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MS TREATMENTS - LOW-DOSE NALTREXONE (LDN)
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agate
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PostPosted: Sat Jul 15, 2006 8:21 pm    Post subject: MS TREATMENTS - LOW-DOSE NALTREXONE (LDN) Reply with quote

Here's a place to discuss LDN if you're on it or thinking about it or have been on it.
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one&only



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PostPosted: Sun Jul 16, 2006 10:55 am    Post subject: Reply with quote

I have been on it for 7 months now, with some pretty darn good results.

When I wake up in the morning I no longer dribble in my drawers. I still have occational days where I have this problem during the day.

Brain fog is about 85% better.

Twitches and zaps, and muscle tightening is about 75% better.

Fatiuge is about 40-50% better.

I don't have to use my backspace key nearly as much.

I'm sure there is more but I just can't think of them now.

I started out right from the start at 4.5mg.
Just don't take it away from me!
Pat
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agate
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PostPosted: Sun Jul 16, 2006 1:44 pm    Post subject: Reply with quote

That's especially good about the backspace key (LOL).

There's no danger that LDN will be taken away, is there?
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PostPosted: Mon Jul 17, 2006 2:41 pm    Post subject: Reply with quote Edit/Delete this post

Pat,

I'm really glad to read that LDN is working so well for you. I'm always glad to hear when someone is doing better.

I'm coasting right now on an every-other-day Copaxone shot while my liver heals from Rebif.

I've considered LDN. I may try it one day. I've read quite a bit about it but I can't seem to get over the "big gun hump." My MS is progressing and I'm not sure that I consider LDN a big enough gun. You mention symptom improvement but what about MS progression? How are you doing there?

I'm not asking for debate. Not in the least. I'm asking, if you're willing to share, about your personal choice. Why did you chose LDN over other therapies? Have you tried other therapies?

Joy
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one&only



Joined: 18 Jun 2006
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Location: Michigan

PostPosted: Mon Jul 17, 2006 3:18 pm    Post subject: Reply with quote

Joy, I have no DX, I have taken matters into my own hands, with the help of my PCP. They only thing a neuro has given me is provigal and trazadone for sleep. Well a neuro tried to put me on phenabarbatol for two types of tremors, but I wouldn't take it, it's too adictive and I don't want to be more whipped out.

I had already made up my mind if it was or I do get some kind of DX I would not use the CRABS. They cause your immune system to be lower and make you more prone to infection. I can't risk that, I am allergic to all but one antibiotic. The neuro said point taken, but until it could be proven it was MS he would not give me the script for LDN.

I'm not allowed to see any neuros now, I don't know if it is the insurance or the PCP, I should find that out on the 20th.

I haven't had any MRIs since I have been on it. But I had multiple/numberous lesions on the proir ones, the second showing progression.

Any symptom relief in my opinion is worth it, and there are no big side effects as in the CRABS. I researched it for almost a year, and when doctors weren't helping.............I just took matters into my own hand. I am alot better now.
Pat
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pals1107



Joined: 22 Jul 2006
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PostPosted: Fri Jul 28, 2006 2:52 pm    Post subject: Reply with quote

This was sent to a friend of mine from Cindy Lenz, the wife of Skip, from Skip's Pharmacy that specializes in compounding LDN.

RESOLUTION AS INTRODUCED 2005-2006

State of Vermont
House of Representatives

Montpelier, Vermont
Joint House Resolution


J.R.H. 6
Joint resolution urging the Food and Drug Administration and the Multiple Sclerosis Society to study the efficacy of low dose naltrexone as a multiple sclerosis medication
Offered by: Representative Obuchowski of Rockingham
Whereas, multiple sclerosis (MS) is an inflammatory disease of the central nervous system (CNS) that damages the myelin sheath or insulating material that surrounds the nerve fibers in the brain, spinal cord, and optic nerves, and
Whereas, MS is characterized by attacks known as“flare-ups” or exacerbations which may be associated with plaques that prevent conduction of nerve impulses in the CNS, and
Whereas, MS is most likely to occur in persons ages 20 to 40, and women are two to three times as likely as men to contract the disease, and
Whereas, no two cases of MS are identical, and although some persons go for years with no symptoms, lesions may still be forming in the CNS, and
Whereas, in the United States, it is estimated approximately 350,000 individuals live with MS, and nearly 200 cases are diagnosed each week, and
Whereas, Vermont has the highest percentage of MS cases per capita of any state in the nation, and
Whereas, there is a variety of approved drugs for treating MS that have varying degrees of success, and
Whereas, one drug that is not currently approved for MS treatment, but in private use has reportedly been effective, is low dose naltrexone (LDN), and
Whereas, although neither the United States Food and Drug Administration (FDA) nor the National Multiple Sclerosis Society has conducted any official trials on the effectiveness of LDN, unofficial trials have shown a high degree of success in arresting the disease’s progression, although problems have occurred in individuals who are exposed to undue fatigue, heat or a febrile illness, and
Whereas, despite this caveat, the overwhelmingly positive reports on the impact of LDN for MS patients merits official clinical trials under the auspices of the National Multiple Sclerosis Society, now therefore be it


Resolved by the Senate and House of Representatives:
That the General Assembly urges both the United States Food and Drug Administration and the Multiple Sclerosis Society to conduct scientifically valid clinical trials to assess the effectiveness and ramifications of low dose naltrexone as a medication for treating multiple sclerosis, and be it further
Resolved: That the United States Congress appropriate funds to support the federal research, and be it further
Resolved: That a copy of this resolution be sent to Acting FDA Commissioner Dr. Lester Crawford, to President and Chief Executive Officer of the National Multiple Sclerosis Society, Michael Dugan, to the members of the Vermont Congressional Delegation, and to Seth and Candi Sawyer in Westminster.



____________________________ Attested to:
Gaye R. Symington
Speaker of the House

____________________________ ____________________________
Brian E. Dubie Donald G. Milne
President of the Senate Clerk, House of Representatives





--------------------------------------------------------------------------------

Published by:
The Vermont General Assembly
115 State Street
Montpelier, Vermont

www.leg.state.vt.us
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PostPosted: Sat Jul 29, 2006 8:56 am    Post subject: Reply with quote Edit/Delete this post

Hi Pat,

Most importantly you are feeling better. It totally sucks that you can't an accurate diagnosis.



pals1107 wrote:
Whereas, although neither the United States Food and Drug Administration (FDA) nor the National Multiple Sclerosis Society has conducted any official trials on the effectiveness of LDN, [b]unofficial trials have shown a high degree of success in arresting the disease’s progression, although problems have occurred in individuals who are exposed to undue fatigue, heat or a febrile illness,




I would probably try LDN but I'd rather not as a monotherapy. I think there is merit to the antedotal reportings but I'm not comfortable at all trusting LDN alone to arrest my MS progression.

What unofficial trials?

Joy
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pals1107



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PostPosted: Sat Jul 29, 2006 9:50 am    Post subject: Reply with quote

Got me, I don't have a clue.
Pat
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PostPosted: Sat Jul 29, 2006 10:11 am    Post subject: Reply with quote Edit/Delete this post

pals1107 wrote:
Got me, I don't have a clue.
Pat


Where is Cherie? She may know.

Oh Cheri-e-e-e! Where art thou?
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lady_express_44



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PostPosted: Sat Jul 29, 2006 10:48 am    Post subject: Reply with quote

Joy wrote:
pals1107 wrote:
Got me, I don't have a clue.
Pat


Where is Cherie? She may know.

Oh Cheri-e-e-e! Where art thou?


Naltrexone, in it's larger dose (50 - 300mg), has undergone clinical trials, and is FDA approved; for alcohol (and possibly drug addiction - can't recall at the moment).

Low Dose Naltrexone underwent a double-blind randomized trial in Germany, on PwSP or PPMS. Even though:

- it was a very short trial (10 days)
- they didn't follow Dr. Bihari's dosing protocol (dosed at 9:00 am instead of between 9:00pm - 3:00am to coincide with our natural sleep cycle...)
- and all 60 of the participants were at greater then 5.0 EDSS (not the typical MS drug trial patients, for sure)
- 3.0mg (instead of stardard recommendation for 4.5mg)

it still showed some promising results:

- 82% of the doctors and 75% of the patients, were able to accurately assess whether the person was on LDN or placebo.

- 1/3 of all PwSPMS and PPMS with an EDSS over 5., were "responders".

- responders changed the rating of their EDSS for the better, by .05 points, in only 10 days.

http://www.klinik-dr-evers.de/downloads/LDN-Study_eng.pdf

A recent US trial with LDN used on PwCrohns was very successful. The results showed that 89 percent of participants showed an improvement with therapy, while 67 percent achieved remission of symptoms. The only side effect to treatment was sleep disturbance in some patients:

http://ldn.proboards3.com/index.cgi?board=links&action=display&thread=1148566984

I just ran across this one too . . . but it might have been somehow connected to the later trial that they did on Crohns. This was for PwIBS, and at first glance, it seems it may have had a 76% success rate(?). :

http://phx.corporate-ir.net/phoenix.zhtml?c=120834&p=irol-newsArticle_print&ID=458802&highlight=

Cherie
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PostPosted: Sat Jul 29, 2006 12:14 pm    Post subject: Reply with quote Edit/Delete this post

Cherie,

Thank you for the links.

A 10 day trial is just not enough for me. I see a few negatives listed there as well as the positives you posted.

There is not enough evidence, other than antedotal, to support LDNs effectiveness in PwMS. I even read in your first link that any effectiveness at all may be due to a genetic factor.

I'd love to give LDN a try for MS symptom relief. I suffer from a lot of spasticity and breakthrough TN pain. But I can't bring myself to abandon proven therapies in order to do so. I wish there was more information about LDN's use with the ABCRs.

I see it this way, the ABCRs may have some side effects but it's worth a shot IMO. Without them, I might very well be much worse off than I am.

I'm so glad that LDN seems to be working for some people. I think we all love to see others doing well.

I may ask some questions. I've only had a short time to read over the links.

Joy
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lady_express_44



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PostPosted: Sat Jul 29, 2006 12:23 pm    Post subject: Reply with quote

I agree, Joy, that that 10 day trial was not enough to prove anything. (Perhaps that's the reason that they referred to them as "informal" studies.)

It was interesting to see that people and doctors reported seeing improvement though, even though the trial design was all wrong.

LDN can be taken with Copaxone, and that's the way a lot of people are doing it. There was also a girl on MSW who was in the T trial, while using LDN. NOT that I am condoning it, but some people are using the interferons with LDN too (Dr Bihari doesn't recommend this though...).

The LDN community has been trying to pull together the money to do a clinical trial on bladder symptoms for PwMS. Last I heard, it was still going to be underway this year.

At least if LDN proves effective for this one symptom, it might be easier to get a rx just for that . . . and the rest of the benefits, for those who get them, will be a BIG BONUS. cheers

I know a lot of us suffer from IBS (which is very similar in symptoms to Crohns), so that trial might prove helpful for our cause too . . . at least from a safety & symptom mgmt perspective.

Cherie
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Matt



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PostPosted: Sat Jul 29, 2006 1:07 pm    Post subject: Reply with quote

That 10 day study seems to suggest that LDN had some effect on the patients. Some possibilities are that they had more energy because they were sleeping better, or it affected their mood. These are not bad things, of course.

Of course, we would all like to see a more standard clinical trial to investigate efficacy.

Crohn's disease tends to be relapsing/remitting. One expects most people who are having flare-ups of crohn's to go into remission eventually. They really need to do placebo-controlled studies.
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pals1107



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PostPosted: Sat Jul 29, 2006 6:53 pm    Post subject: Reply with quote

I have IBS, I had years of constapoation, then it switched to the opposite. Since LDN, I have normal stools, much less noise, bloating, ect.

I'm a beliver, I had no clue when I started LDN that I would get this bonus, but it is very welcomed.
Pat
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lady_express_44



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PostPosted: Sat Jul 29, 2006 9:53 pm    Post subject: Reply with quote

I have Ulcerative Colitis, and haven't had an attack since the first month on LDN either. Just a little bonus for me too, Pat.

Cherie
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Destiny



Joined: 22 Jun 2006
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PostPosted: Wed Aug 02, 2006 12:06 pm    Post subject: Reply with quote

Matt wrote:
That 10 day study seems to suggest that LDN had some effect on the patients. Some possibilities are that they had more energy because they were sleeping better, or it affected their mood. These are not bad things, of course.

Of course, we would all like to see a more standard clinical trial to investigate efficacy.

Crohn's disease tends to be relapsing/remitting. One expects most people who are having flare-ups of crohn's to go into remission eventually. They really need to do placebo-controlled studies.


Matt,

I understand what you're saying here and I so want the proper trials of LDN for whatever diseases that it is proclaimed to help with. I know what it has done for me and I cannot say enough about it.

I have not had a progression of disease or an exacerbation in over 7 months now!

Your next to last statement brought a thought to mind.

I know that you are merely stating a fact, but think about this. Yes people who have Crohn's do go into remission eventually, but do you suppose all of those people in the study would really have gone into a remission state at the same time unaided?

Just a thought I just had to get out there! geek icon_biggrin
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Matt



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PostPosted: Wed Aug 02, 2006 1:15 pm    Post subject: Reply with quote

Destiny wrote:


I know that you are merely stating a fact, but think about this. Yes people who have Crohn's do go into remission eventually, but do you suppose all of those people in the study would really have gone into a remission state at the same time unaided?



I don't know. It would be nice to be able to compare it with other studies of the same design. I don't have that kind of information available to me, though.
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agate
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PostPosted: Wed Aug 02, 2006 1:36 pm    Post subject: Reply with quote

Also, there's the "placebo effect." I recall hearing that if a group of people with a physical disorder are given harmless pills but told that the pills are a remedy, quite a large number of them will show an improvement--simply because they believe so strongly that they are going to get better.

The improvement is real and documentable. It may be a case of mind over matter.

I wonder if that's what went on in the LDN study. There weren't enough people enrolled in the study, it seems to me.
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Destiny



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PostPosted: Wed Aug 02, 2006 1:53 pm    Post subject: Reply with quote

Agate,

I doubt that very seriously. Could be, but I have my doubts.

I've been taking the LDN for over 7 months now and it has been an absolutely amazing drug for me. The only time that it seemed to not be working thoroughly was when I had a bout of pneumonia and then a few weeks later had an UTI.

During those times my tingling returned, as did my fatigue, but not to the same degree as before taking the LDN.

Matt,

I would love to be able to provide that info to you, but since it doesn't exist..................
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PostPosted: Wed Aug 02, 2006 2:17 pm    Post subject: Reply with quote Edit/Delete this post

Destiny,

How do you know you've had no progression of disease over the last 7 months? And even if that IS true, how do you know LDN is the reason?

I'm curious, if you're willing to share, if you've tried other MS therapies (I see you've been diagnosed for almost 7 years). Also are you on any drugs for MS symptoms?

There is a whole picture that we're not seeing here. You may not care to share personal information and I totally understand this but all sorts of questions pop up in my mind when someone makes claims about any drug without explaining. Heck, if I need to be taking a pill every day instead of shooting up, I need something more.

Here's a thought. You could be in a remission and it have nothing to do with the LDN. I've gone into remissions and felt wonderful.

And LDN may work for Crohn's and do nothing to halt the progression of MS.

I know you don't have scientific data to support LDN but more information about how it's helped you and your personal MS needs would be good to know.

Joy
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Destiny



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PostPosted: Wed Aug 02, 2006 8:55 pm    Post subject: Reply with quote

Joy,

LDN is the only drug that I take other than Tylenol for headaches and Tylenol PM for the rare sleepless night.

