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Comment by apinstein | Hacker News Reader

My Dad was recently diagnosed. Very early stage. This is very interesting news.

My take is that Parkinson's is a little like cancer in that it likely has multiple root causes that can injure the same part of the brain (substantia niagra) and cause the disease.

My research for his case led me to vitamin k2 deficiency as a possible cause / complicating factor. There are some genetic models and mouse trials that show k2 as a modality. He had his gallbladder removed about a year before symptoms started. He also has kidney stones. K2 is fat soluble, only acquired through diet, and affects calcium regulation. Oddly connected to his history/symptoms. So hard to help debug stuff like this.

He's on a supplement now. We don't have a great way to measure if it's working. The symptoms have such natural variance day to day.

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I worked with a guy who has Parkinson's. He was _obsessed_ with nutrition and always said the same thing about it being related to his gut. I don't think I've ever seen someone eat as natural and health as this guy.

I'm obviously not a doctor and don't know, but from what I saw, he barely shook at all. He swore that when he went off his diet he would start shaking again. He also said his doctor couldn't believe how well he did on his own.

He said it all started from this book: http://brainhealthbook.com/why-isnt-my-brain-working

Is there a general overview of the scientific claims made in this book somewhere? It sounds somewhat promising, but the table of contents doesn't exactly inspire confidence that the information is accurate. Additionally, I can't find any reviews online about this that don't look like shills for the book itself.

A rather fascinating article on Dr. Kharrazian was saved by the internet archive here: https://web.archive.org/web/20130924001750/http://scienceque...

"Having read his book in full [“Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal"], visited one of his practitioners, and assembled the above lists of fraud indicators, I can solidly claim that Dr. Kharrazian is a quack." -- Dr. Christopher S. Baird

But note: Dr Baird deleted this article shortly after it was written in 2013.

>But note: Dr Baird deleted this article shortly after it was written in 2013.

Doesn't that invalidate his claim if he had retracted it?

Deletion doesn't necessarily mean retraction. As far as I know, only a retraction strictly means retraction.

The article makes plenty of factual claims that remain factual whether the article is published or merely preserved.

Like: "autism is caused by genetic mutations, not “vaccines” or “leaky gut” as [Kharrazian] states on p.327 and 409."

And sure enough: [“Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal“] searchable at Amazon does indeed have the claim that autism might be a result of immune system reaction to vaccine. Sure sounds like a quack.

https://www.amazon.com/Still-Thyroid-Symptoms-Tests-Normal/d...

Thanks, this is the type of thing I was looking for. Doesn't inspire confidence in his book about the brain.

I'll be honest, I'm a layman and don't know. There are loads of Amazon reviews, but I agree not the best source and could be shills. I read the book and not too much seems crazy or out there.

https://www.amazon.com/dp/B00D8N6HBM/ref=dp-kindle-redirect?...

I'm very sorry about your father's diagnosis. A few years ago I came across this spoon invention which seemed to be very helpful to those that are dealing with the shaking symptoms:

http://www.gyenno.com/spoon-en

See also liftware.com

Would it help to record the tremor intensity while tracing a smoothly moving dot with his finger on a cell phone screen? And/or record the tremor while holding the phone and tracing along a line with a corner of the phone. I bet you could get pretty good at-the-moment measurement of the tremor. Combine that with graphing and a rolling average, and you might have a pretty clear picture.

I bet you could homebrew an electromyograph pretty easily. It probably wouldn't be particularly accurate, but you could probably achieve enough precision to provide repeatability and measure day-to-day variance.

Edit: Hackaday had an article about a simple EMG recently

https://hackaday.com/2016/11/20/emg-tutorial-lets-you-listen...

Interestingly he does not have the classic tremor symptom. For those who do, that might make for a good thing to track. He doesn't really have any symptoms that could be quantitatively measured, especially over the short term.

my dad's brother has Parkinsons and it is very disheartening but I make sure to visit him and take him to lunch each time I visit relatives. He still has mobility but he also is losing his sight. The annoying part is just how frustrating to him it can be when he wants to move and his body gets "stuck". He has to tell him self to stop, stand, and then move. It works a bit, then repeats.

as for it being a bacteria, after my personal experience with bacteria problems I wouldn't be surprised. I was on Cipro for an unrelated infection and this stuff killed all the bacteria in my gut, or at least the good stuff. What moved in made my life miserable for months till they could id it and flush it out.

still I am curious if it is, can it be related to pets? they bring along bacteria we don't handle well. diet would be a little odd to me so I figure it has to be environmental

>can it be related to pets? they bring along bacteria we don't handle well

wouldn't that have killed the human race long go? I think it is other way around - the much lesser exposure to pets in modern society seems to correlate with the rise of auto-immune and immune related diseases.

My father has Parkinson's and has severe osteoporosis, I wonder if there is a connection.

It could be the case. But in order to find out, the best way would be to correlate both conditions with medical reports of a large number of patients.

A platform like [1] could help in sorting this out.

(Question: Does anybody know other/better platforms for this purpose? Does anybody have positive experience in doing this kind of research using such platform?)

[1] http://patientslikeme.com

The best platforms for this sort of research in the US are internal proprietary toolkits of health insurance companies, auditing companies, and law firms. The profit motives of the US health care system don't currently incentivize putting these platforms to use for science, they are mostly used for (re-) billing.

(Source: Worked for an auditing/law firm company deep on their platform once. Have friends still in health insurance/auditing/law firms.)

As for an anecdotal positive experience, one of my friends working for a health insurance company did find a correlation in lack of remissions of a very specific form of cancer and the use of a prescription drug by datamining health insurance records and helped publish that as a cure for that very specific cancer.

But given the way the industries are incentivized and fight among each other and fail to cooperate, I fear I have plenty more negative anecdotes than positive ones of things researched on top of these walled garden platforms.

The US Department of Veterans Affairs has extensive longitudinal data on tens of thousands of Parkinson's patients. They do research as well as treatment.

http://www.parkinsons.va.gov/New_Front_Page.asp

I would like to read the paper your friend was involved in. Do you have a link?

Sorry, I don't know the details (this was essentially picked up in a party conversation) and I'm afraid to ask because I'm assuming it was work done under an NDA given the way the project had been described to me. I don't know exactly how proprietary things were and if it would be socially/legally appropriate to ask at this point because that was under that friend's previous employment. Once again, the binds of our for-profit health system incentivizing against public disclosures and (data) scientists getting public credit for their work.

Could be! Vitamin k2 is involved in calcium use throughout body and there's a good study of how k2 supplements significantly reduced osteoporosis over 2-3 years. Bone mineralization takes a while...

This is the best link I could find right now. But there are lots of good studies on this. http://mobile.nutraingredients-usa.com/Research/Vitamin-K2-s...

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