The Scandal That is Alzheimer's Research

re: The Scandal That is Alzheimer's Research

Evax — Thu, 03 Jul 2008 18:56:28 GMT

The Abeta vaccine targeting Abeta has reduced the burden of amyloid plaques in the brain for both mice and humans, and improved or slowed down deterioration of cognition. When one drug targeting Abeta works whereas another doesn't, blame the drug not the target.

re: The Scandal That is Alzheimer's Research

famc17 — Thu, 03 Jul 2008 20:22:35 GMT

Sharon,

Thank you for not being afraid to "suggest" some scandal here. I have been "fighting" a long fight, 4 months! You say that's not long...well it IS in the life of an Alzheimer's patient that you care for and love that is declining every single day -- or WAS declining!

I have learned of the scandals and the stubborness through my own personal experiences while trying to spread the word about a treatment that has been held back by the scientific medical community. Why($$$), I don't really know($$$), it's beyond comprehension to me. But, in the simple words of my Mom when she overheard me talking about this, "You mean they don't want me to get better?" I basically said, well, they don't want you to get better if it's not going to make them any money".

There is a treatment that works(perispinal etanercept) and the doctor behind it (Dr. Ed Tobinick)has been pushed into a corner for over 4 years now. They (the experts and professionals) have slandered his name and his treatment, making it almost impossible to get the word out...Almost. But, in the last couple of months, we are finally getting the word out through his persistance and through the persistance of caregivers like me who know this is real, and can't stand the fact that the Pharma companies are shutting this out. Amgen makes the drug, yet they won't stand behind it either. They made a mistake in the beginning, and I believe they are now just hiding behind their mistake by a statement from them that says this treatment is implausible! They never even looked into it or offered to do any research on it. These aren't mice this is working on, they are people. Amgen refused to do a study ($$$) and Dr. Tobinick didn't have the kind of funds it takes to do a double-blind clinical trial...so there it sat. But, Dr. Tobinick kept treating patients, and kept plublishing his work in peer-reviewed journals. A couple of weeks ago, a research team at the NIA/NIH finally completed a study that proved it to be Plausible, to be presented at ICAD this month -- Sorry Amgen!!

http://www.abstractsonline.com/viewer/viewAbstract.asp?CKey={EE8D30B4-A2F3-4BF5-9B7C-032B2C10CC4C}&MKey={CFC5F7C6-CB6A-40C4-BC87-B30C9E64B1CC}&AKey={50E1744A-0C52-45B2-BF85-2A798BF24E02}&SKey={BD1757D5-7976-493C-841B-F29B2D3484D8}

Title: Modification of synaptic plasticity by TNF and sphingomyelinase: Implications for cognitive impairment in AD

Category: Molecular Mechanisms of Neurodegeneration Synpatic disruption

Author(s): Yue Wang, NIA/NIH, Baltimore, MD, USA. Contact e-mail: wangyu@grc.nia.nih.gov

Conclusions:

Our findings reveal rapid, nSmase-mediated, effects of TNF on the function of two types of glutamate receptors that regulate hippocampal synaptic plasticity, and provide a potential explanation for the recently reported rapid improvement in cognitive function of AD patients treated with a TNF inhibitor (Tobnick and Gross, J Neuroinflammation 2008 Jan 9;5:2).

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I need journalists like you to keep your eye on this...please...do not let the Pharma Companies shut this out. It is too important. The medication and treatment is very expensive, and we need to get it approved by the FDA as soon as possible, so that this can be available to others acroos the country. There are now about 10 Doctors trained to do this in various states, but we need more. There are 5 million people in the U.S. who need access to this. My Mom is now able to live a decent, happy, albeit confused life. I don't have to watch her get eaten away every day by this disease, and it is a miracle.

Please read the following message board for many answers, pros and cons from caregivers regarding this treatment -- And spread the word. It's really long now, so just start at the end and go back a little at a time.

http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4081064272?r=9411052113#9411052113

There are also a couple of videos up on youtube that us caregivers put up:

http://youtube.com/watch?v=OhTtJkN3o2Y, http://youtube.com/watch?v=9ANqK7oJuac,

http://youtube.com/watch?v=zhKO80l_IJQ&feature=related,

http://youtube.com/watch?v=JdSsdxzrjMk&feature=related (and more by Bob & Linda)

With Hope, Felicia McColl

re: The Scandal That is Alzheimer's Research

famc17 — Fri, 04 Jul 2008 02:50:42 GMT

I just posted a link to this article on the Alz.org Message Board so I am anticipating some posts. I know we will see some pros and cons about the Treatment...should be interesting! I'm hoping this helps spread the word!

Felicia

re: The Scandal That is Alzheimer's Research

Don B — Mon, 07 Jul 2008 01:10:52 GMT

I losst my mother-in-law to Alzheimer's disease 4 years ago after many difficult years. It was extraordinaryily difficult to read articles during that time about research not being done which did not fit the popular hypothesis. Probably my wife and I read your articles.

