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Old 06-11-2011, 07:07 PM #11
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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.
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Old 06-11-2011, 10:39 PM #12
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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.
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Old 06-12-2011, 11:10 AM #13
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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.
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Old 06-12-2011, 01:18 PM #14
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Deaths were involved?! That's terrifying!
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Old 06-19-2011, 11:05 PM #15
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Quote:
Originally Posted by californiafriend View Post
... I was also wondering if LDN has been
proven to actually help prevent relapses or has it just shown to help symptoms of MS? ...
Maybe I didn't read closely enough. I wonder about this, too. Did anyone already answer this question? (Sorry if I missed it.)

I've also heard about Prokarin. (Has anyone heard of that?) And, I wonder the same thing about that: Has it been proven to actually help prevent relapses or has it just shown to help symptoms of MS?

~ Faith
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Old 06-20-2011, 01:09 PM #16
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by SallyC...
Quote:
IMO LDN slows the progression by stopping major demilynating exacerbations. It has for me and also for DD
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???
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Old 06-20-2011, 02:34 PM #17
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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
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Old 06-27-2011, 08:09 PM #18
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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
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Old 07-25-2011, 02:03 PM #19
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Quote:
Originally Posted by californiafriend View Post
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!

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.
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Old 07-29-2011, 02:06 AM #20
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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. I never in a million years thought that that would ever happen.
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