Just wondering if anyone knows anymore about the treatment.



http://www.sciencedaily.com/releases/2008/01/080109091102.htm

when trying meds that have not been approved we set ourselves up for a rude awakening.They use our loved ones as guinnea pigs.
They know we as family members want so badly to find a cure .They prey on one being so vunerable.I had a friend who took part in a new drug .Well , in the end she went through withdrawls because the secret ingredient was opium.Because she suffers so badly with arthritis she allowed her self to be opened tofalse promises and those hidden ingredients.
One has to be careful of those who make out landish promises.What are the side affects to these meds?What is the success rate?Why are they making it so expensive for people.Beware of false prophets.

Fayth, Welcome to ECO, I hope you will tell us a bit about the purpose for raising this question. Do you are a loved one have symptoms of dementia,, a diagnosis of AD?

More than a few of us have dealt with a wrong diagnosis and so our LOs did not receive treatment for their true conditions. I suspect that may be the reality behind so many "cures". The real travisty of these self promoting, rapidly richer, drum beating, medicine showmen, is that desperate people empty their bank accounts and often take very dangerous chances with their LOs or their own lives, based on a handful of "cures" trotted out for the dog and pony show.

I am sure you detect a pound of bitterness and a ton of sorrow in the responses your initial posts have received. We all want a cure or at least a truely affective treatment (not just delaying tactics) but how can a disease/disorder be successfully treated when the cause is still elusive.

Few of us in this forum will offer any encouragement to invest your time, money, and quite likely your or your LOs safety in some form of treatment that has not stood the test of trail. If some new treatment needs guinea pigs for trials and you understand the risks, fine, but please do not lose your lifes savings for the privilege.

What we will gladly and freely do here is to share skills we have learned that make it a tiny bit easier to cope, one behavior at a time. We will share with you our horror stories of wrong diagnosis and medications, hard headed doctors,,, and the little successes that save the day and save our sanity,,, and when there is a bad day, someone will be close by to hear you and hopefully lighten that load. You aren't alone.

Boy Im deep today thanks Fayth lol now ya gone an done it Just kiddin
I dont know whether this should even be in this discussion but I have a knowledge of my MIL's siblings and not one of them so far has shown signs of this disease like she has, not even the ones that passed, for my MIL I will say she does have psychosis and has suffered from that for many years which exacerbates the AD in ways that have been documented in part here like her compulsive behaviors.... off the hook behaviors
Now it may be chemical but how do you explain not one of her siblings having this disease? There was no head trauma in her lifetime so thats ruled out and I know one of her deceased brothers was on the same drug therapies she is on as told to me by her brothers family *one being a very reliable source of info* with no AD diagnosis for him.
In the old days they used to lump the afflicted together whether it was AD or psychotic tendencies since they show some common traits so my theory is its a defective gene maybe, how else do you explain away an entire family with the exception of one not afflicted with this disease?
Tomorrow I may be of a different mind, on another path research takes me, right now that is the strongest theory that makes any sense to me with this families history....
But at the end it is all theory until there is hard scientific research and proof...

quote:

I recently picked up the book "Beating Alzheimers" by Tom Warren. Anyone else read this?

Unfortunately, I have not been able to find enough scientific evidence to support Mr. Warren's theories. Without hardcore evidence both of Mr. Warren's diagnosis of AD and his recovery, it's hard to take his work seriously.

I agree that much should be studied and I believe that environmental substances are causing many health issues now (and especially in the future), but without good scientific studies, it's hard to separate the snake oil from the holy water.

I can't help but think that if curing AD was as easy as he makes it sound, everyone would have jumped on the bandwagon. Conspiracy theorists think that secret "cures" are available for everything and others just don't want the rest of the world to know, but that just is not true. People doing research in the medical community want to discover a cure for this terrible disease just as badly as Mr. Warren, but they DON'T want to give people false hope or recommend cockeyed therapies which won't help. There ARE sincere people in the research community ya know!!

I do not believe that Mr. Warren has hit on a "cure" and I resent people like him who make claims that cannot be substantiated by researchers. What they do is suck desperate people into their scams and deplete them of much-needed money.

There are literally thousands of books like his that claim to reveal the secrets to curing cancer, AD, infertility, allergies, asthma, penile dysfunction and a host of other diseases and conditions. Some present compelling arguments, but unless their results can be replicated by researchers, their claims are bogus. I think this is a common sense issue - if all the researchers searching for cures for AD in so many places around the globe cannot discover a cure, don't really know exactly why the disease happens, etc., what makes Tom Warren so extra-special? His book has been around for years yet there've been no announcements that his cure actually works...

At this time, Alzheimer's Disease is a progressive, terminal disease. While I and millions of others would LOVE to read about a REAL cure, it hasn't happened yet. Denial can cause people to spend a lot of energy and money on bogus stuff... in the end, they STILL have to deal with the diagnosis AND have little energy or money left with which to care for themselves or others who are afflicted.

