths were involved.

Deaths were involved?! That's terrifying!

by SallyC...I said this earlier and, yes, for me and for many others, it has.:)

I never tried Prokarin, but have heard lately that it's an expensive hoax and doesn't help your MS at all???:rolleyes:

I did some reading on the site Dej posted.

From the section on How To Talk To Your Doctor, I read this objection that we might encounter:

“You’re already on [Avonex, BetaSeron, Rebif, or another drug]. LDN might
conflict.”

Your doctor might be right about this one. Most of the standard MS drugs (with the
probable exception of Copaxone), are immunosuppressant and thus tend to counteract
the beneficial effects of LDN. Depending on your general health, if you ask your
neurologist to take you off the standard MS drugs to try LDN, you might be facing an
uphill battle. Don’t give up. It just means that you have more homework to do. Tell
your doctor you will look into it and find out for sure.

It seems like their answer does mean that there is homework to do, but I don't know where to look into it, if they don't give answers here.

I'm on Copaxone. I guess that I usually thought that LDN was for people who were not on an ABCR for some reason. This doesn't clarify for me. Does anyone know the answer to that?

~ Faith

I've been on LDN since January.

I definitely have improved state of well-being and have been flare-free, but then again I've been on Tysabri since August so that may be why.

BUT I do want to point out that LDN can make spasticity worse. My legs have some minor permanent damage from the last flare, and it got worse when I was on a higher dose of LDN (4.5) and got better almost immediately (within 2 days) when I dropped down to 2 mg.

JD

Looking into CCSVI
 

California:
We've seen estimates that as many as 15000 PWMS have not only 'looked into' CCSVI treatment but have had the procedure done. My wife was one of them. Nine months ago, we drove from Pittsburgh, PA to Albany, NY for this simple procedure that lasted about 45 minutes. We saw immediate and dramatic improvements in her symptoms that day and, since then, have seen other subtle improvements to the point that she is now almost completely symptom free. It may not be a cure - but we're big believers in CCSVI treatment improving QOL. More and more interventional radiologists are getting onboard - a clinic just opened in Pittsburgh recently. The neurologists and BIG PHARMA are the problem. It's a turf war.

Hi,
I have been on LDN for almost three years and I had the CCSVI procedure too. My PCP gives me my script for LDN, now my Neuro does. My Neuro knows about my CCSVI too in Albany.

It is my body and I am in charge of it. No one tells me what drugs to take anymore. I had it with all the pile of drugs in my medicine basket, so I weaned off all of them. Best thing I ever did. I am very happy with my LDN and very happy I had the CCSVI procedure.

My Neuro now agrees with both. :eek: I never in a million years thought that that would ever happen. :)