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Wednesday, November 17, 2010

My Frontotemporal Dementia And Alternative (Herbal) Medicine - Quack! Quack!

Woody Allen said: "My brain? That's my second favorite organ."

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD (Frontotemporal Dementia - Pick's) is different. Keep in mind as you read this that the person who wrote this has dementia - bvFTD. That would be ME.
Medical Disclaimer

There are no approved drugs at this time for FTD - Frontotemporal Dementia - Pick's Disease. There are several drugs approved for Alzheimer's Dementia which are widely prescribed for patients with FTD and bvFTD.

Four drugs have shown at least modest benefit for Alzheimer's disease or non-Alzheimer's dementia: Reminyl, Exelon, Aricept, and Cognex. These medications usually produce a modest improvement in mild to moderate Alzheimer's disease by increasing the duration of action of acetylcholine. However, they can cause sometimes severe side effects due to the exaggeration of acetylcholine's action in other parts of the body. They may be of some benefit, or not. Research results, when there are any available, are often conflicting. Every case of FTD is different.

Ginkgo
So, what about non-traditional medicine? What about dietary supplements and herbs? Spices? Mushrooms? Vitamins? In my opinion since nobody seems to know much for certain about treatments for FTD, as long as it isn't doing any harm, it is worth a try. All there is to lose is a few bucks to put in the pocket of a quack supplement company. All there is to gain is a slowing of progression, or easing of symptoms. Is it worth the gamble? For me, I think it is. But caution is in order.

Whether the herbs are effective as claimed or not, they do interact with medications and each other. Uninformed multiple herb use can lead to unexpected side effects, toxicity, and even death. The greater the number of medications taken, the greater the number of possible interactions. I checked with my doctors first, and plan to keep them informed on what I am taking just to be safe.

So, I did some research. For me, with FTD, that means a few weeks of research.  Thinking is hard. This whole idea started when a friend sent me an email about some weird mushroom and dementia. I thought she was crazy. Come on! A mushroom? Well - I looked it up on the internet - and we all know that if it is on the internet it must be true! That is how this all started.

The first thing I wanted to do was to try and find some actual scientific research studies on the effectiveness of specific herbal supplements on dementia. I also wanted to see studies debunking supplement claims for treating dementia. Anything written by a company that sells the stuff doesn't count for obvious reasons. Virtually all of the research deals with Alzheimer's Disease, so making the jump to say it benefits Frontotemporal Dementia is a big assumption. That is the assumption I am going to make based on the wide practice of prescribing Alzheimer's drugs for FTD. I realize that the chemical pathways of the diseases are not exactly the same, but for now that is the best I have to go on.

One of my assumptions is that if FTD is based on an atrophy of the Frontal and Temporal Lobes of the brain because of a build-up of Tau Proteins anything which causes brain cells in general to increase in number is going to be on the right track. In my case my MRI has shown severe brain atrophy so I am very interested in increasing brain volume. Bigger is better! I figure if I can increase the number of brain cells, my brain will figure out how to hook them up to work where it needs them most. Likewise anything which helps to prevent brain cells from dying is also on the right track. That is my basic criteria. If there is something which may help alleviate the acute symptoms by helping with cognition or memory that would also be a good fit for me.

I checked on Fish Oil, and found that there was no evidence that it was beneficial in any way. I find it disgusting, so I was very pleased. Omega 3 Fatty Acids are available from other sources, which do not come back to haunt you. As a side note (according to Dr. Oz!) if you keep it in the refrigerator it helps because it does spoil, and that is when it really causes those bad fishy-belches. Yuck!

There has been a lot of controversy of late on the effectiveness of Ginkgo Biloba (Which if nothing else is fun to say!). In my personal opinion, the jury is still out. The study which showed it did not have a significant effect was on patients so old and advanced I am amazed they survived to the end of the trial. At the very least the research is "conflicting". The other is Phosphatidylserine. I had never even heard of this one. Following is a widely quoted synopsis of the effects of these two herbal supplement natural treatments on dementia.

I found the following, and some other good info at the Health Library. . (I took the liberty of removing the footnotes.)

