My dad and two of his siblings have Parkinsons. Not a single study I've read suggests there's a strong familial link

ironfist

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My father's older sister and older brother have it to varying degrees. My father was just seen by a specialist recently to verify if he has it.

While freaking out, I have done a lot of research. There wasn't seemingly a strong familial link. Has anyone seen cases where lots of people in the same family have it? Might there have been something they were exposed to as children and that's why they all have it?

Is there anything my sister or I can do to reduce our chances of getting it? 23andme claimed I do not have the gene but I think that's only for early-onset.

I will say, however, my dad probably has a lot of unresolved trauma with my narcissistic mom.

So there's that.

I believe my dad has been repressed so much in his marriage this may be causing specific health issues. Can I do anything to minimize my likelihood of getting it?
 

GTW

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Family usually share common environmental factors.
"Nature (genes) or nurture?"
 

Thalgo

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Many believe these type of disorders are either directly caused, or heavily influenced, by the presence of bacteria highly transmissible super-bacteria like lyme, bartonella, etc and/or parasites — all stemming from a low functioning/overwhelmed immune system.
 

charlie

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From my research I think most if not all "Parkinsons" is actually heavy metal poisoning and the big culprits being copper and lead.
 

Dave Clark

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My wife's brother was diagnosed with Parkinson's. He was a welder and did work with no ventilation, and his doctors came to the conclusion, after him testing high in heavy metals, that his disease came from the metals. Most of us already know what metals do to the brain, they are linked to just about every brain disease.
 

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I know of several farmers and members of their families who have Parkinson's. It could be a strong familiar link. However, it is believed that the fertilizers and chemicals are the culprits. Once again, it might be heavy metals.
 
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Jkbp

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From my research I think most if not all "Parkinsons" is actually heavy metal poisoning and the big culprits being copper and lead.
What is the best way to test for heavy metals?
 

David PS

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What is the best way to test for heavy metals?

"RP:...The hair quickly and firmly absorbs things that it’s exposed to, from the air and water. Copper and calcium are often from the water and plumbing using in washing. Toenails are more representative of body composition. If the hair and nails have an abnormally large amount of calcium, it’s more likely to indicate a dietary deficiency than excess, since when there is a deficiency of calcium in the diet, or vitamin D, the parathyroid hormone increases, causing calcium from the bones to move into the other tissues. A vitamin K deficiency is another cause.""

"Q:...Do you have any opinion on hair mineral testing and analysis? Can it be a useful way to acquire information about mineral status and other things going on in the body, do you think?"

"RP:...Toenails are much better, because they absorb more from the body, less from environmental air and water exposure."
 

joaquin

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Did they live down wind from a farm? If so, maybe pesticides.

Its cool how many Americans think of farmers as these wholesome hard working authentic men (while the rest of us are phonies). When in actuality these good ol' boys are poisoning their communities while riding around on a million dollar John Deere "tractor".
 
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ironfist

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I wonder if toenail testing works.

Hair testing is a scam. Different labs report ENTIRELY different results, sometimes off by factors of 10x or more, from the same hair samples.

Come at me conspiracy theorists.
 
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ironfist

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I got a PM request asking for any blood work my dad has had.

He just gets normal stuff, like CMP CBC Cholesterol and Vitamin D.

My dad is an old school military guy who only does what the doctor recommends. My mom is a narcissist who doesn't encourage him to research anything and only listen to doctors, but mostly only listen to her, because she things she is as wise as a doctor.

I've suggested get get tests, like b12, because he has been a vegetarian plus fish for 10 years, but he rejects.

All his latest tests, from a month or two ago, were within normal limits for his age.
 

GTW

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Military also exposed to noxious toxins. Seen any Camp Lejeune water contamination settlement claims? Burn pits, Agent Orange....
Don't single out farms and farmers. Whatever they use we are exposed to.
Municipal water supplies don't filter out all the contamination then add chlorine which reacts to form chloramines, adding fluoride to that.
 

mostlylurking

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My father's older sister and older brother have it to varying degrees. My father was just seen by a specialist recently to verify if he has it.

While freaking out, I have done a lot of research. There wasn't seemingly a strong familial link. Has anyone seen cases where lots of people in the same family have it? Might there have been something they were exposed to as children and that's why they all have it?

Is there anything my sister or I can do to reduce our chances of getting it? 23andme claimed I do not have the gene but I think that's only for early-onset.

