Anyone using these in combination?
I think adding SAM-e to this might work synergistically?
I’m learning other means of increasing dopamine to wean off of Azilect.
“The three amino acids that are most effe... - Cure Parkinson's
“The three amino acids that are most effective at increasing dopamine levels are l-tyrosine, L-dopa, and phenylalanine.”
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You have been in and out of this forum and still going round in circles.
I know Parkinson is a designer disease, but all of us here seem to have found some comfort in one or a few of the many ‘solutions’ that have been offered - pharmaceuticals alone and/or supplements.
Additionally there has been very many post on diet, critical in altering the microbiome and brining it into balance.
Research is not intended to produce indecision. If it does this it is worthless. And I am beginning to believe this is what is happening in your case.
But to the matter at hand, here is something that works - DopaBoost.
amazon.com/gp/product/B004L...
>>>>>
UNIQUE DOPAMINE SUPPORT - Five synergistic ingredients designed to support the body's natural production of dopamine, one of the primary catecholamines.
HIGHLY STANDARDIZED MUCUNA - Mucuna pruriens naturally contains L-DOPA, the metabolic precursor to dopamine. The Mucuna material in DopaBoost is standardized to contain an extremely high 60% L-DOPA.
SYNERGISTIC FORMULA - Additional ingredients include Green Tea Extract standardized to 45%EGCg (epigallocatechin-3-gallate), acetyl L-tyrosine, quercetin and vitamin B6.
You also have to use your gut instincts on this path life has mapped out for you, as there are pros and cons for every treatment for PD: there is no free lunch here.
Ease yourself off of what you do not think helpful, and go with what has been suggested.
Addendum: Do ensure there are Trace Minerals, Magnesium and Lithium in your stack. 🌺
☺️ Combining green tea and Quercitin seems like a sales tactic because although both are great, they have little to do with dopamine production to my knowledge. But, phenylalanine and SAMe and acetylcholine do.
L-Phenylalanine is converted into L-Tyrosine which in turn is converted into L-DOPA in the brain. L-DOPA is then used to make dopamine.
If one is taking CL they should not take L Tyrosine bc the CL reduces the L Tyrosine absorption. I assume that’s bc the CL is overriding the biological process. For as long as possible, supporting biological processes is good instead of overriding them.
CL is known to make RLS worse over time, it “augments” the RLS. Maybe precursors to dopamine production will not?
Why bother with considering precursors to what is ultimately needed? Is it because I am spinning in circles? 🤔 I like to revisit subjects and assumptions. Taking L-Dopa is obvious but I think that it is worth considering supporting instead of bypassing biological processes by taking precursors especially for those of us who need very little.
SAMe is of interest bc it supports methylation which is generally important but in this case important in that it helps make dopamine.
Acetyl choline is also of interest. acetylcholine binds to a specific subtype of nicotinic receptors to make the neurons release dopamine. Taking acetylcholine has been shown to reduce the need for dopamine precursor supplementation or CL.
What’s this lithium you speak of? Sounds dangerous! ☺️. Thank you Casey but I’ve been taking it for a couple years now. I will go Google magnesium now. Cheers!
Not very much into analytics: much rather focus on what works.
DopaBoost and Citicoline work well together.🌹
You say I spin in circles but now you say you don’t like analytics. I love analyzing the why and how of things and assuming that what others do must be best bc it’s popular is really easy but often incorrect.
There is such a thing: “analysis-paralysis”. That’s why some spin in circles💥
You are taking pleasure in insulting me. You say you do not like analytics. I don’t agree. You are analyzing me and not the SUBJECT of the post. Your assumption that I don’t know of magnesium is funny.
I believe Green tea is kind of like a natural form of carbidopa that allows more of the L-Dopa reach the brain, but not as effective as carbidopa.
interesting, thank you. I do not like to assume that products that combine supplements do so for reasons other than creating a new product. The ingredients do not always work synergistically as one would hope.
The Dopa-boost contains EGCG
Synergistic effects of epigallocatechin gallate and l-theanine in nerve repair and regeneration by anti-amyloid damage, promoting metabolism, and nourishing nerve cells
LTheanine (found in green tea) : L-theanine has been historically reported as a relaxing agent, prompting scientific research on its pharmacology. Animal neurochemistrystudies suggest that L-theanine increases brain serotonin, dopamine, GABA levels and has micromolar affinities for AMPA, Kainate and NMDA receptors.
The lithium of topic is low dose lithium orotate. I also tried 5-10mg dose simply because my HTMA showed it was very low years back. I have personally noticed no effect whatsoever but did manage to address the deficiency registered on the tests, and most people test very low. Search HU for lithium orotate - many people seem to respond positively with supplementation and I have read tremendously positive anecdotal testimonies that seem extra beneficial for some.
