Dementia with Lewy Bodies and HDT

[GermanShepherd79]

I’m looking for information from Dr. Antonio Constantini’s clinic in Italy on their research into HDT for Dementia with Lewy’s bodies. I read somewhere that they have had some success but that the dose is different from PD. This website would not allow two health interests. At any rate, I would appreciate any information.

[chartist]

I wrote this a year ago and it may be of interest to you regarding a fat soluble form of B1 and dementia :

healthunlocked.com/cure-par...

Art

[Dap1948]

We have a people with various variations of Parkinson’s in our group, who are successfully trying the B1 therapy.

m.facebook.com/groups/parki...

[GermanShepherd79 in reply to Dap1948]

Dap, I so much appreciate your reply. I know that Dr. Constantini treated LBD with some success but that the dose was different than for PD. That is why I’m trying to find a person who knows what his protocol was.

I’d also like to let you know that I think the world of you. God bless and keep you.

[GermanShepherd79 in reply to Dap1948]

Do you know how much B1 they take

[Dap1948 in reply to GermanShepherd79]

People with PD take wide ranging variations of doses (25 mg - 4,000 mg) each correct for them at that period in time. We can’t even correctly predict the right dose for them, let alone for other PD variations. What we say to all is try a dose and see. If you join the Facebook group, others could give you their experience which might help you choose where to start.

[LeharLover62]

With my husband, when the dementia started he became hypersensitive to all dopamine increasing therapies. We actually had to stop the B1 because it brought on psychosis for him.

But I think it’s worth trying. Personally with Lewy body patient, if they are having issues with hallucinations, I would start with a lower dose and work up. So 500 mg daily and then if they tolerate for a few weeks move to 1 gram, etc. I think you should give it a try as it might help!

[GermanShepherd79 in reply to LeharLover62]

I appreciate your response. Dr Constantini actually studied this. I am trying to find out what he did and what the responses were. you know how hard it is to find the right PD dose, I imagine dementia is worse.

[LeharLover62 in reply to GermanShepherd79]

Yes I remember looking into this years ago as well, and didn’t find a lot of info.

[LeharLover62]

Here’s what it says on Dr Cs FAQ, which I think was maybe all I could find a couple of years ago…did you see this?

highdosethiamine.org/freque...

“Does thiamine alleviate Lewy Body Dementia and all forms of PD?

We have some encouraging data but it is too early for us to express an opinion on this aspect.

The most encouraging of those results were detected in the corticobasal degeneration (CBD). The doses employed are much higher than those used in the treatment of PD.”

[GermanShepherd79]

thank you so much, again. Yes, this little blurb is what I saw. I was trying to get an update, but there may be none due to Dr. Constantini’s tragic death.

[chartist in reply to GermanShepherd79]

The issue with this is that if more B1 is required for dementia, lewy bodies, it will likely create a B1 overdose situation for people with PD who are already doing well on their B1 dose.

Art

[GermanShepherd79 in reply to chartist]

does thiamine increase dopamine? I thought it increased transport and supported brain metabolism. I better read it again. It has been sometime since I read it.

OK, I reread it. According to Dr. Constantini, the treatment hypothesis is that “the disease leads to the death of neurons through its interaction with the intracellular metabolism of thiamin. This action can be blocked by the administration of high doses of thiamin.”

It’s not supposed to raise dopamine levels from what I read, but who knows. I remember what you said about your husband. Maybe the cells started making it, or maybe they become more sensitive to it. We can’t even get a double blind crossover study paid for, who would pay for studies to elucidate the mechanism of action. Doesn’t this get discouraging sometimes.

[chartist in reply to GermanShepherd79]

Thiamine deficiency can cause reduced dopamine production. In PwP, thiamine levels decrease in the cerebrospinal fluid. The cerebrospinal fluid (CSF) washes through the brain during sleep in a pulsing fashion and if the cerebrospinal fluid is deficient of thiamine, then it makes sense that the brain of PwP will likely be operating at less than optimal levels of thiamine in conjunction with lower dopamine levels.

Keep in mind that the CSF also contains melatonin at higher levels than found in the blood, but melatonin is at decreased levels in the elderly and even more so in PwP.

