Lewy Body dementia - 'that smell'

[Lizb]

My husband has Lewy Body Demntia and Alzheimer's.

Even before diagnosis he had that smell which is unpleasant and pungent. He doesn't know he has it (poor sense of smell) and I haven't told him.

On discussion threads (not here) I have seen people recommending shaving cream and deodorant soaps, all with non-Peaty ingredients. Maybe I shouldn't be worrying about that at this stage?

On same discussion threads people say it comes from the upper back area.

I personally extremely rarely have a sense of smell, BUT oddly can be 'aware' of said smell occasionally on him; I'm guessing when it's particularly strong. Thus it's difficult for me to judge on a daily basis how strong this smell is. I'm mindful not to embarrass him when in company by him having this pungent scent on him, and I don't want the house to smell!

Any useful comments, experiences or ideas would be much appreciated.

 

[Rinse & rePeat]

My husband has Lewy Body Demntia and Alzheimer's.

Even before diagnosis he had that smell which is unpleasant and pungent. He doesn't know he has it (poor sense of smell) and I haven't told him.

On discussion threads (not here) I have seen people recommending shaving cream and deodorant soaps, all with non-Peaty ingredients. Maybe I shouldn't be worrying about that at this stage?

On same discussion threads people say it comes from the upper back area.

I personally extremely rarely have a sense of smell, BUT oddly can be 'aware' of said smell occasionally on him; I'm guessing when it's particularly strong. Thus it's difficult for me to judge on a daily basis how strong this smell is. I'm mindful not to embarrass him when in company by him having this pungent scent on him, and I don't want the house to smell!

Any useful comments, experiences or ideas would be much appreciated.

This is interesting because my dad has had a pungent smell for at least the past 10+ years that he hadn't had before and he now has Alzheimer's. I know he doesn't bathe much, but hearing the many people on the forum who don't bathe much either, or wash their hair, they swear they don't smell, and say they have confirmed that by asking people around them if they smell. So maybe this is more of what's going on. I am not sure what to think now.

 

[I'm.No.One]

Have you seen the connection between high serotonin & body odor?

Same goes for the connection between high serotonin & Alzheimers/dementia?

Both might be worth looking into.

My BO used to be horrendous, like no matter what I did/ate/worked on stress etc.

Then, I drastically lowered my serotonin & out of the blue I just don't stink any more. I'm talking I tested it & made it 4 days with no deodorant before I even got a little bit of funk. Blew my mind?

 

[Lizb]

Have you seen the connection between high serotonin & body odor?

Same goes for the connection between high serotonin & Alzheimers/dementia?

Both might be worth looking into.

My BO used to be horrendous, like no matter what I did/ate/worked on stress etc.

Then, I drastically lowered my serotonin & out of the blue I just don't stink any more. I'm talking I tested it & made it 4 days with no deodorant before I even got a little bit of funk. Blew my mind?

I'm aware that serotonin is and issue but not particularly for body odour. Thanks for the thought.

What did you do to lower your serotonin please?

I'm likely to email Ray about this at some point.

 

[Lizb]

This is interesting because my dad has had a pungent smell for at least the past 10+ years that he hadn't had before and he now has Alzheimer's. I know he doesn't bathe much, but hearing the many people on the forum who don't bathe much either, or wash their hair, they swear they don't smell, and say they have confirmed that by asking people around them if they smell. So maybe this is more of what's going on. I am not sure what to think now.

Mmmm.....

 

[Rinse & rePeat]

"I was just reading about Robin Williams. The thing that amazes me about a story like this is that no one figured out he had Lewy Body Dementia until autopsy. This disease is in a way scarier than Alzheimer's because I think it starts to hollow out your brain. That really is scary.

I was sitting here pondering how a person could get such a thing. And also -- RW was about 63 I think, which means that brain changes could have started in his fifties. How does one get such a thing? Would Methylene Blue help or preserve function?"

I am really starting to hate how clueless our medical establishment is. Suicide should not be an acceptable therapy, you know?

Lewy Body Dementia

I was just reading about Robin Williams. The thing that amazes me about a story like this is that no one figured out he had Lewy Body Dementia until autopsy. This disease is in a way scarier than Alzheimer's because I think it starts to hollow out your brain. That really is scary. I was...

raypeatforum.com

 

[Rinse & rePeat]

...

Mmmm.....

I know I am am doing the same....

 

[Lizb]

"I was just reading about Robin Williams. The thing that amazes me about a story like this is that no one figured out he had Lewy Body Dementia until autopsy. This disease is in a way scarier than Alzheimer's because I think it starts to hollow out your brain. That really is scary.

I was sitting here pondering how a person could get such a thing. And also -- RW was about 63 I think, which means that brain changes could have started in his fifties. How does one get such a thing? Would Methylene Blue help or preserve function?"

I am really starting to hate how clueless our medical establishment is. Suicide should not be an acceptable therapy, you know?

