Rebuild and restore?

[Ric7]

Hi,

I've just been diagnosed with PD and am searching for a way to rebuild and restore function to my substantia nigra.

[park_bear]

My list of interventions that may help reduce progression. Thiamine, exercise and cinnamon particularly helping me:

• Vigorous daily exercise

• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/ healthunlocked.com/cure-par...

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

•Mannitol parkinsonsnewstoday.com/202...

healthunlocked.com/cure-par...

A recent study came up with no effect but some people have said it helps.

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

healthunlocked.com/cure-par...

jamanetwork.com/journals/ja...

[Ric7 in reply to park_bear]

Thank you for your help!

[Grumpy77 in reply to park_bear]

Great list, but I can see that Red Light (NIR) Therapy and the most overlooked underdog vit D3 haven't made your list. I've noticed a big positive impact from these two of recent

[Tryguy in reply to Grumpy77]

I have used the coronet 4 from Tasmania for a few months now, and it did seem to help in reducing my med (c/l),and with sleep. I also use their I/R pad for foot fungus… the jury is still out. Also, I use 10000 IU of D3/K2 per day in divided doses. How has it helped, and at what dosage? Thanks so much!

[Grumpy77 in reply to Tryguy]

I used to have a lot of brain fog. Particularly early in the morning. I will thinking of somethings and then all a sudden i will loose my train of thoughts. This would happen so many times while I'm waking up in the morning and a few times during the day. It was really scary, I was beginning to think that dementia was closing in on me fast. But now after using the coronet for some months, I don't have brain fog anymore. But my usage timings is extremely irregular

With vitamin D3, I've gained more energy and now much less lazy than I used to be. Again my dosage is very irregular.

I'm not surprised, I've suspected for a long time that I'm the most undisciplined PwP ever 😁 (no laughing matter). Even my dosage of madopar is irregular. The good thing is I don't suffer too much consequences for this

[Ric7 in reply to Grumpy77]

What do you say is the best Red Light (NIR) machine to buy?

[kaypeeoh in reply to Ric7]

VieLight is probably the most expensive but they offer to return 80% if no positive effect after three months.

[Grumpy77 in reply to Ric7]

Good question... Check out this thread where i asked similar question. There were many replies you will probably find helpful in addition to kaypeeoh

healthunlocked.com/cure-par...

[Totallywired in reply to Grumpy77]

I can also recommend red light therapy. First built my own hat that I've been using 2x20min daily for more than a year. I recently bought a coronet duo which is even better I believe. I just started on High dose thiamine, I'm not sure if I'm on an optimal dose level yet but it seems to help. I can also recommend strong marjoram tea at bedtime. Seems to help me alleviate with non motor symptoms as depression. Could also recommend everyday bike rides and badminton or similar (which I wish I had the opportunity to do more often).

[Totallywired in reply to Totallywired]

Here's a link to the marjoram study. parkinsonsnewstoday.com/202...

[Bolt_Upright]

I'm sorry you had to join this group Ric7. You should reach out to MBAnderson (Marc) and give him your e-mail if you would like to be invited to the weekend Zoom calls Marc hosts. Sat at 7 PM CST and Sun at 11 AM CST.

park_bear has a good list. I do the thiamine and cinnamon. I should do the exercise.

You can see my complete list of protocols at healthunlocked.com/cure-par...

I plan on trimming this list down some day.

BTW: I have not been diagnosed with PD. I have REM Sleep Behavior Disorder, which my doctor says is pre-PD. I am here looking for an exit ramp and hoping I can help others while at it. Good luck.

[JohnPepper]

I have been able to overcome most of my Pd symptoms by using my conscious brain. I can send you videos and articldes on it if you contact me.

[Ric7 in reply to JohnPepper]

Yes, I would be interested in that.

[JohnPepper in reply to Ric7]

Ìf you look at my Profile you will see how to get hold of me. I need your email address to send all the material to you.

[chartist]

Welcome to the forum, Ric7!

Melatonin has proven useful in more than 3 human studies in PwP and melatonin has also shown to protect dopaminergic cells as well as their mitochondria, in fact melatonin is produced in every cell in the body including red blood cells which don't have mitochondria, with one of many jobs of scavenging reactive oxygen species (ROS) almost instantaneously once ROS is generated in the mitochondria as a natural byproduct of normal mitochondrial function . ROS is damaging to mitochondria and ultimately to the dopaminergic cells themselves, because the mitochondria produce ATP, the energy source for the cell. Melatonin also easily crosses the blood brain barrier and reaches the Substantia Nigra where it can exert its radical scavenging, antioxidant, antiapoptotic and anti inflammatory effects. Unfortunately, melatonin production declines with age. I've written about melatonin and PD here :

healthunlocked.com/cure-par...

I've also written about how to get melatonin naturally without supplementing here :

healthunlocked.com/cure-par...

I've written a significant amount on many of the health benefits of melatonin in PwP and you can click on my icon, the orange melatonin capsule to see that information or you can use this link which is probably easier :

healthunlocked.com/user/cha...

Good luck!