I took Beta for 2.5 years and stopped in Aug, 2005, the side effects just became too much and I had even gone to taking 1/2 dose as rx'd by my doc to try to counter the effects (didn't work though).

Everything started to get progressively worse in Oct and by early Jan it had become evident that I was going to have to give up my 20/hr week job.

My legs felt as if they had lead weights attached to them, fatigue that I had since my dx in 2000 was increasing and making life difficult. Depression was bad, bowel and bladder problems had been increasing, back pain began and was growing more by the day and cognitive issues that I had been plagued with for a couple of years were now getting much worse. I was beginning to experience dysphasia and tremor. Walking any distance at all would just wear me out entirely and then I would begin to limp, drop foot I think. Constant transient tingling and numbess.

At any rate I got the rx for LDN on Jan 19th and had the script in hand on the 20th. I took it that night and got up the next day to more energy than I had had in years, no fatigue or depression, no tingling or numbness.

I had so much energy I took down my X-mas tree and packed six boxes of decorations and the tree to the basement that day by myself (DH wanted to help, I wouldn't let him). I didn't do stairs more than once a day before this day. My DH and I went to an adult B'day Party and then out to supper and I could have even gone shopping, but DH was tired (imagine that, him not me).

Since that day I did nothing but improve for the next three or four months. I so wish I had kept a journal, but I didn't.

I do remember one thing about my healing process in general though, I would get these dull headaches that were accompanied by pain in my body. For example one day I had the headache and my left thumb hurt and tingled that day, I had always had problems with my thumb tingling and going numb. After that day the problem with my thumb no longer exists.

There is a lot more to the story, but I think you get the general idea.

And......

Destiny wrote:
Agate,

I've been taking the LDN for over 7 months now and it has been an absolutely amazing drug for me. The only time that it seemed to not be working thoroughly was when I had a bout of pneumonia and then a few weeks later had an UTI.

During those times my tingling returned, as did my fatigue, but not to the same degree as before taking the LDN.


Immediately following the abx everything went back to the way it had been for me with the LDN.

I'd be happy to answer any other questions you might have, I just don't want to bore you with too many details.

Does this answer your questions? I don't mind sharing or your asking personal questions, that is how I learned by reading other peoples personal experiences with LDN.

One other thing--I'm still working. I didn't have to give up my job after starting the LDN! That should tell you why I so vehemently defend LDN and why I tout it's benefits.
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lady_express_44



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PostPosted: Wed Aug 02, 2006 10:35 pm    Post subject: Reply with quote

All I have to do is go off the LDN for a few days, to know what it is doing for me.

Placebo does not affect bladder/bowel/numbness/heavy legs/balance/claw hand/pain... for 6, 12, 18... months in a row.

Or, perhaps we are all just imagining what is happening to us, and none of us really has MS at all? geek

People take the CRABs, and at $20,000 a yr, and rest assured, many are hoping they will help with symptoms too. They don't normally (except less attacks, perhaps).

For two years (& 14 yrs with the disease), I was getting progressively worse, and having attack after attack (every 3 months).

I dropped one EDSS point, in 9 months on LDN, and haven't had an attack 14 months now. I take no other drugs what-so-ever.

I'm not saying it works for everyone, but most people report at least some improvement. And, some of us have had exceptional success with it.

Cherie
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agate
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PostPosted: Wed Aug 02, 2006 10:57 pm    Post subject: Reply with quote

Cherie, I'm glad if you've found a drug that works well for you.

There's no need to be defensive about it here. I am not about to argue with you about LDN. For one thing, I've never taken it and so am not in a position to say one way or another.

Also, I know only too well that sometimes a drug that a lot of people would consider too far-out works well for one person, or quite a few people. I wouldn't dream of advising them to stop taking it.

I myself take a very high dosage of a drug that happens to help me. For years doctors would tell t me that I was living dangerously. I shot back at them: "I'm still walking, do you notice?"--because that drug was helping me to keep walking. It still is helping me. I've been taking it in this dosage for about 20 years.

I finally found a few doctors who are willing to prescribe it for an off-label use. Also, the guidelines for taking it in the Physicians Desk Reference* have changed. It now says that the dosage can be titrated to the individual patient's needs--which is exactly what I was doing all along, except that not many doctors would go along with it.

"I can't possibly prescribe that drug in the dosage you're taking it!" was what I heard. And off I'd go, to find another doctor.

There were several years where I had prescriptions for the drug from several doctors going at different pharmacies, just so I could get the drug in the dosage I wanted.

I found out that this is a tactic drug addicts use! This drug is not addictive. It's just a common diuretic, often prescribed and one of the older, tried-and-true ones.

A lot of doctors are much too reluctant to go along with anything the slightest bit off the beaten path.

------
* I don't know if you have this in Canada, but it's the reference book USA doctors use in prescribing. It consists of all of the pharmaceutical companies' information about each drug, and there are even color photos of every pill, capsule, and caplet in it.
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pals1107



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PostPosted: Thu Aug 03, 2006 3:03 am    Post subject: Reply with quote

I had wondered if the LDN was really helping me too. Twice I went off if on purpose just to see. Then I knew why I ws taking it!

Well I am here to say it does wonders for______! Maybe someday I can fill in that blank. Weather it be
Multiple sclerosis
Myeloproliferative Disorder
Mitochondrial disorder
Chronic Active Epstein Barr
Amylodiosis
or whatever. Those are just some things that have been thrown out there.

To me the one that covers about everything that is going on is MS. Other wise I have several things going on.

If I could just get a doctor to do the tests to actually rule out some of those other things, instead of throwing them out there, maybe I could get somewhere.

But in the meen time the LDN makes it so I can have somewhat of a life. I had gotten to the point where I was in bed when I wasn't at work. My girls hated that, my one daughter told my old neuro and PCP what a difference LDN made. She told the PCP she was scared of what was happening to me, until the LDN.

It would be wonderful if they would do a REAL study on LDN, but they don't have to do that to sell me on it, I'm sold! It's so nice not having marshmallow fluff for brains.
Pat
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beachbaby



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PostPosted: Thu Aug 03, 2006 5:03 am    Post subject: Reply with quote

I have now been on LDN for 3 months. One of the first symptoms that i had relief was sleeping and bladder! I could get to sleep and stay asleep, and only had to get up once or twice a night for bathroom!! That by itslef would have been great!

I have more energy, spacicity in my legs is pretty much gone, I have regained the use of my right hand/arm!!

I am not 100%, but feel better than I have in the past 10 years!! I refuse to think about what is not good! I WILL NOT give in to it. (trying to stay positive)

I am not and have not been on any CRABS, that has been my choice and my dr supports me. As long as I have sx relief, i am more than happy.
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Matt



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PostPosted: Thu Aug 03, 2006 6:12 am    Post subject: Reply with quote

Most people who take the CRABS say they have no idea whether the drug is working or not, because people with RRMS can improve over time in relapse rate, relapse severity and EDSS score.

Their evidence for the efficacy comes from the clinical trial evidence.

They type of effect that LDN has seems to be either a placebo effect or symptomatic relief of a very different nature from the CRABS, which really are disease modifying therapies.
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lady_express_44



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PostPosted: Thu Aug 03, 2006 8:04 am    Post subject: Reply with quote

Matt wrote:
Most people who take the CRABS say they have no idea whether the drug is working or not, because people with RRMS can improve over time in relapse rate, relapse severity and EDSS score.


Most still hope that they will see improvement, Matt.

Matt wrote:
Their evidence for the efficacy comes from the clinical trial evidence.


So . . . they rest assured knowing that in absolute terms, 10% of the people get benefit.

Just because there have been clinical trials, doesn't mean the drugs work all that well. Even the clinical trials proved that. scratch

And, just because LDN hasn't undergone proper clinical trials, doesn't mean it's not working, either.

Matt wrote:
They type of effect that LDN has seems to be either a placebo effect or symptomatic relief of a very different nature from the CRABS, which really are disease modifying therapies.


Not true.

It's all anecdotal, but LDN's claim to fame is that it slows progression and stops relapses for most people. That's disease modifying.

The symptom relief is a BONUS, and is the only way that many of us can convince our doctors to rx it. Symptom relief is not the goal though.

Cherie
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PostPosted: Thu Aug 03, 2006 8:15 am    Post subject: Reply with quote Edit/Delete this post

Cherie,

As agate said, no need to get defensive. We're trying to have a civil and hopefully interesting conversation about LDN.

Destiny, thank you for your reply. Please add anything you'd like to add. Not too many details for me. I appreciate you sharing with me.

Thank you to Pat and beachbaby too.

I've got a doctor's apptmt so I need to scoot for now. I'd like to reply more fully later.

Joy

I edited because my hand did a herky jerk and I hit send! HAHA!

agate, what is it you are taking?
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lady_express_44



Joined: 22 May 2006
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Location: Vancouver, Canada

PostPosted: Thu Aug 03, 2006 8:41 am    Post subject: Reply with quote

agate wrote:
There's no need to be defensive about it here. I am not about to argue with you about LDN. For one thing, I've never taken it and so am not in a position to say one way or another.


I don't mean to come across as defensive Agate. The placebo effect argument is an easy to defend though, and I've learned to just cut to the chase now.

At the end of the day, if a $25 sugar pill is helping so many people, that much, who the hell cares if they are just imagining it?

Whatever works.

I'm not advocating that people drop their mainstream drugs, if they are working for them, and I always suggest that people continue on with Copaxone, if only for their own peace of mind. But, LDN is a good option for those who don't have any others, or who chose not to take the mainstream drugs.

There are lots of MS'ers that are doing much better with LDN, with or without scientific proof.

You may not agree with my approach in how I convey this important message, but it has worked to sway even the most hard-nosed cynics to at least give it a try. It is working for a lot of people, and that's really all that matters to me.

BTW: great LDN newsletter this month:

http://www.ldnresearchtrust.org/Newsletter/August2006.pdf

Cherie

Edit: double word, "doing" instead of "getting"
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agate
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PostPosted: Thu Aug 03, 2006 8:56 am    Post subject: Reply with quote

Cherie, you wrote:

Quote:
At the end of the day, if a $25 sugar pill is helping so many people, that much, who the hell cares if they are just imagining it?

Whatever works.


Exactly. I don't care if my weird way of taking another medicine strikes even some doctors as unacceptable--if it works for me, I'll keep taking it. We're looking at desperation here.

I don't like being swollen up like a balloon and being too stiff and numb to move. The medicine I take gets rid of those problems. Maybe it's the placebo effect. I don't care, as long as it's working.


--Which is one reason why you won't get any argument from me about LDN.

Joy, I take hydrochlorothiazide.
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Matt



Joined: 21 May 2006
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PostPosted: Thu Aug 03, 2006 9:33 am    Post subject: Reply with quote

lady_express_44 wrote:


At the end of the day, if a $25 sugar pill is helping so many people, that much, who the hell cares if they are just imagining it?

Whatever works.


I don't disagree with what you said.
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PostPosted: Thu Aug 03, 2006 10:30 am    Post subject: Reply with quote Edit/Delete this post

lady_express_44
Quote:
At the end of the day, if a $25 sugar pill is helping so many people, that much, who the hell cares if they are just imagining it?

Whatever works.


Because it sounds like snake oil. Do you really believe this, Cherie?

I care. I don't like to be duped and I don't like to see others duped either.

Joy

I'm not saying that LDN is snake oil, I'm just disagreeing with this statement.
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PostPosted: Thu Aug 03, 2006 11:09 am    Post subject: Reply with quote Edit/Delete this post

I appreciate the antedotal information on LDN. I support those who have chosen it as their therapy and I hope it continues to work for you.


I'm considering (and have been considering for a while) trying LDN for symptom relief but I don't plan to abandon conventional therapy in order to do it. I'm currently on Copaxone and doing fairly well at the moment. I've had a terrible year though so I'm tremendously glad for the lull.

I could say I KNOW the reason I'm feeling better is because I started Copaxone in May but that would be stretching the truth.

I think we're all hanging on and hoping that our choice of therapy happens to be the right one for us. There is no right or wrong. It's a choice.

Destiny, I have many of the same MS symptoms as you do. Spasticity. I wake up during the night. Bladder problems that can range from a slight problem to wearing a Depends in self defense. Heavy limbs. Fatigue.

Two of my worst problems are balance issues and TN. Do you know anyone with TN that LDN has helped?

Pat, I'm so sorry that you can't get the help you need. I wish there was something I could do.

Cherie, a question for you. Why do you methodically tear down everyone else's choice of therapy?(other than LDN of course) I don't care if you believe in LDN or not. EVERYONE is making their decisions based on what they feel is right for them.

You wrote:
Quote:
You may not agree with my approach in how I convey this important message, but it has worked to sway even the most hard-nosed cynics to at least give it a try. It is working for a lot of people, and that's really all that matters to me.


No, I don't agree with your approach. I appreciate information and I appreciate shared life experiences but I don't need you to beat me down. Have a little compassion for the 'cynics' and realize that there are good points about therapies other than the one you chose.


lady_express-44 writes:
Quote:
I'm not advocating that people drop their mainstream drugs, if they are working for them, and I always suggest that people continue on with Copaxone, if only for their own peace of mind. But, LDN is a good option for those who don't have any others, or who chose not to take the mainstream drugs.


I agree LDN is a good choice for people who have no other options. BUT, as a Copaxone user, I don't take Copaxone because of 'peace of mind', I take it because it's been proven to work. In some cases perhaps a small percent but certainly there are cases where it halts progression by 100%.

Joy

edited to add an 'it'


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lady_express_44



Joined: 22 May 2006
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Location: Vancouver, Canada

PostPosted: Thu Aug 03, 2006 1:25 pm    Post subject: Reply with quote

Joy wrote:
lady_express_44
Quote:
At the end of the day, if a $25 sugar pill is helping so many people, that much, who the hell cares if they are just imagining it?

Whatever works.
Do you really believe this, Cherie?

I care. I don't like to be duped and I don't like to see others duped either.



Joy,

I don't believe it is placebo, and I explained why in my prior post.

I would suggest the vast majority of PwMS aren't imagining their symptoms when they occur . . . and I know we are not imagining our improvmements to our symptoms/attacks stopping (due to LDN) either.

Cherie
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PostPosted: Thu Aug 03, 2006 2:13 pm    Post subject: Reply with quote Edit/Delete this post

lady_express_44 wrote:
Joy wrote:
lady_express_44
Quote:
At the end of the day, if a $25 sugar pill is helping so many people, that much, who the hell cares if they are just imagining it?

Whatever works.
Do you really believe this, Cherie?

I care. I don't like to be duped and I don't like to see others duped either.



Joy,

I don't believe it is placebo, and I explained why in my prior post.

I would suggest the vast majority of PwMS aren't imagining their symptoms when they occur . . . and I know we are not imagining our improvmements to our symptoms/attacks stopping (due to LDN) either.

Cherie


Did I post anywhere that I think LDN is a placebo? No.

I objected to the idea you posted that it's okay to sell a $25 placebo as long as people believe it works.

You took this opportunity to 'Hail for the Cause' again and ignore what I actually said.

I'm sure LDN is helping people. I also believe that the ABCRs are helping people too. The difference between you and me is that I would never presume to tell anyone that I know what they should do.

I wouldn't have a bit of trouble with you pushing LDN off on everyone except for this - you DO encourage people to stop the ABCRs and you have no idea what happens to these people in the long run. PwMS read your posts and, convinced they can be healed, stop taking their therapy and buy LDN off the internet. I know it can't be that hard to find a doctor somewhere who will fill that prescription without even seeing the person.

