Rebuilding the substantia nigra? - Cure Parkinson's

Cure Parkinson's

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Rebuilding the substantia nigra?

kaypeeoh profile image
kaypeeoh

I never believed I had PD. Although I have tremor in my dominant hand I don't have the other common signs. I don't freeze, I don't move slowly, I don't have balance problems. I don't have "Off" periods. Once during a race three years ago I kept falling while walking up a steep hillside. I blamed it on weak, 60yr old lumbar muscles. But the recent DAT scan proves I have PD. It shows the right side is smaller than the left side of my substantia nigra pars compacta. So now my goal is to find if the structure can be repaired and rebuilt? There are medications to manage signs but nothing cures the disease. It's known the cells producing dopamine are deteriorating. But is there anything on the experimental level suggesting ways of restoration?

TIA for any suggestions or insights.

kpo

63 Replies

Hi there. Perhaps look at the posts for Broccoli seeds and Wrigga

• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/

• Sulfurophane from broccoli seed, courtesy of our very own Albert Wright. Helps with nonmotor symptoms: patientresearcher.com/2021/...

• Mannitol clinicrowd.info/parkinsons-...

• Cinnamon, extensively researched by Prof. Kalipada Pahan, PhD. My report healthunlocked.com/cure-par...

• Ambroxol healthunlocked.com/cure-par...

kaypeeoh profile image
kaypeeoh in reply to park_bear

Thanks for the replies. I use ceylon cinnamon. But all these herbal remedies treat the signs while none address the root condition.

park_bear profile image
park_bear in reply to kaypeeoh

That is not correct. Even though I had to quit cinnamon, for reasons explained in my report, it restored dexterity of my affected arm, and this restoration persists many months after I stopped taking it. Disease modifying properties are confirmed by the published study I cited in my report.

Symptom relieving interventions typically work pretty quickly. Disease modifying interventions require much more time to take effect - weeks or months. The longer timeframe is characteristic of the interventions I listed.

kevowpd profile image
kevowpd in reply to park_bear

Is there any credible evidence that any of these things restore dopamine transporters in the PWP brain?

park_bear profile image
park_bear in reply to kevowpd

"Credible" is in the eye of the beholder. I found this evidence sufficient to undertake a low-risk intervention. Using a mouse model of human Parkinson's – mice engineered to create defective alpha synuclein:

"Quantification of α-syn immunostaining indicated a significant reduction of α-syn in cinnamon-treated mice relative to the vehicle-treated group...cinnamon treatment decreased the level of insoluble, but not soluble, α-syn in the nigra ofA53T mice."

Investigators also found stat sig improvement in all five behavioral measures tested.

Abstract here: link.springer.com/article/1...

Full report behind paywall

kevowpd profile image
kevowpd in reply to park_bear

I would say probably not, given the number of assumptions needed to get from the conclusions in the report to 'repairs or restores DTs in the PWP brain', and the more assumptions needed, the more likely one will be wrong, introducing a critical faulure in the framework.

In your defence, he did say 'experimental'.

Zella23 profile image
Zella23 in reply to park_bear

I d just like to say that red light therapy quite a few have found very helpful, as well as all the above. My husband takes cinnamon, mostly because he loves the flavour, broccoli tea as per Wriga, HD thiamine( now for 2 years) but hasn’t tried Mannitol or Ambroxol. Seems to be doing ok at the moment with this combination, not changed PD meds for over a year now. Seeing the Neuro face to face tomorrow, will be interesting to see what he says.

binnyrox profile image
binnyrox in reply to park_bear

Thanks very much for the links Going through them but the mannitol link seems not clickable

I'm not sure if its just me....

park_bear profile image
park_bear in reply to binnyrox

Their sever has been down a lot lately. Here is a better link anyway:

parkinsonsnewstoday.com/202...

binnyrox profile image
binnyrox in reply to park_bear

Thank you very much. Appreciate it

binnyrox profile image
binnyrox in reply to park_bear

park-bear, I’m going to give the broccoli, Ceylon cinnamon and mannitol a try Followed your links and getting Frontiers for the cinnamon. Wrt to the broccoli- seems Avmacol is well recommended

However I’m unsure of the Mannitol dosage. People on it range from ‘a heaped tablespoon’ to 4gm. 18gm gives a laxative effect

By chance would you have an inkling of dosage for a 75kg male?

