Hi - I just received an advertisement in the mail, to subscribe to newsletter "Alternatives" by a Dr. David Williams. This ad claims a cure for Alzheimers Disease. To get more information on the "cure" you have to subscribe to his magazine. However, the free ad that I received hints about using niacinamide in some form (you get this info after subscribing) which I believe is some form or combination with vitamin B3. Has anyone heard of this newsletter, heard of this treatment, or used this treatment? I am tempted to order his newsletter but wonder if it's worth it.

Betty, Be careful as there are so many of these "alternatives" for any type of illness/disease. I get these all the time if not in the mail via email.

Might I suggest to not signup for the trial. We signed up for one with a particular vitamin and couldn't get off their mailings of product. The initial FREE PRODUCT cost us $160 by the time we could cancel. It really wasn't worth trying to gain the lost money in the end.

Many scam artists in the "alternative" industry so do your research before signing up. If they've got an 800 number listed, go to "google" and type in and see what you find. You'll most likley find many others who complain about getting stiffed for product and couldn't cancel ASAP.

Might I suggest you do some research on line and see what "legit" co's are offering products for your illness. They're out there, but you need to uncover the good guys amongst all the scammers.

Best to you~

When someone goes to a neurologist to be assessed for alzheimer's, on the first visit the neurologist will test for B vitamins --since a deficiency can cause cognitive problems.

It's crucial that anyone with memory problems see a neurologist (one trained in dementia issue) so this and other possible causes of memory loss can be ruled out..

ps don't waste your money on someone who claims a secret cure for alzheimer's. If there was such a thing, it wouldn't be a secret.

We are very close to the release of a real drug that may be able to stop AZ in its tracks.

Blanchette Rockefeller Neurosciences Institute in Rockville, Maryland is in final clinical test stages of a drug named Bryostatin that, if confirmed by the study, can not only halt the progression, but allow many or most people to even recover to some extent, regain lost memory and retain new memories.

This one is for real, and if the tests go as planned, could be released to the public in 12-18 months.

I am sure it will be very expensive, and probably hard to get at first, if it gets FDA approval.

There are many stories about this, but here is a recent one from Reuters:

http://tinyurl.com/yf7x5zm

There are several others that are just as promising, and supposed to be approved by FDA in the same time frame.

I would avoid claims of "cures" by people and organizations claiming an all-natural or herbal remedy that they concocted or which does not have FDA approval. I don't care much for the speed FDA works at, but it's better verification than some "kitchen scientist" with no training. It seems that, vital as some of these drugs could be, that a speedier approval process could be enacted.

Bryostatin is the one I am watching closest, and I hope my dad in law lives long enough, and progresses slow enough, to try it.

best wishes

That Reuters story is just a reprint of BRNI's press release, dated April 22 of this year. They issued another release in May, about being close to developing a diagnostic test for AD.

There should be another release saying that the Phase II Bryostatin clinical trials are underway, but I don't find anything at all about it on their site; either in the media area or the research area.

I wonder what this means. The trial is delayed? Anyone else heard anything at all?

http://clinicaltrials.gov/ct2/show/NCT00606164
At least that Phase 2 trial has not yet started. I don't know if others have begun.

I don't believe this has anything to do with bryostatin. Have you ever heard of niacinamide?

http://alzheimers.infopop.cc/e...reqWords=niacinamide
There's a lot of posts about niacinamide in the link I provided above.
If this email was trying to sell you information about niacinamide, niacinamide isn't a cure and it's not exclusive info that only he can give you.

OMG,,,isn't it ridiculous the claims that are made by some "so called DR". I mean seriously,,if there were an ounce of truth to such claims,,it would put alot of specialist and the drug companies right out of business,,,,not to mention make one fantasic Dr a very very wealthy person.

Nope,,good old common sense when taking vitimans or any supplements for anything,,,will always take front and center stage.

My Motto,,,Buyer Beware.

Betty496, people like dear Dr Williams are the sleaziest of scumbags. Tear his ad into teeny tiny bits, and spend your money on something that is much more likely to be of benefit to you ... like a lottery ticket.


That clinicaltrial.gov page jellybeans cited for the bryostatin trial hasn't been updated since January 2008.

The study that was/is planned is a very short trial, lasting only a month and involving only a single injection in 10 patients, primarily to evaluate safety. It was supposed to take place over this past summer at their own Chestnut Ridge facility.

If nothing goes haywire, then they'll run additional trials to test increased dosages etc, and start looking into efficacy, but those would be a few years away still.

Betty, be should all be careful of unfounded claims for 'cure' to diseases or conditions that are advertised and do not come through a physician. My LO was a clinical trial for an AD new drug a few years ago that was one of those that was to hold out a lot a promise.

