PD smell

[saraoutwest]

Has anyone any tips in getting rid of thePD smell? I definitely have that oily waxy sebum and I’m sure it smells not great. I’m interested in its connection with the microbiome

[parkie13]

Soap, water and a soft body brush.

[kaypeeoh]

Use dandruff shampoo and a stiff brush all over. That picks up all the dead cells. Dr Mischely is training dogs to sniff and identify PD patients.

[Boscoejean]

Joy Milne said that the smell persisted on her husband even with showering frequently.

I believe it can diminish with some treatments such as treatment for SIBO

this from a search- I would like to hear what Laurie Mischley has to say about this

"How do you get rid of smelly sebum?

If you are already experiencing sebum that smells like cheese, it is recommended to consult with a dermatologist or healthcare professional for a proper diagnosis and treatment plan. They may recommend topical treatments, such as antibacterial creams or retinoids, to help control sebum production and reduce odor."

statcarewalkin.com/info/why....

[Biohacker2020 in reply to Boscoejean]

Parkinson’s disease has a distinct smell? I didn’t know that..

[gomelgo in reply to Biohacker2020]

michaeljfox.org/news/ask-md....

[Boscoejean]

Which vitamin deficiency causes sebum production?

Vitamin D seems to inhibit sebocyte proliferation, differentiation, and sebum secretion, all of which are key factors in the production of sebum. There is no correlation between serum ALP levels and acne.

[Reetpetitio in reply to Boscoejean]

Just a heads up that K2 must always be taken with D (preferably D3) so that the resulting calcium is pushed into bones and teeth and not laid down in arteries.

[gomelgo in reply to Reetpetitio]

I wonder if sunshine every day would help with the smell and the sebum as well.

[Reetpetitio in reply to gomelgo]

interesting thought.... fat chance of that here in the UK!

[Painture in reply to Reetpetitio]

some tanning beds give a boost in D vitamins

[Reetpetitio in reply to Painture]

Yes; I'm vain enough to care about wrinkles! Used a sunbed twice for the first time in decades in November, and developed my first marionette line this month - coincidence? Probably, but I don't really want to damage my skin.

Did feel amazing though!

[Boscoejean]

What foods are linked to sebum production?

Foods that contain a high amount of sugar (especially processed ones) and refined carbohydrates (such as white rice, and white pasta) accelerate IGF-1 production. IGF-1 is a hormone that promotes growth and plays a crucial role in sebaceous gland physiology (sebum or oil production).

[LAJ12345]

I think getting gut working properly is the way.

Hubby took berberine and allimed garlic and probiotics for a year, changed diet to eliminate gluten, sugar and processed food and seed oils. At first he felt way worse. I think while gut bacteria were dying off. He lost a lot of weight in 6 months then stabilised and has been the same weight since.

He takes pantethine double strength 600 mg per day. Also his acne and roseacea has gone

Now I rarely notice a smell.

[Reetpetitio in reply to LAJ12345]

Curious to know if there were any other changes; any improvements from all that, or decrease in deterioration? Hats off to him!

[LAJ12345 in reply to Reetpetitio]

I think compared to where he was at the start he is much healthier. He has more energy , lost weight to a healthy level, and at the moment is feeling good again. His frozen face is gone again, he is happy and laughing. His depression and anxiety are under control at the moment.

Hands don’t work well, and he has the Parkinson’s walk with still arms still. And ED still.

He is on pretty low meds still

50/12.5 madopar IR at 8am, 11. ,2. ,5 (whole pills) and extra half at 6.30am, 9.30, 3.30 and 8pm. So 4 whole and 4 halves of madopar a day.

He takes 3 NOW capsules over the day with some of his whole madopar tablets.

Clonazapam 0.5 mg 1.25 tablets a day cut into quarters,

And 1 entacapone tablet cut into 1/3 spread over the day.

And 10mg melatonin at night for sleep.

I don’t think he is worse (as long as he takes these meds) than he was 5 years ago on testing of chest beating and hand tapping on his knees. He doesn’t complain about feeling fluey every few weeks like he used to, and he doesn’t need to sleep half the day like he was 5 years ago. And he can walk for an hour easily whereas before he was struggling to walk around the block.

(He also takes a range of other supplements).

[Reetpetitio in reply to LAJ12345]

Sounds great!

[Smokeypurple]

If you look up 'nonenal' you find lots of references to Japanese persimmon soap.Nonenal is perhaps a different smell to the specific PD smell but could be worth a try.

amyseden.com/nonenal/

[ZebraDoodle]

If this is a symptom of PD (due to some kind of immune response to the PD?) it would be interesting to see if methods to reduce it through diet/supplements etc correlate with slower progression.

[Schowder]

Hello from Maryland. I also suffer from sebum in my scalp. Yes, if I become anxious it will smell. If I’m calm it’s ok. I can feel the stress settling on my inflamed scalp, and odor ensues. This all started about 6 months ago. I find immediate relief from saturating my scalp with apple cider vinegar. This calms my scalp for several hours. I have an appt in a few weeks with a dermatologist as it clear that my home remedy is no long term cure. Female. 10 years diagnosed.

[Schowder in reply to Schowder]

Japanese persimmon soap is useful and worth a try.It’s less effective than apple cider vinegar on my scalp during a flare up, but it may help others. I use the persimmon soap with a soft brush to clean my body and it’s wonderful.

