Robert Li
Forum Replies Created
-
Wow, it is great to hear that some people are having positive responses to mannitol!! What can I say but congratulations on finding something that worked!
It would make sense that the effects of mannitol would be different for different people, because alpha-synuclein (misfolded proteins, the basis of Parkinson’s Disease), can start in different places in the brain and spread from there. The mannitol helps break down misfolded protein clumps.
The main reason I also take vitamin D is to help keep the misfolded protein clumps from spreading. Proper levels of vitamin D helps expel excess manganese (not to be confused with magnesium). Excess manganese has been found to promote the transmission of alpha-synuclein from neuron to neuron: https://pubmed.ncbi.nlm.nih.gov/30862700/ Notably, excess manganese has been implicated in manganese-induced Parkinsonism.
You can’t eliminate manganese from your diet, because it is a necessary nutrient. However, vitamin D can help bring it back under normal bodily regulation. I am checking now with my doctor to see if there is an accurate mail-in “drop of blood” vitamin D test.
-
I take 20 mg melatonin. It doesn’t seem to be that much different from 3 mg in effect, but I have read research that melatonin is neuroprotective: https://site-akiajqrf22xmaqzsiz6q.s3.amazonaws.com/DDI+Website/News/html/Melatonin+-+The+Swiss+Army+Knife+Among+Antioxidants.html
At the beginning I was quite groggy in the morning but no more.
For the kicking part (like reacting to a dream), that is reminiscent of severe restless leg syndrome to me. What helped me was vitamin D for a few months (I’m taking 9,000 IU to keep my serum levels around 60 ng/mL, which sounds like a crazy dose but it’s due to genetics). Notably, people with PD are usually more likely to be vitamin D deficient than the normal population, and vitamin D supplementation has been shown to help with RLS and hyperkinetic diseases. Also what helped were vitamin E 400 IU and beta carotene (sweet potatoes, carrots). The vitamin E has a risk factor which I do not understand, but it has been shown to reduce tics in some people.
-
Thanks for a great thread. I think there is a huge weaknesses in many microbiome studies in terms of learning of how they might help us. The weakness is that they often only change one variable at a time. So for many people, the microbiome ends up resembling how it started.
For instance, when autistic children are given an antibiotic to kill off excess clostridia, the clostridia often come back because the spores can easily survive outside the body until the antibiotic is stopped. Then the spores can not only reinfect, but have less competition from weaker bacteria – the competition is usually what keeps them in most people from being truly pathogenic.
My thought is that attempts at gut biome modification be done with supports even though that’s not how it’s usually done in studies. For example, supplementing with vitamin D. Low vitamin D is much more common in PD than in controls, and is necessary for the immune system to work properly, including helping control the microbiome. Also, NAC and vitamin C are good for helping break down biofilms that pathogenic bacteria use to protect themselves. What do you all think?
-
Hi Robert, I appreciate the sentiment. Although I would trade it for a magic anti-gray hair pill…
Hi John, having survived two debilitating systemic diseases in my lifetime, Chronic Fatigue Syndrome and Cervical Dystonia / Parkinsonism, I have developed a philosophy that I hope might help you in some way:
I will never be able to prove a certain vitamin deficiency caused a symptom. But if I do take a supplement and I feel better, then I was probably deficient. Supplementing therefore will not only make me feel better. it will bring my body closer to normal healing processes.
So, for example, correcting vitamin D deficiency is known to help many people with Restless Legs Syndrome. Will it help mine if mine if mine is caused by the “extremely rare” condition of high blood manganese levels? Luckily, it did help a lot after two months.
Later I found from deep research that vitamin D spurs production of SLC30A10 proteins, which remove excess manganese. Excess manganese near dopamine-producing cells short circuits the cell’s normal signalling mechanism and causes early dopamine release. Then the manganese can oxidize the excess dopamine, turning it into toxic o-quinones, which damages the dopamine system, not to mention rendering that dopamine molecule unavailable for use.
