And the beat goes on, and on

[Gymsack]

I have been a member here many years, despite what the records show. A lot of people have come and gone but the forum remains consistent, a different name on a different day but really all the same. Another cure has bit the dust, B1 failed to be supported by any scientific evidence that there was any connection between it and the disease. How can this be? Several people were dramatically helped by this substance.

This has happened over and over, there must be a better explanation why some people with PD can take a substance and experience a difference and an improvement to the point that they want others to know and experience it also . These proponents do not come to this forum to play games with the health of others, instead they are convinced of the truth that they have experienced and are on a mission to help others. How is it possible that after many years and millions of dollars of research that we still have no idea what causes Parkinson's.

Oh, there are many theorys, and you may be convinced that your parkinsons was caused by being sprayed with DDT as a child, it sounds reasonable and a theory is better than saying : " I dont know " , but truthfully, we just do not know. There have been many studies on almost every idea / theory and none have concluded that anything caused PD.

The answer may be unpleasant. Might it be that parkinsons in all its many forms is the easily obtained result of many , many causes. A propensity , a weakness , that can be kicked into action or a chain of actions and events started almost by accident many different ways. The reason that I have my Parkinsons may not be the same reason that you have your PD , and the diseases may be completely different and the reason that no connection with B1 and PD was found is that they tested the wrong people.

Maybe we need a different approach .

[johntPM]

There is probably more than one type of PD. There is certainly more than one way in which patients respond to a treatment. Given this, potential treatments are lost in the statistical noise of the real world.

What I want to know about a treatment is whether it is both safe and works for ME. If it works for you too, that is good, but if it doesn't, that doesn't change the fact that it works for me.

I favour n=1 trials. These must be designed to get enough statistical power to have confidence that the individual is doing better because of the treatment. This requires more accurate measurements, more measures, a higher frequency of measurements, a better analysis of the data. But, in return, gives a way forward for treatments that benefit only sub-groups of PwP.

[Gymsack in reply to johntPM]

We are all sub groups

[Gcf51 in reply to Gymsack]

Some a little WACKO 🙃

[park_bear]

Misrepresentation. None of this is true:

" Another cure has bit the dust, B1 failed to be supported by any scientific evidence"

There is evidence, just not large expensive double-blind randomized controlled trial evidence because it has not been funded in spite of the best efforts of the proponents.

Definition of scientific evidence:

en.wikipedia.org/wiki/Scien...

" Scientific evidence is evidence that serves to either support or counter a scientific heory or hypothesis,... Such evidence is expected to be empirical evidence and interpretable in accordance with scientific methods."

This result may not be strong enough for you but it is still evidence:

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

" The treatment with thiamine led to a significant improvement of PD symptoms: UPDRS part II improved from 12.5 ± 4.0 to 7.7 ± 3.5 (P < 0.001, t-test for paired data), motor UPDRS part III improved from 21.6 ± 4.8 to 11.8 ± 6.0 (P < 0.00001, t-test for paired data)."

[Hikoi in reply to park_bear]

A study of 10 people does not inspire me to believe it is a proven therapy. It is still very much a theory isn't it? It seems they have ideas but still don't know how it works. These are the conclusions.

In conclusion, we found that the long-term treatment with the intramuscular administration of thiamine has led to a significant improvement of motor and non-motor symptoms of the patients with PD; this improvement was stable during time and without side effects.

Our report represents an important contribution to PD therapy, although further experience is necessary to exclude the placebo effect and to confirm the present observation with clinical, cellular, and molecular data. The aim of the future studies will be to investigate the clinical, restorative, and neuroprotective effects of the long-term treatment with thiamine in PD.

What I notice is: the age of the participants, mean age 74 we know older people in general have a different disease trajectory

Disease duration 3-5 years ( so this is early stage disease in older people )

There were some people on levodopa and some not, this makes a significant difference After the first month, nine patients, in order to further improve their clinical performances, increased the daily amount of thiamine and levodopa, or started the treatment with levodopa in association with thiamine..

Thiamine was administered twice weekly by injection this is different from oral administration

For me there are too many variables to be confident in this therapy

[park_bear in reply to Hikoi]

There is a difference between proof and evidence. This does not meet the FDA standard of proof required for drug approval, which is two large phase 3 studies. However, this study does constitute evidence, per the definition of scientific evidence cited above.

In the case of a low-risk intervention such as this, some people may find the evidence sufficient to give this idea a try. Others might not. It all depends on how much evidence each person wants to see to meet their own standards for this intervention.

[Hikoi in reply to park_bear]

I agree park-bear, it all depends on how much evidence each person wants to see to meet their own standards for this intervention.

I want more than an elderly cohort of 10 pwp in early stage PD.

[Bolt_Upright in reply to Hikoi]

I agree with both of you: There is scant evidence and we embrace it.

Here is our situation as I see it:

- There are no scientific phase 3 studies showing any alternative PD therapies work.

- So what we are left to do is:

- Google every known supplement along with "Parkinson's" and find what evidence we can find that it may help (hopefully with disease progression).

- Then we take our list of supplements and evidence and rank them most to least promising. Maybe factor cost into the ranking also.

For me, the top supplement, based on studies, is still Niacin. 47 people improved. Executive function was still getting worse. Open label. Not great evidence.

There are other things in my stack I kind of believe in. I am working to document them all and rank them.

