Lewy Body dementia - 'that smell'

K

Kaur Singh

Guest
Unpleasant and pungent...

Inherited metabolic disorders are known to come with smells
Schizophrenia has its own distinct smell - for a while back in the days, it was thought to be a metabolic disorder because of this.
Metabolites in excess that the body cannot excrete through normal means, because they build up too quickly, too high etc.
Cancer also produces a smell that dogs can detect before it is detected through blood work.
True story: there's hospital that trains dogs to detect cancer.
Diabetics can smells of ketones (more alcoholic-like in nature, the smell, it can dissipate faster, doesn't stick around)
Old school doctors, before the advent of evidence-based medicine and blood tests
used smell as one aspect of figuring things out
etc

by pungent - do you mean acrid?

I've had a number of smells exuding through my skin and also with sweat.
One of them was acrid - sour, pungent, sticky, oily. This was whenever my body switched to anaerobic energy production,
something off in my fatty acid metabolism.
Another one, that was trickier in that I couldn't smell it most of the time but those around me could.
Or when I would leave my room, and then come back in, it would hit me.
It started by being a night smell only,
progressed to a day smell, as my metabolism become more and more impaired.
Unpleasant - it sucked the life out of the room
There were more - these two remind me of how you described your husband's smells

There is also a smell that comes from apocrine glands: stress sweat.

It all got better, as I worked on my metabolism,
and as I reduced stresses.
Working at restoring oxidative phosphorylation and mitochondria,
shifting away from burning fatty acids as main source of energy, from catabolic states, etc
All the things in Peat's framework come to bear - thyroid included

The acrid one started making a reappearance
I upped my carbs a bit, as I was hungry for them, and it went away

I had the thought that my sweat could be analyzed, and those substances figured out and where things were going wrong
It would have satisfied my curiosity
It was not necessary to get better
- sticking to the bigger picture and underpinning principles got me there

Tracking his temperature and heart rate throughout the day can be a good place to start
 

Blossom

Moderator
Forum Supporter
Joined
Nov 23, 2013
Messages
11,073
Location
Indiana USA
Thiamine helps to lower serotonin in the brain. Thiamine also helps some dementias.
"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)"
Thiamine to the rescue again!
 

mostlylurking

Member
Joined
May 13, 2015
Messages
3,078
Location
Texas
...and he must be well fed to cope with taking it I believe? More milk shakes....
He'll need some magnesium (not the citrate kind) plus it's a good idea to give him a good quality B-complex as b vitamins tend to interrelate.
 

Hayley

Member
Joined
Sep 15, 2021
Messages
112
Location
United States
Unpleasant and pungent...

Inherited metabolic disorders are known to come with smells
Schizophrenia has its own distinct smell - for a while back in the days, it was thought to be a metabolic disorder because of this.
Metabolites in excess that the body cannot excrete through normal means, because they build up too quickly, too high etc.
Cancer also produces a smell that dogs can detect before it is detected through blood work.
True story: there's hospital that trains dogs to detect cancer.
Diabetics can smells of ketones (more alcoholic-like in nature, the smell, it can dissipate faster, doesn't stick around)
Old school doctors, before the advent of evidence-based medicine and blood tests
used smell as one aspect of figuring things out
etc

by pungent - do you mean acrid?

I've had a number of smells exuding through my skin and also with sweat.
One of them was acrid - sour, pungent, sticky, oily. This was whenever my body switched to anaerobic energy production,
something off in my fatty acid metabolism.
Another one, that was trickier in that I couldn't smell it most of the time but those around me could.
Or when I would leave my room, and then come back in, it would hit me.
It started by being a night smell only,
progressed to a day smell, as my metabolism become more and more impaired.
Unpleasant - it sucked the life out of the room
There were more - these two remind me of how you described your husband's smells

There is also a smell that comes from apocrine glands: stress sweat.

It all got better, as I worked on my metabolism,
and as I reduced stresses.
Working at restoring oxidative phosphorylation and mitochondria,
shifting away from burning fatty acids as main source of energy, from catabolic states, etc
All the things in Peat's framework come to bear - thyroid included

The acrid one started making a reappearance
I upped my carbs a bit, as I was hungry for them, and it went away

I had the thought that my sweat could be analyzed, and those substances figured out and where things were going wrong
It would have satisfied my curiosity
It was not necessary to get better
- sticking to the bigger picture and underpinning principles got me there

Tracking his temperature and heart rate throughout the day can be a good place to start
Interesting. This thread is reminding me of something my husband has told me. His late mother had sever bipolar disorder and he said he knew when one of her manic episodes was coming because she would smell strongly metallic, like a penny. Wonder what caused that...
 

mostlylurking

Member
Joined
May 13, 2015
Messages
3,078
Location
Texas
Thiamine to the rescue again!
Yep. I wish I'd known about it in 2007 when my father was diagnosed with Alzheimer's. Looking back, I realize that my father was floxed (cipro/ciprofloxacin for food poisoning) 4 years prior to being diagnosed with Alzheimers. I'm convinced this is what happened to him.
 

Regina

Member
Joined
Aug 17, 2016
Messages
6,511
Location
Chicago
Interesting. This thread is reminding me of something my husband has told me. His late mother had sever bipolar disorder and he said he knew when one of her manic episodes was coming because she would smell strongly metallic, like a penny. Wonder what caused that...
Wow . "like a penny." Estrogen/copper. Copper build up in the liver as in Wilson's and estrogen exciting the brain.
 