How do you know that 2 years down the line this devotee to your posts hasn't suffered a life changing exascerbation that could've been prevented by one the ABCRs?

You can't know, that's the answer.

I understand believing in something, Cherie. I have passions too. One of my passions at the moment is for you to understand that you may be doing harm with your promises.

You are not a doctor.

Destiny, Pat and beachbaby. Thank you for sharing your experiences. That is something that you can attest to. I have, good and bad, experiences with therapies to share too.

Joy
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beachbaby



Joined: 18 Jun 2006
Posts: 86

PostPosted: Thu Aug 03, 2006 2:27 pm    Post subject: Reply with quote

I feel that noone that is on LDN feels that it is a placebo effect.


I have been involved on the research end of drug trials, and completely understand EVERYTHING that is involved; also I have been a 'client' in research trials, so i can absolutely speak from both sides. I, by nature, evaluate everything on its own merits. I say this only to let everyone know where I am coming from. I ALWAYS play devils advocate, even when I believe the opposite. In other words, I try to look at everything with an objective view.

I have accidently and PURPOSEFULLY been off of LDN. Purposefully, I noticed that symptoms did indeed return, even after 2 days. Accidently, I noticed after 1 day!! ( I was on vacation with girlfriends. We got ahmmm, wasted, and I just plain forgot! the next day, I was feeling all the sx that made me so miserable( leg arm, fatigue) that I couldn't belive I felt so bad because I was on LDN. Then I remembered that I HADN'T taken LDN the night before. I then made sure that EVERYONE knew that I NEEDED TO take meds before going to bed.

ACCIDENTILY I have been off, the other week while on vacation with my husband, My meds leeked out so I couldn't take it. ( nI am on the liquid form.) the next day I was in pain, extremely moody( NO, NOT PMS!!!!), and had to get up MANY times at night to pee. Arm and leg HURT!

Plaebo effect? I don't think so. and if for some small miniscule possibiliity it is, for about $100.00(one hundred dollars) a year, I will continue as long as I keep on feeling as good as I do!! And as long as I continue to feel as GREAT as i do, why shouldn't I continue???



as long as i stay out of this damned heat....
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PostPosted: Thu Aug 03, 2006 2:36 pm    Post subject: Reply with quote Edit/Delete this post

agate wrote:


Joy, I take hydrochlorothiazide.


Thanks, agate. I'm googling around on this. If I have to take a diurectic at some point, I can certainly ask about this one.
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pals1107



Joined: 22 Jul 2006
Posts: 61
Location: Shelby Twp. Michigan

PostPosted: Thu Aug 03, 2006 2:59 pm    Post subject: Reply with quote

My choice for whatever has a reason.
Even my last neuro saw my point.
I am allergic to all but one antibiotic Crabs are known to make you more prone to infection. He said you're right you could be putting yourself at an even greater risk.

At first he did the whole never heard of LDN, then said it's not a FDA approved durg, well yes it is but not for MS. Oh yeah 80% of drugs people with MS take are off lable. THen well until you are diagnosed I won't give it to you.

Then "where did you get this from".
So that is why I made my choice for LDN, and the last neuro supported my decision, although he wouldn't give it to me because I have no DX, other than the one he gave me of demyelinating brain disease.

Another comment, I don't see Cherie coming off as defencive or bullying. THat is just the way she "types" remember you can't hear her inflections here.
Maybe soon I'll get a chance to talk to her in person. But for now I have to give her a BIG THANK YOU, for throwing that word LDN out there for me to find.
Pat
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lady_express_44



Joined: 22 May 2006
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PostPosted: Thu Aug 03, 2006 4:33 pm    Post subject: Reply with quote

Joy wrote:
Did I post anywhere that I think LDN is a placebo? No.

I objected to the idea you posted that it's okay to sell a $25 placebo as long as people believe it works.

You took this opportunity to 'Hail for the Cause' again and ignore what I actually said.


The sentence you highlighted was in direct response to the suggestion that perhaps LDN is placebo. Whether you said it to begin with or not, that was what I was responding to.

As I said, I do not believe it is placebo . . . not in the slightest. But, if others do, and it is still working for them (they would have to try it to know), then who cares if it is placebo? It's not like it is costing $20,000 a year to be "duped".

Joy wrote:
I'm sure LDN is helping people. I also believe that the ABCRs are helping people too. The difference between you and me is that I would never presume to tell anyone that I know what they should do.


I don't care what anyone else choses to do, but I do care that people are given the information that will tempt them to do their own research, and make their own decision about what's right for them.

I think the CRABs work for some people too, which is why I said that I am "not advocating they go off their mainstream medication...". But, LDN can be used as a combination therapy too.

The ONLY way LDN has gained momentum is by "word of mouth". There's no marketing plan backed by millions of $, formal clinical trials, or paid vacations by the suppliers to get doctors to rx it. In fact, it's still fairly hard to get a rx for, and there is a lot of scare mongering that goes on about it, even by such Biogen/Elan produced programs like the July Healthtalk was.

It takes determination to get LDN, on a lot of occasions, and I have pumped enough people up to have the courage to fight for it. Most are seeing substantial improvement, so THAT IS ALL I CARE ABOUT.

Joy wrote:
I wouldn't have a bit of trouble with you pushing LDN off on everyone except for this - you DO encourage people to stop the ABCRs and you have no idea what happens to these people in the long run. PwMS read your posts and, convinced they can be healed, stop taking their therapy and buy LDN off the internet. I know it can't be that hard to find a doctor somewhere who will fill that prescription without even seeing the person.


You aren't reading my posts properly then.

Joy wrote:
How do you know that 2 years down the line this devotee to your posts hasn't suffered a life changing exascerbation that could've been prevented by one the ABCRs?


People don't "jump" onto LDN because "Cherie" on the internet told them it is a good option. You give me too much credit, Joy. geek However, many people will jump onto, or stay on a "mainstream" drug (that isn't working for them) because their neuro/doctor & people on the boards told them to.

But, how does anyone know that plugging one of these drugs isn't going to end up making them sicker, or i.e. killing them from PML?

IMHO, LDN is a safe option, that people should research for themselves, and make an informed decision on.

Joy wrote:
I understand believing in something, Cherie. I have passions too. One of my passions at the moment is for you to understand that you may be doing harm with your promises.


I have confidence in what I am saying, and I give people credit for being able to independantly research the information that is out there too.

Joy wrote:
You are not a doctor.


You haven't any idea who I am, Joy.

A person does not need to be a doctor to do research, analyze information, and make an informed personal decision. In fact, many of us probably know more about this disease then the average doctor does because we are focused on it.

Besides, there are more and more doctors/neuros out there now who are agreeing that LDN is a good option, with or without scientific proof.

I tend to respond to the "no clinical trials", etc. questions about LDN now, cause there is a TON of anecdotal information out there already. Certainly, YOU don't need to hear more from me, Pat, Destiny, Beachbaby, because if anecdotal information was CONVINCING to you, you'd have tried it already.

Cherie
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Matt



Joined: 21 May 2006
Posts: 961

PostPosted: Thu Aug 03, 2006 4:40 pm    Post subject: Reply with quote

Joy wrote:
I wouldn't have a bit of trouble with you pushing LDN off on everyone except for this - you DO encourage people to stop the ABCRs and you have no idea what happens to these people in the long run. PwMS read your posts and, convinced they can be healed, stop taking their therapy and buy LDN off the internet. I know it can't be that hard to find a doctor somewhere who will fill that prescription without even seeing the person.


So, I'm not the only one who reacts this way. The problem to me, Cherie, is that you act TOO gung-ho. And, it could result in someone switching away from their more proven remedies, whether you say that you recommend switching or not.

You also tend to have a STRONG tendency to discourage anyone from posting their negative experiences with LDN, like as if you are trying to sell LDN.
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lady_express_44



Joined: 22 May 2006
Posts: 1314
Location: Vancouver, Canada

PostPosted: Thu Aug 03, 2006 4:49 pm    Post subject: Reply with quote

Matt wrote:

So, I'm not the only one who reacts this way. The problem to me, Cherie, is that you act TOO gung-ho. And, it could result in someone switching away from their more proven remedies, whether you say that you recommend switching or not.


Do you guys really think that ME personally recommending a non-mainstream option for this disease is going to be what CONVINCES someone to abandon their proven therapy?

I heard a statistic recently (sorry, can't remember where), that 2/3 of PwMS aren't even on a mainstream disease modifying therapy? That's a lot of people who could see benefit from LDN!!!

I believe in LDN, and I don't do any other medications. That's not because someone that I respected/believed/got sucked in by told me to do it. It is because I RESEARCHED it and made an informed decision for myself.

That's what I recommend everyone does.

Cherie
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PostPosted: Thu Aug 03, 2006 4:49 pm    Post subject: Reply with quote Edit/Delete this post

lady_express_44 wrote:
Joy wrote:
Did I post anywhere that I think LDN is a placebo? No.

I objected to the idea you posted that it's okay to sell a $25 placebo as long as people believe it works.

You took this opportunity to 'Hail for the Cause' again and ignore what I actually said.


The sentence you highlighted was in direct response to the suggestion that perhaps LDN is placebo. Whether you said it to begin with or not, that was what I was responding to.

As I said, I do not believe it is placebo . . . not in the slightest. But, if others do, and it is still working for them (they would have to try it to know), then who cares if it is placebo? It's not like it is costing $20,000 a year to be "duped".

Joy wrote:
I'm sure LDN is helping people. I also believe that the ABCRs are helping people too. The difference between you and me is that I would never presume to tell anyone that I know what they should do.


I don't care what anyone else choses to do, but I do care that people are given the information that will tempt them to do their own research, and make their own decision about what's right for them.

I think the CRABs work for some people too, which is why I said that I am "not advocating they go off their mainstream medication...". But, LDN can be used as a combination therapy too.

The ONLY way LDN has gained momentum is by "word of mouth". There's no marketing plan backed by millions of $, formal clinical trials, or paid vacations by the suppliers to get doctors to rx it. In fact, it's still fairly hard to get a rx for, and there is a lot of scare mongering that goes on about it, even by such Biogen/Elan produced programs like the July Healthtalk was.

It takes determination to get LDN, on a lot of occasions, and I have pumped enough people up to have the courage to fight for it. Most are seeing substantial improvement, so THAT IS ALL I CARE ABOUT.

Joy wrote:
I wouldn't have a bit of trouble with you pushing LDN off on everyone except for this - you DO encourage people to stop the ABCRs and you have no idea what happens to these people in the long run. PwMS read your posts and, convinced they can be healed, stop taking their therapy and buy LDN off the internet. I know it can't be that hard to find a doctor somewhere who will fill that prescription without even seeing the person.


You aren't reading my posts properly then.

Joy wrote:
How do you know that 2 years down the line this devotee to your posts hasn't suffered a life changing exascerbation that could've been prevented by one the ABCRs?


People don't "jump" onto LDN because "Cherie" on the internet told them it is a good option. You give me too much credit, Joy. geek However, many people will jump onto, or stay on a "mainstream" drug (that isn't working for them) because their neuro/doctor & people on the boards told them to.

But, how does anyone know that plugging one of these drugs isn't going to end up making them sicker, or i.e. killing them from PML?

IMHO, LDN is a safe option, that people should research for themselves, and make an informed decision on.

Joy wrote:
I understand believing in something, Cherie. I have passions too. One of my passions at the moment is for you to understand that you may be doing harm with your promises.


I have confidence in what I am saying, and I give people credit for being able to independantly research the information that is out there too.

Joy wrote:
You are not a doctor.


You haven't any idea who I am, Joy.

A person does not need to be a doctor to do research, analyze information, and make an informed personal decision. In fact, many of us probably know more about this disease then the average doctor does because we are focused on it.

Besides, there are more and more doctors/neuros out there now who are agreeing that LDN is a good option, with or without scientific proof.

I tend to respond to the "no clinical trials", etc. questions about LDN now, cause there is a TON of anecdotal information out there already. Certainly, YOU don't need to hear more from me, Pat, Destiny, Beachbaby, because if anecdotal information was CONVINCING to you, you'd have tried it already.

Cherie


I could go back and highlight and say this and highlight and say that but I'm tired of it. I could prove every point I want to make but it wouldn't make a bit of difference to you because you wouldn't listen and you'd insult me again with I'm too stupid to understand you (I'm paraphrasing here). And then you'd highlight and post me cross-eyed again.

There is one thing I'd like you to consider. People do listen to you. Some are desperate for the kind of advice you give out and some are just easily influenced. There is indeed harm to be had.

I give up trying to have a conversation with you, Cherie. You twist everything around to suit yourself. This has actually gotten rather depressing for me.

I started out interested in your damn LDN and you've managed to beat the hell out of me again. Congratulations, dear.

Joy

Oh and if I'm to believe what you post, then yes I do know you are not a doctor. You've posted many times what your occupation was.
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pals1107



Joined: 22 Jul 2006
Posts: 61
Location: Shelby Twp. Michigan

PostPosted: Thu Aug 03, 2006 4:59 pm    Post subject: Reply with quote

It's just information, for anyone to take or leave.
SOme people write from the heart, some state experiances, some research, some analize. Some just go on their gut, some believe anything a doctor would say.

In the end none of us have all the answers, but lets share what we know or experiance.
Doctors have a practice, cuz that is all they are doing in the end, practicing.

HOw many doctors would go over the information like we do, they don't share much with us, 99% don't even have the disease how can they know? They can't walk in our shoes.
It's up to us to help each other and ourselves.

This is good dialog most of the time, lets not throw the baby out with the bath water here. Just take what you can use from it, and if you don't like an attitude or statement..................
scroll down.
sunny
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PostPosted: Thu Aug 03, 2006 5:09 pm    Post subject: Reply with quote Edit/Delete this post

I've never seen Cherie discourage anyone from presenting their negative experiences with LDN, on this board or any other. What I have seen, on occasion, is her suggesting that there may have been other explanations for the problems an individual experienced...and that's just common sense.

I also don't see Cherie as bullying, or overstating her case, or telling people not to use CRABs. What I do see is a woman who has made herself very knowledgeable about a promising therapy and is putting a lot of time and effort into getting the information out there so PWMS who want to try LDN, can.

As far as placebo effect is concerned, it's well-established in the medical community that placebos work...it's that old mind-body connection. There's far too much anecdotal evidence for LDN's efficacy for it to be merely a placebo, though.

I'm as suspicious of snake oil treatments as anyone; moreso than most, probably. But I also have an open enough mind not to dismiss out-of-hand something that sounds strange or too good to be true. I do my own research, and it's thorough.

I can't really call myself part of the LDN community any more, because I developed a frank allergic reaction (hives), which can happen with any medication. The filler has been ruled out, so it was the LDN itself. I really wish I could keep taking LDN, because it was clearly helping me.

zenna
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Matt



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PostPosted: Thu Aug 03, 2006 5:22 pm    Post subject: Reply with quote

I'm really sorry to hear that you had to stop taking your medicine, Zenna. That's terrible.
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beachbaby



Joined: 18 Jun 2006
Posts: 86

PostPosted: Thu Aug 03, 2006 6:27 pm    Post subject: Reply with quote

zenna- i am sorry that you have had a reaction to the LDN. I have allergies tho tings most people don't also. It is a PIA isn't it?

For what it is worth, I researched and researched on many different treatments for MS. Then I talked to several people that had tried LDN before I made an independent decision to try it. I like to try the path of least resistance, as does my dr. What I love about him is that he has always be one to try alternative treatments, no matter what for. He is up to date on many off-label uses for meds and likes to try them.

