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• Housecall
• Alzheimer's caregiving
• Living with cancer

• October 17, 2009 12:01 a.m.

  Hey people, there is a book published about 2000-2001, b4 all the stuff came out about viox(sp), that explained that there was going to be problems, with it. this book explains why and how there are all these terrible side effects form these revenue producing drugs. It is called "Beyond Aspirin" written by Paul Shulick and others. It goes into Alzheimers extensively,and it goes into many natural nutrients that help PREVENT many conditions, it goes into reasons for INFLAMMATION(cause for many diseases). What ever happened to the good old Sayings, Like "an ounce of prevention is worth a pound of cure" . I guess when millions or billions of $$$ are involved, "THEY" don't want us to remember the GOOD old sayings. There is a ton of information out there you won't ever see on tv. GEE I wonder why, AND you wonder why our Health cost are the highest in the world, and we pretty much lead the world in PREVENTABLE DISEASES. Sure we have great medicines, for some really bad diseases, there is great profit in them too, best in the world, but if we prevented them in the FIRST place?!! that is where our money should be, How much money has been spent over the years for a cure for cancer? And who is backing these studies. If you think the FDA is protecting us you need to rethink, All us American Citizen's quality of LIFE(and yours and mine kids) depend on all of us not believing what we see and here! Just watch the documentary "Sweet Misery" shows what

  - anonymous

• April 27, 2009 3:39 a.m.

  My husband has been diagnosed by a neurologist in Charlottesville, VA, as having Alzheimer's. Is there any chance that the Mayo Clinic might run the necessary trials to determine if there is any efficacy in using Enbrel as a treatment for Alzheimer's?

  - Laura Bengelsdorf

• February 15, 2009 2:00 p.m.

  I have watched my mother-in-law suffer from Alzheimer's disease over her last 7 years (she died at age 100). What I know now came from research other than the Mayo Clinic. But there are steps everybody can take now to prevent this to happen to them. 1. take Vit. D3 2000 IU per day 2. get a T3 and T4 blood test to rule out hypothyroidism (doctors often do not order T3) 3. Measure lead and mercury levels in urine and stool, particularly if you have more than 3 amalgamate tooth fillings 4. If you test positive for mercury, go for intravenous chelation therapy or apply Lifewave Glutathione patches, which specifically remove heavy metals from your system. 5.Regular exercise and good nutrition have been linked to less Alzheimer's disease. 6. Omega-3-fatty acids (cod liver oil capsules etc.) and/or fish help you to preserve brain cells 7. Cut out sugar and starchy food by following a low-glycemic diet so that elevated insulin levels are brought back to normal. 8. Mayo Clinic research recently showed that computer based memory exercises in seniors will lead to significantly less Alzheimer’s disease in the years down the road. For more information read my web site: http://www.nethealthbook.com/articles/alzheimersresearch.php

  - Ray Schilling, MD

• November 17, 2008 12:20 p.m.

  It is now Nov 2008. Is there any clinical trials started on Enbrel for Alzheimers?

  - Corrine

• September 3, 2008 4:21 p.m.

  Make sure you get tested for Lyme disease. They share symptoms and often Lyme disease is sometimes misdiagnosed as Alzheimers. Just a heads up. There is great research into Lyme disease symptoms that are shared with Alzheimers over at http://www.lyme-disease-research-database.com.

  - Lyme disease advocate

• July 22, 2008 11:22 p.m.

  The APO E Gene Diet can be found at http://www.apoegenediet.com/ www.apoegenediet.com

  - Melissa

• July 22, 2008 11:21 p.m.

  I too have been hopeful for further research on Alzheimer's Disease. The APO E Gene Diet is a book by Pamela McDonald that is based in science on the treatment of Alzheimer's prevention and recovery from. Medicine, science, and diet are now delivering powerful answers to chronic illnesses. I would highly recommend this book.

  - Melissa

• July 14, 2008 9:26 p.m.

  What can be done to help patient that has sundowners syndrome and the nursing home sends the family home when visiting to be able to medicate them and it is hard for us who want to visit and the patient

  - cydny

• May 13, 2008 8:49 a.m.

  I did not waste time not telling my mother how loved she was, I would just like her to know it and hear it as she approaches death. Currently it has cost a quarter of a million dollars to keep her in a state of existence, just existence. What is wrong with wanting her to be able to feel the love around her again. The time she has is wasted now, suspended in life with no end in sight and also no hope. Give her one or the other. At this point she has NOTHING to lose. And i know my mother, she would volunteer. Never assume I did not tell my mother she was loved. But those are words that can not be heard enough, especially when you are facing really bad times. Also, the side effects can be bad,but no more severe than dying without a brain.

  - dawn

• May 12, 2008 11:29 p.m.