☺️ Combining green tea and Quercitin seems like a sales tactic because although both are great, they have little to do with dopamine production to my knowledge.
Green tea, like carbidopa, has nothing to do with dopamine production, but everything to do with ensuring that levadopa is converted into dopamine in the brain instead of outside of the brain
pubmed.ncbi.nlm.nih.gov/113...
You may be getting confused again.
Thank you for explaining that green tea (EGCG) acts in the same manner as Carbidopa. Someone already explained that but thank you.
What about the Quercitin? Im “confused again” so please explain what this antioxidant senolytic does in relation to dopamine?
“Getting confused again.” Not knowing of something is not synonymous with being confused. But, I know you take pleasure in seizing the opportunity to belittle me. Will you be resorting to name calling soon or is your dopamine not that low yet to require such a hit? I can see how in insulting and demeaning a person , the insulter can feel elevated and get a dopamine boost. But you could also get a dopamine boost from just sharing worthwhile knowledge.
Another area of my “confusion.” Why would dopamine stimulating whether via agonists or precursors increase RLS?
LA why are you so sensitive? You seem to find hurt where none is intended. Maybe try.....water off the ducks back? No need to slam back.. For the most part, everyone here has good intentions, pleas try and keep that in mind. Thank you
Quercitin is an MAO inhibitor and therefore increases available dopamine. But for RLS, as elaborated upon elsewhere, that’s likely a bad idea.
I'll attempt a brief answer to your direct question. And then offer a thought, along the lines of CaseyInsights about how you might get better results. And then leave this topic alone. I have no interest in causing you distress.
Are you familiar with Harry Potter? There is a scene where he discusses the authenticity of the sword of Griffindor with Griphook the Goblin. They both respond to a question "Its complicated".
But, my understanding is RLS is both a symptom of PD and a separate condition which has nothing to do with PD. If you look at the prescribing information for Pramipexole - both for PD and for RLS the initial dose is 0.125mg. For PD the maximum dose is 4.5mg per day. And it is possible to take the extended release form for PD. For RLS the maximum dose is 0.5mg per day. Particularly in the USA Pramipexole is routinely overprescribed for RLS - sometimes at PD dosages. This is closely related to the development of RLS augmentation. It is worth noting that augmentation does not affect everyone, and is treatable with other medication.
So in looking for a treatment option, if your principal (only?) symptom is RLS (which can manifest as internal tremors elsewhere in the body) and you mistakenly believe it to be PD, then you have a good chance of making it worse. I am not aware that you have explained the clinical signs which caused your neurologist to diagnose PD, only that the diagnosis involved neither Datscan, nor ldopa response, but if that diagnosis is wrong (it wouldn't be the first) then you risk using wholly inappropriate treatment options.
The "thought" - not unrelated to the above answer about RLS. At University as part of my management degree, I studied systems theory (and modelling). The first concept suggested is "optimisation" - you try to find the best solution. This seems obvious , and indeed, it is hard to see what else anyone would do. But optimisation is rejected as a theoretical concept and not a practical option in real world systems, including biological systems, which are hugely complex, and for which there are just too many possible combinations of elements in devising any solution.
So the next system concept is "satisficing". interaction-design.org/lite...
You look at options, and keep looking at combinations of ideas, and till you find a solution which is "just good enough" - and adopt that solution. It may not be the best, but it does the job. And it can be implemented now, instead of 500 years later, when you are still looking for an optimum solution.
That concept is relevant to the "solutions" we look for from this forum, our research, or advice from medical professions. My treatment regime is not perfect. But it provides me with huge relief from symptoms, at a bearable cost in terms of side effects - and is better than getting stressed and panicked - whilst attempting to review every suggestion or possible benefit . I can enjoy life, albeit not as much as if I were truly healthy. But I'm out to dinner with friends shortly, and will be skiing all day tomorrow.
It's not so much that you can't take an interest in lots of different herbs, diets, supplements, regimes, or new / repurposed drugs individually. It's the millions of possible combinations of those treatment options, at millions of different levels and mixes that makes optimisation a bad option, and a bad ambition.
Satisficing is the solution to follow. Also known as the "KISS" concept - which stands for Keep It Simple Stupid! And maybe the simplest solution is to find a good MD and try their solution.
That's me outta here!
I asked why Quercitin. It’s an MAO inhibitor amongst other things. And I asked “ Why would dopamine stimulating whether via agonists or precursors increase RLS?”
Instead of just saying you don’t know, I have to read long dribble about your business degree and methodology and am told “keep simple stupid.”
Regarding KISS, admitting you don’t have an answer is far simpler to all involved than boasting of your background and demeaning my inquiry. But thank you for not calling me names again and only insinuating I’m making this complex because I’m stupid. Funny thing is though, it’s extremely complex.