I only know all this after hundreds of hours of research. Luckily an ND told me a year before to supplement my deficient vitamin D levels without this complex explanation. I only did the research to avoid a relapse and I’m totally drug free.
Good luck to you. I hope you find relief soon.
-
Magnesium helped me too. Here are a few other things that you might could try, according to below: calcium, drinking more water during the day, vitamin C and E, CoQ10. NAC can help boost glutathione production in some people. (People with Multiple Sclerosis often take NAC to slow progression of disease.)
Source: Muscle and oxidative stress
Multiple enzymatic and nonenzymatic antioxidant defense systems are present in cells to protect the membranes and other cell organelles from the damaging effects of free radical reactions. These include vitamins C and E, coenzyme Q<sub>10</sub>, superoxide dismutase (SOD), and glutathione peroxidase. Free radicals and other factors like dehydration, electrolyte imbalance, calcium and magnesium deficiency, and low carbohydrate stores may cause muscle cramps.
-
Hello all, if you’re willing to try mannitol to reduce alpha-synuclein aggregation, you might also want to make sure your vitamin C and glutathione levels are optimal. Vitamin C and glutathione can apparently help reduce the production of alpha-synuclein, so you won’t be fighting a losing battle using just mannitol.
From Oligomerization and Membrane-binding Properties of Covalent Adducts Formed by the Interaction of α-Synuclein with the Toxic Dopamine Metabolite 3,4-Dihydroxyphenylacetaldehyde (DOPAL)* – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4646016/
Taking into account the importance of DOPAL oxidation in the formation of aS-DOPAL oligomers, the effect of the antioxidants ascorbic acid, selegiline, melatonin, trans-resveratrol, mannitol, and superoxide dismutase (SOD) (60 units) was evaluated. We found that ascorbic acid and glutathione are capable of inhibiting the oxidation of DOPAL and diminish the DOPAL-stimulated formation of alpha-synuclein dimers and trimers.
Glutathione production by cells in the brain requires the amino acid cysteine, found in meat and sulfur-containing vegetables. It also requires good digestion. I use NAC supplements and digestive enzymes since my digestion is variable.
Beth, can you name the brand of mannitol made in France and available on Amazon? Thank you.
-
Wow, Yakim, that’s a great find. Some people take berberine to help with blood sugar reduction and diabetes.
Berberine, a biochemical in some plant foods, seems a pretty promising way to increase the production of L-dopa by bacteria in the gut. It won’t fix the core reason for PD but can help reduce L-dopa requirements. Here’s another link: https://parkinsonsnewstoday.com/2021/03/02/plant-compound-berberine-brain-function-parkinsons-study/
They discovered that treating animals with berberine, or transplanting faecalis into their gastrointestinal tract could improve both their behavior and brain function. However, these positive effects were stronger when both methods were combined.
I think this also tells us the importance of a good diet (to help normalize gut bacteria), since we are probably not going to get a transplant of the bacteria anytime soon!
-
Friends,
I will credit much of my recovery from dystonia to increasing my vitamin D levels from a historically low <20 ng/L to around 70 ng/L. Vitamin D helps protect the dopamine channels from oxidative stress damage, among other things.
There is a significant amount of University research indicating that adequate vitamin D levels can reduce PD motor symptoms. For example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7267215/, which summarized some highly technical scientific reviews with:
While more research is needed, given the numerous potential benefits and limited risks, vitamin D level assessment in PD patients and supplementation for those with deficiency and insufficiency seems justified.
The goal of taking vitamin D could be to reduce motor symptoms enough to allow reduction in L-dopa dosage, especially if your anxiety is tied in time to your L-dopa and OFF periods.
The connection between L-dopa and anxiety is: L-dopa temporarily increases dopamine. Some of the dopamine is used for motion, and some is converted to adrenaline. This conversion is normal and necessary, but if the dopamine levels vary too much, then so does the adrenaline. The adrenaline can cause you to sweat or raise your heart rate unexpectedly, and put you into fight-or-fight mode, which results in anxiety. Low adrenaline can cause a low-energy anxiety, which feels like dread, for lack of a better description.