I will say, however, my dad probably has a lot of unresolved trauma with my narcissistic mom.

So there's that.

I believe my dad has been repressed so much in his marriage this may be causing specific health issues. Can I do anything to minimize my likelihood of getting it?
There is a strong connection between Parkinson's Disease and thiamine deficiency/functional blockage. Dr. Costantini's website has a tremendous amount of helpful information. He treated thousands of Parkinson's Disease patients in Italy.

There is also an excellent book that was recently written, Parkinson's Disease and the B1 Therapy, by Daphne Bryan PhD, that is based on Dr. Costantini's work. I've read the book and found it very helpful. This book would be a good way to get your mother on board.

There is a collection of before and after videos of Dr. Costantini's Parkinson's Disease patients that I think would be very helpful for everyone to watch.

I believe that Parkinson's Disease is an environmentally caused issue. I believe it is the result of something causing a thiamine deficiency or blocking the function of thiamine. However, there could be a genetic predisposition for a need for a higher amount of thiamine than most people. It has to do with the strength of enzyme affinity (said to be affected by one's genes) to their cofactor thiamine.
From my research I think most if not all "Parkinsons" is actually heavy metal poisoning and the big culprits being copper and lead.
I've learned that heavy metals, particularly lead (which I have), bond to thiamine and make it unavailable to the body. The symptoms of lead poisoning exactly match the symptoms of thiamine deficiency and supplementing with high dose thiamine resolves those symptoms. Some experts believe that high dose thiamine chelates lead so it can be gotten out of the body.





[PDF] Effect of lead poisoning on the thiamine status and function in liver and blood of rats. | Semantic Scholar There are multiple links after this article that may be of interest too.

What is the best way to test for heavy metals?
Toenail clippings sound good.

The specialists that chelate people on a regular basis for heavy metal poisoning promote a "chelation challenge test" as the best way to tell heavy metals body load. Although I've done that test (3+ hours of EDTA via IV, followed by a 24 hour urine collection test), there are problems with it in that EDTA chelation is said to stir up the stored heavy metals in the body and might make them deposit in less safe places in the body than where they were before. Also, if you choose to have this test, it is important to know that the doctor is supposed to accurately determine your thiamine status beforehand and correct any thiamine deficiency first because chelating a person with a thiamine deficiency can be fatal.
 
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ironfist

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@mostlylurking I have read a lot of Dr. Constanini's site and hormonesmatter.com.

I got my dad to watch a youtube video about dosing thiamine, so that was cool. He said he would talk to his doctor about it. I'm not sure if he recalled to do so. I'm pretty sure my mom would reject the idea somehow because "ironfist always believes what he reads online" etc. I thought about reaching out to my aunt and sharing the information with her.

I decided to start taking thiamine myself because I was having some long COVID symptoms from the vaccination, and because of my relatives having Parkinsons.

I got a Thiamine test shortly after starting and again after a few weeks. My levels were in the middle before, and at the top later. I started experiencing side effects on 200-300mg a day so I stopped weeks ago.
 

TheCodez

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@mostlylurking I have read a lot of Dr. Constanini's site and hormonesmatter.com.

I got my dad to watch a youtube video about dosing thiamine, so that was cool. He said he would talk to his doctor about it. I'm not sure if he recalled to do so. I'm pretty sure my mom would reject the idea somehow because "ironfist always believes what he reads online" etc. I thought about reaching out to my aunt and sharing the information with her.

I decided to start taking thiamine myself because I was having some long COVID symptoms from the vaccination, and because of my relatives having Parkinsons.

I got a Thiamine test shortly after starting and again after a few weeks. My levels were in the middle before, and at the top later. I started experiencing side effects on 200-300mg a day so I stopped weeks ago.
Yeah, Dr Antonio Constantini was seeing pretty great results with high dose thiamine. Sadly he died (from COVID?) in 2020. HIGH-D0SE THIAMINE (HDT) THERAPY for Parkinson's Disease
 
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Can I do anything to minimize my likelihood of getting it?
In addition to the search for the root cause (I think heavy metals, pesticides, thiamine deficiency and chronic infections were all mentioned so far), tobacco smoking has a good protective effect in studies.

