Using supplements to treat young onset Parkinson’s from LRRK2 mutation

As some of you know who frequent my blog, I was recently diagnosed with young onset Parkinson’s. I also recently learned that I have a genetic mutation called LRRK2 which is responsible for my disease. Over the past few months I have been working with an amazing naturopathic team (Thank you Dr.Samantha Evans and Laurie Mischley!) and doing my own research and I am actually getting better and feel like my brain is starting to heal! I want to share what I have been doing and also find a way to connect with anything else that is helping other folks, especially with LRRK2. I’ll get back to the animals soon!

My natural parkinson’s protocol for YOPD 8 (LRRK2 mutation) – click on the names for Amazon links

  • Sinemet 100/25 Usually 1/2 pill 3-4 times a day. This is the standard drug for Parkinson’s disease. I’m on a very low dose! I also will vary the dose I take based on feeling into my body. And yes my naturopath who manages my medication supports me doing this. I know my Sinemet helps my symptoms but it is really everything below that is healing me and keeping me on this low dose. That being said my naturopath firmly believes that Sinemet be started early and that it will actually slow progression by keeping the dopamine receptors from dying. It should only be reduced when the body’s need for it is less.
  • Niacin 500mg 2 capsules three a day . Niacin completely got rid of the severe anxiety component of my disease and decreased my fatigue symptoms significantly. Niacin helps with blood flow to your brain and helps preserve mitochondrial function. It converts to NAD (Nicotinamide adenine dinucleotide) which is showing promise for neurodegerative diseases.You need to take real niacin, not flush free and you will go through flushes. See The Niacin Flush I started with 500mg a day and slowly moved up to 3g a day. I rarely flush now and when I do it’s mild. There was a recent study on niacin and its potential benefit for genetic parkinson’s to slow disease progression. People with forms of early onset PD may benefit from Niacin.
    I followed Bill W. (who started AA)’s protocol.
  • Lion’s Mane 3g (6 pills) a day . I saw significant improvement in my fine motor control and bradykinesis with this dose. Lower dose didn’t help me. Lion’s mane contains NGF which helps repair nerves. This mushroom is pretty amazing. See Anti Stress Lion’s Mane Mushroom and Parkinson’s Disease. It also enhances cognitive ability and lowers stress. The dose I take sometimes causes mild itching.
  • Glutathione – I can’t say enough about glutathione. I get immediate improvement from the injections. We know that PD patients have reduced glutathione. We know it improves symptoms. Us LRRK2 folks don’t make it properly. It is a powerful antioxidant and reduces oxidative stress. I take a liposomal product orally which is now thought to work better than intranasal. To have it work orally you need a liposomal product. I use the LivOn labs packets as air and light cause a rapid loss of potency. Here’s a couple pubmed studies
    Glutathione and Parkinson’s disease: is this the elephant in the room?
    Reduced intravenous glutathione in the treatment of early Parkinson’s disease
  • Citicoline 1g a day has been shown to improve the effectiveness of l-dopa drugs like Sinamet. See Citicoline in the treatment of Parkinson’s disease . It seems to have some ability to repair the brain as well. My Sinemet doses last a long time, I think this is why.
  • Fish Oil 2g a day – helps increase dopamine in your brain and reduce inflammation, need I say more. Make sure to use a product that is tested for heavy metals and high in Omega 3s. Many people with Parkinson’s are low in stomach acid and don’t digest the capsules correctly in the stomach so use a liquid product. My naturopath is convinced that fish oil will prevent dyskinesis from Sinemet and allow you to take the drug long term.See A Simple Intervention in Parkinson Disease?
  • Vit D/K2 – vitamin D may slow down Parkinson’s progression. Most of us are deficient in it anyway. See Study shows vitamin might be beneficial for parkinson patients with certain genetic makeups
  • Vit B multi – Sinemet can make you deficient in B vits so I take this to compensate.
  • Ginkgo is an antioxidant which increases dopamine and blood flow in your brain. I take a supplement with gotu kola, ginkgo and Siberian ginseng, 2 pills a day. Gotu kola also increases dopamine production.
  • Magnesium with calcium and vitamin C This supplement almost guarantees that I will sleep well! Magnesium lowers stress and relaxes muscles. If you have issues with constipation it also helps there. If I forget my magnesium my sleep is off. Sleep is what let’s us heal!
  • Coenzyme Q10. My naturopath has found that this with fish oil and glutathione are the supplements that slow progression. I take 400mg a day. Chew the tablets as long as you can to get buccal absorption.
  • Lithium I take 40mg a day. We have misfolding of proteins in our body and brain. This can be corrected when we sleep but only if we have enough lithium. In addition lithium helps dystonia symptoms. If you live in the pacific northwest there is no natural lithium in our soil, possibly a reason our rate of neurologic diseases is higher than other places.
  • Nicotine – I use the lozenges (usually 2-8g a day) because I had to many skin reactions to the patches. This drug is deserving of a whole article which I will write soon. However it is the only thing we have that we know without a doubt reduces your risk of PD by 50% and slows progression. It is highly neuroprotective to dopaminergic neurons and makes your cells release dopamine. I also have a theory that it can reverse the damage caused by a neonicotinoid pesticide I was exposed to in my 20s. Of course it is also highly addictive.

This protocol is working well for me. If you have something to add that has helped you please let me know!

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