I think that people in general want to spread the word about anything that is good, just as they will spread the word even MORE if something is bad.

On the other hand, I wouldn't try to disuade anyone from trying anything that i myself haven't tried. Nor would I put a person down just because they felt strongly about something, no matter what it was.
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lady_express_44



Joined: 22 May 2006
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PostPosted: Thu Aug 03, 2006 7:10 pm    Post subject: Reply with quote

Zenna,

Ok . . . here I go again. geek

Most of the time, the compounders use the crushed Revia pill, which already has many different fillers in it, and then they add more fillers when compounding to the right dosage. I'm not sure if you were getting yours from Skip, and I'm not sure if he uses the pure powder to compound, but . . .

My pharmacy uses the PURE POWDER, and compounds it into a liquid for me. This is the only way I can take it because I have a lot of allergies to things.

You may be too nervous to try another route at this point, but if LDN was working for you, maybe there is still another option for you.

Sorry to here that you might not be able to continue on it though.

Cherie
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mmcc



Joined: 27 May 2006
Posts: 159
Location: Maryland

PostPosted: Thu Aug 03, 2006 8:14 pm    Post subject: Reply with quote

Matt wrote:

So, I'm not the only one who reacts this way. The problem to me, Cherie, is that you act TOO gung-ho. And, it could result in someone switching away from their more proven remedies, whether you say that you recommend switching or not.


I totally agree with you, Matt and Joy!

lady_express_44 wrote:
Do you guys really think that ME personally recommending a non-mainstream option for this disease is going to be what CONVINCES someone to abandon their proven therapy?


If you don't believe anyone would influenced by what you say then why do you bother saying it?

lady_express_44 wrote:
I heard a statistic recently (sorry, can't remember where), that 2/3 of PwMS aren't even on a mainstream disease modifying therapy? That's a lot of people who could see benefit from LDN!!!


That is a helluva lot of people who might benefit from CRABs. There is no proof whatsoever that LDN is disease modifying. There IS proof that the CRABSs are.

My daughter tried LDN. It did not help. It did not hurt. That does not mean it might not either help or hurt someone else.

You have been nothing but critical of the CRABs and Tysabri because the "data shows...." but you have NO data on LDN. For whatever reason you have decided that this drug is the saviour of the MS community and completely safe because you know some people who have benefitted.

lady_express_44 wrote:
I believe in LDN, and I don't do any other medications. That's not because someone that I respected/believed/got sucked in by told me to do it. It is because I RESEARCHED it and made an informed decision for myself.


There are no clinical trials on LDN for you to research. There are clinical trials on all the other drugs you have bashed all over the internet.

There is no evidence at all that LDN is disease modifying as are the CRABs. I take Neurontin and that makes me feel massively better than before I started taking it. That is great, but it doesn't mean it is modifying the course of my MS. If fact it is not.

With the neurontin I can do far more things than I was able to without it - much like you are saying LDN makes you feel. With Neurontin I can walk further, have major reductions in numbness, sleep better, and have considerable reduction in pain. If I stop taking it, the symptoms all get worse right away.

So far this sounds just like the claims you and others are making for LDN. That is not disease modifying, however.

If I had an EDSS score with and without Neurontin, the difference would be very large. Again, that does not mean disease modification.

It MAY mean that LDN is a useful drug for some people with MS, but it in no way does it mean it is anything but a symptom treatment. In fact, when you stop taking it and the symptoms come back, it indicates that is likely to be another symptom drug.

It is great if some people are getting some relief with LDN, but unless there is some evidence it is disease modifying you might be trading symptom relief for disease modification. They are both worthy things to have happen, but there is no reason to stop the CRABs or other disease modifying drugs in favor of LDN.

Based on your method of research I should advocate that everyone drop their current therapy and take Novantrone. I took it. It helped tremendously. I did not have any permanent bad effects. I know other people who can say the same thing. By your logic that makes it the ideal drug.

In fact, it carries some serious risk, does not work for everyone, and should be tried (except in extreme situations) only after people have tried and failed to be helped by more conventional MS drugs.

If you are going to advocate LDN so strongly, how about including a disclaimer that there are NO clinical trials for LDN effectiveness in MS and that your advocacy is based on anecdotal evidence.

If you are looking for a wonder drug, look at Tysabri. NOT A SINGLE PERSON contracted PML - when the drug was taken as a monotherapy. 67% of people benefitted. If you look at the research done on how people "felt" it helped them (the criteria YOU use to judge LDN), the case for taking it is staggering.

Those suffering more minor side effects were 3% for those taking Tysabri and 2% for those taking placebo.

Yet, the FDA has put a black box warning on it and created all kinds of safeguards in place.

And you have trashed it for more than year and warned everyone to stay away from it.

How about applying a similar standard when advocating one drug and trashing another?

The truth is you have no data on MS and LDN to back up your extreme advocacy and no safety data for LDN for MS patients.

The same is not the case for Tysabri and the others. In the case of Tysabri the safety data is clear for those taking the drugs for 2 years at least.

People who are taking medications die all the time. The issue is always why they died. In the case of MSers taking LDN, there is no research about whether LDN contributed to their deaths.

In the case of the CRABs and Tysabri there is data.

The fact is I think LDN is probably worth a try, but not if it means dropping, postponing, or avoiding other more tested therapies.

You need to modify you unbridled passion for the drug by making it clear that your evidence is ENTIRELY anecdotal and if you have now changed your position and don't advocate stopping or postponing other more proven therapies, then you need to say that -- apply your own "black box" warning.
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pals1107



Joined: 22 Jul 2006
Posts: 61
Location: Shelby Twp. Michigan

PostPosted: Thu Aug 03, 2006 8:42 pm    Post subject: Reply with quote

Enough already!

I hate seeing this thread turned in to another lets bash Cherie thread.

I don't care if there wasn't LDN studies, whitch there has been a few, yes even for MS.

I don't see where Cherie is saying to go off or not take the mainstream drugs.

I like it, it helps me, no one twisted my arm, I did my own reading.

I don't see what some of you think you see as to Cherie, her motive is only to inform, to make a person think first, for themselves, and not have blind faith in the medical profession or drug companies.

Gee I have been on two drugs that were later pulled off the market, and both have probaly done serious damage, because I trusted "their" studies. I can never be a blood or organ donor because of it, and the other, my son will suffer from that one.

Who's agenda are these studies working off of?

Sorry but I am in a pissy mood, and lots of good reasons to be pissed, and they all come from the medical/insurance industry.

Please stop picking apart everything the woman says, like many have said "if you don't like it don't read it"
I just feel like some are "crapping" up this LDN thread.
If you don't want posts about it lay it on the line, but Agate put this thread up, not CHerie.
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Destiny



Joined: 22 Jun 2006
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PostPosted: Thu Aug 03, 2006 10:04 pm    Post subject: Reply with quote

OH, FOR CRYING OUT LOUD!

Do you not read the freakin' posts! Every damned time Cherie posts about LDN there is always warning after warning about the fact that there are no freakin' trials except the one in Germany and she always posts about the falacies of that trial. The other trial is for Crohn's, another autoimmune disease.

She does the same as I and tell people they have got to do the research and we provide all the information and links GOOD AND BAD! The DISCLAIMERS and WARNINGS are there! Cherie also advocates remaining on Copaxone!

PLEASE give the woman a break!

I came here to post some terrific news! Instead I get slapped in the face with rude condescending behavior by so called adults!

What you people are doing is not discussing something in an adult manner, your doing nothing more than trying to bully Cherie into submissive behavior!

Now for the positive news and then I'm gone!

I went to my MS Specialist today for my 6 month check-up. I have been doing these 6 month check-ups every since I was dx'd back in 2000. I have been on LDN since my last check-up in January of this year. He told me that I was by far doing better than any other patient he had seen today. He told me I was doing wonderful and that he was not messing with my treatment of LDN! He gave me an rx for a year of LDN and told me he would see me in a year, not 6 months!

This is the same doctor who 6 months ago told me that if was not impressed with my using the LDN I would have to submit to an MRI and add Copaxone to the LDN if I wanted to continue using it! I don't even have to do the MRI, he just handed me the script and sent me on my way.

LDN has been the best choice for the treatment of my MS. I recieve symptom relief and halt disease progression all with a pill I take at bedtime!

I know some of you are going to disagree with the disease modifying properties of LDN, but it stopped an exacerbation dead cold and I have done nothing but steadily improve since I began LDN!

Hope you all have a nice life! And I thought this place maybe a nice place, wrong again!
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Sweetyhide



Joined: 26 Jun 2006
Posts: 131

PostPosted: Fri Aug 04, 2006 2:37 am    Post subject: Reply with quote

Please stop! Dont turn this into a "let's all jump on Cherie" thread!

I have been on Copaxone since 2004. (sorry cant remember exactly what month right now)

I came to the internet to learn all i can about Ms and the meds. I met Cherie. (before she was on LDN)
She ws very informative about many things and I learned a lot from her posts around the itnernet. (if you would stop looking at her posts as hostile you would see that they truly are not meant to be that way. Its how you look at it)

She went on LDN and I did not. I sat back to see what others were going to experience. I researched and read and listened. She actually praised me one time for being so cautious and trying to learn all I can before jumping in with both feet.

Not one time did Cherie "push" me to try LDN. Not one time did Cherie "urge" me to stop copaxone.
Not one time did I feel that she was trying to brainwash me into believing that LDN was my magic pill.

This year has been total hell for me. I decided that LDN was safe and I had nothing to lose.
I started in May. I am still on copaxone and she even said to me that it was a good thing.

(and for the record, LDN is NOT easy to get a script for. I could not get one here in NC.)

She was there for me when I had questions and offered tremendous support. But...in no way was she pushing me.

What the hell is wrong with you people?
You take every chance you can to ride Cherie's ass.
How she takes it I will never know.

If what she says irks the crap out of you, skip her posts. Same thing most of you told us to do about MR Soul. If i recall properly I read where someone said "that is the way Mr soul is" no need in asking him to change he just has passion (or something to that affect). Well this is the way Cherie is and this is her passion. take her for what she is or ignore waht she says. She is straight forward, doesn't cloud her posts with hugs and cutesy stuff and sometimes a little brass but that is her.

Or maybe a fight with her is your intent? to jump on whatever she has to say? Maybe there is an ongoing grudge.
Get the hell over it already.
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beachbaby



Joined: 18 Jun 2006
Posts: 86

PostPosted: Fri Aug 04, 2006 4:55 am    Post subject: Reply with quote

I have to agree with One and Only, Destiny, and Sweetyhide!

GET THE HELL OFF THE LET'S BASH CHERIE MODE !!!! I am so sick and tired of a few of you berating Cherie! You are as bad as MSWorld! except agate doesn't delete posts.

I am sick of the way that whenever Cherie posts, people seem to got out of their way to bash her! JUST SHUT THE HELL UP! IF you don't like it, DON'T READ IT!

When I began thinking about LDN, Cherie NEVER ONCE told me that this is THE WAY to go, in fact, she thought that perhaps I should wait. and even consider other forms.

I have also been on drugs that have been taken off the market! I have been on drugs that made things worse. I have been on drugs that the side effects were so terrible that there was no way I could stay on it. LDN does not have those problems. Yes, I do realize that there is a POSSIBILIY that LDN could fall into one of those categories. that is a SMALL chance I will take.

Now PLEASE, let this thread continue to INFORM people about LDN. Trust those of us that have chosen this drug, to continue to research. If there becomes evidience that it is dangerous, I will be off of it and also warning. I think we all would do that.

If the only reason you post here is to harass, bash, or otherwise be mean, hateful and spiteful, THEN STAY THE HELL AWAY FROM THIS THREAD!! I won't come to your drug thread and harass, bash or be mean there.

I ask those of you that have bashed Cherie, to PLEASE delete your posts. They do nothing to add to the thread except to make yourselves look like hateful, spiteful people. surely you don't want people to see you like that, when I know you are not in real life.
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Matt



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PostPosted: Fri Aug 04, 2006 6:18 am    Post subject: Reply with quote

mmcc wrote:

You have been nothing but critical of the CRABs and Tysabri because the "data shows...." but you have NO data on LDN. For whatever reason you have decided that this drug is the saviour of the MS community and completely safe because you know some people who have benefitted.


We're not bashing Cherie. We are just disagreeing with her about this issue. brave

I'm definitely sorry if anyone came accross as spiteful.
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PostPosted: Fri Aug 04, 2006 7:17 am    Post subject: Reply with quote Edit/Delete this post

It's not a bash Cherie post. I WAS here on this thread to learn.

I asked a question about TN and LDN and was totally ignored. Cherie wanted to pick a fight.

Open your eyes, go back and read. Cherie was bashing me because she got defensive. And YES, I got back in her face. I'm no one's doormat and I'm not going to let her beat me down. I refuse to kiss her ass.


And something else you might consider, due to HER replies I left this place yesterday terribly depressed. She HAS an influence, believe me.

mmcc posted nothing but the truth.

Matt certainly didn't bash anyone.

I didn't think I'd ever ask for a copy and paste. But show me one time where Cherie has posted a warning about LDN!!?

And beachbaby, you can shut the hell up and scroll down if you don't like what I post. It goes both ways.
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PostPosted: Fri Aug 04, 2006 7:31 am    Post subject: Reply with quote Edit/Delete this post

zenna wrote:


I can't really call myself part of the LDN community any more, because I developed a frank allergic reaction (hives), which can happen with any medication. The filler has been ruled out, so it was the LDN itself. I really wish I could keep taking LDN, because it was clearly helping me.

zenna


I'm sorry you had to stop LDN, Zenna. It was helping you. I know, in my own way, how it feels to stop a therapy that you thought was helping you. It's crushing.

And Destiny, great news on the doctor's apptment! You probably floated out of the office.
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Matt



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PostPosted: Fri Aug 04, 2006 7:33 am    Post subject: Reply with quote

lady_express_44 wrote:


So . . . they rest assured knowing that in absolute terms, 10% of the people get benefit.



This number is way off. In one of the clinical trials there was a 30% increase in the number af patients who are relapse-free (a package insert). In the Betaseron study, there was a 50% reduction in the number of moderate to severe flare-ups (So says one of my videos).
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lady_express_44



Joined: 22 May 2006
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PostPosted: Fri Aug 04, 2006 7:50 am    Post subject: Reply with quote

mmcc wrote:
Matt wrote:

So, I'm not the only one who reacts this way. The problem to me, Cherie, is that you act TOO gung-ho. And, it could result in someone switching away from their more proven remedies, whether you say that you recommend switching or not.


I totally agree with you, Matt and Joy!


Anyone who considers going off a drug and onto LDN, is personally satisfied that this is the right decision for them.

They KNOW:

- there are no clinical studies
- the drug will be hard to obtain
- there are no guarantees
- there can be side-effects; what they are

People don't make these decisions lightly, especially when it is going "against" the standard options available. On the other hand, they often do just go along with what their Neuro recommends, and that is the reason that I am VERY nervous about new drugs on the market.

As for a "worst case scenario", if someone who is doing very well on the mainstream meds, opts out willy-nilly to try LDN. . . . (bearing in mind that I DON'T believe this is happening often) . . . personally, I think they made the same GREAT choice that I did.

You won't hear me say this publically too often, but I believe, without a doubt, that LDN is the best drug option out there for MS. That is MY opinion, based on tons of personal experience with PwMS.