-
Hi Ally,
I don’t have PD, I have Parkinsonism and cervical dystonia. After being diagnosed, I realized my father’s disability when he got older was a form of dystonia. I also realized that my grandfather, who hiccuped for a year, had myoclonus dystonia. And we all had postural issues when young.
I’ve had general health genetic testing, but not for specific dystonia genes. Currently I am in remission, which is possible with a small percentage of dystonia patients, but probably less that 5% chance at my age and severity level. So I’ll credit my remission to the fact that genetics rarely determines fate. The article below is just one illustrative of the importance of environment (in this case, the gut biome). So in PD there is hope to reduce symptoms (and probably progression rate). Yeah!
-
Reuben, I totally agree there are many factors to depression. My general approach is to learn as many potential factors and suggestions as I can, and work on what I am able to do in my situation. In my experience, helping depressed people is much harder, because they often have trouble communicating.
Mary, I think Troy has really illustrated how important it is for people to feel some sense of purpose and control in their lives. All of us with chronic illness experience a huge amount of uncertainty about our futures. Sometimes we don’t even have control simple things, like being able to remember what we were going to say. So having a hobby where we can create or do something unique, at our own pace, within the limitations of our changing abilities, can make a big difference.
I had been on SSRIs for more than a decade. And while they gave me my life back at one point, the long term side effects were terrible. Luckily, an ND helped me slowly transition to omega 3s and digestive enzymes / probiotics / support, and they worked equally well, without major side effects. (I had to take a teaspoon a day initially, and omega 3s do thin the blood a bit, which lead to the side effect of red eye lasting for a week, around once a year).
-
Charles, I am sorry about your loss and pain you have suffered in your life. That’s a lot and the PD too. Your posting is a reminder to me that I need to live each day the best I can, and also always work on connections and community while I am able. Thank you for sharing.
-
I forgot to mention, I used the food diary mainly to root out food allergies & sensitivities. If a food triggers any kind of abdominal pain, you can go back and check if it’s a pretty consistent correlation. Allergies and inflammation can drive systemic illnesses, starting by messing up absorption of nutrients.
-
Hi Mary,
I an on the autism spectrum, so I’m not sure if what I experience as depression is the usual way. For me, it’s more like I will lack resilience to normal daily challenges. For instance, if someone says something bad that I would normally barely notice or laugh at, when I’m in a depressed state that same thing might send me into a downward spiral. And then I’ll stop responding.
So if that’s how we define depression to answer this question, I would say there is no food that triggers it. Instead, a lack of healthy nutritional carbohydrates, like fruits and vegetables, for a couple meals will likely put me in that state. So having a couple sweet potatoes ready to eat in the fridge for those kinds of situations when I feel my emotional energies draining is important. Otherwise I will grab some chips and that may help for a brief time, but it’s risky.
The anxiety is a little harder to control. The anxiety can be more related to timing of L-dopa. Note that variability of dopamine due to L-dopa can also cause dyskinesia.
One thing you can do is make sure he has enough vitamin C, for two reasons: to normalize the conversion of dopamine to norepinephrine, and to help break down biofilms made by pathogenic bacteria in the gut. Paradoxically, if his vitamin C was low, initially anxiety may increase before things settle down. But I believe having enough (not megadoses) of vitamin C is important. The other thing is that the “healthier” he is, maybe he can take less L-dopa.
-
Mary, I applaud you for paying attention to your Dad’s mental health. From what I understand, norepinephrine and epinephrine (also called adrenaline) are normal metabolites of dopamine. Variable levels of dopamine will cause variable levels of norepinephrine and epinephrine, and the body’s (proper) response is to go into fight-or-flight mode when levels are high. This means faster heartbeat, increased respiration, etc. So since there’s no provocation, this feels like anxiety. I’m not sure how this info could help, but knowing this is normal, like Clive says, might make him feel better.
