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  • robert-li

    Member
    February 7, 2022 at 9:41 am in reply to: Did your symptoms change when you had Covid?

    There is a significant amount of research pointing to mitochondrial damage as a root cause of long-term post COVID symptoms (long COVID).  Three years ago I didn’t know what mitochondria were, and my brain would have shut off if someone told me.  But mitochondria are really important in all long-term illness.

    Mitochondria are a part of every cell, and  responsible for many functions of that cell.  For example, they are responsible for “gene transcription”.  Gene transcription means creating proteins (complex chemicals) from snippets of DNA.  In an analogy, if DNA are the blueprints, then mitochondria are the shipyards, and proteins are the ships.  If mitochondria are damaged, then we have trouble building the ships, and our whole body suffers, because we need those ships, especially to fight long-term disease.

    There are many things needed to help keep the mitochondria healthy and functional:

    • Vitamin D, needed for gene transcription.  Vitamin D insufficiency increases COVID risks across the board, including death. Vitamin D can also be produced by exposure to sunlight.  Getting 1.5 hours of sunlight a day can cut risk of getting multiple sclerosis, an immune system disease that causes serious motor control issues, by more than 80%.
    • Proper diet.  For example, including things like broccoli in your diet: https://nourishinghope.com/broccoli-sprouts-and-sulforaphane-benefits-for-autism-and-beyond/
    • Fixing gut/digestion issues, starting with constipation.
    • Avoiding invasive tests, like x-rays and CT scans, if not medically necessary.  These can damage mitochondria.

    Good luck.  It is definitely possible for most people to repair their mitochondria over time.

  • robert-li

    Member
    January 30, 2022 at 4:19 pm in reply to: Do you like puzzles?

    There are a wide variety of printable visual puzzles, like Sudoku, at krazydad.com for free.  Watch out though – for some of the puzzles labeled “easy”, sometimes they take a bit of practice before they are easy.   They are a lot of fun.  I personally like the Cow and Cactus puzzles, when printed in color.

  • robert-li

    Member
    January 17, 2022 at 10:20 am in reply to: Lower limb dystonia (foot inversion) and Parkinson’s

    Hi Fred, I am writing a website just about this subject.  I don’t know much about foot inversion.  However, I have seen it mentioned in passing with respect to too much manganese deposited in the basal ganglia (we’re talking micrograms).  Manganese can come from surgical implants, liver issues, or industrial air pollution exposure years ago, especially if vitamin D levels are low, and is a risk factor for both PD and focal dystonias.  https://dystoniahelp.org

  • robert-li

    Member
    January 13, 2022 at 4:32 pm in reply to: Do you have theories about why you have Parkinsons?

    John,

    You have my deepest respect for following the evidence and working so hard to find what you need. Thanks for sharing your journey, it is helpful for me and I’m sure others to find solutions.

    With respect to heavy metals, they mostly deposit in the bones and tissues after a few months so they are not readily measurable in the blood.  I suggested testing for manganese because it is not really considered a “heavy metal” in the usual sense.  Manganese is a component of almost all foods and needed in the body in miniscule amounts for such things as detoxification of reactive oxygen species.  However, paradoxically, manganese in excess amounts can act like a heavy metal.  So the body has a very complex homeostasis system for manganese.  In some people, such as people with liver cirrhosis, this homeostasis system can be broken.  You will usually, but not always be able to detect this in a manganese red blood cell test.   But this test is rarely done as part of a heavy metal screen.

    Inhaled manganese pollution can bypass the first part of the body’s homeostasis system and travel via the olfactory nerve to the basal ganglia and deposit there.  Not surprisingly, welding is the highest risk common occupation for manganese-induced Parkinsonism and focal dystonias in the most used muscles.  This is because manganese can travel along synaptic pathways to whatever muscle sets you use/coordinate most, and create a local deposit.  Perhaps this could explain Musician’s dystonia?