Turned out to not be effective, did not meet FDA approval, etc.

I am happy you went this issue to our site for input. Good luck

quote:

Dr. David Williams

http://www.ncahf.org/articles/c-d/davidwilliams.html

It's NOT worth it!!!

Thank you, Anita for forwarding that article on Dr. Williams. I had never heard of him before. However, I was forwarded another link from one respondent that shows lots of people are using niacinamide. I have never heard of it before. I have heard of the issues with b12 deficiencies and use of B12 supplements or injections. I just never heard of niacinamide. I am a skeptic when it comes to pharmaceutical companies charging so much for Aricept and Namenda. I often wonder if the money they are making off these drugs is impeding real progress in an AD cure. I was hoping that there were some true testimonies for the use of niacinamide. The way I feel, is that if it does not "hurt" or doesn't interfere with other meds the patient is taking, then, what the heck. Why not give it a try.
But I'd like to know more about niacinamide before hand.

quote:

Originally posted by Betty496:
Thank you, Anita for forwarding that article on Dr. Williams. I had never heard of him before. However, I was forwarded another link from one respondent that shows lots of people are using niacinamide. I have never heard of it before. I have heard of the issues with b12 deficiencies and use of B12 supplements or injections. I just never heard of niacinamide. I am a skeptic when it comes to pharmaceutical companies charging so much for Aricept and Namenda. I often wonder if the money they are making off these drugs is impeding real progress in an AD cure. I was hoping that there were some true testimonies for the use of niacinamide. The way I feel, is that if it does not "hurt" or doesn't interfere with other meds the patient is taking, then, what the heck. Why not give it a try.
But I'd like to know more about niacinamide before hand.

All new medications are expensive- they have to pay for the costs of development and everything.
I'm definitely one who looks to try new things. Niacinamide in high doses can have some really nasty side effects, so I'd definitelly look into it further and discuss it with the doctor to see it it's good to try for your LO.

Please, Betty, listen to the sound advice given on this thread. I work in healthcare and have heard some horror stories concerning patients falling for these so called "cure" claims. If the drug is not part of a legimate study approved by the FDA, it's a waste of money and can be potentially harmful. I know the pharmaceuticals companies are not perfect but, as another post indicated, the cost of developing medication is high. At least with an FDA approved drug, you know it has gone though rigorous testing and trial phases and, even with all that, some people can have nasty side effects. Occasionally, even some of these approved medications, can be pulled off the market.

Great strides are being made to develop a cure for this tragic disease that takes our loved ones in such a heartbreaking way. But, please don't fall for any type of hype that promises a "cure" because, so far, there is no cure for this disease. As far as supplements go, as a previous post said, discuss it with the doctor just to make sure it would not be harmful.

Sincerely,
Kathyl

PS: Brightwings is right, one of the first tests a Neurologist orders in evaluating a patient for Alz. is a vitamin B profile.

Ever wonder why the drugs Aricept and Namenda are so expensive??? Why is it that you can get these same drugs in other countries for alot less money than here in the USA,,,,ever wonder if the drug companies are controlling the find of a cure? What do you wonder? Inquiring minds want to know!!!!

Puglove - you are the only person who replied to my post who shares my skepticism on the costs of the AD drugs and the slow "progress" in finding a cure. I'm not uninformed, nor am I crazy to fall for a "cure" published in a newsletter. Nor, would I give my Mom any concoction without her doctors approval. I was just wondering if anyone had heard of nia........or have used it with any effects on their LO.

No, I have long suspected that drug companies are the real reason why medicinal care is in such a shambles in this country. Talk about fraud, talk about waste, talk about witholding information until it is most profitable... I think they took a lesson from the oil companies.

If it came with a "postage paid" envelope, send it back, sealed and EMPTY. They have to pay postage, when it is sent back to them.

Puglove, Betty, and Lammie, YES. AS my Brother goes through chemo, I wonder the same about those drugs. Until drugs are available in generic form, they seem to have a monopoly on them, and get whatever price they charge.

Yes, the prices are outrageous. My mom also suffers from chronic UTI's. The last time she was on Leviquan and it cost her (she was in the gap) $124 for 10 pills. Tell me, how can they justify $12.40 for one pill?

If your mother's $$$ is low, Mass has Prescription Advantage that provides drugs at a much lower co-pay (call 1-800-Age Info and ask for Prescription Advantage)

I just copied this from wrongdiagnosis.com:

"High doses of niacinamide can be toxic to some people with gout, diabetes, asthma, liver disease, ulcers, or are on antihypertensive medication."

