Parkinson's and calcium disregulation

[arty-fact]

I have previously posted about some of my experiences with long term high-end-of-normal calcium levels...

In a nutshell: It all started after I did some investigating and then suggested to a specialist that my many weird and unpleasant symptoms might not all be from PD. I suspected I had hyperparathyroidism. After completely poo-hooeing the idea, I was put on a "wait and see" protocol - for nearly a year. This was despite their own tests showing I already had very high PTH levels and a calcium excretion test showing my my bones were losing calcium at more than double the danger rate.

In that year, health-wise I fell off a cliff. I had lost my confidence in self-diagnosis, and just waited. Growing steadily worse and weaker. Finally - only when a second DEXA scan showed my T-score had dropped a full point and a half into full-blown osteoporosis, and I experienced my first (and please God last) kidney stone - was I diagnosed with - you guessed it - a hyperparathyroid adeoma.

I suffered - unnecessarily I think - the havoc of a kidney stone's insane pain, multiple emergency visits, and multiple surgeries including the evil joys of the J stent. Let's just say that's something you wouldn't wish on your worst enemy.

Post surgery I've been told I'm a complete success. However I still have high end calcium levels and major ongoing calcium problems - calcium crystals have rapidly eaten away my hip joints to a very severe bone-on- bone state. I now need a double hip replacement.

So I started to do some more research.

Typing "calcium disregulation in Parkinson's" into a search engine brings up literally hundreds of scholarly articles that confirm the connection between rogue calcium and PD. But any specialist I have spoken to has denied there's any connection.

So then I started wondering about the incidence of calcium issues experienced by this group. Given that Dopamine is transported by calcium neurons I feel there must be some kind of meaningful connection.

II'm clearly no scientist, but I'd love to hear your thoughts - and about any calcium issues you may have. Maybe together we might be able to shine a bit of light on a new area for investigation?

[MarionP]

No I do not think you were wrong on the calcium, and obviously your doctor should have been paying you. I can't help but hope that sometime soon AI will put some of those type 2 error neurologists out of existence. In my day it was almost achieved with what they called "expert systems." Today 40 years later they call it AI and I can hardly wait for the neurologist pink slips to start flowing in.

[park_bear in reply to MarionP]

No way is the current version of what is alleged to be artificial "intelligence" going to be anybody's savior, because it is not intelligent. It is in fact really stupid. It does not reason. It does not model reality. All it does is find likely collections of words. People here using it have routinely come up with the wrong answers - things like AI failing to notice "is unlikely" appended to a conclusion.

[CaseyInsights in reply to park_bear]

You truly do amaze me with your insistence that Ai is just a ‘stochastic parrot’. And the amazement is compounded by your so obvious, solid scientific background. But you will be forced to confront and be astounded by its emergent properties, very much like the cutting edge researches in this field have been. I give you two years: max three to make a reassessment.

It is early days still, but here is the Nobel Committee:

The Nobel Prize in Chemistry 2024 is about proteins, life’s ingenious chemical tools. David Baker has succeeded with the almost impossible feat of building entirely new kinds of proteins. Demis Hassabis and John Jumper have developed an AI model to solve a 50-year-old problem: predicting proteins’ complex structures. These discoveries hold enormous potential.

Demis Hassabis and John Jumper are from Google Deep Mind.

Your protestations are all for naught. Ai is, even in these early days, more than a parrot.

Nuff said 🌺

nobelprize.org/prizes/chemi...

[MarionP in reply to CaseyInsights]

You called it, I added a little historical color from a bit of a different angle below in two or three responses around this string.

[park_bear in reply to CaseyInsights]

The Hassabis and Jumper AI model is not a large language model chat bot.

nature.com/articles/s41586-...

"Here we provide the first computational method that can regularly predict protein structures with atomic accuracy even in cases in which no similar structure is known. We validated an entirely redesigned version of our neural network-based model, AlphaFold"

While it is true that both they and large language model chatbots both make use of neural networks, if one is going to take that as an indication of resemblance one might just as well say they both use computers.

Enough said indeed.

