A very interesting interview with Dr Jonathan Sackner-Bernstein on the Parkinsons Education Podcast. He has a trial going at the moment where he uses a L Tyrosine inhibitor (Called RB190, if I recall correctly ) to treat PD. RB190 has already been approved by the FDA for other treatment.
youtube.com/live/6GZRSkXhXf...
Parkinsons Disease Education Podcast
Somehow I have signed up for his emails.
I definitely think in earlier stages excess dopamine, via exogenous route Ldopa medication, is the worse we can do for ourselves. I felt my brain was being flooded with excess dopamine so I stopped all medication to help my body clear out the excess and provide my cells the opportunity to do their job, clearance. I also take high dose melatonin at night, on occasion (480 mg) as this too will assist our mitochondria with clearance. I feel so much better. but, i'm also early stages. I had a skin biopsy - 3 punches cervical, thigh and ankle - 2 of them came back positive for phosphorylated alpha syn. But only in the ankle and thigh, not in cervical. I do not believe it has gone to my brain. I do think in early stages there is an opportunity to stop 100% the progression, but it's not by imploding our brains with extra dopamine that will have the opposite effect.
BeedieBird Do you have motor symptoms? My PD got diagnosed this month only with one arm tremor at age 44 .I am lost ,can't figure out where to start from to delay the progression. Just like you said I don't want to go on medication like levadopa because I believe it does more harm to your brain based on whatever little I have read about PD. What was the skin biopsy for and who referred you for this?
I initially had non-motor symptoms in 2021 - autonomic dysfunction - which I believe were not PD related, though the neurologist thought it was, instead I believe it was due to symptoms of small fiber neuropathy, as was confirmed later by the skin biopsy. About a year or so after the start of autonomic dysfunction, I showed slowness of movement, shuffling of feet, difficulty walking, difficulty getting out of a chair without pushing off, etc. Lots of motor symptoms began to manifest in 2022. These signs were the definitive diagnosis along with the skin biopsy of PD and when they started me on c/l, 600 mg a day! Huge amount of extra dopamine for my brain!
The medication made the symptoms much worse, but I didn't realize this until 3 years later when I tapered myself off and re-evaluated the skin biopsy and delved into the research on a diagnosis of PD via signs of alpha-syn aggregation and began questioning: does the aggregation of alpha syn actually mean one has Parkinson's? How do they know my neurons are dying? How do they know I'm not producing enough dopamine? They don't! It's all inferred. There is no definitive test for Parkinson's. I'm of the belief now that I can stop progression of alpha syn aggregation on my own, a sign my mitochondria is struggling. I do not believe neurons in my brain are dying. I do not believe what they tell me, not anymore.
A neurologist here in WA ordered the skin biopsy. It is not FDA approved so I had to fork out $2500 for the test but I agreed to do so. The skin biopsy came back showing in my legs alpha syn aggregation (not cervical) as well as positive for small fiber neuropathy.
In my research, Post mortem studies of those receiving an early diagnosis of PD, show a relatively very high number did Not in fact have Parkinson's 'in the brain' (loss of neurons). Based on this information and other studies I've read I drew the conclusion that my brain was just fine (except for damage caused by the medication they were giving me) and I needed to work on healing the small fiber neuropathy and provide my mitochondria the tools it needs to clear out gunk from cells during phase separation.
Cardio exercise has been very helpful, probably the most helpful, fast walking - just 20 minutes 4-5 days a week. Getting sun (I go to CA in the winter since there is little to no sun here in WA during that time) for melatonin production to provide my mitochondria the help they need with what is called 'phase separation' Dr Reiter has many research papers written on this as well as Doris Loh.
PD manifests differently for each of us as is evident by the many different forms of symptoms we experience. There is also a lot of overlap of symptoms especially in those of us that are older, I'm 67 yrs old so I've got stuff going on. Other stuff that is not PD related. I think we too often blame PD for every little symptom that crops up instead of it just being a sign of getting older, slower, etc.
To me, the excessive amount of dopamine supplied to our brains via early levodopa medication is far more damaging than the disease process itself. But hey, that's just me. I encourage you to do your own research based on your own symptoms.
couldn't agree more. Medicine has far too many 'catch-all' disease dx's with just palliative care. why?
Thank you for replying. I was absolutely healthy, all I did was dental work 6 months ago and light hand tremors started. My neurologist got Brain MRI done which was normal and then DAT SCAN was done which showed degeneration of neurons in the left part of my substantia nigra which is causing right hand,& arm tremors .Shocking part is it increased so much in just 3 months leading to my feet as well. But I haven't started any medication. Trying excercise and clean diet first but I am scared with the progression.I will look into skin biopsy if I can get it done in UK.
Can a DaTScan directly visualize neuronal loss in the substantia nigra? I don't believe so. A DaTscan uses radiotracer binding to dopamine transporters which provides a visual measure of DAT density. From that, clinicians infer. Are there other factors that influence DAT density? Chronic Stress? Drugs from a dental procedure? I've never had a DaTscan, just the skin biopsy and the good ole in office neuro exam.
I'm so sorry to hear about the dental procedure followed by the onset of tremors and a rapid worsening of symptoms. That has to be scary. Do your due diligence, research for yourself. You have the right mind set. Changing diet, exercise and allowing your body time to heal from the trauma it seems to have experienced during that procedure and whatever drugs they used, on top of the stress you're feeling as you witness a worsening of symptoms and no understanding as to why. I've been there with that fear. It's not fun. Being proactive helps. Asking questions. Research. Get plenty of good quality sleep. The stress will only make it worse.
I hope you will soon see benefit and improvement from the work you seem determined to put in. Good Luck to you!
How does one know whether he has excess dopamine ?
No one knows the correct' amount of dopamine appropriate for a brain any one time. However, our neurons do. In a healthy brain, and I think most of us still have quite a few healthy neurons left, endogenous dopamine is tightly regulated by autoreceptors (for ex: D2 receptors that inhibit too much dopamine). Exogenous L-Dopa bypasses this regulation (rate-limiting tyrosine hydroxylase) saturating receptors and desensitizing them. This causes more 'peaks' versus self-regulating tonic release of dopamine. Hyperexcitability is one of the main symptoms of excess dopamine, to answer your question. Uncontrolled vesicular release will lead to impaired communication between neurons.
Thank you for sharing this. So interesting and hopeful!
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