Oil ..no not again

[Peter Cobbold]

22 hours ago, john.r.davies said:

NO More tHan 25mgs/day, according to the NHS 

I took 34mg pd for sixth months, to no effect on non-motor symptoms. The curious thing is Zn-DOPA is taken up on the gut transporter, but leads to zinc deficiency ! not overload. LDOPA has several other unrecognised adverse actions, I am weaning myself off it.

In case anyone with PD is interested I posted this recently on F/b:

""Your confidence in lDOPA as the 'gold standard' therapy is debatable. Short-term it does have a remarkable effect on motor symptoms. However, my experience is different from most pwPD and is have encountered problems. My strategy is to keep my vitamin D status at Maasai levels by taking 4000 IU D3 daily. ( for reasons explained elsewhere).D3 regulated several hundred genes including those that defend against xenobiotic drugs. D3 acts as if lDOPA is a xenobiotic. D3 promotes expression of cyp3A4 in the intestines, liver and bbb endothelium. Cyp3a4 converts lDOPA to toxic, reactive dopaquinone that then reacts with cysteine to generate pro-oxidant pheomelanin. D3 promotes COMT that metabolises lDOPA to 3-O-methyldopa that competes with lDOPA for uptake by neurones. D3 promotes expression of COMT. Activity of COMT consumes methyl groups supplied by the SAM cycle which requires vit B12, folate and B6. Toxic homocysteine is produced , and is implicated in dementias. lDOPA chelates zinc leading to zinc deficiency. It may not be coincidental that non-motor symptoms of PD resemble the symptom of dietary zinc deficiency. Face with the realisation that lDOPA itself may contribute to PD disease progression I am in the process of reducing dose, using pramipexole and opicapone. Rasagiline does not appear to affect my symptoms,probably because D3 suppresses expression of MAO-B. PwPD who do not supplement with ca 4000 IU D3 may not experience any of the above. However I see the D3 supplement as the cornerstone of my personal therapy. Why? My D3 level is the same as the Massai pastoralists and their risk of sporadic PD is 23-fold lower that the UK population.""

Take home mssg: supplement with 4000 IU D3 daily and the 1.5% risk of PD at age 70 vanishes.

Peter

[stillp]

19 hours ago, Peter Cobbold said:

 

Take home mssg: supplement with 4000 IU D3 daily and the 1.5% risk of PD at age 70 vanishes.

 

Doesn't do anything for my dystonic tremor though.

Pete

[Peter Cobbold]

On 4/23/2026 at 5:23 PM, stillp said:

Doesn't do anything for my dystonic tremor though.

Pete

Pete,  Have you tried magnesium supplement? 300mg elemental Mg daily is reckoned to be missing in modern diets with a processed food content,

Mg deficicncy does not show up in blood test, and that level of supplement can take months to work fully.

Statpearls does not mention Mg https://www.ncbi.nlm.nih.gov/books/NBK448144/

However the possibility that we are all deficient in Mg is gaining traction eg  https://pmc.ncbi.nlm.nih.gov/articles/PMC5786912/

Google AI has several hits re Mg for DT...

Peter

 

 

[stillp]

Thanks Peter, I'll try some Mg supplements.

Pete

[Peter Cobbold]

16 hours ago, stillp said:

Thanks Peter, I'll try some Mg supplements.

Pete

Hi Peter Another possibility is zinc supplement. I am interested in zinc as long term use of LDOPA by pwPD leads to dyskenesias and DOPA is known to chelate zinc and lower serum levels. So I searched 'dietary zinc deficiency dystonic tremor' - it produced several hits. Zinc is needed for signalling by several hundred transcription factors that control gene expression so it could be beneficial. Zinc and dystonia is an emerging field so no clinical protocols. Supplements need care to avoid toxiity and impaired copper uptake. This study used 30mg zinc for 3 months on elderlies, https://medicalxpress.com/news/2016-01-zinc-supplement-boosted-serum-immunity.html  and that's what I followed. On one day a week i did not take zinc, and took a copper supplement.  Best wishes, Peter

 

Edited April 26 by Peter Cobbold

[stillp]

Amazon must have read the same reports as you Peter, as the magnesium tablets I ordered are combined with zinc!

Anything is worth a try; the neurologist prescribed various sedatives, but none seemed to have must effect. The best was Primidone, but if I take a high enough dose to control the tremor I feel over-sedated.

Pete

[Peter Cobbold]

17 hours ago, stillp said:

Amazon must have read the same reports as you Peter, as the magnesium tablets I ordered are combined with zinc!

Anything is worth a try; the neurologist prescribed various sedatives, but none seemed to have must effect. The best was Primidone, but if I take a high enough dose to control the tremor I feel over-sedated.

Pete

D3, Mg and Zn..... best alert the wife:https://thedoctorspractice.co.uk/the-science-behind-vitamin-d-magnesium-and-zinc-natural-strategies-to-optimise-testosterone-levels/      I wonder if that GP (private) has seen pts with dystonia improve?  Peter

[Peter Cobbold]

17 hours ago, stillp said:

Amazon must have read the same reports as you Peter, as the magnesium tablets I ordered are combined with zinc!

Anything is worth a try; the neurologist prescribed various sedatives, but none seemed to have must effect. The best was Primidone, but if I take a high enough dose to control the tremor I feel over-sedated.

Pete

Pete,  I guess you know all about the different types of dystonias https://dystonia-foundation.org/what-is-dystonia/types-dystonia/dopa-responsive/   And with your doctors have eliminated dopa-responsive dystonia? Sagawa disease is a very rare genetic example and responds to very low DOPA therapy. If doctors have not suggested DOPA I would ask them. Or you could try DOPA yourself. It present in Mucuna powder, which is popular with some pts with PD. Peter

 

[stillp]

Thanks Peter. I'm told I don't have dystonia, just(!) a dystonic tremor.

Pete

[Peter Cobbold]

3 hours ago, stillp said:

Thanks Peter. I'm told I don't have dystonia, just(!) a dystonic tremor.

Pete

I Googled "lDOPA therapy for dystonic tremor ?" and it can help, have no effect or worsen.   There is no consensus on what excatly dystonic tremor is https://pmc.ncbi.nlm.nih.gov/articles/PMC3580791/     MIght be worth trying DOPA? no harm un asking your specialisst. DT seems to be regarded as a subset to dystonia, where neuroinflammation is regarde as important. You already take D3 so that covers inflammaton. But there is another stge to inflammation; resolving inflammation. Omega-3 fatty acide in fish oil supply these, amd might help with dystonia   https://dystoniarecoveryprogram.com/diagnosis-dystonia-what-to-do-next/ They will take weeks to have an effect.  These supplements -D3, Mg, Zn, omega-3s may work in some pts, the trouble is they do nto command the interest of most researchers - no IP to cash in. I regard that as hopefull - they might work !!

Best wishes, Peter

4 hours ago, stillp said:

Thanks Peter. I'm told I don't have dystonia, just(!) a dystonic tremor.

Pete

    Googel "dystonic tremor b12 folate b6 homocystiene."     B12, folate deficiency is very common and leads to rise in toxic serum homocysteine. I started on the three B vitamins recently, and also take 6g betaine powder daily. It converts toxic homocysteine to valuable glutathione, a key anti-oxidant.  Peter