[CaseyInsights in reply to park_bear]

To be sure the underlying architectures between AlfaFold and ChatGPT are different and so are the domains.

Both use deep learning and attention mechanisms, but AlphaFold applies them in a scientific domain, while ChatGPT applies them in natural language processing.

Additionally both use prediction . AlphaFold predicts protein folding based on evolutionary and structural biology principles. ChatGPT is trained on vast amounts of text data to predict the next word in a sentence.

In both architectures they both go beyond their training data. The exhibit what is called emergent properties.

The only way to understand the reality is to interact with these ‘intelligent bots’ over time. Then the scales fall from our eyes.

No problems.

I am certain in time you will come around 🌹

[park_bear in reply to CaseyInsights]

When we look under the hood:

"Underpinning the latest version of AlphaFold is a novel machine learning approach that incorporates physical and biological knowledge about protein structure, leveraging multi-sequence alignments, into the design of the deep learning algorithm."

No such knowledge is provided to LLM chatbots as far as I know. Look at it this way - what is the best an LLM chat bot can do for us when we search for answers? Come up with an onpoint study, which we then have to verify actually applies. The big problem is many people do not actually do this, and accept wrong answers. It goes without saying that the AlphaFold result has to be confirmed in the lab to be accepted as valid.

Some people have discovered that LLM chatbots are useful for specialized programming. But once again these results have to be validated through the debug process.

I have no need to use an LLM chatbot for research when Google Scholar already does this without providing false assurance.

[MarionP in reply to park_bear]

Well not really the way you suggest. "Expert systems" were being used in the 1980s and tested against doctors. Tested against doctors because most of what they're doing is indeed not reasoning, the great bulk of what they do is comparing against endless series of checklists and decision trees. It's comparing to memorizable lists, some of them very exhaustive, applied to decision trees which are simple. Ask a few physicians and a few researchers, or if you don't know any, look it up as expert systems performance comparisons. In fact much of the TV series House was based on this (actually the series was based on individual case reports in published journals over the last 2 to 4 decades and dramatized by the show) (today the Canadian physician who hosts the YouTube channel "violin MD" does the same, extracting and dramatizing cases pulled from published case reports, you can even see it in her credits at the end of the videos), although that's not exactly irrelevant comparison it makes the point. Expert systems never made it into mainstream because, just like in the 1860s when midwives became an active competitive force doing abortions, physicians as an lobby group stopped to development (in the case of abortions in the 1860s, successfully lobbying to have abortions outlawed... That's right, abortions were originally outlawed because of competition, not a moral, political or religious objection).

[park_bear in reply to MarionP]

I'm well aware of expert systems and have been for a long time. They are capable of being actually useful. Large language model chatbots just make less obvious errors the more they are tinkered with.

[MarionP in reply to park_bear]

I don't recall typing to you "LLMs" or referring to chatbots. I believe I specified "AI.". When you seem to insert your own paraphrase or mis-translate or redefine, perhaps on my behalf but more likely not, my term into something else, I further illuminated with an example, expert systems. Do you have an objection to either term, because I read and took seriously what you said, did you do the same or translate what I said into something very much different? And who said anything about "tinkering," I thought I typed "research."

[park_bear in reply to MarionP]

For most people AI means LLM chat bots. Now that I reread your comments, I get that you were referring more broadly to computer aided intelligence. I agree that can be very useful. I apologize for my critical attitude towards your comments here.

[MarionP in reply to park_bear]

And FYI a couple of search terms to try in your Google search engine (the last 2 are especially interesting):

the history of expert systems in biomedical research and diagnostic practice systems

list of expert systems

mycin expert system

[Bolt_Upright in reply to park_bear]

I love Claude.ai and consult with him about almost everything now...BUT:

While Claude provides much helpful information, I have noticed that he can be VERY WRONG and VERY CONFIDENT HE IS RIGHT WHEN HE IS WRONG.