I know you have mentioned your not a medical person but I do value your views

Thanks much

park_bear profile image
park_bear in reply to binnyrox

Extrapolating from what the clinicrowd website told me for my weight, your dosage would be 8.25 grams. Also, if you divide that up into smaller doses over the course of the day it is less likely to cause gas and bloating.

binnyrox profile image
binnyrox in reply to park_bear

Sincerely park-bear, many thanks. Your posts have really helped me a lot. I do follow them 🙏

Hi kaypeeoh, Sorry, there is no cure and nothing that can “restore” anything.

gwendolinej profile image
gwendolinej in reply to Levod

Hi Levod, see my post re mannitol. 18 months later and my husband is still good. In fact it’s got the attention of our Neurologist and others.

Levod profile image
Levod in reply to gwendolinej

Hi gwedolinej:

I have read your husband's story and think it is infinitely more likely to be a placebo effect, rather than any kind of reversal of Parkinson's Disease or Lewy Body Dementia.

gwendolinej profile image
gwendolinej in reply to Levod

You must be kidding. Not even the doctors believe that. You wouldn’t either if you saw how bad he was. He was almost a vegetable.

That is great. Whatever it is, it is definitely worth learning about. Thank you for keep us posted.

Levod profile image
Levod in reply to gwendolinej

I wasn't kidding... I am curious to know how you and his doctors explain it.

Do you believe Mannitol is a cure for Parkinson's and restores normal brain function? This was what my original reply to 'kaypeeoh' was about (that there is nothing that does this)...

House2 profile image
House2 in reply to Levod

N-acetyl-cysteine (NAC), the prodrug to l-cysteine, a precursor to the natural biological antioxidant glutathione. In the NAC group, significantly increased DAT binding was found in the caudate and putamen (mean increase from 3.4% to 8.3%) compared with controls (P < 0.05), along with significantly improved PD symptoms (P < 0.0001). The results suggest NAC may positively affect the dopaminergic system in patients with PD, with corresponding positive clinical effects.

pubmed.ncbi.nlm.nih.gov/312...

LeharLover62 profile image
LeharLover62 in reply to Levod

I just want to chime in here to say that mannitol has replaced all dopamine based medications for my non tremor dominant husband. I don’t think there’s placebo effect here.

How much mannitol does your HWP consume in a day? All at once or spread out over the day?

Getz profile image
Getz in reply to Levod

Mate you have not studied the research on mannitol if you think it's a placebo effect.

12stargate profile image
12stargate in reply to Levod

I can’t believe you said that. Please don’t take hope away from people.

How much mannitol does your HWP take? All at once or spread out over the day?

Well, at first it was one teaspoon, 1 time per day of Bulksupplements Mannitol. After several months, he onlyneeds about one teaspoon every other day (we’re still playing with the dose a bit.)

Thank you. I am taking 1T per day. I had to work up to that amount. I have been taking the 1T for maybe a couple months. I have not gotten my sense of smell back. Still hoping.

My husband has been taking 1tbs. in iced coffee once a day for the last 18 months. I thought I detected subtle changes in recent weeks, so we’ve increased it to 1 1/2tbs. in the last couple of days. He has also been using the Red Light hat for a couple of weeks, so that could confuse things a bit. Any changes now are going to be more subtle, whereas when he first went on the Mannitol, the changes were dramatic and kept coming. See my post. He also doesn’t have a tremor.

I Hope that helps.

Gwendoline

I'm taking 1T per day for a couple months now. I was hoping tp get my sense of smell back. Still hoping. Thank you.

My husband lost his sense of taste to a fair degree. It hasn’t come back.

One of our members reported that he got his sense of smell back, but when he changed his supplier, he lost it again. His initial supplier was, I think, Bulk Supplements.

There was then a discussion among the more technically minded members about why.