    Once this damage happens, the most common report is that the damage is permanent.   Chelating agents will not remove much of the manganese in the body and brain, partially because tissue stores tend to be high.  However, I was completely debilitated by dystonia and Parkinsonism two years ago.  Today, I am not at all disabled, although there are certain motions I still can’t do.  I will credit my recovery to a lot of different things, but primarily fixing my vitamin D deficiency and unstable digestion.  These issues muck up the homeostasis mechanisms.  I am planning to write about that on my website, probably in February.   I will also write about the reason that B12 and folate/folinic acid are so important for detox, and very genetics dependent.

    Please, see if your heavy metals screen included an RBC manganese test.  My levels were equivalent to someone with stage 4 liver cirrhosis, nine months after I removed myself from exposure.

     

  • robert-li

    Member
    January 10, 2022 at 7:14 am in reply to: Do you have theories about why you have Parkinsons?

    Hi Christine, the slept little, high stress, brain always going lifestyle sounds familiar.  I don’t have PD, I have dystonia, finger twitching, balance issues, reduced sense of smell, etc.  I got over my constipation with the help of a doctor fixing my gut.  Fixing the constipation has potential to help dopamine production because you need to be able to absorb tyrosine broken down from protein in order to produce dopamine without L-dopa, and sometimes the gut just won’t do it if it’s not working.  I wrote more about dysbiosis here: https://www.dystoniahelp.org/dysbiosis/, if you’re interested.

  • robert-li

    Member
    January 7, 2022 at 11:18 pm in reply to: Do you have theories about why you have Parkinsons?

    Kevin, since you worked in a steel mill, have you ever had your Red Blood Cell manganese (not magnesium) levels checked?  Manganese is a component of most steels, and inhalation of airborne manganese can cause accumulation in 2-4% of individuals.  The RBC manganese test is not perfect for detecting if you have a deposit in the basal ganglia, but it is a quick screening that your general practitioner can do (some hospitals don’t offer the test, but most national labs do).

  • robert-li

    Member
    October 25, 2021 at 7:56 pm in reply to: Anyone have comments on We Have Parkinsons.com

    I looked at the ingredients of Restore Gold and it makes a lot of sense for neuroprotection, gut health, and mercury removal.  So the dystonia or other improvement is not likely to be just placebo effect.  By the way, tyrosine is the natural precursor to L-dopa.

    Thanks for sharing the info.

  • robert-li

    Member
    October 24, 2021 at 6:45 pm in reply to: Do you take melatonin for sleep disturbances?

    Hi Mary,

    Clonazepam enhances the action of GABA neurotransmitters, which we think of as “calming” neurotransmitters.  If Clonazepam is effective for you, you might ask to get your vitamin D levels checked.  Vitamin D deficiency, which is significantly more common in Parkinson’s Disease, can mess up how GABA is released in the brain: https://pubmed.ncbi.nlm.nih.gov/31821883/

    More about vitamin D: https://icwb.com/vitamin-d-levels-what-is-a-healthy-vitamin-d-level

     

  • robert-li

    Member
    October 24, 2021 at 3:10 pm in reply to: Have you been detoxed of heavy metals?

    Mary Beth,

    I have had around 12 rounds of IV calcium EDTA and a round of DMSA.  These are pretty heavy duty chelators and cause risk to the kidneys if there is a lot of redeposit.  So I would not recommend unless there is a sure history of lead, mercury or other exposure.

    My NDs’ much preferred method is to go the slower route – cilantro, chlorella, r-ALA, etc.  You just have to have patience.  Also if one’s body is burdened with heavy metals it is important to take antioxidants for neuroprotection, as I’m sure your father’s NDs have said.  They are probably also trying to make sure the gut is working properly, otherwise the absorption of heavy metals may outweigh the slow detoxification.