Lewy Body Dementia

I was just reading about Robin Williams. The thing that amazes me about a story like this is that no one figured out he had Lewy Body Dementia until autopsy. This disease is in a way scarier than Alzheimer's because I think it starts to hollow out your brain. That really is scary. I was...

raypeatforum.com

I remember reading that on the forum.

My husband's condition was indeed 10 years in the making.

It could have been triggered by medication for an overactive bladder, but he also had life traumas at that time too.

It's incredibly sad and painful to watch.

 

[Rinse & rePeat]

I remember reading that on the forum.

My husband's condition was indeed 10 years in the making.

It could have been triggered by medication for an overactive bladder, but he also had life traumas at that time too.

It's incredibly sad and painful to watch.

It has been sad for me too, watching my father change so drastically. Us talking about it brings awareness to others who are in early stages of their battles. We just have to lemonade out lemons.

 

[mostlylurking]

I'm aware that serotonin is and issue but not particularly for body odour. Thanks for the thought.

What did you do to lower your serotonin please?

I'm likely to email Ray about this at some point.

Thiamine helps to lower serotonin in the brain. Thiamine also helps some dementias.

Effect of thiamine deficiency on brain serotonin turnover - PubMed

Serotonin turnover has been investigated in regional brain areas of rats made thiamine deficient by pyrithiamine (PT). Following intracisternal injection of [14C]5-hydroxytryptamine ([14C]5-HT), a marked increase in the accumulation of [14C]5-hydroxyindoleacetic acid ([14C]5-HIAA) was found in...

pubmed.ncbi.nlm.nih.gov

Vitamin B1 (thiamine) and dementia - PubMed

The earliest and perhaps best example of an interaction between nutrition and dementia is related to thiamine (vitamin B1). Throughout the last century, research showed that thiamine deficiency is associated with neurological problems, including cognitive deficits and encephalopathy. Multiple...

pubmed.ncbi.nlm.nih.gov

Dementia Factsheet

All types of dementia are progressive, which means that the functioning of the brain will change over time. However, each type of dementia affects everyone differently and with the right support, i…

lewybodydementia.home.blog

"Researchers don’t yet have a full understanding of why Lewy bodies appear, but DLB is linked to low levels of important chemicals (mainly acetylcholine and dopamine) that carry messages between nerve cells, causing a loss of connections between nerve cells."

Thiamine is required to make acetylcholine. Acetylcholine: How and Why to Optimize the Synthesis of this Vital Neurotransmitter
"Particularly noteworthy is the role that thiamine plays in ACh production. "The role of thiamine as a crucial coenzyme in neuronal metabolism of carbohydrates and neurotransmitters, especially acetylcholine, has been well elucidated." (Hirsch, 2011) The administration of benfotiamine, a form of thiamine, alone has been shown to reverse the symptoms of Alzheimer's disease, which has been linked to low ACh levels. (Pan, 2016)"

 

[Gânico]

In ancient times when people start smelling bad they knew they were diseased, nowadays this is just swept under the rug by cosmetic band-aid fixes.

Anyways, you can use sulfur soap for shower and baking soda as deodorant, those two are very good to keep the smell away, and are endorsed by Peat, but you should always try to help him focusing on the root of the disease, if u aren't already.

 

[Lizb]

In ancient times when people start smelling bad they knew they were diseased, nowadays this is just swept under the rug by cosmetic band-aid fixes.

Anyways, you can use sulfur soap for shower and baking soda as deodorant, those two are very good to keep the smell away, and endorsed by Peat itself, but you should always try to help him focusing on the root of the disease, if u aren't already.

Thank you. I'll get a sulphur soap.

 

[Lizb]

Thiamine helps to lower serotonin in the brain. Thiamine also helps some dementias.

Effect of thiamine deficiency on brain serotonin turnover - PubMed

Serotonin turnover has been investigated in regional brain areas of rats made thiamine deficient by pyrithiamine (PT). Following intracisternal injection of [14C]5-hydroxytryptamine ([14C]5-HT), a marked increase in the accumulation of [14C]5-hydroxyindoleacetic acid ([14C]5-HIAA) was found in...

pubmed.ncbi.nlm.nih.gov

Vitamin B1 (thiamine) and dementia - PubMed

The earliest and perhaps best example of an interaction between nutrition and dementia is related to thiamine (vitamin B1). Throughout the last century, research showed that thiamine deficiency is associated with neurological problems, including cognitive deficits and encephalopathy. Multiple...

pubmed.ncbi.nlm.nih.gov

Dementia Factsheet

All types of dementia are progressive, which means that the functioning of the brain will change over time. However, each type of dementia affects everyone differently and with the right support, i…

lewybodydementia.home.blog

"Researchers don’t yet have a full understanding of why Lewy bodies appear, but DLB is linked to low levels of important chemicals (mainly acetylcholine and dopamine) that carry messages between nerve cells, causing a loss of connections between nerve cells."