[JustJeff in reply to Bolt_Upright]

Thanks Bolt very interested to see your top ranking supplements

[park_bear in reply to Hikoi]

There is a better study with 50 patients that I cited my most recent posting. Not that I expect that to meet your standards either

[Gymsack in reply to park_bear]

I read it again Park Bear and you are correct. My statement is not correct and may be sensationalized and I apologize for this . I still believe the rest of my statements in the post have value. I have not seen any study here at unlock to attempt to identify what portion of the people who tried B1 had improvements.

[park_bear in reply to Gymsack]

Thank you. It takes a big man to be able to admit error and apologize. I have no objection to your other statements.

Once upon a time I thought I had seen an informal survey here of who was helped or not helped but I have been unable to find it. Here is a compiled list of 80 symptoms that have been reported to be improved: healthunlocked.com/cure-par...

With that said, I have no need to persuade those who are reluctant to try it. Just glad I have had the opportunity to do so.

[chartist in reply to park_bear]

p_b,

I think this is the informal survey you were referring to that suggests an approximate 80% success rate of B1 on this forum :

healthunlocked.com/cure-par....

Art

[park_bear in reply to chartist]

That is it! Thank you so much!

[Gcf51 in reply to chartist]

Wow! How was the question posed? The problem is who read and who chose to respond or not.

[Bolt_Upright]

You are spot on Gymsack.

[LAJ12345]

I agree. I doubt there will ever be a drug that will cure it. I think it is a spectrum like Asperger’s. That you are born with gene SNPs that predispose you deficiencies in various areas. Lifestyle food and exercise, toxins, radiation, viruses, bacteria, medications etc trigger the condition. Probably mitochondial damage occurs causing fatigue, stalling of enzyme processes, leading to a cycle of winding down of movement. Brain starts cutting off pathways not being used. Digestive system stops working properly leading to a type of malnutrition. Lack of movement or poor posture causes lymphatic drainage problems and the cell waste disposal system fails and junk builds up in the brain. Brains electrical system misfires due to junk building up leading to a cycle of all of the above. Some people have gene SNPs that slow down enzyme processes naturally that are involved in seratonin, dopamine and other neurotransmitters. They may be also affected by the enzymes processing b vitamins, vitamin d, etc.

That’s why all of the treatments mentioned in this site might be helpful for a part of the problem. To solve the whole problem you need to go backwards removing toxins, bacteria, viruses, parasites, heavy metals, and food triggers like gluten and seed oils, fix digestion, support with multivitamins so sufficient nutrients are available. Support gut bacteria.

Use eg mannitol to start removing junk. Move your body to kick the lymphatic and glymphatic system into action to start carrying away the junk.

Speed up or slow down any enzyme processes that might be running fast or slow eg mao, etc using natural plant extracts or foods that “talk” to these enzymes. Get rid of man made food like substances which the body is not getting any messages from because it doesn’t recognise them as a food.

Parts of the body not working properly need to be worked intentionally to retrain the brain to recognise them and strengthen up the pathways to it.

Eliminate any excesses of medications to find the minimum dose that is helpful as any extra starts causing the problems it is supposed to fix.

Anyway that is my theory of everything from watching and learning from experience.

[Gioc in reply to LAJ12345]

Hi Laj,I fully agree with everything, I just want to say that there are functions and mechanisms by which the body self-healing itself that sometimes fail. One of these is Autophagy, a very powerful cellular function that the body uses to get rid of unwanted substances that are quite known. Here is an example, (unfortunately it is only in Italian), but on the web you will find a lot of information on the subject.Gio

artoi.it/wp-content/uploads...

[LAJ12345 in reply to Gioc]

Yes, autophagy too. Intermittent fasting helps with that. Ari Whitten on energyblueprint.com has a lot in it too in English plus lots more on how to help repair your mitochondria. Also hormesis is interesting to look into.

[Gioc in reply to LAJ12345]

Thanks for the references. Happy to hear you always very lucid in observations and analysis despite the difficulties.

[Fed1000 in reply to Gioc]

Hi Gio', how are you? very interesting the article. Ettore Bergamini also wrote a book: The art of longevity in good health. In the article reference is made to some products that stimulate autophagy. Rapamicina, Acipimox. Are you using any of these?

[ghoegap]

Thanks due to all the above. It sometimes seems that this forum is the only place where one can still from time to time find reasoned and civil discussion

[ShopKeeper]

I’ve just been reading “Brain Fables” by Alberto Espay and Benjamin Stecher, a very interesting book that suggests that Parkinson’s is not some sort of monolithic disease but rather many specific subtypes of a disease. So looking for “one size fits all” medical interventions will likely not be successful. We need to start figuring out how many different versions of Parkinson’s there may be, and then tailor specific treatments to specific patients. So work the problem like they have done with a disease like cancer, and maybe we will get some real progress.

[Stillstandingstill]

Just been catching up on the fantastic nosilverbullet4pd Dr Alberto Espay presentation. If you haven't watched it you might find it interesting as it backs up what you are saying about PD being too broad for a one size fits all treatment.

[Gcf51]

You know what they say about opinions, Everyone has one. Mine is most forms of B1 do not make across the BBB because their B1 was not transferred to the whole blood cells. Their B1 was simply flush out in urine.

We can talk about increasing blood flow to the brain, when what we really need is quality of blood not quantity.