I have every right to say that, even though I don't!

mmcc wrote:
lady_express_44 wrote:
Do you guys really think that ME personally recommending a non-mainstream option for this disease is going to be what CONVINCES someone to abandon their proven therapy?


If you don't believe anyone would influenced by what you say then why do you bother saying it?


You are twisting my words again mmcc.

The WHOLE point in me talking about LDN IS to INFLUENCE people to look at this GREAT option. I don't deny that.

What I said is that I don't believe MY personal recommendation (alone) is going to CONVINCE someone ...

mmcc wrote:
That is a helluva lot of people who might benefit from CRABs. There is no proof whatsoever that LDN is disease modifying. There IS proof that the CRABSs are.


People have MANY reasons for not using the CRABs:

- too advanced
- can't afford them
- can't tolerate them
- don't want to do needles
- etc.

People have generally made this decision independant of, and prior to, obtaining knowledge about LDN.

mmcc wrote:
My daughter tried LDN. It did not help. It did not hurt. That does not mean it might not either help or hurt someone else.


I have said LDN, like all drugs, doesn't work for everybody. But my experience is that it does work, at least somewhat, for most people.

I don't have enough information to even venture a guess on why it didn't work your daughter, but from what I recall, they aren't fully convinced that she has MS.(?) Perhaps that is the reason.

IMHO, LDN is a lot less likely to hurt anyone then many of our other drug options.

mmcc wrote:
You have been nothing but critical of the CRABs and Tysabri because the "data shows...." but you have NO data on LDN. For whatever reason you have decided that this drug is the saviour of the MS community and completely safe because you know some people who have benefitted.

There are no clinical trials on LDN for you to research. There are clinical trials on all the other drugs you have bashed all over the internet.

There is no evidence at all that LDN is disease modifying as are the CRABs. I take Neurontin and that makes me feel massively better than before I started taking it. That is great, but it doesn't mean it is modifying the course of my MS. If fact it is not.

With the neurontin I can do far more things than I was able to without it - much like you are saying LDN makes you feel. With Neurontin I can walk further, have major reductions in numbness, sleep better, and have considerable reduction in pain. If I stop taking it, the symptoms all get worse right away.

So far this sounds just like the claims you and others are making for LDN. That is not disease modifying, however.

If I had an EDSS score with and without Neurontin, the difference would be very large. Again, that does not mean disease modification.


My EDSS score was reduced mostly because of improved functional systems; cognitive abilities, and bowel/bladder improvements. My claw hand went away, spasticity and spasms improved, and my pain almost disappeared.

http://www.thjuland.net/edss-fs.html

Tell me, what one single other drug can accomplish all that? Even if LDN ONLY worked on my symptoms (which is NOT true), it has still been AMAZING for me!

As far as any message I have about the CRABs, it is always just that people UNDERSTAND how the efficacy stats are calculated. I think they are very misleading to most people.

mmcc wrote:
It MAY mean that LDN is a useful drug for some people with MS, but it in no way does it mean it is anything but a symptom treatment. In fact, when you stop taking it and the symptoms come back, it indicates that is likely to be another symptom drug.

It is great if some people are getting some relief with LDN, but unless there is some evidence it is disease modifying you might be trading symptom relief for disease modification. They are both worthy things to have happen, but there is no reason to stop the CRABs or other disease modifying drugs in favor of LDN.


That's where you are wrong, mmcc.

Yes, there are no clinical trials to prove it, but LDN's claim to fame is that is STOPS attacks, and reduces progression.

Reducing attacks is one of the main measures of the disease modifying drugs, and what they hang their hat on for selling them.

VERY, very seldom does anyone on LDN have an attack. Ask around!

mmcc wrote:
If you are going to advocate LDN so strongly, how about including a disclaimer that there are NO clinical trials for LDN effectiveness in MS and that your advocacy is based on anecdotal evidence.


Anyone who seriously considers and researches LDN, already knows this. It's written all over the internet and on virtually every thread I've ever posted to about LDN.

mmcc wrote:
If you are looking for a wonder drug, look at Tysabri. NOT A SINGLE PERSON contracted PML - when the drug was taken as a monotherapy. 67% of people benefitted. If you look at the research done on how people "felt" it helped them (the criteria YOU use to judge LDN), the case for taking it is staggering.

Those suffering more minor side effects were 3% for those taking Tysabri and 2% for those taking placebo.

Yet, the FDA has put a black box warning on it and created all kinds of safeguards in place.

And you have trashed it for more than year and warned everyone to stay away from it.

How about applying a similar standard when advocating one drug and trashing another?

The truth is you have no data on MS and LDN to back up your extreme advocacy and no safety data for LDN for MS patients.

The same is not the case for Tysabri and the others. In the case of Tysabri the safety data is clear for those taking the drugs for 2 years at least.

People who are taking medications die all the time. The issue is always why they died. In the case of MSers taking LDN, there is no research about whether LDN contributed to their deaths.

In the case of the CRABs and Tysabri there is data.


As long as people have ALL the information available (the good and the bad) to make an conscious, educated decision about their drug choice, that's all I care about.

I will NOT recommend Tysabri at this time, because in my heart, I don't think it has proven safe enough. While the drug companies, some doctors/neuros, and some advocates continue to promote it (it has enough backing without me on the bandwagon), I will continue to point out the potential risks . . . so that people are informed of the "other side of the coin". Then it's up to them to make a choice.

mmcc wrote:
You need to modify you unbridled passion for the drug by making it clear that your evidence is ENTIRELY anecdotal and if you have now changed your position and don't advocate stopping or postponing other more proven therapies, then you need to say that -- apply your own "black box" warning.


I don't NEED to do anything, mmcc.

I don't care if I have your approval; I am quite confident with the message I give out, and am comfortable with the approach I use.
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lady_express_44



Joined: 22 May 2006
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Location: Vancouver, Canada

PostPosted: Fri Aug 04, 2006 8:13 am    Post subject: Reply with quote

Joy wrote:
I asked a question about TN and LDN and was totally ignored.[/u] Cherie wanted to pick a fight.

I didn't think I'd ever ask for a copy and paste. But show me one time where Cherie has posted a warning about LDN!!?


GEEZ . . . I didn't even have time to respond to your question, Joy, before more comments were thrown at me.

If you go to the LDN survey site, you can find what symptoms LDN has (anecdotally) proven helpful for:

http://www.ldnresearchtrust.org/

I'm not sure what kind of warning you are looking for, but Braintalk has a sticky about the pros and cons about LDN.

If you look at the threads that I and others reference on MSW, when discussing/asked about LDN (search LDN), you will see that the discussion was COMPLETE with every pro and con about LDN.

In fact, I specifically asked the mods that the conversations NOT be locked, so that ALL of this could finally be discussed openly, and that this information would be available to anyone in the future.

Joy wrote:

And beachbaby, you can shut the hell up and scroll down if you don't like what I post. It goes both ways.


Look back at some of the things you wrote Joy. scratch

Everything I've written has been about the specific topic. You and mmcc consistently try to get digs in, I think in an attempt to otherwise engage me off-topic. Then, when I don't bite, you get frustrated and attack me personally.

Cherie
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lady_express_44



Joined: 22 May 2006
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PostPosted: Fri Aug 04, 2006 8:15 am    Post subject: Reply with quote

Matt wrote:

We're not bashing Cherie. We are just disagreeing with her about this issue. brave

I'm definitely sorry if anyone came accross as spiteful.


Matt, your point on this thread was valid, and worth discussing. I don't people were referencing your posting.

Cherie
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lady_express_44



Joined: 22 May 2006
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PostPosted: Fri Aug 04, 2006 8:25 am    Post subject: Reply with quote

Matt wrote:
lady_express_44 wrote:


So . . . they rest assured knowing that in absolute terms, 10% of the people get benefit.



This number is way off. In one of the clinical trials there was a 30% increase in the number af patients who are relapse-free (a package insert). In the Betaseron study, there was a 50% reduction in the number of moderate to severe flare-ups (So says one of my videos).


No it's not, Matt . . . and that is my point in openly discussing the "advertised" CRAB stats.

The 30% is a RELATIVE number; relative to placebo.

In ABSOLUTE numbers, only 10% of the people saw benefit.

Have a look at the December newsletter, the article written by Art Mellor, "Is This Drug For Me" at this link:

http://www.ldnresearchtrust.org/index.htm

Cherie
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PostPosted: Fri Aug 04, 2006 8:43 am    Post subject: Reply with quote Edit/Delete this post

Cherie,

I'm not copying and posting anymore. I'll just reply 'freehand' so to speak.

My question about TN was WAY back up at the top. Say whatever. scratch

I could, again, copy and paste, every aggressive remark you posted to dig at me but I figure everyone can read.

Joy



I apologize to the board for stooping to beachbaby's level. I was angry that she insist that I shut up while she retains her freedom to speak. I should not have posted "you can shut the hell up and scroll down if you don't like what I post. It goes both ways." I could have posted "It's also true you can scroll down when you see my name and not respond."



I apologize for nothing else.
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PostPosted: Fri Aug 04, 2006 8:45 am    Post subject: Reply with quote Edit/Delete this post

I'm off the board for the next 3 days (I'm sure you're all doing the happy dance) geek

So when I don't respond it's only because I'm not here.
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Matt



Joined: 21 May 2006
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PostPosted: Fri Aug 04, 2006 9:00 am    Post subject: Reply with quote

I look forward to your return!
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Matt



Joined: 21 May 2006
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PostPosted: Fri Aug 04, 2006 9:05 am    Post subject: Reply with quote

lady_express_44 wrote:
[
Have a look at the December newsletter, the article written by Art Mellor, "Is This Drug For Me" at this link:

http://www.ldnresearchtrust.org/index.htm



I can't find the article by Art Mellor. Could you provide a more specific link for me? I'm really suspicious of this one.
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lady_express_44



Joined: 22 May 2006
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PostPosted: Fri Aug 04, 2006 9:21 am    Post subject: Reply with quote

This is the only way I know how to do it, Matt.

Can you get on the site? If so, choose "Newsletters" in the center menu.

When you get to the newsletters page, use the drop-down menu to pick Dec 7.

In that newsletter, look for the article by Art.

If that doesn't work, I can get them to email me the article, but that'll probably take a few days.
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lady_express_44



Joined: 22 May 2006
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PostPosted: Fri Aug 04, 2006 9:34 am    Post subject: Reply with quote

Joy wrote:
Cherie,

I'm not copying and posting anymore. I'll just reply 'freehand' so to speak.

My question about TN was WAY back up at the top. Say whatever. scratch

I could, again, copy and paste, every aggressive remark you posted to dig at me but I figure everyone can read.

Joy


To find this information takes a little research (which you can now do for yourself) and I haven't had the inclination to look yet.

I overdid it BIG TIME with my arms and they have been very sore, so I was only answering those points that I thought were important at the time. Until today, I haven't even been posting on any other boards for the most of this past week.

I did not make any digs against YOU. The negative comments I made were all directly at the specific topic/drugs/information.

You must be taking these comments personally, but my comments have NOTHING to do with YOU what-so-ever.

Cherie
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beachbaby



Joined: 18 Jun 2006
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PostPosted: Fri Aug 04, 2006 11:00 am    Post subject: Reply with quote

Joy wrote:

....

And beachbaby, you can shut the hell up and scroll down if you don't like what I post. It goes both ways.


I never directed that comment to anyone in particular;It was aimed at EVERYONE THAT IS ARGUING! I didn't call you out. Apparently you feel guilty, Joy. I am sorry, but isn't all about you.

I am just sick and tired of all the hateful and spiteful things that are being said. There is no need of that!

Why can't there EVER be a thread ANYWHERE about LDN, that people can voice their thoughts and opinions ABOUT LDN, and not turn it into a free for all. It is absurd.
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Matt



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PostPosted: Fri Aug 04, 2006 11:20 am    Post subject: Reply with quote

Cherie,

I've read it, but, frankly, the relative risk seems to be a much more important number. If only 20% have a relapse over a certain period of time, a drug that cures MS in 100% of patients, would only yield a 20% reduction of absolute risk.

However, I do think that some people respond better to a given treatment than others, so a 50% reduction in moderate to sever attacks definitely does not mean that any given person will have 50% fewer moderate to severe attacks than they would have without the medication.

I don't have statistical proof that some people respond better than others, but, the drug companies certainly haven't shown that all people with RRMS have the same response.
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Matt



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PostPosted: Fri Aug 04, 2006 11:23 am    Post subject: Reply with quote

Joy wrote:

There is one thing I'd like you to consider. People do listen to you. Some are desperate for the kind of advice you give out and some are just easily influenced. There is indeed harm to be had.


I agree with this. This is why people who aren't doctors should not try too hard to influence other people's medication decisions. It can potentially be quite harmful.

Beachbaby: Your posts on this thread seem more spiteful and hateful than anyone else's.
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Sweetyhide



Joined: 26 Jun 2006
Posts: 131

PostPosted: Fri Aug 04, 2006 12:01 pm    Post subject: Reply with quote

Joy, I still cant see where she "bashed" you.
Sorry.

I think that maybe you are too wrapped up in what she says. Chill out.

Quote:
This is why people who aren't doctors should not try too hard to influence other people's medication decisions. It can potentially be quite harmful.


And Matt....I have read that same thing by the mods and others at MSW a thousand times. One reason I dont post there much anymore. You cant post certian things because you aren't a Dr. It can be harmful.


It's a message board with peoples views and opinions.
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lady_express_44



Joined: 22 May 2006
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PostPosted: Fri Aug 04, 2006 12:02 pm    Post subject: Reply with quote

Matt wrote:
Cherie,

I've read it, but, frankly, the relative risk seems to be a much more important number. If only 20% have a relapse over a certain period of time, a drug that cures MS in 100% of patients, would only yield a 20% reduction of absolute risk.

However, I do think that some people respond better to a given treatment than others, so a 50% reduction in moderate to sever attacks definitely does not mean that any given person will have 50% fewer moderate to severe attacks than they would have without the medication.

I don't have statistical proof that some people respond better than others, but, the drug companies certainly haven't shown that all people with RRMS have the same response.


The 30% figure that you referred to originally, was in reference to the reduction in relapse rates, relative to placebo. This is the same number that everyone refers to when they are talking about the CRABs. They think this means that they work to reduce attacks by 30%, for 100% of the people. That is not true. They work for 30% (10% absolute) people, and reduce attacks by 30% on average.

Absolute numbers are more accurate in my mind. If we use relative numbers for an LDN trial, and IF people do as well as is anecdotally reported, the difference would be about 500%.

The raw data is available too, Matt; how many actually had a relapses. I remember reading some of it at McFox's website (not the forum), as well as the FDA site.

Cherie
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Matt



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PostPosted: Fri Aug 04, 2006 12:38 pm    Post subject: Reply with quote

lady_express_44 wrote:


The 30% figure that you referred to originally, was in reference to the reduction in relapse rates, relative to placebo. This is the same number that everyone refers to when they are talking about the CRABs. They think this means that they work to reduce attacks by 30%, for 100% of the people. That is not true. They work for 30% (10% absolute) people, and reduce attacks by 30% on average.


If you count the total number of relapses that occured with the people that take the drug versus the total number that occured with the people who take the placebo, there is a 30% reduction in some studies. The BENEFIT study got a 50% reduction in moderate to sever flare-ups on this measure.

They also found a 30% increase in the number of patients who a relapse free, which is a different measure, entirely.

I have seen those numbers posted on the internet, that some doctors think that the CRABs only work for 30% of people. There's no evidence for this statistic. It might simply give everyone a 30% reduction in relapse rate. I do tend to think that some people respond better than others.