There are two natural treatments for Alzheimer's disease with significant scientific evidence behind them: ginkgo and phosphatidylserine. Huperzine A and vinpocetine, while more like drugs than natural remedies, may also improve mental function in people with dementia. Acetyl-L-carnitine was once considered a promising option for this condition as well, but current evidence suggests that it does not work.

Ginkgo - Ginko... whatever!

The most well-established herbal treatment for Alzheimer's disease is the herb Ginkgo Biloba. Numerous high quality double-blind, placebo-controlled studies indicate that ginkgo is effective for treating various forms of dementia.  One of the largest was a 1997 US trial that enrolled more than 300 participants with Alzheimer’s disease or non-Alzheimer’s dementia.  Participants were given either 40 mg of Ginkgo Biloba extract or placebo 3 times daily for a period of 52 weeks. The results showed significant but not entirely consistent improvements in the treated group.

Another study published in 2007 followed 400 people for 22 weeks, and used twice the dose of ginkgo empl
oyed in the study just described. The results of this trial indicated that ginkgo was significantly superior to placebo. The areas in which ginkgo showed the most marked superiority as compared to placebo included, “apathy/indifference, anxiety, irritability/lability, depression/dysphoria and sleep/nighttime behavior.”

On the other hand, one fairly large study of ginkgo extract drew headlines for concluding that ginkgo is ineffective.  This 24-week, double-blind, placebo-controlled study of 214 participants with either mild to moderate dementia or ordinary age-associated memory loss found no effect with ginkgo extract at a dose of 240 mg or 160 mg daily. However, this study has been sharply criticized for a number of serious flaws in its design.  But in another community-based study among 176 elderly subjects with early-stage dementia, researchers found no beneficial effect for 120 mg of ginko extract given daily for 6 months.

The ability of ginko to prevent or delay a decline in cognitive function is less clear. In a placebo-controlled trial of 118 cognitively intact adults 85 years or older, ginkgo extract seemed to effectively slow the decline in memory function over 42 months. The researchers also reported a higher incidence of stroke in the group that took ginko, a finding that requires more investigation.

In a 2009 review of 36 randomized trials involving 4,423 patients with declining mental function (including dementia), researchers concluded ginkgo appears safe but there is inconsistent evidence regarding whether it works.



Search Amazon.com for ginko biloba

 OK, that is a start. Here is another which I think may be promising, and is widely available and has a good safety record.


Melatonin. I found a whole bunch of studies which suggest that Melatonin may stimulate the growth of brain cells, and help protect them from dying. Since it also helps you get a good nights sleep I figure it is worth a try. If it doesn't have any adverse side effects it falls into the "Can't hurt" category.

 Search Amazon.com for Melatonin



Phosphatidylserine (PS)

Phosphatidylserine (PS) is one of the many substances involved in the structure and maintenance of cell membranes. Double-blind studies involving a total of more than 1,000 people suggest that phosphatidylserine is an effective treatment for Alzheimer's disease and other forms of dementia.

The largest of these studies followed 494 elderly subjects in northeastern Italy over a course of 6 months. All suffered from moderate to severe mental decline, as measured by standard tests. Treatment consisted of 300 mg daily of either PS or placebo. The group that took PS did significantly better in both behavior and mental function than the placebo group. Symptoms of depression also improved.

These results agree with those of numerous smaller double-blind studies involving a total of more than 500 people with Alzheimer's and other types of age-related dementia.


I had never even heard of this chemical, so I looked it up on WebMD. The above studies were all conducted on the chemical derived from cow brains, so since the form now available has changed it is possible the effects have also. There is an irony when a chemical derived from a cabbage may help with brain cell structure - I'm just sayin'...

Anyway - according to WebMD:
The body can make phosphatidylserine, but gets most of what it needs from foods. Phosphatidylserine supplements were once made from cow brains, but now are commonly manufactured from cabbage or soy. The switch was triggered by a concern that products made from animal sources might cause infections such as mad cow disease.

Phosphatidylserine is used for Alzheimer's disease, age-related decline in mental function, improving thinking skills in young people, attention deficit-hyperactivity disorder (ADHD), depression, preventing exercise-induced stress, and improving athletic performance.

