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.

[Gallowglass in reply to CaseyInsights]

I’ll be interested in AI when they prove it can discern truth from falsehood and when it includes the information that is hidden from it.

[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.

[LAJ12345 in reply to park_bear]

Unlike you?

[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

[LAJ12345 in reply to Boscoejean]

I think they are just risk adverse. If they condone an out of the ordinary treatment and it goes bad they can be sued or censured. Why risk it?

[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.

[Kruidje in reply to evenshoshan]

You were informed correctly

[evenshoshan in reply to Kruidje]

Kruidje, thank you very much.

[Despe in reply to evenshoshan]

The combination of D3, Calcium, and Magnesium is what strengthens bones. My hubby and I follow this protocol.

[Kruidje in reply to MBAnderson]

Calcium do strenght the bones! And calcium is needed to help start ATP production. It is needed to bind the oxalates in the gut one eat. If oxalates doesn't bind to calcium in the gut they can go trough the gutlining into the blood. There the body will try to place them in holes in your tissue (they love the joints). And some you will pee out and some will bind the calcium from your blood and they can form oxalatestones in the kidney's. If the bloodcalcium goes down, the bones will release calcium to keep the levels up. The calcium in the bones will be repleaced with other metals like lead. But then ones bones are weaker. Adding calcium will prevent calciumoxalate formation in the long run. Important is to bring down the intake of oxalates. Nuts, spinach, rubarb, kiwi, starfruit, whole grains, chiaseeds, sesamseeds, yams, bananas, tomatos, peanuts, boekweit, and many other super foods are high (some very high) in oxalates. If the kidneys are full of calciumoxalate stones and oxalatecrumble then kidney slow down there work. And one will spill proteins. The kidneys cannot longer filter the proteins to stay in the blood. And your dopamine and serotonine will be no longer avaliable in enough amounts to keep one healthy. Slowing down oxalates slowly and upping calcium slowly will bring back the calcium balance. When going to fast this can result in more stone formation in the beginning. But one have to make the shift to be healthy in the long term. More info sallyknorton.com and fbgroup 'trying low oxalates'. You also need calcium for managing b1 in the mitochondria. Info hormonesmatter.com (search for calcium/parkinson). Books to read: 'thiamine deficiency disease, dysautonomia and high calorie malnutrition'. Parkinson is a thiamine deficiency disease.

[MBAnderson in reply to Kruidje]

I didn't say calcium doesn't strengthen bones, I said it is unsettled that supplements do and while I agree that much literature say calcium supplements are useful, there is credible literature that says they are not, making it IMO, unsettled.

From John Hopkins Medical

“A nutrient in pill form is not processed in the body the same way as it is when ingested from a food source. Furthermore, people believe that the proof that calcium supplements fortify bones is more robust than it really is,” she says. “The truth is, the research is inconclusive. But there is a growing body of evidence that suggests no health benefit, or even worse, that calcium supplements may be harmful.”

hopkinsmedicine.org/health/...

From Harvard

Over all, getting at least 800 mg of calcium a day from the diet or taking at least 1,000 mg of supplemental calcium a day increased bone density. But bone density only increased by about 0.6% to 1.8% — an amount too low to affect fracture risk."

health.harvard.edu/blog/how...

"...overall, the analysis showed that calcium supplementation increases BMD by a maximum of 1.8%, starting from the first year of treatment without a progressive increase over time."

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

[Kruidje in reply to MBAnderson]

I make my own capsules with dryed eggshell powder. The question was are parkinson and calcium related. Yes they are. But calcium is not on his own. Other minerals are needed as well. Boron, magnesium, molybdenum,... are involved also the b-vitamines are involved. And when one eats to much acidic foods, one will desolve the calcium and pee it out. But some like to have alkalized urine so they fill there body with lots of acids like citrus fruits and acv. Also lots of processed foods contain citric acid. This breaksdown al the calcium in the gut. And one need calcium in the gut. The SI has to be alkaline and not acidic. Without calcium it is difficult to digest fats, without good fatdigestion one can produce to much hydrosulfide and/or one has not enough ketones, and one has not enough sources to make hormones. Calcium is also a transporter.

[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.

[LAJ12345 in reply to park_bear]

Maybe you don’t suffer that because of what you take?

[SilentEchoes in reply to LAJ12345]

Boron is probably what's helping.

[LAJ12345 in reply to SilentEchoes]

Boron.? That’s a new one. What do you have on that?

[SilentEchoes in reply to LAJ12345]

researchgate.net/publicatio...

[LAJ12345 in reply to SilentEchoes]

how much do you take?

[SilentEchoes in reply to LAJ12345]

This is the brand I buy. purethera.com/products/bio-...

I posted a link, read the paper for dosing advice. Boron is an important cofactor for Vit. D and magnesium and aids calcium absorption.