Quote:

Absolute numbers are more accurate in my mind. If we use relative numbers for an LDN trial, and IF people do as well as is anecdotally reported, the difference would be about 500%.


I really don't believe in doing statistics on anecdotally reported evidence. The problem with absolute numbers is that they vary depending on how long the study lasted. To me, the most important statistic is the 50% reduction in moderate to severe flare-ups. I have had quite a number of flares since I started Beta, but they have all been mild. Moderate to severe flares have a tendency not to remit completely. So, Betaseron might be partially responsible for why I am doing so well.
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Matt



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PostPosted: Fri Aug 04, 2006 12:42 pm    Post subject: Reply with quote

Sweetyhide wrote:


And Matt....I have read that same thing by the mods and others at MSW a thousand times. One reason I dont post there much anymore. You cant post certian things because you aren't a Dr. It can be harmful.


This is a small board with freedom of speech. We all end up using our own judgement. I don't think that there is anything wrong with explaining to someone why one's judgement would be different from theirs, either.
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mmcc



Joined: 27 May 2006
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PostPosted: Fri Aug 04, 2006 1:43 pm    Post subject: Reply with quote

I am curious about why some say LDN is hard to get. My daughter had not problem at all.

Also, the 10% is wrong - the FDA site or the drug company sites have the data.

For Tysabri the reduction is 68%. I don't remember the others offhand.

Beachbaby - if you want to be rude go ahead and enjoy yourself. Disagreeing is not a personal attack. Neither is correcting misinformation.

I may or may not come here every day, but I'm not going anywhere, so you need to learn to deal with it, and hopefully in a more productive way.

As I said before when there is misinformation, I think it is important to correct it. Sorry you disagree.
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beachbaby



Joined: 18 Jun 2006
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PostPosted: Fri Aug 04, 2006 3:12 pm    Post subject: Reply with quote

Matt wrote:
Joy wrote:

There is one thing I'd like you to consider. People do listen to you. Some are desperate for the kind of advice you give out and some are just easily influenced. There is indeed harm to be had.


I agree with this. This is why people who aren't doctors should not try too hard to influence other people's medication decisions. It can potentially be quite harmful.

Beachbaby: Your posts on this thread seem more spiteful and hateful than anyone else's.

matt- i dont' deny because when it is done to me, I give it back. Keeps me from entering into an attack- this I have found. But not MORE than others, just as much though.

Hell- I;m not perfect -- NOBODY here is! but when i perceive others being bashed I will jump in. I would do the same for ANYONE here. REMEMBER- we cannot hear tone and inflection here. I think that is hard for ALL of us to keep in mind when reading.
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Matt



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PostPosted: Fri Aug 04, 2006 4:04 pm    Post subject: Reply with quote

beachbaby wrote:

Hell- I;m not perfect -- NOBODY here is! but when i perceive others being bashed I will jump in. I would do the same for ANYONE here. REMEMBER- we cannot hear tone and inflection here. I think that is hard for ALL of us to keep in mind when reading.


Not being able to hear people's tone has freaked me out on more than one forum. It is hard to tell what is or isn't meant as an attack sometimes. We all have that same problem.
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lady_express_44



Joined: 22 May 2006
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PostPosted: Fri Aug 04, 2006 4:32 pm    Post subject: Reply with quote

mmcc wrote:
I am curious about why some say LDN is hard to get. My daughter had not problem at all.


Your daughter was lucky then, as it can still be difficult to get the rx.

If someone else has paved the way (as is the case at my Neuro now), people can get it. But, there are still some who refuse to prescribe it because it is not a mainstream drug. Some doctors will not overstep the neuro either.

mmcc wrote:
Also, the 10% is wrong - the FDA site or the drug company sites have the data. For Tysabri the reduction is 68%.


What does that 68% represent, and how is that calculated, mmcc?

Cherie
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lady_express_44



Joined: 22 May 2006
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PostPosted: Fri Aug 04, 2006 4:44 pm    Post subject: Reply with quote

Matt wrote:
I agree with this. This is why people who aren't doctors should not try too hard to influence other people's medication decisions. It can potentially be quite harmful.


It's funny to hear people discuss this, Matt.

On one had, some will say "the decision is between you and your neuro" about these drugs, but when that doesn't work to THEIR satisfaction, you hear all kinds of bitching and complaining that it is "our right" to make the decision.

For instance, there are quite a few people who are being discouraged (by their doc/neuro) from using Tysabri at the moment, but everyone gets up in arms about that.

Yet, when we are talking about our right to discuss and obtain LDN, then it becomes "you are not a doctor". scratch

My prior Neuro (for 13 yrs) works out of one of the largest MS Research Centers in the world, and many of the CRAB trials were done there. Both he and my doctor recommended I do NOT take CRABs because they said, in short, "they do not help that many people", and "the side-effects aren't worth it".

So what do I say to that? Should I have insisted that they put me on them anyway? Should I have changed medical professionals if they refused? That's what I've heard said to others when they've run into this with their doctor.

This same standard is not applied for LDN.

Yes, it is our lives, and we have the right to research, discuss, and make this decision for ourselves. That's what I did, and I happened to agree with my doctor/neuro, in the end.

We don't need to be doctors to understand the risks and make an informed decsion for ourselves. It is OUR lives after all.

Cherie
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lady_express_44



Joined: 22 May 2006
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PostPosted: Fri Aug 04, 2006 5:03 pm    Post subject: Reply with quote

Matt wrote:

I really don't believe in doing statistics on anecdotally reported evidence.

To me, the most important statistic is the 50% reduction in moderate to severe flare-ups. I have had quite a number of flares since I started Beta, but they have all been mild. Moderate to severe flares have a tendency not to remit completely. So, Betaseron might be partially responsible for why I am doing so well.


To me, the most important statistic is how I am doing, personally with my drug of choice.

We already know that people can have relapses without a change in their MRI, or have no relapses but show changes in their MRI. They also can progress in disability with no apparent activity. In other words, relapses and disability don't necessarily correlate anyway.

The only useful information the trials provided, in my opinion, is that they determined "averages" by which we can guage our progress. For instance, if someone is on the CRABs, and still experiencing more then one relapse a year, or severe relapses, then there's a good chance, the drug probably is not working that well for them. However, when that happens, people say "but, but, but . . . you don't know how much worse you would be without the drug". It's a catch-22, isn't it?

I haven't had a relapse since I started on LDN and was getting them every three months prior to that. No matter who you talk to - those on LDN, or those on any other drug - absolutely EVERYTHING they report is "anecdotal". That's all any of us have got to go by.

Cherie
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Matt



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PostPosted: Fri Aug 04, 2006 5:15 pm    Post subject: Reply with quote

lady_express_44 wrote:
Matt wrote:
I agree with this. This is why people who aren't doctors should not try too hard to influence other people's medication decisions. It can potentially be quite harmful.


It's funny to hear people discuss this, Matt.

On one had, some will say "the decision is between you and your neuro" about these drugs, but when that doesn't work to THEIR satisfaction, you hear all kinds of bitching and complaining that it is "our right" to make the decision.

For instance, there are quite a few people who are being discouraged (by their doc/neuro) from using Tysabri at the moment, but everyone gets up in arms about that.

Yet, when we are talking about our right to discuss and obtain LDN, then it becomes "you are not a doctor". scratch

My prior Neuro (for 13 yrs) works out of one of the largest MS Research Centers in the world, and many of the CRAB trials were done there. Both he and my doctor recommended I do NOT take CRABs because they said, in short, "they do not help that many people", and "the side-effects aren't worth it".

So what do I say to that? Should I have insisted that they put me on them anyway? Should I have changed medical professionals if they refused? That's what I've heard said to others when they've run into this with their doctor.

This same standard is not applied for LDN.

Yes, it is our lives, and we have the right to research, discuss, and make this decision for ourselves. That's what I did, and I happened to agree with my doctor/neuro, in the end.

We don't need to be doctors to understand the risks and make an informed decsion for ourselves. It is OUR lives after all.

Cherie


You do raise some good points, Cherie.

We should ALL try to be as accurate as we can be in how we portray things.

There is a fair amount of anecdotal evidence for LDN. Some drugs, for which there is a fair amount of anecdotal don't show any benefit in clinical trials, others do.

The CRABs only reduce the relapse rate by 30%.

We should all try not to be too biased in our representations. It is very healthy to investigate one's own treatment options.
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Matt



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PostPosted: Fri Aug 04, 2006 5:18 pm    Post subject: Reply with quote

lady_express_44 wrote:

The only useful information the trials provided, in my opinion, is that they determined "averages" by which we can guage our progress. For instance, if someone is on the CRABs, and still experiencing more then one relapse a year, or severe relapses, then there's a good chance, the drug probably is not working that well for them. However, when that happens, people say "but, but, but . . . you don't know how much worse you would be without the drug". It's a catch-22, isn't it?


Totally true. There's no way to know if these drugs are working or not. It's a tough situation for all of us.
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mmcc



Joined: 27 May 2006
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PostPosted: Fri Aug 04, 2006 5:20 pm    Post subject: Reply with quote

lady_express_44 wrote:
mmcc wrote:
I am curious about why some say LDN is hard to get. My daughter had not problem at all.


Your daughter was lucky then, as it can still be difficult to get the rx.

If someone else has paved the way (as is the case at my Neuro now), people can get it. But, there are still some who refuse to prescribe it because it is not a mainstream drug. Some doctors will not overstep the neuro either.


So it is not that it is hard to get the scrip filled, it is hard to find someone to prescribe it?

lady_express_44 wrote:
mmcc wrote:
Also, the 10% is wrong - the FDA site or the drug company sites have the data. For Tysabri the reduction is 68%.


What does that 68% represent, and how is that calculated, mmcc?


Reduction in relapses - and it from the FDA approved information on Tysabri. The original information, of course, is from the clinical trials. Its done the same way all blinded trials are - the relapses for those on placebo are counted and computed "per person" and the same is done for those who were on Tysabri. How else would they be computed?


lady_express_44 wrote:
... For instance, there are quite a few people who are being discouraged (by their doc/neuro) from using Tysabri at the moment, but everyone gets up in arms about that.

Yet, when we are talking about our right to discuss and obtain LDN, then it becomes "you are not a doctor".


I am not the one urging an end to the "discussion." It is you and others who get up in arms when someone disagrees. If you mean the right to post stuff about LDN unchallenged by anyone, then you are in the wrong place.

As to "obtaining" LDN, I don't think anyone has challenged that. I asked a QUESTION about it because my PERSONAL experience was that there was no problem. It is not illogical to ask what exactly the problem is.

The issue with Tysabri has been that the people wanted the FDA to make the drug available. LDN IS available for doctors to prescribe. For the past year, Tyasabri was not. Tysabri has a much better safety record than many, many drugs already on the market with no black box warning.

I have not seen people urging others to "make" their doctors give them Tysabri or other specific drugs.

What I have seen (and agree with) is posters urging people to get on any one of the CRABs to head of future disability. That is the standard promulgated by the NMSS and the MS doctors' group (can't remember the name) - that early treatment can head off disability.

There is no reason that LDN cannot be take along with these drugs as far as I know.

The hostility is not towards LDN, it is towards urging people to drop the CRABs and switch to an unproven drug.

You are also giving wrong information about the success rate of the CRABs - if you are going to argue the point using the numbers, then the numbers should be accurate - and they are easy to get. Go to the drug's web site and they will have the FDA approved clinical trial numbers.

No one is suggesting that the CRABs will work for everyone - they didn't for me, for example, but they work for a substantial number of people and are the best first line of defense going.

As to LDN, you keep seeming to want to make me appear hostile toward it. I have repeatedly told you (this forum and BT) that my own daughter tried it. I supported that decision as did her neuro, but she did not stop trying the more proven therapies.

However, I still consider it very irresponsible to urge people to drop CRABs, especially by misquoting numbers, in favor of unproven LDN.

WE all have done lots of research on MS, but if any of us think that that is a substitute for the massive numbers of years MS specialists went to school full time, then we are delusional.

I grill doctors and sometimes disagree with them and ultimately make up my own mind, but I try not to lose sight of the fact that they have spent a helluva lot more time than me studying MS and other neurological conditions.

Reading on the internet will never be the same as a medical education. I will always give a board certified specialist more credence than anyone on any forum on the internet.
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lady_express_44



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PostPosted: Fri Aug 04, 2006 5:25 pm    Post subject: Reply with quote

mmcc wrote:
lady_express_44 wrote:
mmcc wrote:
Also, the 10% is wrong - the FDA site or the drug company sites have the data. For Tysabri the reduction is 68%.


What does that 68% represent, and how is that calculated, mmcc?


Reduction in relapses - and it from the FDA approved information on Tysabri. The original information, of course, is from the clinical trials. Its done the same way all blinded trials are - the relapses for those on placebo are counted and computed "per person" and the same is done for those who were on Tysabri. How else would they be computed?


Please give me the calculation for this "68%" number, mmcc.

I can provide it, but I don't think YOU know how this was calculated, which is my WHOLE point.

Cherie
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mmcc



Joined: 27 May 2006
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Location: Maryland

PostPosted: Fri Aug 04, 2006 5:39 pm    Post subject: Reply with quote

lady_express_44 wrote:
mmcc wrote:
lady_express_44 wrote:
mmcc wrote:
Also, the 10% is wrong - the FDA site or the drug company sites have the data. For Tysabri the reduction is 68%.


What does that 68% represent, and how is that calculated, mmcc?


Reduction in relapses - and it from the FDA approved information on Tysabri. The original information, of course, is from the clinical trials. Its done the same way all blinded trials are - the relapses for those on placebo are counted and computed "per person" and the same is done for those who were on Tysabri. How else would they be computed?


Please give me the calculation for this "68%" number, mmcc.

I can provide it, but I don't think YOU know how this was calculated, which is my WHOLE point.

Cherie


If your WHOLE point is to make me look stupid, then there is no point to this discussion after all. I guess I AM stupid. I thought the WHOLE point was to discuss LDN.

Please pardon my idiocy.

I know how it was calculated, and frankly, I think the FDA can calculate it a lot better than you. The number came straight from a FDA approved presentation and you are free to look it up on either the Tysabri or the FDA site.
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agate
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PostPosted: Fri Aug 04, 2006 6:24 pm    Post subject: Reply with quote

lady_express_44 wrote:

Quote:
Please give me the calculation for this "68%" number, mmcc.

I can provide it, but I don't think YOU know how this was calculated, which is my WHOLE point.



Cherie, there's no mistaking the tone of these remarks. This is the tone that gets people's hackles up, here and on other boards. I found a post of yours claiming to have had "tons" of experience with people with MS, for instance.

You're thinking of yourself as having far more expertise than other people on MS boards. Is it just faintly possible that that might not always be true?

I'm sure mmcc knows what she's talking about. I've never known her not to. If she doesn't know the subject, she says nothing.

Cherie, your insulting tone needs modification.
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lady_express_44



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PostPosted: Fri Aug 04, 2006 7:09 pm    Post subject: Reply with quote

agate wrote:
Cherie, there's no mistaking the tone of these remarks. This is the tone that gets people's hackles up, here and on other boards.

I'm sure mmcc knows what she's talking about. I've never known her not to. If she doesn't know the subject, she says nothing.

Cherie, your insulting tone needs modification.


I asked how the numbers were calculated, because she said/implied I was "wrong", "irresponsible", "dillusional" and providing "inaccurate information."

mmcc wrote:

Also, the 10% is wrong - the FDA site or the drug company sites have the data.