  Back again, For the many who do not suffer from dementia, but are very aware of their arthritis, vision and hearing loss, just how much of the reseach money and medicare/ insurance funding are they suppossed to get? there are far more in this catagory. Trapped with good minds behind blind eyes and deaf ears for years and years. We all have an agenda. Sorry if I don't hop on your band wagon Felicia, I have other concerns about the priorities of the FDA and reseach. People with cancer and severe pain, while totally aware. Dawn, with all respect, I offer my condolences that you waited so late to tell your Mother of your love for her and to hear her speak your name. I heard my Daddy scream my name in great pain as he suffered. Go ahead, trade dementia for lymphoma and get your wasted chance back at her expense. You are selfish.

  - Suzy

• May 12, 2008 9:24 p.m.

  I have watched my mom deteriorate over the years with AD. For the last several months she has not recognized me. i do understand the need for further studies but in my opinion, Mom has nothing but along, drawnout, undignified passing at the point.Our family feels with this disease it would be worth any risk just for the opportunity to have her for even a week, to have a chance to tell her how much she is loved and to possibly hear our names come from her lips one more time. Yes, my motives are purely selfish but the alternative is much worse, hand feeding her daily, changing her depends, giving her baths, dressing her like a Betsie Wetsie doll. If i know my mom, she would have her hand up as the first guinnea pig in the study group. It reaches a point where the risks are worth it.

  - dawn

• May 11, 2008 12:44 p.m.

  Sorry, didn't budget my space. Ca-ching, break the bank. Pull out the card and fork it over, The docs involved and the drug company involved don't want tests and approval, they want everyone to sign a release and be off the hook. FDA approved fen-fen, Vioxx, others, but when the negatives surfaced, who got sued?? Not the FDA. As long as it is off label, and you sign that release, who you gonna sue, Ghost Busters? That is how Dr. T likes it. That is how amgen likes it. You may work around it, find a doc who will prescribe enbrel for a labeled use, surely the patient has some sign of psoriasis or RA. You say, ahh, bad reaction at that injection site. Use this one. Done. I used to think just maybe Felicia worked for Dr.T., but no more. Dr. T doesn't want the FDA approval that she is pushing for.

  - Suzy

• May 11, 2008 8:05 a.m.

  I have tried to follow the discussion about this treatment for the past few months. Many things bother me. First, the diagnosis of Alzheimer's is not always correct. Many doctors don't do the testing necessary to rule out other causes of dementia. It seems that Dr T does some extensive tests before treating people. Is he looking for patients with something other than alzheimer's to treat? I wonder if he ever tells a patient that this proceedure is not appropriate for them or if it is just a "show me the money" criteria. At least a few of these people are likely to have some other cause for their dementia. All the more reason for proper tests to be done. It seems to treat something, but what? Most of the argument seems to be about the money. The supporters of Enbrel don't seem to want answers they simply want insurance or medicare to cover the cost. Since this would be a patented proceedure, will it remain in the hands of a few doctors who may or may not accept what insurance or medicare will pay. A fast track by the FDA will not quarentee that this would become available to all at a reasonable price. There is a reason why the makers of enbrel do not pursue this. I don't know what it is, but since they don't pursue it, clearly they have a reason. The FDA has stated that a request must be submitted by the company or patent holder, or trial conductors in order for them to consider this. It is not based on a popular vote. Ca-ching, break th

  - Suzy

• May 10, 2008 3:03 p.m.

  I agree with moms_buddy; desperation for treatment should never outweigh common sense issues. I'd give most anything to have Mom back as herself, but I won't risk her health unnecessarily. If enbrel truly is helpful, then let's see some concrete research on effectiveness and safety. Thank you for having a level head amongst all the hype.

  - Robyn

• May 10, 2008 2:47 p.m.

  Angela, your article was a breath of fresh air. Desperation for treatment should NEVER outweigh common sense issues nor replace the need for legitimate scientific research and testing. "Blinders" of ANY kind have no place in searching for solutions to our problems. For those who have money to burn and wish to participate in the current Enbrel treatments offered by a dermatologist and his franchisees, I wish you well. But for the majority of sufferers, money IS a BIG issue and should be reserved for patient care and not to enrich any doctor who is doing an end-run around the legitimate scientific medical community. It is horrifying to me how incredibly profit oriented our system is in the research, development and implementation of drugs and therapies. Our government does NOT protect us in this area; the "market" is driven by greed and profit. When did medical care become a "market" and patients considered "consumers"? There are some things in life that should NOT be driven by profit, but for the altruistic desire to make things better for people everywhere. I fervently WISH that SOME legitimate researchers would TEST Enbrel and this particular treatment if for no other reason than to prove or disprove its efficacy and long-term benefits for treatment of AD. It is a SHAME on the entire medical research community for no one to step up and do so. They are shirking their responsibility to their profession. A special place in hell is hop

  - Moms_Buddy

• May 10, 2008 7:48 a.m.

