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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Monday, June 03, 2013

Why Not Try This (2)

Washington DC
Ever since writing Why Not Try This (1), I’ve remained curious about why I refuse to try alternative treatments, so this post is a supplement to that one.  With this somewhat abstract essay, I don’t expect to convince anybody else, but I do want to understand myself.

I’m a doctor. I’m not naïve about the many problems in medicine and medical research,* but ultimately I trust them.  If there were an effective treatment for Alzheimer’s, I believe researchers would already be studying it and neurologists would be using it.  What ambitious young researcher wouldn’t want to win the Nobel Prize for discovering a cure for Alzheimer’s?

I know well that pharmaceutical companies refuse to fund research from which they can’t profit.  It’s also true that the decades of cutting federal funding for medical research has made independent studies more difficult.  Nevertheless, the government and some independent groups (eg, the Alzheimer’s Disease Cooperative Study) still fund research into treatments with no profit potential, for instance, studies of Vitamin E, Vitamin C, generic ibuprofen and several others have found no evidence of improvement and even some suggestion of harm to people with Alzheimer’s. 

The Scientific method
In order to make sure it’s the treatment that’s responsible for any improvement, the scientific method requires studies that are:

  • Placebo-controlled: Somebody gets the drug and the others get sugar water to make sure it’s the treatment that’s improving things and not just the subjects’ desire for it to work.
  • Randomized: Subjects are placed randomly into a treatment group and a placebo group to make sure the two groups are starting from the same place.
  • Double-blind: To limit bias, neither patient nor researcher knows who’s in what group or what the test results look like until after the study is completely done and reported.
  • Large enough so that they’re statistically valid.  A couple of anecdotes don’t prove anything.

If a treatment doesn't prove effective in such studies, I’m not going to waste my time with it.

What's Wrong With an Anecdote?
So why would a treatment that has been effective for a number of people not pass scientific tests?

  •  The diagnosis may have been wrong in the first place, so a cure doesn’t imply anything about the impact on Alzheimer’s.  The husband of a friend became quite suddenly demented; he was helpless to care for himself and stayed that way for weeks.  With no real treatment, he returned to normal over several months.  Nobody knows what he had or why he’s better.   
  • People with incurable diseases want to believe that a treatment will work.  The power of such faith can be staggering.  Improvement (or the belief in improvement) may have nothing to do with the actual treatment.
  • We know that the symptoms of Alzheimer’s can vary considerably from day-to-day or week-to-week.  If a treatment coincides with one of those upswings, people may credit the treatment.
  • Something else could be causing the improvement.  We already have drugs that improve the symptoms of the disease but don’t affect the underlying course.  Alternative treatments may also improve symptoms without affecting the disease process itself.

How Can It Hurt ?
All right, say my friends, why not try something anyway?  How can it hurt?  Well, any choice has side-effects.

  • Many alternative treatments take significant time away from family, work, and life.
  • Some of the drugs and other treatments are expensive.
  • Other treatments have potential side effects: coconut oil, for instance, has high levels of saturated fat which may lead to heart attacks and stroke.
  • Chasing after rainbows can become an obsession (for instance, my patient with MS in Why Not Try This (1))
  • Especially since I’m a physician and a blogger on Alzheimer’s, my using a treatment just reinforces the unwarranted belief that there are cures out there. 

 I’ve always tried to avoid actions that don’t make sense to me.  To try a treatment because “it can’t hurt” would be for me a form of denial.  Perhaps that’s just pride; maybe so.

To be clear, I don’t want to deter anyone else from pursuing a treatment that gives them hope or comfort.  I’m just writing to explain my rationale for refusing to consider the many treatments continually suggested to me. 
 
* For a devastating critique of medical research, read “Lies, Damned Lies, and Medical Science” by doctor, researcher, and statistician, John Ioannidis.