For Tysabri the reduction is 68%.


mmcc wrote:
Reduction in relapses - and it from the FDA approved information on Tysabri. The original information, of course, is from the clinical trials. Its done the same way all blinded trials are - the relapses for those on placebo are counted and computed "per person" and the same is done for those who were on Tysabri. How else would they be computed?

You are also giving wrong information about the success rate of the CRABs - if you are going to argue the point using the numbers, then the numbers should be accurate - and they are easy to get. Go to the drug's web site and they will have the FDA approved clinical trial numbers.

However, I still consider it very irresponsible ... by misquoting numbers...

WE all have done lots of research on MS, but if any of us think that that is a substitute for the massive numbers of years MS specialists went to school full time, then we are delusional.


If mmcc has the gull to accuse me of being wrong, she'd best be able to back that up by explaining what that "advertised" information means to us.

The whole point is that people rely on those marketing stats (yes, I can read the marketing information as well as anyone else). They don't even try to figure out what that really means, but they spout off at someone who has analyzed the information (?).

What I said was accurate.

Since she didn't not adequately answer the precise question the first time:

lady_express_44 wrote:

What does that 68% represent, and how is that calculated, mmcc?


And, since she also implied/said my information was wrong, irresponsible, dillusional, etc., I hardly think I was giving her "tone" by saying:

lady_express_44 wrote:
Please give me the calculation for this "68%" number, mmcc.

I can provide it, but I don't think YOU know how this was calculated, which is my WHOLE point.


Cherie
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pals1107



Joined: 22 Jul 2006
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PostPosted: Fri Aug 04, 2006 8:10 pm    Post subject: Reply with quote

Just something I was once told by a doctor, in reguards to ovarian cancer.

It's 100%, %'s meen nothing, either you do or you don't it's 100% either way. He said he doesn't believe in precentages, that's rare for a doc, usually that is all they want to talk precentages, or typical, commonly, usually.

In other words, they haven't a clue, and everyone is different, best guess.

mccc wrote:
WE all have done lots of research on MS, but if any of us think that that is a substitute for the massive numbers of years MS specialists went to school full time, then we are delusional.

I grill doctors and sometimes disagree with them and ultimately make up my own mind, but I try not to lose sight of the fact that they have spent a helluva lot more time than me studying MS and other neurological conditions.

Reading on the internet will never be the same as a medical education. I will always give a board certified specialist more credence than anyone on any forum on the internet.


You give the medical profession a hell of a lot more credit than I do!

I have been appalled at some of the things doctors don't know! Why do you think so many people die in hospitals? Because they don't have all the answers, or know that much, don't listen to their patient, or believe them, or a great number don't care enough to take the time necessary, because of MONEY.

I trust what I read on the internet, (written by doctors and by people who have that specific disease) more than anything one of the doctors I have seen has to say.

Many people die because they trust their doctors, they have no clue about their own health. Especially the elderly.

Trust them, believe their monatary based suggestions of drugs, fat chance here.

Yes I am cynical, if you lived my life you would be too.
Pat
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mmcc



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PostPosted: Fri Aug 04, 2006 9:16 pm    Post subject: Reply with quote

pals1107 wrote:
...You give the medical profession a hell of a lot more credit than I do!

Probably not as much more as you think, actually. However, I don't ASSUME that I know more. I ASSUME they know more and then I research it. to see if that assumption seems justified.

pals1107 wrote:
I have been appalled at some of the things doctors don't know!

Yes, me too, but remember half of them graduated in the bottom half of their class. On the other hand, remember that 1/2 of us have lower than average IQ's too.

pals1107 wrote:
Why do you think so many people die in hospitals?


Because when people are very sick they tend to be in hospitals, not at home.

pals1107 wrote:
Because they don't have all the answers, or know that much, don't listen to their patient, or believe them, or a great number don't care enough to take the time necessary, because of MONEY.


I agree with each of these statements for SOME doctors. I am especially sick of those who do not listen and tend to blow women off as suffering from stress.

pals1107 wrote:
I trust what I read on the internet, (written by doctors and by people who have that specific disease) more than anything one of the doctors I have seen has to say.


This is where we strongly disagree. The internet is full of misinformation.

pals1107 wrote:
Many people die because they trust their doctors, they have no clue about their own health. Especially the elderly.


I have an elederly mother who delayed obviously needed treatment for about 2 years because she wanted to believe the doctor treating her and didn't trust the doctor she should have been seeing. Finally she went to the correct doctor and is on the way to a much better quality of life. Whose fault is it? Hers or the first doctor's? I think part of it is old age. My mother has a PhD and is extremely intelligent, and it is hard to believe she acted this way.

On the other hand, the first doctor should have sent her on to a specialist a long time ago. In fairness, I am not sure he didn't. It is possible my mother ignored the advice.

pals1107 wrote:
Trust them, believe their monatary based suggestions of drugs, fat chance here.

I don't think most doctors are motivated by money. Of course there are some. I think some get an inflated ego which gets in the way of their judgement.

pals1107 wrote:
Yes I am cynical, if you lived my life you would be too.


I don't know about your life, but I do know about mine. I am ready to strangle some of the doctors who blew one of my daughters off as a stressed out nut case when low and behold there were some real thoroughly diagnosable and proveable medical problems. On the other hand, my doctor is excellent.

The consumer has to take charge of their own medical care, but it doesn't mean assuming the intenet is full of accurate information and the doctors know nothing.

I think the biggest problem is neither the doctors nor the patients, but the way the medical system is constituted now in the US. When you have a complex problem, there is no one doctor who is consolidating the information and therefore fully able to realize that the problems each specialist is seeing are related. The "referral" system and managed care conspire people from not being able to go see who they need to when they need to.

The doctors are operating on partial information, the patients are incredibly frustrated and sometimes don't bother going because it is SO difficult (which I do believe is one reason for the referral system) and so much money is eaten up by the administrative and insurance company oversight that doctors are not paid what they should be for their time and therefore see too many patients.

On top of that they have so many idiotic forms to fill out that are eating up time. They did not go to school for 15 years to fill out forms and their patients are not well served by having their time eaten up with that nonsense when they should be seeing us.

Like many others I had to shop around for a good neuro - and I am lucky I found one.
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pals1107



Joined: 22 Jul 2006
Posts: 61
Location: Shelby Twp. Michigan

PostPosted: Fri Aug 04, 2006 9:40 pm    Post subject: Reply with quote

mccc, they just had a thing on the news about hospitals are no place for the sick, most medical mistakes are made there.

HMO doctors are rewarded with bonus' for not doing too many tests, and the average office visit is recomended to be 7 minutes.

Seven minutes every 3-6 months, how much quality can come out of that?

Ok enough of that back to the topic.

I wish I was better at the "facts" but my perfectly healthy self has difficulty with being tired and not being able to rub to clear complete thoughts together. Besides I use all my energy just to work.

And I think by now I wouldn't be doing that if it wasn't for the LDN. 8 months now, and no intence attacks of whatever. The year prior to LDN I had one MAJOR attack of 5 1/2 months, and two simi bad ones of 2-3 months duration.

I have my times when I don't do too well, but compared to before, well there is no comparison.

When I look back at that BIG one, I don't know how I worked and I should NOT have been spending 75% of my work day driving. But I didn't reilize how bad I was at the time and I was more focused on my husbands disease.

I was telling the doctors what I was going through, but they didn't believe me, and consquently no tests were run during this time, except one abnormal CT scan by an ER.

I will continue to get LDN, by any means possible.
Pat
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mmcc



Joined: 27 May 2006
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PostPosted: Fri Aug 04, 2006 9:54 pm    Post subject: Reply with quote

On the off chance that some of us are still interested in the topics being discussed here, Here are some direct quotations (along with the sources) of some of the things being discussed here, including how the reduction in relapses is computed, why to start on CRABs, etc.

Source:

http://www.fda.gov/bbs/topics/news/2004/NEW01141.htl

Tysabri was evaluated for safety and efficacy in two ongoing randomized, double-blind, placebo-controlled trials in patients with relapsing forms of MS. In the first clinical trial of the product's safety and efficacy, the drug reduced the frequency of relapses by 66 percent relative to placebo.

Source: http://www.tysabri.com/product-information.html

The CLINICAL STUDIES section of the prescribing information was revised based on
the 2-year results of the TYSABRI ® clinical trial program in multiple sclerosis. In the
monotherapy study, TYSABRI ® (n=627) was shown to reduce the relative risk of
sustained increase in disability by 42%, compared with placebo (n=315). Seventeen
percent of TYSABRI ® -treated patients demonstrated sustained increase in disability as
compared with 29% of placebo-treated patients. In this study, TYSABRI ® also caused
a relative reduction in the annualized relapse rate of 67% to a rate of 0.22 as compared
with a rate of 0.67 in the placebo-treated patients.


http://www.biogen.com/site/019_0.html

TYSABRI Shows Improvement in Quality of Life Assessments (just some additional information)

In the two Phase III TYSABRI clinical trials, AFFIRM and SENTINEL, QoL was assessed using three different measures, the Multiple Sclerosis Quality of Life Inventory (MSQLI), the Short Form-36 Health Survey (SF-36), which is a component of the MSQLI, and a Visual Analogue Scale (VAS). The MSQLI is an MS-specific battery of 10 scales that measure disease impact on QoL including, fatigue, pain, sexual function, bowel and bladder function, visual impairment, mental health and need for social support. SF-36 is comprised of 36 questions designed to assess patients' physical and mental well-being. General well-being was also measured using the VAS.

In the AFFIRM monotherapy study, patients in the TYSABRI-treated group realized a significant improvement in physical measures of the SF-36 compared with a decline in the placebo-treated group (p=0.003). A significant improvement was also seen in the mental component of the SF-36 in patients treated with TYSABRI compared with a decline in the placebo-group (p=0.011). Significant benefits were also seen using the VAS (p=0.007). Improvements on quality of life measures were also observed in the SENTINEL study, in which TYSABRI was added to AVONEX® (Interferon beta-1a).
TYSABRI Impacts Measures of Visual Function

In another analysis of the AFFIRM and SENTINEL data, patients treated with TYSABRI had a reduction in the risk of visual decline as measured by contrast testing compared to control. Loss of visual function is one of the most common causes of disability and lower QoL in MS patients. Low contrast letter acuity was a pre-specified endpoint in both studies. Recent studies have demonstrated that low contrast letter acuity (perception of light gray letters of progressively smaller size on a white background) is a more sensitive measure of visual dysfunction in MS than traditional measures.
TYSABRI Impacts Measures of Disability Progression

The primary efficacy endpoint of AFFIRM and SENTINEL at two years was the rate of disability progression sustained for three months as measured by the Expanded Disability Status Scale (EDSS). Additional measures of disability included the Multiple Sclerosis Functional Composite (MSFC), which consists of three tests that evaluate ambulation, upper extremity dexterity and cognitive function.

In AFFIRM, treatment with TYSABRI led to a 42% reduction in the risk of disability progression compared to placebo (p=0.0002). TYSABRI was also associated with significant delay in progressing to EDSS of 4.0 (ambulatory with moderate disability) and 6.0 (requiring a cane, crutch or brace). TYSABRI treatment also had a significant impact on all subscales of the MSFC, including the Paced Auditory Serial Addition Test (PASAT), a measure of cognitive function (p=0.005).
--------------------------------------------------------------------------------------------

Source:

http://www.fda.gov/bbs/topics/news/2004/NEW01141.html

Tysabri was evaluated for safety and efficacy in two ongoing randomized, double-blind, placebo-controlled trials in patients with relapsing forms of MS. In the first clinical trial of the product's safety and efficacy, the drug reduced the frequency of relapses by 66 percent relative to placebo.

Source: http://www.nationalmssociety.org/Brochures-Comparing.asp

Before the news is fully absorbed, people with MS face a decision about taking a ?disease-modifying? drug. The Society?s Medical Advisory Board agrees that these medications are most effective when started right after a definitive diagnosis, before the disease has the opportunity to cause significant damage.

The medications reduce the number of days a person might be actively ill with an attack of symptoms; they reduce or even eliminate the accumulation of lesions, or damaged areas, within the central nervous system as seen on MRI; and they appear to slow down the accumulation of disabilities. A clear correlation between MRI findings and a patient?s functional status has not yet been demonstrated. Even so, these drugs are the best defense currently available to put the brakes on MS and slow down its natural course.
[/u}

BENEFITS OF THE DISEASE-MODIFYING DRUGS

Reducing the frequency and severity of attacks
Most users of a disease-modifying drug have fewer and less severe MS attacks (also called relapses or exacerbations). In individual clinical trials using a drug versus an inactive placebo treatment,[U] MS attacks were reduced by 28% to 66% by different agents. Most users were found to have fewer, smaller, or no new lesions developing within the central nervous system as seen by MRI scans.


SOURCE: http://www.nationalmssociety.org/Sourcebook-Early.asp

The National MS Society's
Disease Management Consensus Statement
Summary

From The MS Information Sourcebook, produced by the National MS Society.

This document was written prior to the June 2006 approval of Tysabri's return to market for relapsing MS. It will be modified as soon as possible to reflect the addition of Tysabri to the list of FDA-approved treatment options for MS.

Introduction
The Consensus Statement is an education and advocacy tool that is used to promote increased access to the approved disease-modifying therapies. It serves as a communication device for interactions with insurers at the local and national level. The goal of the Consensus Statement is to help ensure that all those who are appropriate candidates for these medications have access to them as early in the disease process as possible.

Disease-Modifying Medications

Immunomodulators (medications designed to modify the immune system in order to alter the course of MS):

* beta interferon 1a-intramuscular (Avonex®)
* beta interferon 1a-subcutaneous (Rebif®)
* beta interferon 1b (Betaseron®)
* glatiramer acetate (Copaxone®)

Immunosuppressant (medication designed to shut down the immune system temporarily in order to alter the course of MS):

* mitoxantrone (Novantrone®)

Rationale

The disease-modifying therapies have demonstrated the following positive outcomes in people with relapsing forms of MS:

* Reduction in the frequency and severity of relapses (also known as attacks or exacerbations)
* Reduction in the numbers of brain lesions as shown on MRI
* Possible reduction in future disability

Treatment early in the disease course is important because:

* Numerous studies have demonstrated that irreversible damage to nerve axons can occur during early relapses.
* Studies have also shown that lesions can develop and brain atrophy can occur even in those individuals who are not experiencing any symptoms or relapses.

Recommendations

Based on these findings, it is the consensus of researchers and clinicians with expertise in MS that these agents can reduce future disease activity and improve quality of life for many individuals with relapsing forms of MS, including those with secondary progressive disease who continue to have relapses. Therefore, the Executive Committee of the Medical Advisory Board of the National Multiple Sclerosis Society has adopted the following recommendations:

* Treatment should be considered as soon as possible following a definite diagnosis of MS with active disease (i.e., recent relapses and/or new lesions on MRI), and may also be considered for some patients with a first attack who are at high risk of developing MS (known as clinically isolated syndrome).

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lady_express_44



Joined: 22 May 2006
Posts: 1314
Location: Vancouver, Canada

PostPosted: Fri Aug 04, 2006 10:22 pm    Post subject: Reply with quote

mmcc wrote:
the drug reduced the frequency of relapses by 66 percent relative to placebo.


That is what I said:

lady_express_44 wrote:

No it's not, Matt . . . and that is my point in openly discussing the "advertised" CRAB stats.

The 30% is a RELATIVE number; relative to placebo.

In ABSOLUTE numbers, only 10% of the people saw benefit.