While I am always ready to read about breakthroughs, I think one would be better served learning as much as one can about the disease and what it does to people from RELIABLE sources so that one can better understand how to cope with it.

Do you have a loved one who has been diagnosed with AD?

And speaking of books, has anyone here read "The 36-Hour Day" - been around a long time, deals with dementia?
I'm not sure how I felt about this one: is it for folks who are not quite sure what's going on with their loved one, those who already know, or those who just need to feel they're not alone?

Hey Snowy glad to see you around

Fayth read what Snowylynne just posted she oughta know she is one of our dear members who is actually afflicted by EOAD.
Sweetie I am not saying dont read the books, read them if you must but I will say this, you would be better served if you picked up a book on what Alz is, how it affects the brain.
When dealing with my MIL who is diagnosed with AD I researched the disease asked questions and to this day I still continue the research for there might come a day when I have to deal with it again whether its myself or my husband who has now been on a paranoid jag everytime he forgets something because of watching his dear mother for the past 10 years the last 3 have been real hairy around here with her and now shes on another downhill slide.
I could grasp at straws but to what end?
Many of us understand the disease here, for me all I have to look at is my MIL's scans of her brain over the past several years, the decrease in size alone speaks volumes... There is no drug that cures this disease, no spice, no vitamin, nothing....it is what it is a brain destroying disease.
Until someone gets to the root cause of this disease and solves that problem anything thrown at it is only temporary at best.

Thanks for the replies - I guess we all have to keep the faith and be vigilant in our search.
I recently picked up the book "Beating Alzheimers" by Tom Warren. Anyone else read this?

There is NO cure for AD.............

Fayth, READ the words you wrote as the subject for this thread: "Reversal of Alz in minutes" That is TOTALLY bogus. This "miracle" treatment IS being used by some individuals. Their results are NOT scientific, nor is anyone testing this product in clinical trials - ESPECIALLY the manufacturer of it. The company has repeatedly stated that they have no plans to do a clinical trial for this off-label use of Enteracept. The METHOD of use has been patented by the greedhead doctor (a dermatologist who has been previously censured for making false claims) who is charging people thousands per visit (and training other doctors as franchisees of his method for a 6 figure fee). This is an unconscionable abuse of the system for ONE person's benefit: the doctor. The symptoms DO NOT DISAPPEAR IN MINUTES. SOME people DO show some immediate, noticable improvement, but they are not "cured" nor are the effects of the drug long lasting. In most cases, their progress is NOT being followed by a neurologist, so the REAL benefits of this treatment cannot be accurately measured nor verified. While the discussion of Alzheimer's Disease as an inflammatory process has great merit, enteracept (Enbrel) is NOT the answer. Promotion of this "treatment" makes me madder than a hornet's nest because it PREYS upon desperate people who cannot afford to be bulls*tted nor fleeced.

If you would like to read more discussion on this, the Alzheimer's Association's forum at alz.org has a thread going about it. I suggest that you thoroughly READ all 47 pages of discussion there as well as the links to other information provided by the posters.

There are rabid proponents of this procedure, so if that's what you're looking for, that is where to find it. BUT if you are looking for balanced, unbiased critical discussion and information, you'll need to read between the lines and realize that what you may see and hear about "miracle" stories is NOT scientific proof... certainly not enough to warrant well-designed clinical trials or studies (which the good, wealthy doctor refuses to conduct).
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4081064272

Our purpose here is Eldercare - not only care of individuals afflicted by one of the dementia producing diseases, Alzheimer's Disease, but of all elderly people. To that end, I think we have a responsibility to discuss matters pertaining to medical treatments for AD and other diseases with great conservatism as we are NOT experts in any way, shape nor fashion. The off-label use of perispinal injections of Enbrel outstrips our ability at ECO to discuss wisely and critically. This is one that should be left for discussion by professionals and not the general public.

Since the official website of the national Alzheimer's Disease organization has a thread for this topic, I see no positive benefit in discussing it here. It would simply provide the "treatment" and the doctor undeserved promotion for a VERY flakey, VERY expensive, VERY questionable treatment.

Many of us have Fayth but the deal breaker here is that this is a treatment or should I say medication is not approved for treatment of Alz.
A few of us here are watching it but the other problem for us here is this is administered by Doctors who are charging an arm and a leg for this, some folks are in this for thousands of dollars, the other issue is that its a temporary fix once you end treatment the person who is suffering from Alz goes back to his/her original state.
Thats the main problem I have, I know people mean well by trying what they can to make a difference with this disease what I can not condone is someone going broke doing it.
Eventually when the money runs out the person goes back to their original state and everyone involved in this persons life including the one afflicted suffers all over again.
Im watching this disease up close and personal the afflicted know they have deficits in thinking can you imagine having to go through that all over again in a shorter span of time?
That breaks my heart.