Summary, you don’t know and you wasted both our time.
Oh so well said!:
“…To search for perfection is all very well / But to look for Heaven / Is to live here in Hell”
👉🏾 Sting - Consider Me Gone
☺️ in other words, you don’t know either.
Given you are so on top of this research game, surely you will find out and tell us all 🌹
I look forward to your report 🌴🍻😎
☺️ sarcasm is a coping skill. I understand Casey, it is hard to just say you don’t have an answer. But the thing is, you don’t have to answer at all.
I know if I find out anything of interest, I can rely on you and your friends to tell me how confused and stupid I am. Cheers!
The comment is well intended, even though sarcastic.
You see, I do benefit from your work. As a case in point I have already marked off Lactobacillus Plantarum as a possible product for my daughter who eats tons of red meat but is low on Iron - dangerously low.
So I do benefit from your research, just wish you could benefit too 🌹
P.S: This is the product I intend to use - may not be able to easily sourced the one in the article you referenced. This one is on Amazon -
amazon.com/Thorne-Research-...
✨🥂✨
Your well intentioned sarcasm is not well received. I’m taking this seriously and trying very hard. You and someone else have repeatedly and intentionally demeaned me and my efforts in far greater proportion than contributing any science or accounts that are related to the subject at hand. It is disrespectful waste of time to all involved. You think, “just take DopaBoost, you’re spinning in circles, etc.”. 🙄. It’s not that simple but you do not see that.
That reminds me of when as a child, not understanding what my parents were doing at their work desk, I thought they just shuffled papers back and forth. They actually had complex situations they were trying to resolve that I was unaware of.
Regarding your daughter, I would seek out info on iron transporter and magnesium malate as a means of getting iron to the brain. But, if she is anemic despite ingesting iron, it could be she is lacking in B12 and or folic acid is disrupting the needed process. Check for MTHFR gene. It can be a bone marrow issue. I’m sorry to have to say it but anemia despite iron ingestion is a sign of multiple myeloma.
Stop with the dismissive personal attacks. You are wasting my time in defending myself so as to not feel humiliated online. And you demean your character more than mine in the process.
Thanks for all the advice ✨🥂✨
Because all I shared is obvious, I doubt I said anything you don’t know. But, I did so because of concern for your daughter. I will defend myself but do not intend reciprocating the way I’m spoken to.
Hi Casey, have your daughter try lactoferrin and also look into potential copper deficiency. Read my latest post on D3 below and have her try raw cod liver oil for natural retinol that'll help make copper more bioavailable and necessary for iron recycling.
healthunlocked.com/cure-par...
Thanks much! I am on it.
The cod liver oil is a bit pricey. May give it a go, but I will likely have the first stab 🌺
I don't use Rositas because it's way too pricey for regular consumption, especially with extra servings per day. I use one of the others mentioned under "BEST" unfermented raw options in the below article I mentioned in my post. Also try ordering from the manufacturer directly than Amazon, I found it's a lot more reasonable that way.
westonaprice.org/health-top...
weston a price is an animal agriculture lobby group ... their fish oil is quite often rancid and really harmful ... beware the fish/snake oil salesmen
If you read the article, it recommends tested 3rd party brands available globally, not a brand for profit nor marketing promotion.
they get kickbacks from what I understand
I highly doubt it examing the hyperlinks. Most people would investigate the mentioned brands for prices/reviews and purchase through the channel of their choice.
Whether they get kickbacks or not, they are indeed a lobby group. In addition to which, I would be very careful with fish oil nowadays given the mercury content in our waters.
You should ask for a recent certificate of analysis from the manufacturers, as I did. Everyone can decide for themselves for the provided useful information. Please let's stay objective rather than resorting to political partisanship.
political? Nothing political in what I am saying. I am merely pointing out that weston a price is a lobby, not exactly a health authority. That is simply the reality if you do your research. And asking the very people who make money on a product to provide safety confirmation is not exactly verifying much ... who verifies the safety? I love mercola, so please don't box me into "political" anything. Look for yourself.
Do you see anything related to lobbying in that CLO article?
why so defensive? I'm not referring to the article, I am referring to what I took lots of time to look into ... take my input or leave it. The group has ulterior motives, and your health is not their main concern. Period. You can either learn from what I am telling you, or you can spend your time defending this source. I do not take their information on face value, what you do with it is up to you. You're welcome.
"why so defensive?" - unfortunately that's only your perception, as I'm simply being polite with my responses.
The presented logic is flawed. Please examine the below related articles from the site - It would be unfair to assume the prolific research authors Dr. Stephanie Seneff from MIT, Dr. Masterjohn, or the CLO writer Sally Fallon and Mary G. Enig, PhD all work for lobbyist agendas while providing valuable research information. I'll stop responding to you as requested.