Best to ask doctor to test your LO for Vitamin B levels to see if levels are low... A basic B vitamin shouldn't hurt if LO can swallow it..)

ps I agree that drugs are too costly but just a different way to think about it-- 10 pills can be the difference between life and death/between sickness and health. Rather a bargain...

I have a major problem with drugs like Namenda and Aricept that are so expensive and "may help slow the progression of the disease". I refuse to pay that kind of money for something that has no observable results. I know some people have seen results with these drugs but we did not and discontinued the use.

Betty: I am truly sorry if I made you feel that you were uninformed -- my comments were not meant in that manner. As I mentioned, the drug companies are not perfect, and I have no answer as to why most prescription drugs are so costly. Perhaps it has a lot to do with the scientist's who develop them and all the research involved. As for the time factor, I'm not sure about that either. I know the FDA requires so many phases of clinical trials before a drug can be approved, and sometimes that can take years.

On a personal note, I was getting Namenda for my late husband from the UK until it was approved for use in the US. All I needed to do was fax a prescription from the doctor and within two weeks we had the drug. When you factor the dollar/pound exchange though, it was quite costly. Fortunately, within a couple of month's, it was approved in the States. I'm not sure why Aricept, especially, does not yet have a generic equivalent (maybe it does and I'm not aware of it) as it has been around for some time.

I guess I feel strong about this because I know someone who is so totally into holistic and alternative medicine. When she developed cancer, she went to a practitioner who was using some sort of alternative treatments. By the time she went to a "regular" doctor, the disease had spread. As she is young (40's), it is being treated aggressively with chemo, etc. and the family is hoping for a good outcome.

Again, I'm sorry if I offended you, and I hope you understand the context from which my remarks were made.

Take care,
Kathyl

kathy - I wasn't offended. I would never use anything without first passing it by her doctor. I do, however, believe that there are some good alternatives out there. Maybe not alternatives, but supplements to regular medications. I am still discouraged by the FDA, Pharmaceutical Cos, etc in their slow progress for cures to many diseases, not just Alzheimers. Before my Dad died, 20 years ago, from lung cancer, he commented that there will never be a cure for cancer as the cure will put too many people out of work. I often think about what he said and sometimes wonder if he was right.

After doing some more research, it appears that Niacin is Vitamin B-3. Niacinamide in some articles says its the same as Niacin (B-3) but carries some more warnings than niacin, warnings that affect the liver. I am going to do more research on it and will then talk with Mom's doctor. She takes vitamin B-12 supplements already which did raise her B-12 levels substantially. I still don't know if B-3/Niacin is in the future, or will be any benefit to her. Anyone have any research on B3?

Hi Betty,
My understanding is that Niacinamide is made from excess Niacin, and the warnings come from too-high doses. I don't know if you saw this write-up:
WebMD/Niacin and Niacinamide

Thanks Maebee for the info on WebMd. After reading this, I don't believe mom's a candidate for B3 (niacin). She already has low blood pressure and takes other meds that might interact. I will still mention it to her doctor, but I think I already know what his answer will be. Thanks so much for forwarding the link to me. Now I can get B3 and Dr. Williams out of my mind!!

Betty,
There is a study at the Univ of California, Irvine, to determine whether nicotinamide, or vitamin B3, is safe and effective in the treatment of Alzheimer's disease. The study ends in Jan, 2010, so there should be an answer soon about the effectiveness of niacinamide as a treatment/cure for Alzheimer's.

http://clinicaltrials.gov/ct2/show/NCT00580931

Hi, to all..

Has anyone heard about Cinnamon therapy for alz?
I read about it somewhere on the forum, but now i can't find it..

quote:

Originally posted by ipoe:
Hi, to all..

Has anyone heard about Cinnamon therapy for alz?
I read about it somewhere on the forum, but now i can't find it..

There's a lot of discussion about it on the medication part of the message board. The find button can help too.

jellybeans, thanks..

No problem, Ipoe. I hope you'll share your thoughts and experiences (if you end up trying cinnamon).

Anita, I loved that link. Haven't had such a good laugh in weeks.

Before I go on a rant -- which I give y'all fair warning I'm about to do -- I would mention that we do have a Medications/Treatment forum which is very active, and many of the people who post there do not post on, or probably even read, this forum. When you have questions about treatments, that forum is a much better place to read and post. Do a search for niacinamide and you'll get loads of hits.

The faint-hearted should stop reading now.

A couple of people have mentioned the high cost of bringing a single new drug to market. The last time I looked, the average cost was $850 million, and I'm sure it's gone up again since then.

As for meds costing more here than in other countries, we not only have much more rigorous (interpret as "expensive") clinical trial requirements, we also have much more rigorous manufacturing and quality assurance/quality control requirements. Maybe you're buying the same drug with the same formulation in another country ... and maybe you're not. The way a med is formulated can have just as much effect on its efficacy and safety as the active ingredient itself. The way the active ingredient is synthesized can have a huge impact on the side products that are in the formulated med, and therefore on efficacy and potential side effects.