If melatonin is a type of reparative molecule as studies suggest it is and PwP have lower levels of melatonin, thiamine and dopamine, is this a triple whammy effect on PwPs?

I have previously suggested that PwPs face their back to the earlier morning sun and later afternoon sun exposure, even with clothes on, as a potential means of increasing melatonin levels in the CSF/spine. I don't think that can hurt, but it may help. I like the idea of being able to bathe my brain in melatonin while I sleep.

Art

[GermanShepherd79 in reply to chartist]

Interesting. Someday perhaps studies will show the true mechanisms of injury. But I’m not hopeful that it will be soon. Some are looking into micro biome theories. Some into light therapy. But we can’t get anyone to pay for B1 double blind crossover study so that doctors can prescribe it without threat of lawsuit.

[chartist in reply to GermanShepherd79]

The microbiome is fascinating and could save millions of lives each year, but that might cause planet overcrowding and food shortages in the world, so I imagine it will have to remain fascinating, interesting, intriguing and nothing more. I wrote a little about its potential here :

healthunlocked.com/cure-par...

Art

[GermanShepherd79 in reply to chartist]

what I read recently was that at Stanford, I think, they found that the micro biome of the PwP differed from healthy spouse by 30%. They. isolated a bacterium that made more alpha-synuclean (sp.) than other bacteria. They hypothesized it could use the vagus nerve to move into the brain. Recommended more studies. Unlike FMT articles, it was a lot of hypothesizing.vv(I do not remember that they compared the PwP subjects to each other to determine if they were more like each other than spouses.)

Why not kill off gut flora and replace regularly with probiotics. Why risk transplants. Also why not use probiotics regularly and by attrition, change the microbiome to be more in line with what we want. Probiotics are OTC. Of course it would be a long time and you’d never be sure of results. But if you keep seeding billions of colonies, they will take over. Nobody is suggesting that, I’m just saying.

[chartist]

The point that they are brushing over as though it is of no consequence is the proven safety profile of FMT using current standards of screening and testing as well as the newer version WMT which is an even safer option. They already no that it helps in many disease states yet in the US it is only approved for C diff. and IBS where they have not responded to standard care and are likely close to dying with zero other options.

Since it is known safe, why do you have to go to China if you want it for other health issues such as PD, ALS, MS or AD for which it has shown benefit in people in the US who also had C diff. that was treated by FMT that also helped their other disease ?

As I said, it is a nice idea, intriguing, interesting, likely effective, safe and thought provoking, but not likely to become a mainstream treatment for any other disease in the US other than the two it is approved for.

A basic example is this regarding FMT and AD, a horrible disease for the patient and their family, that doesn't have to be if FMT is implemented in a timely manner :

frontiersin.org/journals/mi...

A relevant quote :

' More and more evidence showed that FMT may have potential for the prevention and treatment of AD. A randomized controlled trial suggested that the abundance of Proteobacteria and Verrucomicrobia decreased, while Bacteroidetes increased, in the FMT-treated mice. Meanwhile, the spatial learning ability and familiarity with novelty performed of FMT-treated mice better than AD model mice (Sun et al., 2019b). A randomized controlled trial suggested that the abundance of Proteobacteria and Verrucomicrobia decreased, while Bacteroidetes increased, in the FMT-treated mice. Meanwhile, the spatial learning ability and familiarity with novelty performed better than AD model mice (Sun et al., 2019b). Another study showed that FMT could reverse the disturbance of gut microbiota in AD mice and enhance the learning and memory ability (Yang, 2018). Numerous studies have shown that FMT can improve AD, which may be related to reducing the abundance of pathogenic bacteria, exerting the anti-inflammatory effects, decreasing the deposition of Aβ, regulating synaptic plasticity, increasing short chain fatty acids, and curbing histone acetylation. '

There are human serendipitous cases confirming the animal studies such as this :

journals.sagepub.com/doi/10...

General cognitive decline in AD is the current state of medicine, but to have a measurable improvement in such a relatively short time, what AD patient and their family doesn't want that? Unfortunately they will have to go to China if they want it.

Art