There is currently no standard recommended phosphatidylserine dosage. In studies, doses of 100 mg three times daily have been used to treat Alzheimer's disease, dementia, and age-related declines in cognitive function. Studies have also used doses of 200 to 300 mg daily for ADHD treatment. However, it is not known whether these are the most effective and safe phosphatidylserine doses.


Phosphatidylserine sounds very promising because it specifically targets the cell structure of the brain. It is the collapse of the Tau Protein in the cell structure that is believed to be the major cause of Frontotemporal Dementia. At least that is what I have read if I am understanding it correctly. It seems to be a different pathway from the tangles associated with Alzheimer's Disease.

 Search Amazon.com for Phosphatidylserine


And lastly, the big one. The one that started it all. The one which sounds the most ridiculous. Even more ridiculous than a cabbage-head.

Lion's Mane Mushroom



 Yup! A mushroom. Not just any mushroom, but a scraggly thing that looks more like a pile of old shriveled up spaghetti than a 'shroom. My biggest reservation with Lion's Mane is that almost all of the research is done by a single scientist in Japan (Kawagishi, H.) - who also just happens to be the one who sells an extract and methodology for producing it. That said, there is also some replication of his research, and it is so strong that if it is actually sound it is worth a shot. Lion's Mane seems to promote the regeneration of brain cells by providing a precursor of the neural growth hormone which can pass through the blood-brain barrier. Since there are like zero side-effects on this one - I am in. At least it is worth a try, and it is now widely available at a reasonable price.

 Search Amazon.com for Lion's Mane


All of the other herbal remedies I have researched seem to me to be based on anecdotal evidence, sales propaganda, or have no research to support the claims. There are a few which fall into the category of spices such as Turmeric that I may add to my cooking when convenient, but nothing that I think will have any real benefits. I already use Sage, Olive Oil, Hot Peppers, and Garlic on a regular basis, and am working on using more Curry, so I think I have that category well covered. Wine is good, too!

I made my monthly visit to my neurologist this morning. Since I was there I asked him if he thought there was any danger in trying any supplements. His first answer was that all he recommended was a general daily multivitamin. When I explained I was not talking about vitamins, but some herbal remedies, he said it was OK to try them after we discussed exactly what I was considering. I was surprised he was not more of an advocate because of his Egyptian heritage, but he, like me, is a skeptic. My main concern was for some interaction with the drugs I am taking, and from that perspective he basically said I was OK to try some alternative treatments. Melatonin was the one I was most concerned about because of its interactions with choline, but he said I could give it a try.

I estimate the total drug-store cost of all of these supplements to be around $35 a month without Phosphatidylserine, and twice that with it included. Amazon prices are much better for the exact same products. That is a pretty hefty expense... unless they have the benefits attributed to them. In that case it would be a bargain at any price.

I am not planning on starting to take all of these right away - just the Melatonin and Ginkgo Biloba because they happen to be on sale right now, and have a good track record. I am going to wait, and think it over. I need some additional input from some non-demented minds. If I do decide to try them I will probably start them one at a time just to be cautious. All of these have published double-blind research studies of at least some sort to show that they may have an effect - though some of the methodology/analysis is questionable. That is promising - better than what is available for most vitamins.

Quack! Quack! ...Quack?

For right now I am still evaluating the benefits - if any - of taking Aricept. As of two days ago I increased my dose from 5 to 10 mg. It is too early to tell for sure, but the early results have been very positive once I got past the sometimes frustrating side-effects. But that is the subject of a future post.

Comments are welcome.

17 comments:

  1. I have been taking Melatonin for awhile for sleep disorders. The comments on the bottle say not for pregnant women or those under 18 yrs. old. Also, after 2 months of steady use, you should not take it for 1 week, then resume. Doesn't say why. I find some nights it works really well, other nights not at all for my problems. Hope it works for you.

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  2. Thanks for the comment Matilda.

