Where to start?

[Farec]

Hi - I am not taking prescribed medication but feel I need to start. I do take COQ10, Vit B complex and magnesium. I have left arm tremor, stiffness left leg and anxiety . I have read of the benefits of B1 thiamine, Mucuna pruriens and also CBD oil for parkinsons but can’t decide which to try first. I would really appreciate some advice.

[Hidden]

Hi-dose thiamine HCL , for 2 months

[pdslayer in reply to Hidden]

how much would that be per day? I weigh 165lbs? brand suggestions?

[Hidden in reply to pdslayer]

Nothing I recommend replaces your contacting Doc. Costantini and his advice. I say 4g daily 500mg easy swallow capsules from vitacost.com

join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... …

Parkinson's Relief, Questions and Answers

[park_bear]

The thiamine is definitely worth a try. Nothing wrong with mucuna, just beware that it and all other forms of levodopa are for symptomatic relief. Symptomatic relief is a good thing.

[MBAnderson]

All those things are worth a try, but you may want to do one at a time so you can tell which ones have an effect in which ones don't.

[LouThomas]

First, be sure that your CoQ10 is Ubiquinol rather than Ubiquinone. Studies of the latter show no net benefit. There is a good study of the former that shows clear benefit. And understand that the main benefit for Ubiquinol is for slowing progression of the illness - not for symptom relief. There may be a small amount of symptom relief, but that's not the main reason for taking it.

Mucuna lacks a strong dopa decarboxylase inhibitor (like carbidopa) and so a lot of it gets absorbed by the body before reaching the brain. You have to take a lot of it to have much of an effect as a result. That is why adding carbidopa to levodopa (in Sinemet) made that pharmaceutical so much more effective.

For symptom control, all roads lead to levodopa/carbidopa eventually. It can be useful to delay using it if you don't need the symptom relief right now, because delaying may delay the onset of dyskinesias that tend to happen 5-10 years after starting it. One way to delay is to take rasagiline, which kills your MAO-B, eliminating one pathway for breaking down dopamine, and thus allowing the dopamine produced by your remaining dopaminergic neurons to last longer and thus build to higher levels.

But if you need symptom relief beyond that, don't suffer with the symptoms by delaying levodopa therapy, because the ability to stay active that the symptom relief of levodopa/caribidopa provides is itself important to delaying disease progression - especially exercise. And you'll have a better quality of life in the near term, too.

To delay disease progression, besides ubiquinol, we use EGCg from Now (as well as lots of green tea, which we brew by the kettle, both decaffeinated), baicalin powder (from Liftmode), NAC (n-acetyl-l-cysteine), and Longvida curcumin. Again, you won't see dramatic symptom relief from these - they are based on a gamble that they can interfere with the autoimmune feedback loop that drives neuroinflammation.

NAC is an antioxidant, and thus interferes with the ability of cytokines produced by the immune system to trigger neuron death (apoptosis). Curcumin blocks the TLR4 receptors of microglia, which otherwise get triggered by alpha synuclein released from dying neurons. Baicalin blocks the TLR2 receptors of microglia, which otherwise get triggered by neuromelanin released from dying neurons. EGCg works both as an antioxidant and an anti-inflammatory - it has a variety of great effects. And the ubiquinol supports mitochodrial function, which gives your remaining neurons more energy to defend themselves against immune system attacks. So you're trying to cover all phases of the autoimmune feedback loop that goes from dying neurons to released immune system triggers to immune system release of cytokines that attack neurons, killing still-healthy bystander neurons and starting the cycle all over again.

I would add that we are nearly 12 years from diagnosis and seven years from starting levodopa therapy and have yet to see any dyskinesias. And part of the reason for that may be that we have been taking the protective supplements listed above. Of course, I can't prove that, but I think that probably it helps to delay not only the further loss of dopaminergic neurons, but also whatever deterioration feeds the development of dyskinesias.

[GymBag]

OR you could just go visit a Neurologist and take what he prescribes.

[Motherfather]

well i have been taking Q 10 for at least 10 years,, its mostly for the heart it wont help you with pd ,,as for magnesium its more for sore muscles than anything else,the b 1 wont do much its mostly in tablet form,better if you can get an injection for it it might be hard to get..try and start with dopamine not dure were you live but for me i like madopar to many problems with sinemet.see your doctor mucuna,it dont work for me..i still have a bottle of it,regards john,

[LouThomas in reply to Motherfather]

The form of coQ10 you choose is important. For Ubiquinol there is a good study that shows clear benefit for PD progression. For Ubiquinone there are studies that show no significant benefit.

[JohnPepper]

Have you thought of doing exercise to reverse your Pd symptoms? It has been proven that certain types of exercise can reverse symptoms whereas there is no medication that can reverse symptoms. Look at my website reverseparkinsons.net.

[Farec]

Thank you to everyone who has replied to my post. Your advice is much appreciated

[Rosabellazita]

I have right hand tremor only and take no meds. I started Mucuna.

[Donzim]

Suggest Zandopa.