The 68% (or 66%) is relative to placebo . . . NOT absolute, just like the 30% figure for the CRABs.

But what does this mean? Can most people put into words what that actually means to us?

Even if we were THE "perfectly average" person, we would NOT see a 68% reduction in relapses, since placebo (whatever that % was) also saw a reduction in relapses.

How many people on placebo saw a reduction?

How many people on Tysabri saw a reduction?

The difference between these is the truest amount of people, on average, that may see this benefit.

It's just a fancy/legal way of making things look better. (Did you read that article I posted mmcc).

Of course this is all AVERAGES too, and as my stats teacher used to say, "on average, every man, woman, and child has one breast, and one testicle".

And, that only relates to relapses. What about disability progression, which was the primary measure of that trial. Do you know what the stat for that was? Certainly didn't correlate with a reduction in relapses.

But, at the end of the day, what matters is having an understanding the choices, what the data means to us, evaluating risks . . . and ultimately how we fair as individuals on our drug of choice.

I have done the research. I am doing very, very well on LDN, as are so many other people.

Cherie
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mmcc



Joined: 27 May 2006
Posts: 159
Location: Maryland

PostPosted: Sat Aug 05, 2006 9:02 am    Post subject: Reply with quote

lady_express_44 wrote:
Of course this is all AVERAGES too, and as my stats teacher used to say, "on average, every man, woman, and child has one breast, and one testicle".

You need a new teacher. On average, every man woman and child has 2 breasts, not one.

lady_express_44 wrote:
mmcc wrote:
the drug reduced the frequency of relapses by 66 percent relative to placebo.


That is what I said


What exactly would the reduction be relative to if not no treatment (placebo)??????? That is the STANDARD - the SCIENTIFIC STANDARD - and CORRECT way of reporting results. What else did you have in mind?

lady_express_44 wrote:
The 30% is a RELATIVE number; relative to placebo.

Again, these are not the "advertised" (as in made up) numbers. These are the FDA and SCIENTIFIC approved menthods of reporting results.

lady_express_44 wrote:
The 68% (or 66%) is relative to placebo . . . NOT absolute, just like the 30% figure for the CRABs.

What do you mean by absolute? The average MS patient is going to have a given number of exacerbations in a year. I believe the number is about .8. For those on Tysabri, the number is about .25.

What that means is that ON AVERAGE, a person will go from having an exacerbation every 15 months to once ever 4 years...... Not bad odds.

OF COURSE some people on placebo will have 12 a year and some will have none.

If you mean that taking Tysabri will guarantee that you will have 68% fewer exacerbations, of course the answer is no. If it means that a group of 100 MSers will have 68% fewer exacerbations as a group, the answer is yes.

How else would you measure effectiveness. If the answer is NO exacerbations then you are tallking cure, and even the LDN advocates don't claim that.

lady_express_44 wrote:
Even if we were THE "perfectly average" person, we would NOT see a 68% reduction in relapses, since placebo (whatever that % was) also saw a reduction in relapses.


That is NOT what it means - The number of patients taking Tysabri had (as a whole) 68% fewer relapses than which would have occured without Tysabri (the number of those taking no drug.

Of course it does not mean that EVERYONE had 68% fewer relapses.

As an example, suppose you and my daughter were the only two in a trial taking LDN. Two others took nothing. You saw 100% improvement. She saw 0. Those doing nothing saw 0.

The results would be reported (correctly) as a 50% improvement for the group as a whole. That doesn't mean you both had 50% improvement. In fact neither of you had a 50% improvement. It means that as a GROUP you saw an average improvement of 50%

lady_express_44 wrote:
How many people on placebo saw a reduction?

How many people on Tysabri saw a reduction?


The numbers are given in the data - go to the web sites I cited.

The difference between these is the truest amount of people, on average, that may see this benefit.

lady_express_44 wrote:
It's just a fancy/legal way of making things look better.
Actually, if you look at the raw number, even using your way of looking at it the figures are impressive. A lot of people had no relapses whatsoever.

lady_express_44 wrote:
And, that only relates to relapses. What about disability progression, which was the primary measure of that trial. Do you know what the stat for that was? Certainly didn't correlate with a reduction in relapses.


The numbers are in the web sites I sighted. If you are not going to favor us with cut and pastes, you can't really expect me to either.[/quote]
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Sweetyhide



Joined: 26 Jun 2006
Posts: 131

PostPosted: Sun Aug 06, 2006 3:13 am    Post subject: Reply with quote

Disclamier: This is how I feel.
I make no claims and can back up no information (other than the copaxone study)because the little woman that lives in my head says this is true:


In all honesty I am not holding all my hopes on LDN stopping progression. I have a gut feeling that it does, but since it isnt documented yet i have back up, Copaxone. This doesn't mean that I don't have a right to try a safe FDA approved drug (offlabel).

The ten year study on Copaxone showed that 91% are still walking unaided. Sound fantastic to me.

Copaxone is the only crab "recommended" to take with LDN. (although I have heard people taking it with others) So it's a nice combination to me.

Pros-

Copaxone:
  • Low or no side affects
  • good long term record for slowing/stopping progression
  • At this time, proven

LDN:

  • Low risk
  • Well known in helping symptom relief
    (there isn't any ONE medication out there that helps with most of the MS sx's. I hate having to take so many pills.)
  • No side affects (for me)
  • Cheap - even without insurance
  • Possibly stops progression.

Cons-

Copaxone:
  • Shot every day (although I have started on every other day)
  • possibly over time, irregular areas of skin depression
  • Expensive

LDN:

  • No sufficient studies to back up antidotal evidence for MS
  • Hard for me to get a script


edited to add the study link for copaxone
(I hit reply too fast! )
http://www.thisisms.com/modules.php?name=News&file=article&sid=163
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lady_express_44



Joined: 22 May 2006
Posts: 1314
Location: Vancouver, Canada

PostPosted: Sun Aug 06, 2006 7:34 am    Post subject: Reply with quote

mmcc wrote:
lady_express_44 wrote:
Of course this is all AVERAGES too, and as my stats teacher used to say, "on average, every man, woman, and child has one breast, and one testicle".

You need a new teacher. On average, every man woman and child has 2 breasts, not one.

lady_express_44 wrote:
mmcc wrote:
the drug reduced the frequency of relapses by 66 percent relative to placebo.


That is what I said


What exactly would the reduction be relative to if not no treatment (placebo)??????? That is the STANDARD - the SCIENTIFIC STANDARD - and CORRECT way of reporting results. What else did you have in mind?

lady_express_44 wrote:
The 30% is a RELATIVE number; relative to placebo.

Again, these are not the "advertised" (as in made up) numbers. These are the FDA and SCIENTIFIC approved menthods of reporting results.

lady_express_44 wrote:
The 68% (or 66%) is relative to placebo . . . NOT absolute, just like the 30% figure for the CRABs.

What do you mean by absolute? The average MS patient is going to have a given number of exacerbations in a year. I believe the number is about .8. For those on Tysabri, the number is about .25.

What that means is that ON AVERAGE, a person will go from having an exacerbation every 15 months to once ever 4 years...... Not bad odds.

OF COURSE some people on placebo will have 12 a year and some will have none.

If you mean that taking Tysabri will guarantee that you will have 68% fewer exacerbations, of course the answer is no. If it means that a group of 100 MSers will have 68% fewer exacerbations as a group, the answer is yes.

How else would you measure effectiveness. If the answer is NO exacerbations then you are tallking cure, and even the LDN advocates don't claim that.

lady_express_44 wrote:
Even if we were THE "perfectly average" person, we would NOT see a 68% reduction in relapses, since placebo (whatever that % was) also saw a reduction in relapses.


That is NOT what it means - The number of patients taking Tysabri had (as a whole) 68% fewer relapses than which would have occured without Tysabri (the number of those taking no drug.

Of course it does not mean that EVERYONE had 68% fewer relapses.

As an example, suppose you and my daughter were the only two in a trial taking LDN. Two others took nothing. You saw 100% improvement. She saw 0. Those doing nothing saw 0.

The results would be reported (correctly) as a 50% improvement for the group as a whole. That doesn't mean you both had 50% improvement. In fact neither of you had a 50% improvement. It means that as a GROUP you saw an average improvement of 50%

lady_express_44 wrote:
How many people on placebo saw a reduction?

How many people on Tysabri saw a reduction?


The numbers are given in the data - go to the web sites I cited.

The difference between these is the truest amount of people, on average, that may see this benefit.

lady_express_44 wrote:
It's just a fancy/legal way of making things look better.
Actually, if you look at the raw number, even using your way of looking at it the figures are impressive. A lot of people had no relapses whatsoever.

lady_express_44 wrote:
And, that only relates to relapses. What about disability progression, which was the primary measure of that trial. Do you know what the stat for that was? Certainly didn't correlate with a reduction in relapses.


The numbers are in the web sites I sighted. If you are not going to favor us with cut and pastes, you can't really expect me to either.


You don't seem to be able to comprehend the analysis, mmcc. If I truely believed you would take the time to try to understand, I would make the effort to detail it in another way. But...

I doubt I can explain the concept any more simply than what was in Art's article, and I have been saying the same thing for a long time before he wrote that. Matt may recall from Braintalk . . .

LDN may never see the clinical trials it needs to prove itself scientifically, but Naltrexone has a long-standing and solid safety record in the medical community.

It works:

- for symptoms
- to stop attacks
- to slow progression

for a lot of people.

Most importantly, it works for ME, and many of those who are open-minded enough to give it a try. That's ALL that matters at the end of the day.

Cherie
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beachbaby



Joined: 18 Jun 2006
Posts: 86

PostPosted: Sun Aug 06, 2006 7:40 am    Post subject: Reply with quote

lady_express_44 wrote:
Of course this is all AVERAGES too, and as my stats teacher used to say, "on average, every man, woman, and child has one breast, and one testicle".

mmcc wrote:
You need a new teacher. On average, every man woman and child has 2 breasts, not one.



I think that the stats teacher meant that women/females have 'breasts' and that males have testicles. that would give the average of every man, woman, and child having 1 breast and one testicle.

VERY GOOD EXAMPLE of how it definetely shows how statistics can be biased in favor of how the investigator wants them to be.
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lady_express_44



Joined: 22 May 2006
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PostPosted: Sun Aug 06, 2006 7:57 am    Post subject: Reply with quote

Yes, BB . . . that's what he meant.

I guess he could have said "tits" instead of breasts, but was trying to be a little discreet. I'm sure he'd get a kick out of hearing that someone found a way to debate his example though.

Cherie
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mmcc



Joined: 27 May 2006
Posts: 159
Location: Maryland

PostPosted: Sun Aug 06, 2006 8:44 am    Post subject: Reply with quote

beachbaby wrote:
lady_express_44 wrote:
Of course this is all AVERAGES too, and as my stats teacher used to say, "on average, every man, woman, and child has one breast, and one testicle".

mmcc wrote:
You need a new teacher. On average, every man woman and child has 2 breasts, not one.



I think that the stats teacher meant that women/females have 'breasts' and that males have testicles. that would give the average of every man, woman, and child having 1 breast and one testicle.

VERY GOOD EXAMPLE of how it definetely shows how statistics can be biased in favor of how the investigator wants them to be.


Also a VERY GOOD EXAMPLE of how stats can be misquoted without thinking them through.

Allowing that maybe the person meant "developed breasts," - in which case that's what should have been said - the example is still not good.

Very few children - male or female - have developed breasts. The "answer" would still not be an "average" or one.

This is an excellent illustration of not thinking statistics through. One of my favorite books is called "Lying with Statistics,"

Point is made - what at first flush sounded like a kind of fun way to point out a problem with using "averages" is in itself incorrect - no mattter how you interpret it.

If you look at statistics, mean, median, etc. are all other methods of interpreting findings that are actually used more often than "average" in scientific reports.
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mmcc



Joined: 27 May 2006
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PostPosted: Sun Aug 06, 2006 8:56 am    Post subject: Reply with quote

lady_express_44 wrote:
You don't seem to be able to comprehend the analysis, mmcc. If I truely believed you would take the time to try to understand, I would make the effort to detail it in another way. But...

I doubt I can explain the concept any more simply than what was in Art's article, and I have been saying the same thing for a long time before he wrote that. Matt may recall from Braintalk . . .


Interesting way to have a discussion/debate - ignore everything and just say "you just don't understand."

In fact I do understand. One article does not refute the only reasonable way to compare and assess clinical trials which has been developed by thousands of scientists and statisticians over many decades.

If you actually read why I wrote, I gave you the place to look at the NUMBER of people who had positive results from Tysabri - Even by the standards you want to employ, the drug works.

And one more time - where are the SCIENTFIC stats for LDN. You want to argue against the entire scientific community about what the results for the SCIENTIFIC tests show for all the other MS drugs, but expect people to accept your "feeling" and a few anecdocatal pieces of evidence for LDN.

How does that work? One standard for a drug you like, and a different one for all other drugs?

It sounds to me like Sweetyhide's approach is well thought through and sensible - take the tested drug with the best results (and which appears to work for her, since one CRAB may work better for one person than another) AND take LDN.

The reasoning is sound - the LDN appears to be low risk and not likely to do any harm. It might help, but at the same time keep taking the proven therapy.

That is all any of us are saying - don't discourage people to switch FROM an CRAB to LDN. Try the LDN in addition (understanding that risks to MSers are NOT tested).

I have tried other alternative therapies, like many of us, but I apply what I think is a sensible guideline - don't drop proven therapies to do it, but if the alternative is not likely to cause harm and has the possibility of doing some good, give it a try.

The Swank diet is an even clearer example than LDN - Many report good results and the diet itself is good for you (no harm). It didn't work for me, but it didn't hurt to try, either.
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beachbaby



Joined: 18 Jun 2006
Posts: 86

PostPosted: Sun Aug 06, 2006 11:10 am    Post subject: Reply with quote

mmcc wrote:
beachbaby wrote:
lady_express_44 wrote:
Of course this is all AVERAGES too, and as my stats teacher used to say, "on average, every man, woman, and child has one breast, and one testicle".

mmcc wrote:
You need a new teacher. On average, every man woman and child has 2 breasts, not one.



I think that the stats teacher meant that women/females have 'breasts' and that males have testicles. that would give the average of every man, woman, and child having 1 breast and one testicle.

VERY GOOD EXAMPLE of how it definetely shows how statistics can be biased in favor of how the investigator wants them to be.


Also a VERY GOOD EXAMPLE of how stats can be misquoted without thinking them through.

Allowing that maybe the person meant "developed breasts," - in which case that's what should have been said - the example is still not good.

Very few children - male or female - have developed breasts. The "answer" would still not be an "average" or one.

This is an excellent illustration of not thinking statistics through. One of my favorite books is called "Lying with Statistics,"

Point is made - what at first flush sounded like a kind of fun way to point out a problem with using "averages" is in itself incorrect - no mattter how you interpret it.

If you look at statistics, mean, median, etc. are all other methods of interpreting findings that are actually used more often than "average" in scientific reports.


exactly!!

However, remember that average and mean are the same thing!! So averages ARE used in interepting findings very often! Averages (means) are the least reliable; median and mode must also be taken into consideration when evaluting data.

ALL statistics can be skewed to favor whatever the researcher wants it to be. Noone should ever take ANY statistics with anything but a grain of salt.

I have more stats, research, quantitative analysis classes than anyone should ever have to take!! undergrad and 2 graduate degrees, ALL in areas that required heavy research. I need no lectures in that arena. LOL I am probably qualified to teach them at this point! but there is NO WAY I want to!
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