    Mine does not say any of that stuff. You need to change brands ; )

    I would not be taking Melatonin for sleeping, though it would help with that too. It has been shown in some very recent animal studies to stop the breakdown of Tau Proteins in the brain. It may or may not do that in humans, but I am not going to wait around for the research to catch up.

    -Lee

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  3. Hey very nice blog!! Man .. Beautiful .. Amazing .. I will bookmark your blog and take the feeds also…

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  4. I would be careful with melatonin cause that is how my circadian rhythm got messed up in college. I would just randomly have to sleep in the middle of the day or sometimes couldn't sleep at all. So I would Deff say be careful with that one since you used to be an insomniac anyhow

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  5. Thanks for the comment Ian.

    Yuppers! I am carefully watching the dosage. If I take 6mg sometimes I do not sleep well, but I do not seem to have any side effects from a 3 mg dose. The problem is that the research for FTD was done with a 10 mg dose. I am thinking that is way too much for me probably because I am producing the balance on my own (and am not a mouse!), so I am going to try to find the max I can take without any side effects. It is a good night's sleep if nothing else.

    As for your messed up circadian rhythms... couldn't have had something to do with staying up all night drinking and partying now could it? I'm just sayin' ; )

    -Lee

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  6. Thank you, nice job! This was the stuff I had to have..

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  7. Really informative blog post here my friend. I just wanted to comment & say keep up the quality work. I’ve bookmarked your blog just now and I’ll be back to read more in the future my friend! Also well-chosen colors on the theme it goes well with the blog in my modest opinion :)

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  8. Thank you for the comments. I appreciate the encouragement.

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  9. My mom may have frontotemporal dementia. The specialist who is still trying to figure it out says schizophrenia is the other "option". The jury is still out on this. It has been difficult for me and all my siblings to understand/cope with her rapid, mental decline. We are praying/hoping. I'm glad to find your site. Maybe these herbs you are finding will help. I'll share with my family:) As I pray for answers for my mom...I'll pray 4 you too.

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  10. think I left a couple comments...not sure if either are posted, though.

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  11. It looks as if you've done very good research on this, in terms of checking out the pros and cons, so I hope you're able to get the advantage of trying some of these. While it's important to avoid scams that prey on people with illnesses, it does seem that there's more to gain than to lose with some of these alternative treatments. Another avenue is clinical trials (http://www.clinicaltrials.gov/ct2/results?term=frontotemporal+degeneration), but that's more focused on drugs and other traditional methods.

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  12. Carla (carlapat11@gmail.com)March 28, 2011 at 12:25 PM

    Thanks for your blog !!!
    very helpful for me at this moment, in which my mom possibly has FTD.

    Do you think that Aricept has helped you?

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  13. Thanks for the Comment Carla.

    I have a few posts about Aricept, one from just a few days ago. In short, yes, I do think it has helped with my cognitive issues, but probably not with behavior. Some of the side-effects can be frustrating, but they go away after a few weeks.

    If you click on the word Aricept at the bottom of a post it should bring up all of the posts related to Aricept.

    Best of luck. Some days are better than others.

    ~Lee

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  15. camelscout@gmail.comDecember 19, 2015 at 7:38 AM

    Three days ago my physicians assistant for a doctor told me I may have Picks (after getting back the results of a brainscan MRI for headaches)... I didn't know what that meant and didn't really freak out until she sent to a neurologist for further examination. She didn't tell me why but I go in to see the neurologist on Tuesday because he felt the need to make room for me after looking over the MRI. Arachnoid Cysts and Picks is the suggested diagnosis and the neurologist will either confirm or tell me to get a doctor who won't play head games (pun intended). After spending the last three days sleeping as usual for about 3 hours (thanks Army) and studying up on Picks and FLD, I am freaking the hell out. I have an 8 year old boy and 5 year old girl with a beautiful wife who is also in the Army. They don't need this! Sorry, done venting. I am typically a guy who just needs facts and I can't get them. All I seem to be getting is maybe this or that oh and be prepared to get medically discharged. So how will I pay for a funeral if I'm kicked out and what about life insurance! Sorry, still ranting.
    Moving along, I am hoping (praying) for a solid here. Does anyone have anymore intel as to what works or doesn't. Please!

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