  I recently heard that some arthritis sufferers who used Enbrel long-term developed lymphoma. Haven't been able to confirm this, but our doctor thinks it is too risky because of the reasons stated by Angela. I, too, would like to see good, sound research done.

  - Lucille

• May 7, 2008 3:08 p.m.

  To finish my sentence in the last post: Many other issues were wrong or half truths. YOU CAN'T ALWAYS TRUST THE MEDIA!

  - Annonymous

• May 7, 2008 3:05 p.m.

  CAN'T TRUST THE MEDIA In response to Peter, there was an article just written in the UK named False Claims of Doctor Who 'Can Reverse' Alzheimer's Disease dailymail.co.uk-I just went to the site & saw they changed the title & added one paragraph about patients: Doubts over claims of doctor who 'can reverse' Alzheimer's. Many of us wrote comments but still says "no comments posted". This is PART of a comment from another blog from someone who was actually there that day: http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4971061982?r=7631006992#7631006992 "When I read the contents of this daily article, I actually wanted to throw up. I was there that day and was interviewed alone and then with my mother. I told them how the shots had given me my mother back. I also told them that her physician was talking about getting outside help ready because she was going down quickly. We don't talk about that now because she has improved to such a point, we don't need any help. She is going out and socializing again, remembering names she was having trouble remembering. She had lost all of her joy. My mother is fun again. Now she has HOPE... They betrayed us. They told us they were doing an article on how the shots were helping people & wanted to talk to patients who had had results." This was from a reputable paper, & the info about the Doctor was outright lies. UCLA just named him an employee in an article in Jan. 08, & many other iss

  - Anonymous

• May 7, 2008 7:52 a.m.

  Believe it or not, the spice TUMERIC does not cure Alzheimers, but definitely prevents it - which has been proven by doctors. Your comments would be much appreciated it you can shed more light on this. Thanks

  - Desiree Mansfield

• May 6, 2008 5:06 p.m.

  Dr. Tobinick is training doctors across the country but they are not allowed to advertise because this is an off-label use of the drug Etanercept (Enbrel). If you ask your doctor, and they don't know enough about it, you can see the study on the Tobinick INR website, and print it out for your doctor to look at. The website also has links to publications that you can also bring to your doctor to show it's a peer-reviewed published study. No clinical trial was done yet, but that will take years, so many of us are choosing the off-label treatment...not covered by insurance. You need to weigh the benefits against the risks of AD. The drug is FDA approved for Rheumatoid Arhtritis. From all the patients caregiver's I've seen or talked to, there have been no adverse side effects for their Loved Ones, so far so good! I want more people to know about this, the more that know and get treated, the more the hope will be given to the public, and the sooner Medicare or Insurance will agree to pay for it...I hope!

  - Felicia

• May 5, 2008 7:40 a.m.

  I feel immediate research into the use of off label Enbrel as a tool in fighting Alzheimers is so needed. The mayo clinic is so highly thought of and a place where people turn for answers and for Hope.

  - Rosie

• May 4, 2008 11:04 p.m.

  If there is a doctor that will do this for my mother, I will go for it. What does she have to lose? It would be impossible to travel across country, but I'll search on the east coast.

  - walter

• May 4, 2008 8:06 p.m.

  It's my understanding that Dr. Tobinick has patented the method by which Ebrel is injected, and that means only he or doctors he approves can administer this drug. I hope there is a way around that. But at the same time, everyone should consider the side effects that you can read at enbreldotcom. It does weaken the immune system. Patients using enbrel have a higher rate of lymphoma. The onset of MS, seizures, TB, and other possible infections have been noted also. My Mom is late stage and we would be glad to try anything that would help. But this needs further study

  - Orient

• May 4, 2008 11:28 a.m.

  While we all agree that the use of Enbrel in AD was not put to the rigors of a clinical trial...then let us do it now! We are spending too much time stating and restating this fact. Move on and put it to the test. The validation or acceptance that Enbrel is doing something has been documented. To prevent vulnerable caregivers from spending their life savings chasing an expensive patented procedure ...please put it to the test so it will be available to all at a reasonable fee. As a respected, academic institution, a Mayo conducted trial would be the answer to validate or refute the use of Anbrel in AD. As Bob stated below, if the results are that dramatic, the trial does not need to be costly and long in duration.

  - Sandy

• May 4, 2008 10:40 a.m.

  Ms Lunde -one more thing and with only respect, why don't you take a walk away from your desk and go to the Tobrinick center and actually see what is going on. Couldn't hurt and could provide you with a little more detail for your article. No?

  - No name given