19 comments:

  1. Inhaled insulin is being studied scientifically (Randomized, double-blind, placebo-controlled trial) by Suzanne Craft at U of Wash.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3260944/

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  2. I do not understand the first post about girlfriends....
    Anyway, clinical trials are personal. Though not without risk... what are the alternatives? Die with the disease anyway. I went to a forum in DC and they are working on this world wide. I live near Boston where they are making great strides. But they need to try this stuff on people with disease.
    We can now get better from so many illnesses that used to kill. My son is in remission from lymphoma... a very aggressive form of it... because they tried the medicine on someone and found something that worked.
    I have a doctor who is careful about which ones he picks to work with. Some of them he will not consider because they do not seem worth the risk for the patient. So it varies.
    What drives me nuts is people running around eating blueberries, drinking coconut oil and doing puzzles... which all have been proven not to work. The myths get out there and the facts get lost. The only proven thing that works so far is exercise... aerobic exercise. Though it does not cure... it somehow slows it.

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    1. Sorry about the "first post," which was spam that I've now deleted. We get about 20 pieces of spam every day; the spam filter picks up most of it, but this one slipped through until I caught it.
      I, too, consider medical research important, and I am happy to go through the inconvenience and (slight) risk to participate.

      Delete
  3. I find that those treatment suggestions folks make seem to be out of a desire to help. But I also find the constant suggestions of things to try to be at least unhelpful and even somewhat blaming the victim---"if he'd only do the coconut oil, he'd be better". Having to smile and be thankful for these suggestions gets tiresome. Even worse to explain to the person making the suggestion that it is not helpful or worth a try. Arrg!

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    1. I'm sure that the suggestions people make for alternative treatment come out of the best of intentions, but I also infer the criticism that there must be something wrong with me if I don't want to hear about the latest whatever.
      It is interesting to me, however, how different we humans can be around some things. My wife Marja can't understand why I don't at least try something. (Fortunately after 44 years we don't have to push each others' buttons about things like this.)

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  4. I am delighted that I am now (finally!!) scheduled to take part in the LMTM scientific phase 3 trials (tau protein) taking place in San Francisco. Phase 2 results looked really positive and I will be offered the drug (whether or not I am on the placebo) after 18 months.

    Plus it just feels good to be taking part in research (my daily motto/mantra: "Thank you, God, how can I help?")

    ...and then there's the fact that the doc behind this tau research is from Scotland, and us celts are just waaay cool.

    ...and then there's the fact that St. Francis is my favorite saint (I spent a wonderful day hiking "his" trails on Mt. Subasio a few years before my diagnosis) -- and his cross is known as the 'tau' cross.

    As for other "wonder cures":

    I became vegan because I heard that inflammation from processing animals is not helpful -- but mainly because I prefer eating vegetables and fruit.

    I tried coconut oil for awhile, but my cholesterol levels sky-rocketed, and I now just use it on my skin.

    I use turmeric a lot -- but that's because I love Indian spices!

    "Brain exercises" (and wow! there is an industry for that now!) proved to be too stressful for me. Accepting my limitations is far less stressful, and I exercise my brain by reading/exploring ideas, places, and people that interest me.

    Gardening cures what ails me on a daily basis.:)

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    1. I was disqualified for the tau trial as it was not for mild MCI. I have to be worse. I was also disqualified for the amyloid BACC trial. Tested too high. This is all good news but frustrating because I want to help. But I did complete an imaging study that was interesting. Good luck with the tau trial. What is the drug company?

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    2. TauRx Therapeutics. I have my first exam next week, and as they have received my most recent reports from my neurologist, I think I'm in. Sure hope so! I was going to take part in an imaging study, but they didn't put one of the protocols in writing for me and my doc had added Namenda -- and if it's not in writing, well....

      Delete
  5. Thanks, Megan. Congratulations on getting into the tau protein trial.
    We all take our separate steps in how we manage ourselves in relationship to this disease. I keep physically active ... but that's because I've always been physically active and enjoy it. As far as I know follow-up studies have indicated brain exercises don't help, but I try to keep exercising my brain anyway--writing, keeping our books, keeping up a website and this blog etc-- ... but all of that is because I enjoy it.

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    1. Yes -- that's the key -- I do (eat, watch, listen, dance, garden) what I ENJOY! whatta concept.