Sunlight and Vitamin D: They’re Not the Same Thing
westonaprice.org/health-top...
On the Trail of the Elusive X-Factor: A Sixty-Two-Year-Old Mystery Finally Solved
westonaprice.org/health-top...
Not assumptions. And fair is not what I am speaking about. I'm not saying everything they say is false, I am simply saying the origin of the group is not focused on health. Please do not read into my words. My general experience with people who follow WAP is they tend not to like to question anything about them. A shame because that is what science is, one huge question of everything, including what is already known or researched.
Not sure where you live Casey, but be careful with probiotic strains. If you want plantarum 299, you want plantarum 299 (and not for example plantarum PS128 which I am taking). It's like wanting a BMW x5 because it is 4 wheel drive. A BMW Z4 is not the same - even though its a BMW
The product you linked to is currently unavailable and is plantarum DS6595 - not the same at all
This is one product local to me atida.fr/ipsen-pharma-smebi...
Quite aware they are not the same, still hoping that this strain will produce what I think is the critical ingredient - lactic acid.
Thanks for the link, and will try to stay on ‘the straight and narrow path’ for now 🌺
Brains lacking in dopamine cause people to be excessively argumentative. They must engage to “win” even if it means derailing the subject bc the opportunity to “win” and subsequent dopamine hit, is such a motivator that actually contributing an answer becomes irrelevant. And bc admitting one doesn’t know, well, that requires humility. “When you argue and win, your brain floods with different hormones: adrenaline and dopamine, which makes you feel good, dominant, even invincible. It's a the feeling any of us would want to replicate. So the next time we're in a tense situation, we fight again.Feb 28, 2013”
hbr.org/2013/02/break-your-...
I know very little we all know that. Reminding me and everyone is not helpful to anyone but your ego.
And still, my questions remain. Show me a doctor who can delve in to how to reduce PD and RLS symptoms while not worsening either, and I will immediately seek their help. But I have not found such a neurologist. Do you know of one? But it’s so simple?
KISS does not apply to this.
I'm a fan of quercetin but also want to caution that the flavonoid can bind to copper and possibly lead to reduced absorption and Cu deficiency. Be sure to separate the intake.
does this apply to Fisetin as well?
Yes it can but depending on pH, lower for stronger binding. It is best to separate copper ingestion just in case, because so many compounds can block its absorption.
I messaged you the article, but posting here for others -
"Cu is an essential co-factor for several important antioxidants, including superoxide dismutase 1 (SOD1), which is responsible for removing harmful superoxide ions and hydrogen peroxide species from cells. Cu is also an essential component of ceruloplasmin, a ferroxidase which oxidizes reactive ferrous Fe (Fe2+) to its non-toxic ferric form (Fe3+). This prevents production of hydroxyl radicals by ferrous Fe via the Fenton reaction (Winterbourn, 1995). As such, decreases in Cu may lead to less effective removal and increased production of reactive oxygen species (ROS), resulting in increased oxidative stress in AD and in PDD (Bisaglia and Bubacco, 2020). Indeed, increased oxidative stress has been reported widely in PD cases (Dias et al., 2013). SOD1 itself has been shown to display metal deficiency and to misfold in the SN and LC of PD cases (Trist et al., 2017). Additionally, decreased Cu binding to SOD1 has been proposed to contribute directly to build-up of misfolded and dysfunctional SOD1 in PD brains independently of mutations (Trist et al., 2018).
Cu is also an essential component of cytochrome c oxidase, which is responsible for transferring electrons between subunits III and IV of the mitochondrial electron transport chain (ETC). As such, decreased Cu could impair cytochrome c oxidase function and by extension ATP production via the mitochondrial F1F0 ATP synthase (also known as the H+-ATPase or complex V). Mitochondrial dysfunction in PD is widely recognized (Dias et al., 2013) and experiments in a paraquat-exposed mouse model of PD have reported involvement of cytochrome c oxidase in α-synuclein oligomerisation and radical formation (Kumar et al., 2016).
Together these observations suggest that decreased Cu in PD and AD could result in mitochondrial dysfunction, decreased energy production, increased oxidative stress, and perhaps even increased α-synuclein oligomerisation."
LA, consider a multi-magnesium formula. They all act a little differently. The knowledge base is always evolving. Thanks for sharing!
CaseyInsights, PD isn't a designer disease it's a garbage can diagnosis - they throw almost everyone in there with a one size fits all drug protocol. What works for one may not work for another and by now we must all be aware that there is no magic pill and it will take a combination therapy.