Depression can be caused by low serotonin levels. Serotonin production, if I recall correctly, requires short chain fatty acid (SCFA) production in gut, from carbohydrates. In PD, SCFA production by gut bacteria tends to be low. You might try helping him with a healthy diet, eating times, etc., and supplementation with a good quality fish oil or algae oil containing DHA and EPA may help. Also, constipation is bad and if he has, fibrous unprocessed plant foods may help. I find it helps to keep a log of what I ate and map out when I have my downturns in mood that have nothing to do with events. Then I adjust my eating schedule and amount of food I eat. Some meals certainly sustain me better than others.
-
Here’s a dietary intervention link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7306987/
Mediterranean diet intervention alters the gut microbiome in older people reducing frailty and improving health status: the NU-AGE 1-year dietary intervention across five European countries
There is a discussion on SCFA production
-
Phil, there’s a much more detailed review of the PD gut biome here:
Romano, S., Savva, G.M., Bedarf, J.R. Meta-analysis of the Parkinson’s disease gut microbiome suggests alterations linked to intestinal inflammation.
https://www.nature.com/articles/s41531-021-00156-z
I don’t think there’s a specific method to correct the gut biome, but the discussion part of the paper is interesting. They do mention lower intestinal biosynthesis of B12 and lower SCFA (especially butyrate) production in PD. But the gut biomes appear to be diet-dependent. In some papers, modifying the diet to less-processed foods and including a variety of vegetables is a changer of the biome. I think also limiting exposure to toxins in styrofoam, plastics, and coated fast-food wrappings can improve the biome.
-
Hi everyone,
This is my first post so I hope I’m on the right track. I have Parkinsonism, RLS, and dystonia all in partial remission, but I don’t have PD. I have had sleep issues for most of my life. There are a few alternative things that might help.
RLS can be made worse by iron deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5454050/ or low vitamin D https://pubmed.ncbi.nlm.nih.gov/25148866/.
Note that iron deficiency can also increase absorption of manganese (not to be confused with magnesium). Low vitamin D may decrease production of SLC30A10 proteins, which protect cells against high levels of manganese. High levels of manganese can cause dystonia and Parkinsonism by disrupting dopamine production, and oxidizing dopamine. However, usually a third factor is required to create high manganese levels, like liver cirrhosis or exposure to airborne pollution, usually from metalworking sources or train tracks.
One other note, I started taking magnesium to reduce muscle spasms, and got RLS badly for two days, and then it went away. I am still taking magnesium. Also, sweet potato for dinner helps me, both from beta carotene and reducing constipation. It is important to fight constipation and IBS for good sleep.
Also if you have sleep apnea, it can help to sleep on your side (besides have an appliance of some sort).
Stay safe, I hope this helps.
Robert
-
Hi Christine, just a thought… If needing to run to the washroom was your only downside, it could be that your gut biome is unstable. If you find a way to stabilize, then taking mannitol may no longer be an issue. For me, I found that sometimes I could eat fermented foods no problem, and other times it was a big mistake! But now I can eat fermented foods more frequently. I hope you find your way to more good months!
-
Cathy, recent research is showing gut microbiota disturbances due to antibiotics are a common cause of many systemic diseases. Probiotics can help, but not all probiotics can make it through stomach acids. I think there is a lot of research forthcoming this year and next.
-
Mary Beth,
Wildfires contain a small amount of manganese, and industrial / battery fires can contain A LOT. Airborne manganese increases risk of PD. Research of people living near old ferromanganese plants shows increased PD incidence. Most people don’t get PD though because they can detox inhaled manganese quickly enough, but some can’t.
Vitamin D helps detox. However if one has liver cirrhosis, detox of manganese is highly impaired and even normal amounts of manganese in food can raise blood levels from normal (homeostatic) to toxic levels. Also, if the liver is loaded with heavy metals, manganese detox can be impaired.