      The Stanford Center on Longevity’s guidance statement on cognitive fitness notes, “Learning stimulates the brain and contributes to one’s general sense of competence. However, there is no evidence that any particular formal training or practice regime is required. Before settling on a particular method and investing time and sometimes money in a particular product, consumers need to consider hidden costs beyond dollars and cents. Every hour spent doing solo software drills is an hour not spent hiking, learning Italian, making a new recipe, or playing with your grandchildren. Other avenues for cognitive enhancement, such as participating in your community and exploring your passions, may also stimulate your mind while producing socially meaningful outcomes.”

      Delete
  6. Anonymous6/06/2013

    My husband has Alzheimers, but it is still mild. He loses a lot of things, and forgets what I asked him 30 minutes ago, but he still has a good quality of life.
    I appreciate this blog so much, and today's installment made me really relate. Everyone has a cure. I had a colleague send me coconut oil and a friend tell me about a treatment in South America. First, I have done enough research to realize this is all false hope, and I am not dragging my husband from one place to another searching for the fountain of cure.
    I think it is all about humility -- to realize that in the case of Alzheimers, we are not in control (totally against my nature). Since we have come to this resolution, we both have a lot more peace in our lives and try to enjoy each day -- one day at a time.

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    1. Each person, of course, has to make his own decision about looking into these potential treatments, but your comment--especially the third paragraph--expresses my feelings very concisely.
      Thank you for this comment.

      David

      Delete
  7. Anonymous6/08/2013

    I might have to agree with you on this. My Mom took two different AD pills. But after just short period of time we could tell it most likely did not work and may have caused other problems. Her Dr 's advice to me was " you can take it and hope it works or look at it like do you really want to prolong these stages because some are not good" and he was right, it was not good for her and was not good for us trying to take care of her. We stopped the AD drugs and did put her Resperdol and Ambien. Mainly for her to stay calm and get sleep at night. She would go 20 hours with no sleep. And was pretty mean without the resperdol. And she had been taking Seroquel and when we increased that to help her get rest before the Ambien & resperdol, she kept getting worse with behavior. So we stopped that and started the other two, Ambien & respectful. I took care of her for eight of the ten years the AD was obvious. She was a handful. But I would do it all over again. She passed away in Oct 2012 I love reading your blogs. I still want to learn about AD and maybe reading your Blog may help me understand more of what she felt and went through. Thank you.

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    1. It sounds like you’ve been through the wringer. There are now two medications that have been approved by the FDA after appropriate testing. They can sometimes help the symptoms of the disease and their results vary significantly among patients; some patients are helped quite a bit, but others actually become worse; overall and on the average, the medications help but not much. When my symptoms get much worse, I may try either or both of the drugs to see if there’s improvement, but I don’t expect much.
      Dealing with the personality changes (anger, paranoia, hostility, etc) can be very challenging. Although some places are working quite successfully without psychotropics, still most places sedate and tranquilize patients once they begin showing changes. Sometimes these help and seem necessary. But they must be followed carefully since they can also make things worse.
      Thank you for writing.

      Delete
  8. I am going to make a counter-argument that alternative treatments provide the very best opportunity to effectively treat Alzheimer's disease--not all of them mind just certain ones.

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  9. This time it worked; last time it didn't, so I will continue

    Alzheimer's disease is primarily caused by an oxidant called peroxynitrite.

    http://www.jneurosci.org/content/17/8/2653.full

    Peroxynitrites through oxidation limit the synthesis and release of neurotransmitters involved in short-term memory, mood, sleep, alertness, and social recognition. They disrupt the transport of glucose which may cause delusions, wandering, and a lack of focus and energy. They contribute to the hyperphosphorylation and nitration of tau proteins which may limit neurotransmissions. They oxidate and nitrate receptors invovled in brain growth and the regeneration of neurons. They mediate the nitration of NMDA receptors which leads to the efflux of glutamate and the influx of calcium which kills brain cells.

    So first, peroxynitrites account for almost all the features of Alzheimer's disease. Secondly, all the risk factors for Alzheimer's disease increase the production of peroxynitrites, including high glucose levels, high blood pressure, stress, mercury, aluminum fluoride, chronic bacterial and viral infections, very low density lipids, high levels of saturated fats, bisphosphonate osteoporosis drugs such as Fosamax, the APOE4 gene, and presenilin gene mutations.