You should also get checked for MTHFR gene mutations. I suspect it's a big player in the development of neurodegenerative disease. I don't think it's controversial anymore to say that we have all been overexposed to neurotoxic organophosphate pesticides through the contamination of our food and other environmental poisoning. OPs disrupt methylation pathways and people with the MTHFR mutation are already compromised. You should always take methylated vitamins and hydroxocobalamin - avoid folic acid as a form of folate and cyanocobalamin as a form of B12 - they are toxic. Read the labels, you want clean ingredients without fillers and organic if possible. This is why I chose the PURE brand.

SE 🕊️

[LAJ12345 in reply to SilentEchoes]

yes hubby has a double defect there. also in D vitamin processing,

he uses Hardys DEN with added vitamers that has the natural b vitamins.

[Esperanto in reply to LAJ12345]

Hardy’s Daily Essential Nutrients (DEN) does not exclusively contain natural vitamins, and it often utilizes synthetic forms such as Pyridoxine hydrochloride, which is a synthetic form of Vitamin B6. Consuming high doses, as found in Hardy’s DEN servings, can lead to toxicity. Chronic excessive intake of this synthetic form can result in serious nerve damage and can enhance the peripheral conversion of levodopa to dopamine, reducing its effectiveness.

It is crucial to choose a multivitamin or B-complex supplement that includes Pyridoxal 5'-phosphate (P5P), the active and bioavailable form of Vitamin B6 that the body can utilize directly. P5P is regarded as more effective because it plays a vital role in enzymatic reactions and is involved in numerous metabolic processes.

[Prksn]

My wife is 47 years old and has had Parkinson's disease for 4 years. She also has multiple Osteochondroma since the age of 3. She underwent 12 surgeries in 30 years. Calcium levels constantly dropped during the surgery. So much so that her heart came to a standstill. If calcium serum is given during surgery, it does not decrease. However, we cannot convince the doctors in every surgery. Because different doctors can perform the surgery. Of course, they learn their lesson and have to give calcium when faced with the same situation.It is said that there may be a certain amount of calcium decrease due to anesthesia. However, I think this may be related to Parkinson's. However, I do not have enough information to establish a connection between them.

[arty-fact in reply to Prksn]

Thanks for sharing your wife’s experience. It just seems so unlikely to me that these kind of major health problems exist entirely independently of each other. I was the same age as your wife when diagnosed. I hope she’s managing okay

[DiyChas]

I firmly believe AI will change/enhance medicine is ways we can't imagine.I'm 80, and hope I'll still be around to see these awesome improvements. And I'm am expecting some to be regarding PD.

[drumhead]

Hi arty,

Im 59 and was diagnosed with PD about 2 years ago. I started having symptoms (twitching finger and tingly toes) about a year before. I also have hypothyroidism and I've been on (Levothyroxine) for at least 15 years now. I was recently diagnosed with both osteopenia and osteoporosis. My last blood test indicated high end of normal for Ca. I need to go back and look at my history, but I suspect they didn't check calcium levels at my annual physicals.

I posted the article below that you might find interesting, actually more the replies...

healthunlocked.com/cure-par...

[Darty3]

I am responding to the original post about calcium.

I started this medical journey with hypothyroidism and trying to find a medic who would prescribe liothyronine (T3). In the process I was diagnosed with hyperparathyroidism and told that since the calcium levels were only slightly raised they would wait and see. I managed to get T3 which gave me my fight back.

I steadily got worse since they refused to operate so I sought a second opinion via the NHS to the top hospital department in London. I had to wait because of the pandemic but eventually had the surgery and felt so much better but not totally better....then diagnosed with Parkinson's. Did all the delays firstly for T3 and then the parathyroid operation contribute to the PD? Since all three malaises have affected the muscles.

[arty-fact in reply to Darty3]

Thanks for your reply Darty3

I’m interested in your comment about your muscles being affected. Can you elaborate please?

[Darty3 in reply to arty-fact]

I started aged 67 getting painful thigh muscles when kneeling or bending down to pick up something from the floor. Then it spread to my groin muscles when riding a horse. And general malaise, constipation, weak bladder etc. Finally diagnosed myself with hypothyroidism as thyroid blood tests in the normal range. But also diagnosed with hyperparathyroidism.

Managed to get liothyronine T3 felt so much better, legs stopped hurting but still not right. Read all about raised calcium and still suffering constipation, weak bladder, general malaise but felt I was able to find out what was wrong. Finally legs started filling, raised blood pressure so that is when I asked for 2nd opinion on hyperparathyroidism. Until the operation was struggling with walking at any speed and general muscle aches.

Finally left with Parkinson's. Though after the parathyroid operation started to look and feel a lot better. But my main PD symptom is muscle weakness. No strength, can walk at a decent speed now, but unable to lift heavy objects and pathetically weak. The last straw was my eyesight in the mornings. I was unable to read over breakfast as my eyes wouldn't focus. Now on opicapone which extends the effects of the dopamine dose, and cured feeble eyes!

I think the trouble with all these maladies is that they strike everybody differently. And the whole of medicine appears to be based on the male body........Good luck!