Thiamine is required to make acetylcholine. Acetylcholine: How and Why to Optimize the Synthesis of this Vital Neurotransmitter
"Particularly noteworthy is the role that thiamine plays in ACh production. "The role of thiamine as a crucial coenzyme in neuronal metabolism of carbohydrates and neurotransmitters, especially acetylcholine, has been well elucidated." (Hirsch, 2011) The administration of benfotiamine, a form of thiamine, alone has been shown to reverse the symptoms of Alzheimer's disease, which has been linked to low ACh levels. (Pan, 2016)"

Much appreciated. I'll read that tomorrow.

 

[mostlylurking]

In ancient times when people start smelling bad they knew they were diseased, nowadays this is just swept under the rug by cosmetic band-aid fixes.

Anyways, you can use sulfur soap for shower and baking soda as deodorant, those two are very good to keep the smell away, and are endorsed by Peat, but you should always try to help him focusing on the root of the disease, if u aren't already.

I found from personal experience that I cannot tolerate sulfur soap; it irritates my skin and it really hurts, for days afterward. Soaking in a bath with baking soda and epsom salt (1/2 cup of each) might be helpful though.

 

[Kaur Singh]

.

 

[mostlylurking]

Much appreciated. I'll read that tomorrow.

You might find Dr. Costantini's work with Parkinson's Disease patients of interest. He used high dose thiamine hcl exclusively and got amazing results. His website is here: HIGH-D0SE THIAMINE (HDT) THERAPY for Parkinson's Disease . Videos (very short before and after treatment) of his patients are here: Videos Parkinson's Patients before and after treatment - Ultima Edizione.Eu . There are some short interviews of patients (in Italian) so the subtitles option when viewing is helpful.

 

[Lizb]

I found from personal experience that I cannot tolerate sulfur soap; it irritates my skin and it really hurts, for days afterward. Soaking in a bath with baking soda and epsom salt (1/2 cup of each) might be helpful though.

Noted, thank you. I'll get some soap and will try it anyway.

We do the bath with salts and bicarbonate but not every night. I'll get him to be more consistent and I should make the effort to rub his back for him. I just wish I had a better sense of smell myself so I could monitor it better.

I do appreciate your time.

 

[Diokine]

I think some of this odor could be caused by compounds related to ceramides, which are products of fat and lipid metabolism in cells. These lipids are involved in normal cell metabolism, especially in barrier cells like skin. A progressive failure of metabolism will impair the ability to handle these fats, and they in turn complex with other molecules and acquire alkyl groups, becoming in essence waxy fatty acid alcohols. These undergo further reactions like esterification, lose water solubility, and ultimately form compounds not unlike floral fragrance molecules. Excessive prostaglandin activity and unremediated inflammation, along with progressive loss of oxidative potency, are major factors in this.

I think there is some evidence that aspirin could be effective in reducing the prostaglandin load and oxidation of fatty acids, which could be beneficial. High dose biotin (10g/eod or something like that) can rescue parts of fatty acid oxidation. Niacin can shift the balance of fatty acid oxidation products, as well as changing the activity of idole-handling enzymes. Dietary butyrate or stearic acid (butter or beef fat) might be effective at protecting some of these compounds from degradation. A supplemental intake of choline might be helpful.

I think thiamine is also important, to echo others in this thread. Deficiency has been shown to alter fatty acid composition. A folate deficiency could contribute as well.

 

[Lizb]

You might find Dr. Costantini's work with Parkinson's Disease patients of interest. He used high dose thiamine hcl exclusively and got amazing results. His website is here: HIGH-D0SE THIAMINE (HDT) THERAPY for Parkinson's Disease . Videos (very short before and after treatment) of his patients are here: Videos Parkinson's Patients before and after treatment - Ultima Edizione.Eu . There are some short interviews of patients (in Italian) so the subtitles option when viewing is helpful.

Right I'll have a good look at that. Thank you very much.

 

[Lizb]

I think some of this odor could be caused by compounds related to ceramides, which are products of fat and lipid metabolism in cells. These lipids are involved in normal cell metabolism, especially in barrier cells like skin. A progressive failure of metabolism will impair the ability to handle these fats, and they in turn complex with other molecules and acquire alkyl groups, becoming in essence waxy fatty acid alcohols. These undergo further reactions like esterification, lose water solubility, and ultimately form compounds not unlike floral fragrance molecules. Excessive prostaglandin activity and unremediated inflammation, along with progressive loss of oxidative potency, are major factors in this.

I think there is some evidence that aspirin could be effective in reducing the prostaglandin load and oxidation of fatty acids, which could be beneficial. High dose biotin (10g/eod or something like that) can rescue parts of fatty acid oxidation. Niacin can shift the balance of fatty acid oxidation products, as well as changing the activity of idole-ha enzymes. Dietary butyrate or stearic acid (butter or beef fat) might be effective at protecting some of these compounds from degradation. A supplemental intake of choline might be helpful.

I think thiamine is also important, to echo others in this thread. Deficiency has been shown to alter fatty acid composition. A folate deficiency could contribute as well.

Thank you. Some actions I can introduce.

I did try asprin but he happened on that very day to have a blood test in which blood showed up. Maybe add asprin to the bath....