Art

[JoeKev in reply to chartist]

Art Thanks for the plethora of information

I’ve read a lot but stand accused of impatience, trying to find the magic bullet.

I just bought 3 mg.melatonin supplements. Seems padre now. My question is.how much should a PWP start with and then increase to. Thanks

Joey

[chartist in reply to JoeKev]

Joey,

I am not a doctor so I can not tell you a dose to take, but I can tell you what different doses have been used successfully in studies using melatonin in PwP.

In this study, the researchers used melatonin at 10 mg/night to very good effect in terms of non motor symptoms and reduction of UPDRS part 1 score :

sciencedirect.com/science/a...

Here is a relevant quote from the study :

>>> ' Overall, melatonin supplementation for 12 weeks to patients with PD had favorable effects on the UPDRS part I score, PSQI, BDI, BAI, hs-CRP, TAC, GSH, insulin levels, HOMA-IR, total-, LDL-cholesterol, and gene expression of TNF-α, PPAR-γ and LDLR, but did not affect other metabolic profiles. ' <<<

In this next study, they used 50 mg in two divided doses of 25 mg each to very significantly reduce oxidative stress levels in PwP toward normal levels. Oxidative stress causes inflammation and PD progression is heavily driven by these two factors. Melatonin very significantly reduces both.

ncbi.nlm.nih.gov/labs/pmc/a...

Here is a relevant quote from the study :

' >>>These data suggest the existence of an active, persistent oxidative stress in PD. After three months of treatment with melatonin, the levels of lipoperoxides, nitric oxide metabolites, and carbonyl groups in proteins were lower than in the placebo group and were statistically similar to the levels of healthy controls. The activity of catalase was increased with the treatment with melatonin at levels similar to the control group. '<<<

In this next study in PwP, they used 50 mg again in two divided doses of 25 mg each. Although this study was focused more on clock genes, it did show modest motor symptom improvement during off time in PwP.

sciencedirect.com/science/a...

Here is a relevant quote from the study :

>>> ' The motor activity of the patients in OFF showed a tendency for a lower score with MEL than placebo ' <<<

This next study used 2 mg of Prolonged Release Melatonin (PRM) to effectively increase sleep quality in PwP.

pubmed.ncbi.nlm.nih.gov/324...

A quote from the study :

>>> ' PRM is an effective and safe treatment option for subjective sleep quality in PD patients and beneficial effects on sleep quality are associated with improved non-motor symptoms and quality of life in PD patients. ' <<<

This clinical perspective suggests a dosing range of 40 to 100mg.

ncbi.nlm.nih.gov/labs/pmc/a...

A relevant quote :

>>> ' Low levels of melatonin in blood characterizes advancing age. In experimental models of Alzheimer's disease (AD) and Parkinson's disease (PD) the neurodegeneration observed is prevented by melatonin. Melatonin also increased removal of toxic proteins by the brain glymphatic system. A limited number of clinical trials endorse melatonin's potentiality in AD and PD, particularly at an early stage of disease. Calculations derived from animal studies indicate cytoprotective melatonin doses in the 40-100 mg/day range. Hence, controlled studies employing melatonin doses in this range are urgently needed. The off-label use of melatonin is discussed. ' <<<

This next study used 25 mg /day and showed reduced oxidative stress, but the full study is in Spanish.

pubmed.ncbi.nlm.nih.gov/290...

A relevant quote from the abstract :

>>> ' COX-2 activity decreased as did nitrates/nitrites (3, 6 and 9 months) and lipoperoxides (9 and 12 months); GPx exhibited no significant differences.

Those seem to be the most relevant melatonin/PD studies. My impression of the available data is the the optimal dose of melatonin for PwP is not currently known, but based on other studies in other areas of health, I suspect that that number will be north of 100 mg/day. That idea is based on results of studies using 200 mg or more in people.

I take high dose melatonin at 120 mg+/day myself, but I don't think I have PD and am mainly using it as a preventative for CVD, atherosclerosis, dementia, stroke, cancer, osteoporosis, degenerative disc disease, psoriasis, blood brain barrier protectant, Covid-19 preventative & treatment, AD, PN, age related diseases, diabetes, AMD and to significantly reduce oxidative stress and inflammation to levels seen in healthy controls, to name a few based on recent studies.

Lastly, you may be interested in this :

healthunlocked.com/cure-par...

Art

[JoeKev in reply to chartist]

Thank you Art. Seems like higher doses can be tolerated. 40 mgs. I’ll start with 10.

I don’t have a problem sleeping but symptomatic in mornings eg. balance and tremor. Hoping melatonin will lighten that load. I’ll let you know. Thanks again

[chartist in reply to JoeKev]

Yes, higher doses can be tolerated as mentioned in this study that used 250 mg/day in diabetes patients :

ncbi.nlm.nih.gov/labs/pmc/a...

On the other hand, some people simply do not tolerate melatonin when it is taken orally. If that turns out to be the case, melatonin produced in the body does not cause any side effects and there are two known ways to significantly increase melatonin production in the body as I wrote about here. One way is free and one way is inexpensive :

healthunlocked.com/cure-par...

Keep us updated on how you do.

Art