I have tried to find anything on here about manganese, and sadly have not been successful. I had my long awaited appointment with Dr Mischley on Thursday, and after 2 hours, plus some test results, she believes manganese may be the cause of my symptoms! I did the hair test she recommends, which I had been looking to do ever since someone told me about it. I cannot attach my results here sadly since they are one a pdf. Maybe I can try for a screen shot. Nope, not letting me do it. But my manganese levels are 6.3, and normal levels are 0.8-0.60! My lead and silver levels are also off the charts. And no, I never color my hair.
Now I'm not completely convinced this is the real culprit, but after 5 different neurologists, including a functional one, all confirmed PD, I was convinced. In the back of my mind however, I have had doubts as well. And yet, the progression and the feeling better with mucuna had me convinced enough. So now I am wondering if maybe I should do the skin biopsy test. Syn One I believe it is called. Anyone here done it yet? Share your experience if you have please.
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do you have any theories about how you were exposed to manganese, silver, and lead in amounts that would cause them to be elevated?
"A person might have elevated levels of manganese, lead, and silver in their body due to exposure to contaminated air, water, or food, often stemming from industrial activities in their environment, such as mining, smelting, or working in a factory where these metals are used, leading to inhalation of airborne particles containing these metals; additionally, consuming contaminated water or food from polluted areas can also contribute to elevated levels of these heavy metals. "
I lived in a house with a well for 17 years. I lived in nyc and drank water from the tap and recently learned that there are still lead pipes there, especially in older buildings like mine was. Plus my house was below many farms. The silver most likely has to do with all the dental work I have had done since childhood.
Luckily, I am no longer at that house with the well, and no longer in NYC either. But I'm sure some of those exposures are still happening, and not only to me.
Effective Treatment of Manganese-Induced Occupational Parkinsonism With p-Aminosalicylic Acid: A Case of 17-Year Follow-Up Study pmc.ncbi.nlm.nih.gov/articl...
"She received 6 g PAS per day through an intravenous drip infusion for 4 days and rested for 3 days as one therapeutic course. Fifteen such courses were carried out between March and June 1987....At the end of PAS treatment, her symptoms were significantly alleviated, and handwriting recovered to normal. Recent follow-up examination at age 67 years (in 2004) showed a general normal presentation"
Manganese can be found in food and water as well as the fungicide Maneb.
Thank you park_bear ! I believe this PAS was what was mentioned by Laurie when she suggested I see her colleague Josh. I'm looking forward to meeting with him, and if I have to go to Seatlle, so be it. Of course currently I am literally on the opposite end of the country in Southern Florida, trying the green juice way of detox. Someone here at Hippocrates today said chlorella at high doses might work too! Any opinion on that?
According to this reference: link.springer.com/article/1..., Chlorella can help remove manganese from contaminated water, but it has to be in the water, so I do not think it will work to take it orally to remove manganese from the human body.
Of course we are but that's not the issue. The manganese contamination is in your bodily fluids and neurons, whereas Chlorella by necessity must stay confined to your digestive tract
This was the relevant piece of the AI overview: "Heavy metal excretion: Chlorella can help the body excrete heavy metals." It directs us to this reference:
"Because Chlorella has been shown to be effective in enhancing the excretion of heavy metals, we hypothesized that Chlorella could also inhibit the absorption and enhance the elimination of radioactive cesium or strontium from the body after their oral intake."
So that is what they hypothesized - but we need to know what they did:
"Chlorella ...was orally administrated ...Thirty minutes after the final administration of the Chlorella suspension, a 85Sr solution (24–40 kBq / 100 μL) was orally administrated to the mice"
So they gave the mice some Chlorella and then 30 minutes later gave them some radioactive strontium. The Chlorella then helped to bind and eliminate the strontium that was in the digestive tract. The AI response was misleading because it left out the digestive tract part. The accurate response would be: "Chlorella can help the body excrete heavy metals from the digestive tract."
This is the second time within a week that I have been made aware of false or misleading AI output. I might make a post out of these events.
Yes I have done the syn one test when it was in clinical trial. My wife and I both did it. She was a control and I was a PWP. They take three biopsies one from your shoulder and two from your leg. It was not that pleasant. Honestly I'd rather have a spinal, put in the grand scheme of things it's not terrible. It goes off to the lab. I do not know how long it takes to get results back because we had to wait a year for the trial to conclude. At that time I received a one page PDF of the results. It confirmed Phosphorylated alpha-synuclein, the bad stuff, in my skin. The report had some pictures which purported to show the alpha synuclein. It was not quantitative and it did not say if I had a lot or a little. Interestingly, both of our reports showed short fiber neuropathy. I have a fairly extensive set of studies for various clinical trials and I can only assume that this conclusion is consistent with other tests like a DatScan, and other tests that Roche did. What I imagined the test would tell you without other data points is that if you do not have a positive result then you probably do not have classic Parkinson's. A positive test tells you that you have the bad protein which is not good but whether that is a definitive diagnosis of Parkinson's I don't know.
Reference info from the web : (P-syn) is a protein that is linked to the development of Parkinson's disease and other neurodegenerative diseases: P-syn is a pathologic form of the alpha-synuclein protein, where a phosphate group is added to the serine moiety at position 129. P-syn can be caused by a number of mechanisms, including inflammation, mitochondrial dysfunction, single nucleotide mutations, decreased degradation, or excess production.
This is exactly what I was looking for. Thank you for sharing this detailed description. I'm not sure I want to take the risk of iatrogenic exposure to get this test. My understanding is that it takes about 21 days to get results. I would be a wreck waiting. Also wondering how big the biopsy areas were.
The biopsy pieces were round, about the size of a pencil ✏️ eraser. They were fairly deep. My wife did not really have a problem. The one on my back bled for some time. Again it wasn't the worst procedure. Quite quick.
hello new to this too have just bought NMN and Spermidine will let you know if any improvements my partner is currently taking B1 Thiamine liquid but I have joined this Facebook today - Roy Propsner
Created Parkinson's thiamine hcl on
9 March 2024
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“Spermidine protects against α-synuclein neurotoxicity”
If you put this into search bar it should come up - I don’t have a translator x
I emailed donotage.org they said those are two of the supplements their customers with Parkinson’s take NMN /Spermidine
5 years ago when I was diagnosed and consulted with Laurie my manganese levels were off the charts high. I was dying my hair at the time and drank well water for 15 years prior. She was wondering if my pd symptoms were caused by manganese toxicity. I stopped dying my hair and retested and my levels were normal. I hope you can get to the bottom of things.
Thank you for sharing this! I never dyed my hair. So it's most likely the well water which I am away from for nearly 3 years now. Did your symptoms change?
Did you end up doing any chelation or detox from the metals? Was it just manganese that was high for you? My tests had off the charts lead, silver and titanium (I have 4 dental implants).
Manganese miners developed PD symptoms. I had a welding machine that used Flux-core wire. Welding Flux has high levels of manganese. I used it to restore old VWs for 30+ years and never bothered with masks.
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