I'm guilty of analysis paralysis too - my nervous system is in a fragile state and I might not recover from unintentional self-inflicted harm or negligent medical mistakes. We don't know all the possible drug/supplement interactions. Should we take a precursor or the end product? Do you know if you have resistance or a defective biological pathway? This is the domain of naturopaths, but not everyone can afford to bankroll private healthcare - so we have to DIY our stack based on our own knowledge and beliefs.
We could all use a little more kindness on this forum. "comments disabled - lol"
SE
“PD isn't a designer disease it's a garbage can diagnosis - they throw almost everyone in there with a one size fits all drug protocol.”
Yes!
You are not guilty of analysis paralysis SE. I think you just deep dive beyond what most “get” and you do so with an open mind, philosophical approach and humility.
The “stop spinning in circles, keep it simple stupid, off to ski down a hill” is not only unkind, it’s simplistic which is just silly given that neurology is not.
I’m overly defensive because I’m sick and tired of my inquiring being minimized. Had I “consulted doctor google” years ago when my doctor said not to, I highly likely would not be a member of this group.
I clearly, obviously, have mental health issues. That’s why I vow to not return and end my account but I resurface when I get stronger again and my inquisitiveness exceeds my self preservation. That said, this forum is toxic in many ways but it need not be.
❤️
Determined to direct my OCD and ICD elsewhere this weekend! 😂
I sometimes find it hard to live with the knowledge I have and not feel hopeless and that the task is too daunting. For some reason I have a strong survival drive and so do you or we wouldn't be here. I also want to leave meaningful information behind, who knows how it might impact someone in the future. That being said, we need to take mental health breaks, because without mental wellbeing there is no health. My husband is really good about recognizing when I need a change of scenery. Refuse to apologize for who you are, no one should be made to feel like they are not valued.
Please ppl, be supportive, it costs nothing, otherwise karma will get ya.
No free lunch and no simple solutions. Meaningfully effective solutions likely to be individualistic also, which makes researching incredibly difficult.
Re dopaboost and as a follow on from my first paragraph - I purchased a jar of it (based largely on your recommendation) and it did absolutely nothing for me (i cranked up the dose gradually too). This is consistent with my experience of other mucuna products. I suspect there is something about my digestive system that differs in some relevant way to your wife's. I am glad it works for her but that experience is likely to be far from universal. Still, her success is good intel since someone (maybe many people) will likely be able to replicate it.
Thanks for the feedback.
And sometimes I ask myself, why share, when this stuff is so individualized.
But I have picked up so much from others on this site, so much that I feel quite comfortable in not seeking guidance from a neurologist. So how can I give back other than to relay my experience, hoping some would benefit.
It is good that you tried: individual experimentation is the only way forward! ✨🍻✨
Once I thought I had Parkinson's, I started taking SAMe, L-Tyrosine and DL-phenylalanine. I had learned about them in Dr. Amen's book "Change your Brain, Change your Body", which I first read before I even suspected I had Parkinson's, and then re-read once I realized I had it. After a couple of years I added Mucuna. I was up to about 640 mg of L-Dopa per dose from the Mucuna, but I wasn't able to have the finger dexterity that others on Health Unlocked experienced, so I finally started on Sinemet.
I had much improved finger dexterity with the Sinemet, but was experiencing a lot of nausea. I originally thought I could take a smaller dose of Sinemet and then supplement with a small amount of Mucuna, but the nausea meant this wasn't a good option for me. When I started Sinemet, due to the nausea, I stopped taking the Mucuna, L-Tyrosine and DL-phenylalanine. Eventually I even got some extra carbidopa to address the nausea.
I am currently taking 1.25 of Sinement 25/100 and .25 of carbidopa 25 every dose. I still take SAMe 3 times a day. I believe it helps with my mood.
Thank you for sharing your experience and your sequence. That’s very helpful to me. I’m on Azilect but for complicated reasons want to wean off. taking the approach you initially did might be enough for me. I like Dr. Amen.
The SAMe can be good for depression. It helps with methylation.
You might want to consider adding acetylcholine
Book
I take Citicoline (CDP Choline) three times a day, with my Sinemet, since some studies have shown that you need less L-Dopa when taken with Citicoline.
you know your stuff! Thank you again for sharing your process. I edited above to explain that I am hoping to try to do as you started
Start with just one 200mg SAM-e in the morning, and avoid taking it after 3PM to start for a few months. The effect may be very subtle initially but it can take several months to enjoy the benefit for some, often quicker for others. It can contribute to insomnia if taken late. A lot of people also notice more positive benefits at a lower dose around 200mg than at a higher dose, so start slow and steady. I've seen studies with PWP up to 800mg (editing to 2400mg based on the 2016 PD trial) per day, but that may affect some negatively depending on individual methylation state, and it could also cause dependency in the long term that requires careful tapering down.