Blossom

Moderator
Forum Supporter
Joined
Nov 23, 2013
Messages
11,073
Location
Indiana USA
...and he must be well fed to cope with taking it I believe? More milk shakes....
Yes, some people have reported low blood sugar when starting thiamine. It’s good to keep that possibility in mind and have some type of snack on hand just in case.
 

Blossom

Moderator
Forum Supporter
Joined
Nov 23, 2013
Messages
11,073
Location
Indiana USA
Yep. I wish I'd known about it in 2007 when my father was diagnosed with Alzheimer's. Looking back, I realize that my father was floxed (cipro/ciprofloxacin for food poisoning) 4 years prior to being diagnosed with Alzheimers. I'm convinced this is what happened to him.
Good grief, I’m so sorry to hear that happened to your father.
As a floxie myself I’ve often wondered about all the people suffering needlessly. I realize these antibiotics can in some instances save peoples lives but those prescribing them really need to do a better job at looking out for potential iatrogenic harm and helping people through the massive fallout. Instead people get brushed off as too sensitive, a hypochondriac or worse (like in your father’s case) end up with a new diagnosis/disease that could have been easily and affordably addressed. Off soapbox.
 

mostlylurking

Member
Joined
May 13, 2015
Messages
3,078
Location
Texas
Good grief, I’m so sorry to hear that happened to your father.
As a floxie myself I’ve often wondered about all the people suffering needlessly. I realize these antibiotics can in some instances save peoples lives but those prescribing them really need to do a better job at looking out for potential iatrogenic harm and helping people through the massive fallout. Instead people get brushed off as too sensitive, a hypochondriac or worse (like in your father’s case) end up with a new diagnosis/disease that could have been easily and affordably addressed. Off soapbox.
Thank you. He started acting wonky after the floxing but then he had to have surgery on his eyelid for cancer about 6 weeks later and he went loony-tunes from the anesthesia so it was hard to pin the mental decline on the floxing. But looking back now I'm aware of how that must have been the start.

I've found more and more medical pharmaceuticals that interfere with thiamine function. It's too much, I've become cynical. I no longer believe it's all "accidental". I didn't get floxed myself; I was done in via Bactrim antibiotic which blocks thiamine and more: Bactrim: An Anti-Folate, Anti-Thiamine, Potassium Altering Drug - Hormones Matter

Have you seen this video? It's an eye opener. This guy goes through a big list of some of the pharmaceutical drugs that block thiamine function:

View: https://www.youtube.com/watch?v=mG3m3tbEGU0


I've learned that it's really important to do an internet search for "(pharmaceutical drug name here) and thiamine" before I swallow any prescription.
 

Blossom

Moderator
Forum Supporter
Joined
Nov 23, 2013
Messages
11,073
Location
Indiana USA
@mostlylurking, I just recently heard of him but haven’t seen that video. Thanks for the video and tip. I definitely agree that there are multiple issues impacting thiamine status.
 

I'm.No.One

Member
Joined
Dec 4, 2021
Messages
747
Location
Oregon
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.
I use 3 aspirin daily (325mg & take vit K with it) & cypro to lower my serotonin.

Editing to add: High serotonin is such a cause of stink (like pungent rotten stress sweat that stains clothes) that it's a common listed side effect of SSRIs.
 
Last edited:

I'm.No.One

Member
Joined
Dec 4, 2021
Messages
747
Location
Oregon
...and he must be well fed to cope with taking it I believe? More milk shakes....
Go crazy slow. A lot of people (including myself) get worse in every way when it's taken.

Might look at adding natural sources food wise into the shakes.
 
K

Kaur Singh

Guest
I wonder if treating the hypothyroidism would reduce the need for life-long high B1 doses...

(Constantini's patients, etc)
 

mostlylurking

Member
Joined
May 13, 2015
Messages
3,078
Location
Texas
I wonder if treating the hypothyroidism would reduce the need for life-long high B1 doses...

(Constantini's patients, etc)
I learned that (at least for me) treating hypothyroidism and addressing the need for high dose thiamine is a balancing act. Too much T3 reduces thiamine (it gets used up, causing a deficiency). Blocked thiamine function also blocked my use of T3 so it rose to dangerous levels in my blood while I experienced severe hypothyroid symptoms. I recovered by taking high dose thiamine hcl (2 grams/day) AND cutting my dose of prescription natural desiccated thyroid down from 180mg/day to 135mg/day. I get blood tests every 6 months to monitor how I'm doing with my endocrinologist.
 

haidut

Member
Forum Supporter
Joined
Mar 18, 2013
Messages
19,799
Location
USA / Europe
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.

PUFA peroxidation, which is a proven cause of both of those diseases, creates volatile and unpleasant-smelling compounds. In general, elevated lipolysis would worsen body odor due to many other such peroxidation products being formed, and this is one reason why a long session of endurance exercise makes people smell unpleasantly. There are other reasons too, but this is one of them.
@Rinse & rePeat

Elevated prolactin and estrogen, which are also higher in such people, also contribute to the pungent smell. Dogs are very good at detecting that smell even when it is very faint (years before diagnosis) and this is why they now propose to use dogs for early diagnosis, and not just Parkinson's.
"...Besides cancer and malaria, dogs can also detect Parkinson's disease. Parkinson's sufferers smell different even years before they have the disease. Dogs could therefore be used in detecting early onset of the disease and treating patients pre-emptively, before the symptoms get irremediably too severe."
 
EMF Mitigation - Flush Niacin - Big 5 Minerals

Similar threads

Back
Top Bottom