    In my case, the detox has done wonders for reducing the “heaviness” feeling of my muscles, and for getting rid of some of the sleep issues.  The sleep issues that it got rid of included the feeling of firecrackers going off in my head, waking me up, and audible hallucinations like someone had just shouted in my ear.  My sense of smell did not improve much, but has much more with mannitol.  In fact, now some cooking smells that I didn’t notice before are now kind of annoying! 🙂

    The important point you got is that heavy metals detox is a very slow process, even with IV.  Improvement is even slower than just the detox process (months, years).  The one thing that most practitioners don’t know is that deficient vitamin D can cause manganese (not magnesium) build-up, because of insufficient production of SLC30A10 transports.  Dysbiosis, poor diet, and inflammatory conditions such as Crohn’s Disease can also cause reduced production of SLC30A10.  The metal manganese, in particular, or in combination with other metals, is a risk factor for both Parkinsonism and Parkinson’s Disease (and likely Alzheimer’s, but I haven’t researched that).  I am currently working with the world’s leading researcher on manganese toxicity to make sure the recent research actually benefits patients, instead of being just academic.

    Good luck to you and thank you for sharing and taking care of your Dad.

  • robert-li

    Member
    October 12, 2021 at 1:28 pm in reply to: Mannitol Updates? Does it even taste sweet?

    Gwendoline, ever since you mentioned that mannitol is used as a diabetic sweetener in baking, I have been thinking about how people with PD could use this as an advantage.

    Cocoa appears to help protect dopamine-producing neurons… https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3575938/  However, sugars in chocolate will feed gut bacteria and mess up the microbiome.  So I’ve been limiting my chocolate intake.

    Now I’m looking for mannitol-sweetened chocolate, but I can’t find any.  I think it was introduced for diabetics, but due to the gassiness issue, did not sell well.  Now other sugar alcohols like maltitol or erythritol  seem to be more common in chocolates.

    Anyone have ideas for a mannitol based chocolate treat?

  • robert-li

    Member
    October 7, 2021 at 12:03 am in reply to: Mannitol Updates? Does it even taste sweet?

    Hi All, Thank you for the responses.  I did some more research and talked with a metals toxicity researcher about it also.

    Mannitol is not a replacement for C/L.  However, it is believed to break down clumps of misfolded proteins called Lewy Bodies that are believed to be the cause of PD.  In that sense, if it is effective, then the need for C/L would be reduced.  That would be huge positive in many ways.

    Mannitol causes gas because it is a “sugar alcohol” that is not fully absorbed.  So some of it is digested by gut bacteria.  This may affect your biome which could be positive or negative depending on the prevalence of various bacteria in your gut.   The only way to know is to try it. In particular, people with PD are often found to be low in butyrate production from gut bacteria.  If this is too technical, just remember that the gas production is normal.  Maybe try smaller doses spread throughout the day, or eat with food?

    A 6 ounce (largish) serving of cauliflower contains roughly 5g mannitol!  This is the recommended dose on my Mannitol, up to 4x per day.  5g is exactly how much I’m taking per day.  Maybe the mannitol content is why cauliflower gives some people gas!  Cauliflower also contains other beneficial substances, so please consider adding these “whole foods” to your diet whenever possible.  Button mushrooms are also very high in mannitol.  Sweet potatoes are much lower in mannitol but has beta carotene and other important antioxidants so I eat one at least every other day.

    Kate, you may want to make sure you have a solid diet with both protein and whole plant foods, and optimal serum vitamin D levels because from my research mannitol is just one part of the picture.

    Good luck to you all.  Progress starts with one step at a time!

  • robert-li

    Member
    February 6, 2022 at 9:48 am in reply to: Lower limb dystonia (foot inversion) and Parkinson’s

    Thank you Fred for the kind comment, it helps motivate me to work on the website, which is a bit daunting.  I will let you know if I find more information about foot inversion!

  • robert-li

    Member
    January 24, 2022 at 7:16 am in reply to: Do you have theories about why you have Parkinsons?