I think it is related to the nicotine itself but please research that before. Depending on your age and sex (I would not start it if there is a chance you will be pregnant out of caution), maybe a safer consumption method for nicotine could be a good idea (e.g. nicotine gums).
 

mostlylurking

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So what is the remedy for such heavy metal poisoning?
Thiamine supplementation helps a lot.

In 2014, I went the EDTA by IV route after being diagnosed with lead poisoning. Nobody bothered to check my thiamine status beforehand. I was prescribed 40 treatments; halfway through I developed rheumatoid arthritis which pretty much incapacitated me. I found Ray Peat's website, read up on hypothyroidism, found a good endocrinologist who doubled my thyroid hormone and changed the brand. I also supplemented multiple b vitamins, including thiamine. The rheumatoid arthritis symptoms went away. I did not return to finish the EDTA IV treatments for the lead poisoning.

I learned about the heavy metals / thiamine connection in 2020 when my thiamine function got blocked by Bactrim antibiotic which resulted in severe thiamine deficiency symptoms. I read the Parkinson's Disease and the B1 Therapy book and realized that indeed I had had all the symptoms the case studies mentioned fall of 2020. I am convinced that had I gone to a neurologist during that time and been tested I would have been diagnosed with Parkinson's.

I've been on high dose thiamine hcl for 2 years now and am doing well.
 

mostlylurking

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@mostlylurking I have read a lot of Dr. Constanini's site and hormonesmatter.com.

I got my dad to watch a youtube video about dosing thiamine, so that was cool. He said he would talk to his doctor about it. I'm not sure if he recalled to do so. I'm pretty sure my mom would reject the idea somehow because "ironfist always believes what he reads online" etc. I thought about reaching out to my aunt and sharing the information with her.

I decided to start taking thiamine myself because I was having some long COVID symptoms from the vaccination, and because of my relatives having Parkinsons.

I got a Thiamine test shortly after starting and again after a few weeks. My levels were in the middle before, and at the top later. I started experiencing side effects on 200-300mg a day so I stopped weeks ago.
Info on testing for thiamine status: Thiamine Deficiency Testing: Understanding the Labs- Hormones Matter

I gave a copy of the Parkinson's and B1 therapy book to a friend down the street a couple of weeks ago. She told me after reading it that if only her friend had had this book when her husband was dying of Parkinson's things would have gone so much better for them. I highly recommend that book. It's a short read and it is not overly technical. It includes multiple first hand accounts of supplementing with thiamine for Parkinson's, including the symptoms relieved.
 
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ironfist

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I have read that article about testing for thiamine status. I'm not sure I agree with it.

You're telling me there's only one real test that actually works, and it's not done anymore (because they said it's not accurate), and you can only get it done in the UK?

Whole blood thiamine testing is superior to currently available alternative tests for assessing thiamine status. Serum or plasma thiamine testing suffers from poor sensitivity and specificity, and less than 10% of blood thiamine is contained in plasma. Transketolase determination, once considered the most reliable means of assessing thiamine status, is now considered an inadequate method. The transketolase method is an indirect assessment. Since transketolase activity requires thiamin, decreased transketolase activity is presumed to be due to the decrease of thiamin. However, the test is somewhat nonspecific, as other factors may decrease transketolase activity. Transketolase is less sensitive than liquid chromatography-tandem mass spectrometry), has poor precision, and specimen stability concerns.

Because it's so accurate they decided not to use it?

Ok.

With that in mind, after a few weeks of 100-200mg a day of thiamine, I started getting different side-effects, including burning itching eyelids. Not eyes. Eye lids. If I even touch them they burn for like 5 minutes after.

I took thiamine for a while because I've been having heart based long covid (from the vaccine) symptoms, including palpitations, chest pain, random adrenaline dumps, and pitting edema in my legs. I'm slim so pitting edema is super obvious. I emailed with the author of hormonesmatter for a few weeks and talked about how vaccinations can deplete thiamine. It seemed logical to try it. My thiamine levels are now at the top of normal range (if you believe whole blood testing) and I get strong side effects if I take it, so I figured I'd stop. Essentially, my symptoms sounded like wet beriberi. But I think something weird is going on because for the last few years, actually, as long as I can remember, when I take B vitamins I feel bad. b12 makes me feel bad. Methyl b12 makes me feel HORRIBLE. B complexes (normal) exacerbate my OCD. B vitamins methyl make me feel super terrible. According to some test I took, I should try hydroxocobalamin or adenosylcobalamin. I have one of the methyl mutations.
 
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