Seeking Guidance After PD Diagnosis

Hi Redwine,

The thiamine / vitamin B1 protocol for PD has two main forms, low dose dissolve in the mouth tablets or high oral capsule doses, which was the original method discovered by an Italian neurologist named Dr. Antonio Costantini. One thing he frequently mentioned was that a dose that is too low will have no effect.

There is a Facebook group which discusses the low dose dissolve in the mouth method and has a large and active following. Here is a link to that group :

https://www.facebook.com/groups/parkinsonsb1therapy/info/?_rdr

For high dose, the effective dosing range varies greatly from 25 mg/day up to 5000 mg/day. Finding the precise and most effective dose for both the high and low dose can be the greatest challenge for either regimen. If you want to know more about how Dr. Costantini determined oral dosing levels for B1 let me know as I wrote a brief article on that.

The B1 regimens do not work for everybody, but they seem to work for the great majority of people with PD (PwP). The beneficial effects vary greatly from person to person. I have made a list of the reported benefits of B1 from actual users of high dose thiamine (HDT) for PD. Let me know if you want to see that list.

There are multiple reasons for why B1 may help PwP. One is that, at higher doses of 200 or more milligrams per day it lowers the inflammatory marker IL-17 very significantly. IL-17 is a very important inflammatory mediator in neurodegenerative diseases. PwP seem to have elevated levels of IL-17 in the brain region.

Another important reason why thiamine is useful for PwP is that it promotes short chain fatty acids (SCFAs) such as propionate, acetate and butyrate in the gut microbiome, which are beneficial and health promoting for gut microbiome health as well as the whole body and help to reduce other inflammatory markers that are elevated in PwP. PwP are known to have significantly reduced SCFA levels as well as gut dysbiosis and constipation being the norm. Increased SCFA content and activity is useful for promoting a healthy gut microbiome and reducing oxidative stress and inflammation levels.

In my opinion, these two important activities of B1 are likely very useful for PwP in potentially slowing disease progression and reducing symptoms though no studies have yet directly confirmed this yet.

Vitamin B2 / Riboflavin has also shown some benefit in at least one study as discussed here :

https://pmc.ncbi.nlm.nih.gov/articles/PMC5517396/

Here is a relevant quote from the above research paper :

' In conclusion, riboflavin is a potential neuroprotective agent affecting a wide range of neurological disorders exemplified by PD, a disorder of neurodegeneration, and migraine headache, a disorder of pain. '

Vitamin B12 has also shown homocysteine lowering effects which is more important in PwP as they often have higher than normal levels of homocysteine with lower B12 levels that can increase the potential for cognitive decline and decreased mobility levels as discussed here :

https://pubmed.ncbi.nlm.nih.gov/29508904/

Here is a relevant quote from the link :

' Elevated homocysteine at baseline was associated with worse scores on the baseline MMSE. Analysis of study outcomes showed that compared with the other tertiles, participants in the low B12 tertile (<234 pmol/L; 317 pg/mL) developed greater morbidity as assessed by greater annualized worsening of the ambulatory capacity score. Elevated homocysteine was associated with greater annualized decline in MMSE (-1.96 vs. 0.06; P = 0001). '

The vitamin B group is generally considered useful for PwP.

Melatonin has also shown in multiple human studies to offer some benefit. Three main driving forces of disease progression are oxidative in the form of reactive oxygen species (ROS), inflammation and neuron degeneration related to these two forces in the brain. Melatonin crosses the blood brain barrier and helps fight all three of these issues in PD. Melatonin is also a potent mitochondrial protector, but melatonin levels decline rapidly as we age and even more so in PwP, which is an age related disease. The highest risk factor for getting PD is increasing age. The following human study shows how melatonin has restorative effects on the mitochondria of PwP when taken at a total of 50 mg/day:

https://onlinelibrary.wiley.com/doi/10.1155/2021/5577541

Here is a relevant quote from the randomized, double blind placebo controlled study (RCT) :

' Taken together, our data showed that melatonin supplementation recovers mitochondrial function and diminishes oxidative stress. Thus, this indolamine could play a role as an adjuvant in the treatment of PD.'

Another consideration about melatonin is that PwP are at increased risk for cardiovascular disease (CVD) and melatonin helps fight CVD through multiple methods of action.

There are many other supplements that have shown varying degrees of benefit for PD, but this should be enough info to help you get started in finding useful supplements for PD.

Art