Slightly off-subject, but research on climate change fits that same mold-if the research does not support the popular carbon dioxide warming theory it is not likely to be funded. Close-mindedness is a terrible thing.

re: The Scandal That is Alzheimer's Research

famc17 — Tue, 08 Jul 2008 05:55:33 GMT

Perispinal Etanercept is a treatment for Alzheimer's that desperately needs some publicity and research. It has stopped the progression of the disease for many people, including my Mom. We need to get a clinical trial funded for this, too many people are living without hope. AD is not a disease that we can "wait" for...the treatment is working now. Please see this website for information and more videos and links to the study and journals.

http://www.nrimed.com/

Sharon, some of my friends on the AD message board have e-mailed you directly...Please listen to them...this is real and we need your help.

Thanks, Felicia

re: The Scandal That is Alzheimer's Research

hELFRAN — Fri, 11 Jul 2008 00:51:37 GMT

WE NEED RESEARCH TO BE DONE ON THE PERISPINAL ETANERCEPT TREATMENT . WE HAVE HEARD NOTHING BUT GOOD REPORTS FROM CAREGIVERS WHO HAVE BEEN FORTUNATE TO GET THE TREATMENT FOR THEIR LOVED ONES. PLEAS , PLEASE, PLEASE HELP US GET A CLINICAL TRAIL FUNDED FOR THIS TREATMENT BEFORE TOO MANY OF US LOSE OUR LOVED ONES. GO TO "HTTP://WWW.NRIMED .COM/" TO SEE FOR YOURSELF THE WONDERFUL RESULTS. WE NEED THIS NOW!!!

THANK YOU, HELENE

re: The Scandal That is Alzheimer's Research

lillysalazar — Fri, 11 Jul 2008 17:43:13 GMT

From what I understand, the monthly cost of treatment for the drug Perispinal Etanercept is a staggering $3000.00! This is a drug that REVERSES Alzheimer's symptoms and has Not yet been funded for a clinical trial. I cannot imagine the helplessness felt by those among us who have loved ones that are suffering from this disease. We ALL need to work toward gaining the publicity needed to have this drug brought to the forefront and researched.

Lilly

re: The Scandal That is Alzheimer's Research

FleetingShadow — Wed, 30 Jul 2008 20:19:48 GMT

What gets me is that 3 years ago, people found a direct link between HHV1 (Herpes Simplex 1 - the kind you get coldsores from), and Alzheimers; literally, the plaques are riddled with the virus. - http://www.sciencedaily.com/releases/2000/05/000512083302.htm and http://www.scienceblog.com/cms/cold-sore-virus-might-play-role-in-alzheimers-12283.html and http://www.ncbi.nlm.nih.gov/pubmed/18300070

Add into the mix the fact that new hi-res MRI devices show microbleeds all over the brain of most people, and that these break the blood/brain barrier in those areas, and it gives a very simple mechanism for the virus to get into the brain (even if it doesn't just travel up the neurons themselves).

Why are people focusing on the plaques and the tangles? We have a virus here that lives inside of neurons, which has been found and strongly correlated with the disease.

There are other classes of herpes virus which have similarly been implicated in brain cancer. This should be a big fat red X marks the spot. But most researchers are too specialized.

re: The Scandal That is Alzheimer's Research

EOADSpouse — Mon, 24 Nov 2008 16:15:05 GMT

The researchers have been pretending to not know their hypothesis did not explain clinical symptoms of Alzheimer's They ignore the fact that events from head trauma to glaucoma produce amyloid plaques. They ignore the distribution of plaques not tracking brain damage. This is not new.

One of the Hallmarks of Alzheimer's is the occasional brief period of high function. For a few seconds, minutes, or hours; a person with even advanced Alzheimer's can function. This points to brain cells that go dormant before they die. Maybe they go dormant because of some critical metabolic resource. For a short period of time that part of the brain gets the missing item and functions. Then it goes dormant again. Eventually, the cells die. Think of the analogy of stroke or brain trauma.

In 1976 I went with my wife to hear the results of extensive testing of her mom. The diagnosis was Alzheimer's at a time when that diagnosis was reserved for younger victims. The doctor told my wife not to worry because there would be a cure long before she might be affected.

10 years ago, my wife was already bottom 1 percentile on cognitive tests. At that time a famous researcher assured us there would be a cure in 5 to 10 years.

Today, my wife does not recognize her name, and has not known me for many years. She does not respond to voices, eat on her own, or speak.

Yesterday, as I was dressing her, she asked me to kiss her.

re: The Scandal That is Alzheimer's Research

famc17 — Wed, 04 Feb 2009 17:30:56 GMT

Yes, there are moments of clarity even when you think they are completely gone. The key word used is "moments". My Mom has now been getting the Perispinal Etanercept injections for over 11 months...almost a year! We no longer have only moments of clarity. Clarity is there more often than not. What we now see are moments where she's out of it a little, but then she snaps out of it.

The treatments are working, and it's a big difference when it comes to the quality of life.

Felicia