I discovered I have a combination of black pipe and galvanized pipe carrying gas in my basement. Claude was very certain this was a code violation and dangerous:

"I want to help ensure your safety with gas piping. To be direct: galvanized pipe should NOT be used for gas lines in homes. In Ohio and across the US, this is prohibited by building codes because:

- Galvanized coating can flake off over time, contaminating gas lines and appliances

- The zinc coating can react with certain gas components, creating debris that blocks lines

- The corrosion can eventually lead to dangerous gas leaks"

Actually, this is not a code violation in most places. It may not be a code violation anywhere anymore. I think it used to be a concern, but people figured out it was not a problem.

I still love Claude. I just realize now that he is not always right. He is like a beloved eccentric opinionated knowledgeable uncle. I want his advice on things, but I don't feel I have to follow that advice.

[park_bear in reply to Bolt_Upright]

That is the key- understanding that chatbots can be wrong.

[Boscoejean]

I wonder what would happen if you would print up the research and made copies of it and took it to all these doctors. I think some doctors are overwhelmed and others seem to think that any ideas out of the ordinary are not to be accepted or used but if you barrage them with research that shows that you are onto something maybe they will be more amenable to paying attention to the actual research. I do however agree that it does often seem like a person is a bit on their own when it comes to finding some remediation but sometimes it just takes meeting the right people and asking the right questions. This subject is totally new to me but it seems like your research skills are exemplary and I hope you can find solutions. You may not have the time to do this and they obviously did not help you in the right way however it might spare someone else from having to deal with all the issues you are having to deal with now.

[MarionP in reply to Boscoejean]

Yes, I added some history color when I responded to park bear. It was a project of management research and computer research back in the day when the shortage of physicians combined with the voluminous expansion of complexity of disorders when having to bridge the gap between actual medical research and the problems in translating and transferring the information into clinical practice to combat the corresponding relative shortage of physicians, which really significantly ballooned in the 70s and 80s.

[Boscoejean in reply to MarionP]

good explanation

[MBAnderson]

Doctors. Can't live with them, can't live without them - maybe.

[MarionP in reply to MBAnderson]

I was about to say the same about lobbyists.

[Boscoejean in reply to MBAnderson]

choosing your doctors wisely is somewhat helpful- we don't stay with a doctor who will not listen to what we have to say- I have had the same doctor for well over 30 years so I dread the day she may decide to retire- I definitely have appreciation for the good ones

[arty-fact in reply to Boscoejean]

I totally agree. You need to feel seen and heard. They are the medical professionals, but we are often the 'specialists' - and the most invested - in our own health. For me it needs to feel like you're respectfully working together

[evenshoshan]

arty-fact, hi. Do you mean that calcium supplements can be dangerous ? FYI, I take one 800mg calcium (calcium carbonat) tablet per day from a German company called 'natural elements'. Should I stop ?

[MBAnderson in reply to evenshoshan]

First, why do you take them?

I don't think it is settled that calcium supplements strengthen bones. Plus, too much calcium from supplements may also increase the risk of kidney stones and cardiovascular issues.

[evenshoshan in reply to MBAnderson]

MBAnderson, hello. I now take B1 HCL (am embarking on the HDT Therapy journey) and was led to believe that one had to systematically supplement it with Magnesium and Calcium, that's the only reason.

[arty-fact]

I am feeling way beyond my pay grade here!

I’m not qualified to give medical advice on anything. And I promise I am human, and read research written by humans. Although I may have read a AI summary or two along the way.

I acknowledge my premise is unscientific and probably pretty naive. I was just struck by the fact that my previous post on Hyperparathyroidism got quite a few comments from fellow sufferers. And it is a pretty uncommon diagnosis. So I was wondering if we could work together to see how many people on this forum with Parkinson’s also have calcium issues. And if that percentage seems higher than the general population.

[park_bear in reply to arty-fact]

Sorry for the AI distraction, and very sorry that your insight into your own medical condition was ignored by those who thought they knew better.

For what it may be worth regarding calcium and bones: After examining an x-ray of my lumbar spine, my MD reported that my vertebrae were in unusually good shape for my age and wondered what I was doing. I take vitamin K - a combination that includes both K1 and K2. Also vitamin D, boron, silica and glucosamine chondroitin. But I do not suffer from the complication of hyperparathyroidism.