    Thirdly, compounds that reduce the formation of peroxynitrites such as phenols in various spices, fruits, vegetables, and drinks and Omega 3-fatty acids such as fish oil likely prevent or delay the onset of Alzheimer's disease.

    http://www.ncbi.nlm.nih.gov/pubmed/16266772

    Lastly and perhaps most importantly, every peroxynitrite scavenger ever studied has partially reversed Alzheimer's disease either in vitro, in mice, or in human beings. The best peroxynitrite scavengers are methoxyphenols,compounds which also reverse part of the oxidative and nitrative damage done by peroxynitrites. These include eugenol in rosemary essential oil, eugenol and ferulic acid in lemon balm (Melissa officinalis)essential oil, and ferulic acid, vanillic acid, and syringic acid in heat-processed ginseng. Methoxyphenols have partially reversed Alzheimer's disease in three separate clinical trials.

    http://www.ingentaconnect.com/content/ben/cbc/2006/00000002/00000001/art00005

    http://onlinelibrary.wiley.com/doi/10.1111/j.1479-8301.2009.00299.x/full

    http://www.ncbi.nlm.nih.gov/pubmed/21272180

    http://www.ncbi.nlm.nih.gov/pubmed/12810768

    http://www.ncbi.nlm.nih.gov/pubmed/19298205

    http://www.ncbi.nlm.nih.gov/pubmed/22780999

    One can doubt these studies, one can doubt the case studies using peroxynitrite scavengers such as aromatherapy with various essential oils, and one can doubt the scientific research showing the contributions of peroxynitrites to Alzheimer's disease, but it is very hard to doubt all three.

    The fact that so much money has been spent researching anti-amyloid therapies and to a lesser degree anti-tau therapies, and next to nothing has been done to follow up on the studies of peroxynitrite scavengers in the treatment of Alzheimer's disease is one of the grave injustices and great tragedies for all those either with the disease or taking care of someone with the disease.

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    1. I certainly hope that you're right about all this and that a treatment for Alzheimer's can be found through the research you're quoting. I am not remotely capable of evaluating the validity of what you've presented or its relevance to the treatment of Alzheimer's. As far as I'm concerned, that's the job of medical researchers. They've been trained to look at data such as you've presented and evaluate it.
      As I've written, I do have a basic faith in medical science and research. Almost all of the citations above are from the National Institutes of Health, so the scientists there are aware of it. It seems to me that any potentially effective treatment would be evaluated and studied carefully by people who do have the requisite training. (If I were capable of looking at the data and understanding it, surely they would be.) If they determined a treatment to be potentially useful, they would develop it further.
      I do understand that there are many who don't trust the scientific community or even the scientific method and they will have to find their own way. But its with that method and that community that I'm putting my weight down.
      This is a huge issue with powerful opinions on many different sides. What I've written is not meant as a defense of any argument only an attempt to explain why I don't look into the alternative treatments that are proposed.
      Thanks for writing.

      Delete
  10. Iris L.6/11/2013

    Dave, you mentioned Exelon patch on another post, but I can't find it now. I have a dx of cognitive impairment nos (not otherwise specified). My neurologist said I don't have dementia and won't develop dementia. I've been on Exelon patch and Namenda for four years. My symptoms were poor memory, poor executive functions, and poor word-finding. I forgot food cooking on the stove. I don't wander, and have no personality changes except more reserved in mood. My symptoms began twenty-four years ago. I was a physician in my career life.
    Please look into Exelon patch and Namenda. They may help you with your memory and word finding.

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  11. I Wish I Would Have Found Out About Your Blogs Sooner . I Think My Dad Is Approaching The Last Stage , If He Hasn't Already .
    { Mamma Said He Isn't At The Last Stage Yet , But I Would Think He Is Getting Close }

    Gods Good , Ya Know ?

    HE Is The One Who Gives Us What We Need , When Each Moment Comes .

    My Mamma Has Been Amazing Taking Care Of Him .

    God Is Good ALL The Time , ALL The Time God Is Good { In EVERY Situation }

    That Is How I Look At Things Now .

    Please , Keep Up With Your Blogs !!! They Are Interesting To Me .

    ReplyDelete

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