[flyboypiper]

I also had a problem with this odor from the sebum.. I changed my diet to eliminate. to eliminate the things mentioned in the previous post. No white sugar No gluten. no dairy. no soy. And I believe I had a SIBO Infection Not sure what fixed the problem, but it's gone away.

I used the apple cider vinegar also added to 12 oz of water with breakfast.

[Lucy2023 in reply to flyboypiper]

Hi. I'm also eliminating certain foods. I've eliminated dairy and have noticed I actually feel a lot better having done so, but I'm now worrying about the lack of calcium. I do do my own research, everything just seems to be conflicting though. Do you eat certain foods high in calcium or take a calcium tablet to replace what is lost?

[flyboypiper in reply to Lucy2023]

Yeah, I eat a lot of vegetables high in calcium such as broccoli, Brussel sprouts, cauliflower, And I check my calcium intake on my health nutrition app called my fitness pal and I take a calcium supplement also.

[Reetpetitio in reply to flyboypiper]

Make sure you're taking K2 with the calcium

[Lucy2023 in reply to flyboypiper]

Thanks for your reply and info! Much appreciated 🙂. I will be checking out the app.

[Reetpetitio in reply to Lucy2023]

Green vegetables are high in calcium, and from what I've read, calcium supplements are rarely advised as it gets easily laid down in arteries. Always take K2 with it if you take calcium to make sure it's pushed into bones and teeth where it's needed.

[Lucy2023 in reply to Reetpetitio]

Hey, thank you for your message. Yes, that's what I read too, that calcium supplements can negatively affect the arteries! Very worrying. I will look into foods high in K2 though 👍🏻

[Reetpetitio in reply to Lucy2023]

From memory the list is limited to unpasteurised butter, and natto! Which is why people supplement K2. Mind you I did find a delicious French unpasteurised butter 😀

[Lucy2023 in reply to Reetpetitio]

Apparently Kefir, Sauerkraut, natto, meat and dairy products have a fair amount of K2. I drink/eat Kefir, Sauerkraut and meat, so I think I can relax a little bit about my K2 intake! Yum, glad you found a delicious French butter 😀

[Reetpetitio in reply to Lucy2023]

Oh that's interesting. I read that it's very hard getting enough from dietary sources; but then that was in the context of taking D3, for which you need 200mg K2 according to the YouTube doctor I listened to.

[Lucy2023 in reply to Reetpetitio]

I've also read 2 eggs can provide upto 120mg of K2. It's difficult to believe what I read, as there are so many different/contradicting 'facts' on the internet. Which YouTube doctor do you listen to?

[Camomi]

Since my husband uses B1 I do not smell it anymore. It came back when he stopped B1. Now, at a lowe dose it is gone again.

[pwpwifekim]

I have a very sensitive sense of smell. It is not only the sebum, but the urine and, I suspect all the drugs in his system… We added 100mg chlorophyll to HWP’s diet (2/day) plus there is a fairly new product (see below). The combination has made a substantial difference and I can no longer smell this in our home. shopmando.com/collections/wash

There is a similar product for women under the Lume brand name.

[saraoutwest]

thanks everyone for your comments. I definitely think I have sibo so will be looking into that for sure.

[Reetpetitio]

Is the sebum on your / people's scalp, or on the skin in general?

[kaypeeoh in reply to Reetpetitio]

Every hair on your body has an oil gland that soaks the growing hair with oil.

[Reetpetitio in reply to kaypeeoh]

That's what I assumed, but some people seemed very focused on hair-washing

[kaypeeoh in reply to Reetpetitio]

I use coal tar shampoo designed for dandruff control. I use a sink scrubber-sponge all over to scour my skin from head-to-foot. Paying particular attention to the armpits and groin and perineum.

[Reetpetitio in reply to kaypeeoh]

Interesting. I use tea tree bodywash, and use ketonazole - the strongest anti-fungal shampoo around - all over my body at least a couple of times a week and leave it on for a few minutes before rinsing off. But that's because I had tinea/ringworm and it's still around waiting to come back. Interesting thought that it would also be seeing off a PD smell!

By the way coal tar is toxic - can't remember the details, but I've researched it a couple of times now so I'm pretty confident that's so.

[kaypeeoh in reply to Reetpetitio]

Organic Chemist at Michigan State University

Coal tar is a thick dark liquid which is a by-product of the production of coke and coal gas from coal. It has both medical and industrial uses. Medicinally it is a topical medication applied to skin to treat psoriasis and seborrheic dermatitis (dandruff). It may be used in combination with ultraviolet light therapy. Soap can be made from any oil or grease by the process of “saponification”, which involves heating it with a base like sodium hydroxide. There are many recipes for making home-made soaps from all kinds of things, including coal tar, but it is also commercially available.S

[Schowder in reply to Reetpetitio]

for me, just the scalp.

[chartist]

It might be worth trying chlorophyll/chlorophyllin as a natural deodorizer for the body. It also has health benefits for the brain as discussed in this 2023 review :

ncbi.nlm.nih.gov/pmc/articl....

A relevant quote from the review :

' Chlorophyll’s detoxifying properties may aid in the elimination of these harmful substances, reducing their impact on brain health and potentially preventing or delaying neurodegenerative conditions. Moreover, chlorophyll-rich foods have been associated with improved cognitive function and brain health. '

Art

Healthful Effects Of Chlorophyll