I’m revisiting the subject of dopamine precursors and things that work with said precursors because of my RLS. The PD meds make RLS worse.
So, I’m quite stuck. continuing on this path of making RLS worse is going very poorly. I’m going back to reacquaint myself with the biological process of how the dopamine is made in hopes that somehow there is a way of getting the dopamine needed to counteract PD that won’t make RLS worse.
Macuna Pruriens and CL makes RLS worse. Dopamine agonists make RLS worse. MAOB inhibitors have not been documented to make RLS worse but based on my experience I believe they do and why would they not given that both agonists and MP and CL do.
So now what are my options? My doctor wanted to prescribe an agonist despite knowing it will make PD worse.
Should've, could've - this can be maddening and I suffer from it myself especially when I'm not methylating well and ruminate. I try to make mental effort to deviate myself from the thought train whenever the danger surfaces.
In the meanwhile, I know you're waiting on some of your shipment but if you have some pure quality spirulina in your cupboard, try taking it to see if it helps your RLS. It can work a lot better than resorting to iron supplementation for RLS - a bad idea.
We commented simultaneously. So below is relevant but not in sequence.
I definitely do not want to supplement with iron without at least getting my iron levels checked. It would be such a relief though if my blood levels of iron are low as that is an easy fix compared to other scenarios. I have read though that in RLS, you can have sufficient blood levels but it’s not reaching the brain. There is a transporter (name escaping me) that is downregulated in RLS. Supposedly, magnesium malate is the specific magnesium to help get that iron in to the brain.
Given that excess iron in the brain is common in PD, it is odd that a lack of iron in the brain is a cause of RLS seeing as RLS puts you at a greater risk of PD. I think that maybe then it’s not that RLS puts you at a greater risk of PD directly but that what they both have in common, SIBO are a shared cause. Although methane SIBO (constipation) like found in PWP is not the kind of SIBO associated with RLS.
It sure would be nice if I could just “stop spinning in circles” and be a good girl who falls in line and takes the standard DopaBoost but my situation is more complex than that unfortunately.
So, my PD symptoms (while on Azilect) is almost non existent now. But as my PD symptoms recently reduced my RLS has escalated seemingly in proportion. It’s like a seesaw of symptoms. Isn’t that odd? This is why I have thought that if the Pd dopamine meds make RLS worse and my PD is doing better (extreme lifestyle interventions preceded lessened PD) then maybe easing off of Azilect would be a could like term solution.
Medical Keto (true keto diet) is therapeutic for epilepsy and to some extent PD. I therefore think it would likely help reduce RLS which is also due in part to Brain over excitability.
That's the one of the crux of the PD issue - dysfunctional iron metabolism with impaired regulation of iron in the brain leading to the accumulation of iron in the substantia nigra near the basal ganglia region, with unwaning oxidative stress and different amount of distribution of iron to the rest of the brain with compromised homeostasis of iron transporting in and out of cells.
As I've messaged you before, dysfunctional copper metabolism may also contribute to the dysfunctional iron, since they're dependent.
Understood. But why then is RLS associated with PD when the iron issue is quite opposite?
Regarding copper metabolism, that can’t be addressed without zinc (I might be confused on that) but increased zinc is associated with RLS.
“Zinc has not been previously been investigated in RLS. Here we show, for the first time, that zinc is increased in RLS patients compared to control subjects. We also verify the previously known increased prevalence of BTBD9 at risk gene alleles in our human RLS population.”
ncbi.nlm.nih.gov/pmc/articl...
In some respects, RLS is the opposite of PD so having both is complex. But both are at least in part due to overexcitability like in epilepsy.
It's because excess zinc supplementation can cause biological copper deficiency, so if you supplement zinc out of balance while ceruloplasmin is depressed, the situation will only get worse. Iron and copper are both involved in intricate balance of various metabolic processes, and that's why I was advising you try spirulina since it's a natural source of iron and copper that may be more beneficial than excess iron supplementation that can be inflammatory.
Thank you for patiently re-explaining that to me. So in RLS, the excess zinc is indicative of reduced copper. And copper, being involved in many of the same processes as iron, therefore plays a crucial role in RLS. That helps explain how imperative having the right proportion of zinc to copper is as you explained to me before. I’m starting to “get it.”
But, Spirulina is known to be contaminated. Do you have a safe source? Do you take it? My uncle who developed ALS took it prior to ALS (just correlating, not blaming)
Not necessarily reduced copper in the tissue - because you can be copper toxic (past vegans, etc) while bioavailable copper deficient that help in the formation of red blood cells among other crucial biological processes. It's a very complicated subject, but it's somewhat similar to b6 toxicity in analogy because either toxic or deficient, your PLP enzymes not working will contribute to many of the same symptoms, and in case of copper, its copper-dependent enzymes.