And I do not mean to insult any of you who are questioning this, but it's idiotic to think that drug companies are trying to "control" the finding of a cure for AD (or for cancer, for that matter). The first company that produced a cure for AD would be swimming in riches. The competition is intense. It's not just a matter of economics, either, it's a matter of professional pride for hundreds of thousands of scientists. And it's not just a matter of the scientists in huge pharmaceutical giants. There are many hundreds of tiny pharmaceutical companies (many of which are struggling to survive, many of which have never made a penny of profit), not to mention hundreds of thousands of scientists in academia, and in Government labs, and in not-for-profit research institutes and hospitals.

There are dozens of new drugs for treating AD in clinical trials (at the cost mentioned above for any that make it all the way through) and many thousands more in the pipeline. AD is an incredibly complex and complicated disease -- if it is, indeed, a single disease. It is amazing how far we've come in our understanding of the underlying pathologies in such a short time -- especially since there isn't any even halfway good animal model for AD. A few short years ago, there was only one "target" (i.e., one biomolecule known to be involved in the pathology against which drugs were being developed). Now there are several dozen targets. Visit the HBO The Alzheimer's Project website, watch the documentaries and supplementary videos, go to the Alzheimer Research Forum and read up there.

Not to mention, there are plenty of other disorders for which truly effective medicines are still lacking. The pharmaceutical industry is not exactly totally dependent on AD meds for its existence.

The patenting process was set up for one very simple reason: it takes a lot of time and money to come up with novel inventions. There would be no incentive to invest the time and money if there were no reward. Ergo, the invention is protected (under international laws) for a reasonable period of time, so that the inventor can maybe eventually make a profit. The vast majority don't. The vast majority lose their shirts. And the costs for obtaining and defending patents are staggering, too, and the patents may not even turn out to be defensible.

Now you tell me: how much did it cost to discover and develop Leviquan and take it through clinical trials, and how much did it cost to build the manufacturing plant(s) to meet FDA requirements (and all the other Federal, state, and local requirements for building codes), and train the staff who work in the plant, how much does it cost to manufacture the Leviquan -- including labor (here in the US, labor is a wee bit pricey), raw materials, synthesis and formulation costs, energy costs, quality assurance and quality control costs, costs for meeting environmental regulations, etc -- and how much does it cost for storing (more regulations), packaging (more regulations), shipping (more regulations), and distribution, and so on and so forth? How much of that $12.40 is over and above all of the production costs, how much Leviquan do they sell, and how many years will it take for that "excess" to make up for the huge initial investment? And then, there are the programs where they sell the drugs at a very low cost or even provide them for free (how many of you have gotten samples?) for low-income people. How much do things like that cost the drug companies? And then there are the lawsuits, the vast majority of which are frivolous and have no scientific merit, yet cost the drug industry hundreds of millions of dollars every year. You are, in part, paying a high price for your medicine for someone else being given many millions of dollars by a jury who didn't begin to understand the issues involved, but figured that drug companies make too much money, so why not stick it to them.

Answer those questions, and you'll know how they justify the cost.

And for the record, I have never worked for a drug company, although I have many friends and acquaintances who did or do. My father was a doctor (general practitioner), so I've been around the medical world since I was born. I've been a research scientist working in related fields for many years. For fifteen of those years, I developed tools and techniques to be used in the drug discovery and development process. When you want to commercialize products for an industry, you'd better know all about the processes for which those tools would be used, the types of organizations who might be targeted as customers, and you'd better know all about the economics involved. I have read voluminously, been in hundreds of meetings with fellow scientists from all types of research organizations, potential customers, and investors, attended symposia until my tailbone was numb and my eyes glazed over, and spent many thousands of hours searching the scientific literature.

Thank you, thank you, JAB, for making the time and effort to research and mentor for us all.

Iris L.

I have a question for JAB.

I have noticed that occasionally you will respond to a question with very accurate figures on normal doseages for various meds used in dementia. I was wondering what your source is (I would like to get this data.) So far, the best I have been able to find is the Concensus Guidelines. Of course I also can find little bits and pieces in various articles, that don't always agree.

Thanks,
Norbert

Hi, Norbert. I usually use rxlist.com for anything regarding drugs. Some of the articles on dementia patients dosing which I use are at:

http://alzheimers.boomja.com/T...-Symptoms-67128.html

I particularly like the one by Gary Steinke (originally published on one of the Alz Assoc websites). I also use articles by Doug Galasko ... he's my husband's neuro, and works with the ADRC here.