I’m about to try a new supplier....just hoping, like you.

Regards

Gwendoline

Good to know. Unfortunately, I just bought another bag of Mannitol. I need to check out Bulk Supplements next time. I used Mannitol Balance from Amazon.

It’s worth a try.

Getz profile image
Getz in reply to gwendolinej

Interesting that scientists have discovered that alpha synuclein is what causes the clumping of neurons in the brain and they have developed a vaccine against it. Really surprising that they didn't look at mannitol (a diabetic sweetener) which has been shown to destroy the alpha synuclein.facebook.com/ScienceNatureP...

gwendolinej profile image
gwendolinej in reply to Getz

Does mannitol keeps working. I’m not sure that my husband isn’t slipping a little, so have started on the Red Light hat.

Getz profile image
Getz in reply to gwendolinej

The alpha synuclein is a nasty biotic which is killed by the mannitol so once it is minimized in the gut there's not much more that mannitol can do so increasing the intake of probiotics would be a good move. L-Serine is reported to declump the neurons in the brain and coffee cherry concentrate is reported to increase BDNF by up to 143% and this helps create new brain cells but these new cells will have to be trained so exercise and brain activities are in order.I have the greatest faith in the red light hat. I don't know what is responsible for my improvement but something is working.

gwendolinej profile image
gwendolinej in reply to Getz

Thanks Getz. To save me looking, what’s the daily recommended dose of L-serine, and what probiotics do we try. I’m always put off by all the comments on various probiotics, it’s just too confusing. We’ve also got the coffee cherry concentrate.

Getz profile image
Getz in reply to gwendolinej

L-Serine comes with a little 5cc scoop and I use 3 of these. As far as probiotics go I take fermented foods as well as tablets. Interesting that the Japanese fermented soy called Natto is full of bacillus subtillus which is the probiotic that kills off the alpha synuclein, Fermented foods and drinks are a great addition to our diets. As to general probiotics I'm confused also. They are living things so should really be kept in the fridge. To my knowledge only chemists and Health places do this. I'm glad you're onto coffee cherry. It has good research on pubmed and that's good enough for me.

rebtar profile image
rebtar in reply to Getz

i tried natto and i couldn't tolerate the taste.

Getz profile image
Getz in reply to rebtar

I have steamed veges and when I'm ready to plate them I put the natto in. I do not put the 2 little sachets of whatever in. I simply throw them in the bin. I can't say I've really tasted the fermented soy beans. Mind you, when the veges are plated I put olive oil and 7 herbs and spices over the lot.

SilentEchoes profile image
SilentEchoes in reply to Levod

Every organ in our body has stem cells that have the capacity to repair that organ. Can you regrow an arm? No. Can you heal a broken arm? Yes. It's important to make the distinction.

Can you heal the brain? Yes.

SE

I'd hoped someone would mention stem cells. They've been shown to regrow heart muscle. In my vet practice I saw stem cells produce both ACLs.

Juliegrace profile image
Juliegrace in reply to kaypeeoh

If you use the search function you can find recent posts by jimcaster and cclemonade on stem cell research. I believe there are others, also.

Resano profile image
Resano in reply to kaypeeoh

So have a look at the Indian study

"Nisshesha rechaka pranayama offers benefits through brief intermittent hypoxia"

cited in post on Intermitten Hypoxia:

healthunlocked.com/cure-par...

There is a professor at Tufts who is working on this problem according to a story in the current issue of The New Yorker.

Regeneration is not just for so-called lower animals,” Levin said, as an image of Prometheus appeared on the screen behind him. Deer can regenerate antlers; humans can regrow their liver. “You may or may not know that human children below the age of approximately seven to eleven are able to regenerate their fingertips,” he told the audience. Why couldn’t human-growth programs be activated for other body parts—severed limbs, failed organs, even brain tissue damaged by stroke?

newyorker.com/magazine/2021...

Lions mane extract for promoting nerve growth factor (NGF). Big summary here:

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

Also while on mushrooms, I was just reading this on Reishi with regards to PK here, Nature article:

nature.com/articles/s41401-...