We've discussed spirulina in the past, and yes it's getting tougher to find pure sources since it could be tainted with heavy metals and BMAA associated with ALS. The last purchase I made was Hawaii Sprulina by Nutrex years ago, but I'm also suspicious of it despite the claims and certificate of analysis because of perpetually increasing ocean pollution. I was suggesting you take it as an emergency if you happen to have a pure source (most health nuts do), but if not, then try what I recommended to you through PM in balance with zinc.
L_A, BMAA is a cyanogen.
Hi Rescuema, it's a pleasure to hear from you again.🤚😊
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Here in Italy my mum used to scook me cow's liver… she said it contained a lot of iron and all the minerals. I don't know if it's true, but liver with onions is a very good typical dish and I always cook it once a month.
😊😊😊
For thoughts… a walk observing things around you will fix everything and bring your mind back into the right temporal context i.e. the “now”. maybe .😀
Greetings from Italy.
Gio
Saffron today’s photo 17 Friday, February 2023😱
Hi Dear Gio, yes indeed a good pastured organic liver from Italy would be absolutely ideal for consumption with correct ratios of iron to copper along with other biological cofactors. Unfortunately, the rest of the world is not so lucky with tainted liver with accumulated toxins, and I've read even a source of organic grass-fed liver was recently tested with no copper content since the soil is depleted of it, meaning it won't be as ideal as what you're used to and may contribute to bioavailable copper imbalance.
I see your beautiful saffron crocus! Spring seems earlier for you than where I am where it's still cold, wet, and grey. Great to hear from you my friend!
I understand. 😏
Thanks for all the good advice. 🙏
I'm sure it will soon be spring with you too and what was beautiful will be even more beautiful.
Gio
Crocus Sativum = Saffron
Gio, I notice that you appreciate a gentle and nuanced approach. I always appreciate that.
thank you Little_apple , hope you are better than before. 😏
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I like to think that although everyone here is different and should be accepted as they are, we are all similar.
So there is no all right or all wrong In each of us and this helps.
It's like a field of different flowers, if you want we are all beautiful.
Allowing everyone to be as they want to be is the power to give life.
You can see it in children's games, Where objects come to life.
Greetings from Italy.
Gio
Poppies, daisies, an artificially created effect with mixed seeds.
Coincidentally I stopped eating grass fed beef liver recently after learning that due to soil depletion, the intended nutrients are likely not there anyways. But then I did not supplement with copper to compensate. Maybe that has contributed to my recently worsened RLS. This is such a fascinating and complex web. Living close to the earth as we evolved to should be a way of facilitating homeostasis but when the earth has been disrupted to such a degree it’s no longer the definite solution.
Yes.. especially here in the states, and remember glyphosate chelates copper.
oh…good point making GMO and nonorganic grains especially problematic and therefore grain (including corn) fed meat even Turkey and chicken.
This conversation and my RLS reading has reminded me of Dr. Sacklers argument that excess dopamine is toxic to dopamine neurons. In the case of RLS being made worse by increasing dopamine, that makes sense to me. The more dopamine is supplemented the RLS augments to need more and more dopamine. Why? Because the increased dopamine is over taxing the receptors and neurons and instead of nurturing them, pushing them to greater dysfunction or death. I want to ask him.
youtube.com/watch?v=k703Shl...
It all comes down to "balance" of many opposing forces. When the balance tips, that's when you're in trouble.
I’ve been messaged info further validating my theory that Azilect is augmenting my RLS and ways of substantiating this. I am going to learn more about that. And he said Azilect affects D1 receptors which can worsen RLS.
“Hi Little-apple,I just wanted to ask if you've experienced any Impulse Control issues on Azilect?There have been a few cases, involving gambling, overspending on azilect.ICD is associated with worsening of RLS (augmentation). Although Azilect isn't mentioned in any research papers as causing worsening of RLS, that doesn't mean it doesn't happen. As azilect affects the D3 receptors, it makes sense that the D1 receptors may also become over excited and cause worsening of RLS.If you have noticed any compulsive behaviour, like over eating or spendingbon shopping, it would make logical sense that the risk of augmentation would be increased.If it rings any bells, you could report to your neurologist and become a new case study showing a link between the two conditions and azilect being another drug that causes worsening of RLS. I hope you can work out the best meds that will help the PD but not worsen the RLS.”
…Azilect affects D3 receptors which means it could affect D1 receptors making RLS worse. …..interesting!
Response 2
Very interesting. Yes you can paste that reply.As azilect clearly causes ICD, it is just logical that it is worsening RLS because the studies on augmentation link the 2 conditions.I found a few research articles linking azilect to ICD even when the patient had not been on the obvious culprits like Pramipexole or Ropinirole.I
ncbi.nlm.nih.gov/pmc/articl...
