NMSS and LDN

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby HarryZ » Thu Apr 28, 2005 5:49 pm

I agree with you that this kind of short pilot trial would not be difficult to do but I point out one lousy fact....nobody has come forward to conduct one!!! No potential revenue income, no interest....very sad.

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2557
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Advertisement

Postby ramairdad » Thu Jun 09, 2005 9:47 am

Hi,
I'm currently taking LDN( 2.5 mg ) and have been on it for two weeks. I haven't noticed any major changes in my mobility, but have noticed that I don't get as run down at the end of the day. It's early and I'm going to keep on with it hoping I'll see some improvements in my symptoms. I'm just lucky my GP has an open mind. (he prescibed it) My nerou wouldn't because he said it was unproven. How will it ever be "proven" if nobody trys it? There haven't been any side effects that I know of at this time. I live in the US. I would try aimspro, if it were available here, I personally from what I've read, have good hopes for it. I hope Daval International reconsiders it and keeps studies up.
User avatar
ramairdad
Family Member
 
Posts: 26
Joined: Thu Jan 13, 2005 4:00 pm
Location: Danville, In

regarding the ThisIsMS response to the NMSS letter about LDN

Postby flyingpumpkin » Tue Mar 02, 2010 11:53 am

This "response by ThisIsMS.com" is riddled with holes. The MS society has no motives beyond helping people with MS, UNLIKE the charlatans that sell LDN on the internet.

1) arguing about whether LDN was approved since the "early 1990's" or "1995". Uh... the MS society is giving you the benefit of the doubt saying early 1990's while THisIsMS argues that it is "late" what is the point here? It is NOT approved for MS. Low-Dose Naltrexone is NOT APPROVED AT ALL. Not 10 years not 20 years

2) LDN has been marketed on the internet. YES IT HAS. why argue this? Just because some quack like Bernard Bihari sells it to make big $$$ doesn't mean it is "marketed for MS". Marketed means ADVERTISED. It is advertised on the internet. Also: Bernard Bihari is not an MS neurologist he is a PSYCHIATRIST and what he is doing in my opinion is malpractice.

3) LDN does not work "differently" than high dose naltrexone. In fact nobody has looked at it because it is NOT APPROVED BY THE FDA in that dose. So claiming some kind of way it works differently is a misunderstanding of science. If it works differently then they should publish a paper on how differently it works. There is no data at all, and that is the truth

4) The "dose" should be determined in a clinical dosing trial. This has never been done. Instead we determine the dose from some psychiatrist who randomly determined it in what looks like trying to give a lower dose to avoid any real effect he can be sued over rather than a dose that is effective. What if low dose means low effectiveness? how about NO dose Naltrexone?

5) THERE ARE NO PUBLISHED REPORTS demonstrating effectiveness of LDN as of the date of this article by the NMSS (even the Crohn's trial was not finished and therefore NOT PUBLISHED). Someone at ThisIsMS needs to learn how to read. The example cited is NOT A TRIAL!!!! it is a laboratory study in test tubes, not people and not a trial. Presently there are two tiny pilot studies in Crohn's and IBS and NOT MS. The pilot studies found no effect of LDN, but rather looked at side effects and safety

6) ThisIsMS' EXAMPLE OF A "TRIAL" in LDN is laughable. It is not a trial, it is a laboratory experiment on a tumor in a petrie dish. Duh.

7) In science we don't use the Merriam-Websters dictionary to determine ENHANCE. Enhance means to increase in science. That's why we don't have housewives respond to the National MS society. LDN claims it increases CD4+ t-cells in HIV patients (and Bihari evidently gives this to the unfortuante AIDS patients in his care). RAISING CD4+ t-cells is TERRIBLE for MS patients and exactly how MS damages your brain.

8) Immune suppression does better than reduce your MS 30%. ABCRs reduce by 30%. Tysabri reduces by 68%. Campath/Alemtizumab may be more. Don't forget we can only get to 100% improvement here...


The only "SLOPPY ILL-INFORMED ARTICLE" is the one written by ThisIsMS
User avatar
flyingpumpkin
Newbie
 
Posts: 1
Joined: Mon Mar 01, 2010 4:00 pm

Postby scorpion » Tue Mar 02, 2010 12:45 pm

Are you talking about the responses in this thread? I am not sure if you noticed but this discussion took place over five years ago. Better late than never I guess?? Tony
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Re: regarding the ThisIsMS response to the NMSS letter about

Postby HarryZ » Tue Mar 02, 2010 2:34 pm

Immune suppression does better than reduce your MS 30%. ABCRs reduce by 30%. Tysabri reduces by 68%. Campath/Alemtizumab may be more. Don't forget we can only get to 100% improvement here...


Hmmm, a response to a message from 5 years ago..gives a whole new meaning to being "timely"!!

If you want to believe that the CRAB drugs reduce your MS progression by 30%, go ahead. Even the MS docs these days won't buy that one anymore.

Same with Tysabri claimed at 68%. Only with Tysabri you are taking a chance of getting PML which of course turns your brain to mush. What started with a 1/1000 risk has climbed to 1/500 in Europe as the length of time people use this drug appears to increase the risk along with it.

Of course LDN doesn't have any major trial work done on it yet. Big pharma won't touch it because the drug is off patent and there's no money to be made. And for decades big pharma's interest in MS patients has strictly been from a "how much profit can we make" on the this drug.

Can you imagine if a LDN trial showed similar efficacy for MS patients than what the CRAB's showed. ? You would see some drug company CEO's jumping off the nearest bridge!

The only "SLOPPY ILL-INFORMED ARTICLE" is the one written by ThisIsMS


And the only person that would comment on an article written 5 years ago is to be trusted??!!!

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2557
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby chrishasms » Tue Mar 02, 2010 9:26 pm

I had Dr. Bowling. Worthless. Would spend 150 dollars to have him wiggle his finger in the air, tap a tuning fork, tell me anything I wanted to try he wouldn't be willing to RX, say the active lesions on my MRI were "no big deal", then send me on my way until the next years appointment.

If he says something, I really don't listen, I am lucky I had Revimmune instead of his advice. I am even luckier to not have him as a doctor anymore.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Previous

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service