I buy from British Supplements here in the UK (not personally affiliated!).

Hyperbaric oxygen therapy has also been looked at for stroke victims, researched for promoting NGF etc.

Ari Whitten Energyblueprint has a range of supplements that he says help to repair mitochondria. We haven’t tried any as the cost of postage to NZ is almost as much as the supplements!

L'unica cosa che rallenta la malattia o addirittura ne impedisce la progressione è secondo la mia esperienza personale la vitamina B1.

You cannot rebuild neurons. What you can is to take care about what’s left. Look out for so called neuro-protectors (including such accessible drugs as ibuprofen, B1).

Plus diet and physical activity (fast walking).

Plus (I think it’s what many of us missing) don’t abuse your dopamine pathways. Take care about reward cycle. Avoid “easy pleasures”: watching porn, alcohol, you name it.

kaypeeoh profile image
kaypeeoh in reply to b-erec

At one time it was believed that ..."You cannot rebuild neurons..." But not so today. Dr Daniel Amen pretty much bases his neurology practice on the idea that you CAN rebuild neurons. Many other neuros agree.

But as I spent an hour this morning trying to remember where I left my keys last night, I was beginning to believe b-erec but then remembered I'd left them on the treadmill.

kpo

Hikoi profile image
Hikoi in reply to kaypeeoh

Is this rebuilding neurons or getting the brain to discover new pathways (such as in stroke rehab).

I had never heard of Dr Amen, a psychiatrist. I will not be following his recommendations.

observer.com/2016/08/head-c...

KERRINGTON profile image
KERRINGTON in reply to Hikoi

I believe he has a program on educational tv in the states, and has written many books.

kaypeeoh profile image
kaypeeoh in reply to Hikoi

The reporter did a hatchet-job on Amen. But other doctors featured on PBS agree with Amen's approach. And have said what Hikoi said; ..."getting the brain to discover new pathways..." is brain-rebuilding.

Getz profile image
Getz in reply to b-erec

Mate there's a couple of posts on coffee cherry concentrate which have shown to increase BDNF by up to 143%. This is the stuff that creates new neurons. Our bodies are regenerating constantly. Its jus sad that if memory cells are lost we cannot bring those memories back but we can learn to think again and we can create new memories.

Sapeye2020 profile image
Sapeye2020 in reply to b-erec

are both B1 (Yes) and Ibuprofen (?) neuro- protective?

b-erec profile image
b-erec in reply to Sapeye2020

B1 - yes, according to Dr. A. Costantini's work.

Ibuprofen - there were the research results published several years ago showing correlation between taking Ibuprofen as a pain killer and lowered risk of developing Parkinson. Well, it's not reliable enough to make any conclusions, but at least something to start with.

Dr Amen's concept to repair neurons or build new ones, made me think of Lord Baden Powell, the founder of Boy Scouts, and he encourage the scouts to learn to use your non dominant hand , reason ? If you lost your dom. hand or limb in battle you could still write, paint or fight as needed.

BTW I have followed Dr.Amen for several years and he has some terrific work helping brain damaged people especially kids.

Enhance the Nurr1 pathway

rebtar profile image
rebtar in reply to House2

Could you explain?

kaypeeoh profile image
kaypeeoh in reply to rebtar

Rebtar: Rebel Tarheel?

rebtar profile image
rebtar in reply to kaypeeoh

LOL.... my name's Rebecca Tarver. Have been somewhat of a rebel though...

House2 profile image
House2 in reply to rebtar

jbiomedsci.biomedcentral.co...

Consider this.... N-acetyl-cysteine (NAC), the prodrug to l-cysteine, a precursor to the natural biological antioxidant glutathione. In the NAC group, significantly increased DAT binding was found in the caudate and putamen (mean increase from 3.4% to 8.3%) compared with controls (P < 0.05), along with significantly improved PD symptoms (P < 0.0001). The results suggest NAC may positively affect the dopaminergic system in patients with PD, with corresponding positive clinical effects..... pubmed.ncbi.nlm.nih.gov/312...

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