ICD is a sign of RLS augmentation and it is a known side effect of PD meds including Azilect.
This and other good info was messaged to me
ICD and RLS are interrelated because they're both the product of changes in dopamine function also responsible for reward processing. Azilect, Levodopa, nutritional/enzymatic deficiencies, and anything that contributes to neurotransmitter imbalance can be contributors. I'm not aware of any scientific reference that indicates Azilect affects D3 or other dopamine receptors directly, but its impact on dopamine levels could eventually affect the receptor functions indirectly. I see the side effect of impulse control on this forum rather frequently.
So the Azilect (and other PD meds) can eventually screw up the dopamine function to the point of causing RLS and or ICD. But, in the case of Azilect anyways, I don’t think it’s reduction in number of dopamine neurons or I as an example, would have greater PD symptoms and I do not. I have less. So, is it the dopamine receptors they were pushed too hard (like with agonists) or could it be dopamine toxicity and that would explain some evidence of ICD.
If I can’t figure this out and approach my neuro with it, I’m up a creek. I need a better neuro for sure but based on my experience with myself and my Dad, not optimistic this neuro exists. I think an inquisitive functional medicine neurologist is my best bet.
Meanwhile….ease of MAOB inhibitor? Tyrosine and MP will cause the same problem but maybe to a lesser extent so I can slow my getting worse.
So, this sucks. Just venting.
No one understands fully why Azilect worsens RLS in some people as this is not a universal side effect. Azilect blocks the breakdown of dopamine, so while Azilect could help RLS for those who're deficient in dopamine for better sleep-wake cycle regulation, it could possibly also increase dopamine levels too much in certain individuals to exacerbate the RLS symptoms at night while you're trying to fall asleep when the dopamine level must decline for sleep onset. I highly recommend against stressful or stimulating activities later in the day while you try to wind down for sleep. Do yoga, deep breathing, or practice meditation to promote relaxation with all your might. Try to stay away from computer hours before bedtime.
the complexity of the info you give me nudges me to dig in and learn which I need! I have a lot to digest and figure out! I’m not understanding Copper yet so I can’t even ask questions. But, I will do my homework!
I think I might resume Citicoline (or try Huperzine A?) to ease off of Azilect. Maybe this logic is flawed but if it reduces need for CL, can it reduce Azilect dependency? I’m still in shock that my trajectory has drifted to a different course. PD now with RLS?!?! So, no adding dopamine or I worsen RLS. 😠
My pity party will abate but I’m hitting the ground running on this. Course correct, head up, carry on!!
That's right! Don't dwell in useless pity for too long. If it is indeed due to augmentation, the recovery from stopping the agonist will be a slow process, but you're not doomed.
"Course correct, head up, carry on!!"
👍
reply part deux:
“I've seen studies with PWP up to 800mg per day, but that may affect some negatively, and it could also cause dependency in the long-term.”
Dependency in the long term bc, why? It down regulates the natural process?
I do not think I’m making a situation difficult by over analyzing it. I think my situation is more difficult bc I did not analyze it enough in the first place. I had RLS in my 30’s. It left and then PD symptoms appeared. Now I have both.
Unique circumstances require a unique approach.
I want to shelve this , take a break and relax a bit but that’s literally impossible when RLS is ruining my ability to sleep and therefore making any semblance of normalcy impossible.
Something odd to note; my PD symptoms are less than they have been since starting Azilect. I go hours with no PD symptoms. It’s like RLS has ramped up and PD has downregulated. Which highlights my need to get my Ferritin levels checked.
SAM-e is a universal methyl donor. If your body is spoon-fed and offloaded from the tremendous biological tasks for a while, you can see how it'll get lazy and react badly to sudden cold turkey of incoming goods. You just need to taper down slowly, and it won't cause any permanent damage.
since Citicoline reduces need for L-dopa, I wonder if it could help me ease off Azilect? I have RLS so I won’t be able to take any dopaminergic drugs without making RLS worse. I’ve already “augmented” with just Azilect.
You're either short or over the need for dopamine which may be worsening your RLS depending on the tipping point at night. What works for others may not affect you the same, but citicoline may be worth a try and I recall reading testimonials by others that it does help RLS.
It should not be this much work to try to figure out now to treat and slow down PD. Supplements don't have enough studies to figure out what helps, a what dose and for how long you can take the supplement as well as interaction with other supplements. It is all up to the consumer to figure it out. What a headache, but I try to take what I learn on HU and reasearch it a bit more. At least I am spending less on supplements when I was just trying to reduce symptoms without really knowing HWP diagnosis. Good Luck.
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