    Impulse control disorders or behavioral addiction reported in Parkinson’s disease include pathological gambling, hypersexuality, compulsive buying and binge eating.

    https://pubmed.ncbi.nlm.nih.gov/22921247/

    Hello Krit Singh Chand, I wanted to share this, which may help you reframe your conclusions and perhaps feel a little more positive, looking forward.

    There are genetic dopamine processing differences (primarily the COMT and DAT genes) that can predispose some of us to addiction, Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorder, unusual sleep patterns, and even atypical response to caffeine.  These dopamine processing differences are not genetic defects, because they can have benefits, such as giving some of us excellent memories, unusual cognitive skills, or decreased need for sleep.

    There is a risk if we have naturally high levels of dopamine.  When dopamine is released, it is more vulnerable to oxidation reactions.  Oxidized dopamine can cause dystonia / pain, and in the long run can damage dopamine producing neurons.

    However, high levels of dopamine itself is not a risk.  The presence of toxins in the basal ganglia combined with dopamine increases the risk.   The most common source of toxins in the basal ganglia may be metal deposits due to exposure to long term industrial / metalworking / train track air pollution.  For more info, please see: https://www.hsph.harvard.edu/news/press-releases/significant-link-found-between-air-pollution-and-neurological-disorders/

    To reduce my air pollution exposure, I have a “True HEPA” filter in every room of my house.   I also have a small air quality monitor (<$100).   Finally, I don’t go out for more than a few minutes without an N95 mask, when http://purpleair.com in my area reads yellow or worse air pollution.  Call me paranoid but at least I can move again!

  • robert-li

    Member
    January 20, 2022 at 9:57 am in reply to: Do you have theories about why you have Parkinsons?

    John, someday people will solve it, but not if they’re financed by the pharmaceutical industry.  I’ve been working with some of the top metals toxicity researchers in the world but it’s going to take a grassroots effort of people like you and me and many others.

    After I found out that I had high manganese, I was shocked to discover that every multimineral supplement has it.  There is no reason to have it supplemented, because there’s enough in food to supply you several times over.  Vegetarians tend to have higher manganese levels due to the higher density in some foods like nuts, spinach, and some legumes.  It’s also speculated that it’s because there’s less iron in the diet.  Iron and manganese compete for the same absorption transports.  Vitamin D helps gene transcription, so it increase the number of transporter proteins in the blood.  In a test tube, vitamin D increased the number of SLC30A10 efflux transports manufactured by cells by a factor of 15 times.  SLC30A10 sit in the inside of cells and slowly remove excess manganese and bring it to the liver.  SLC30A10 can also carry zinc so I am careful about not over-supplementing with zinc, to reduce competition.  SLC30A10 are almost 500 amino acids (protein components) long, so if you have any kind of digestion issues, production may be an issue.

    The other thing you must have to protect your neurons is glutathione.  Glutathione in the brain has to be produced by cells in the brain, although supposedly the liposomal form can pass the blood brain barrier.  Glutathione is composed of only three amino acids, and production is usually limited by genetics, methylation/sulfation cycle issues, or inadequate cysteine from the gut.

  • robert-li

    Member
    January 15, 2022 at 9:43 am in reply to: Do you have theories about why you have Parkinsons?

    Since you were exposed to pesticides, have you been checked for dysbiosis (imbalance of gut bacteria)?  Dysbiosis is a common driver for neurologic disease, and also has to do with immune system and genetics (such as natural vitamin D production rate).

  • robert-li

    Member
    January 15, 2022 at 9:38 am in reply to: Do you have theories about why you have Parkinsons?

    Elizabeth, I’m so sorry to hear how you were treated by the original neurologist!

    It does seem you’ve tracked down many of your likely risk factors for PD, which is hard to do.  They definitely tend to be interrelated and none alone is likely to cause PD or severe systemic disease.  In terms of Factor 4: metabolic, have you found a doctor who can help you with the methylation and sulfation detoxification cycles (B12/folate/etc.), digestion, immune system, and metabolome, especially in regards to your detox genetics (MTHF, Glutathione-S-transferase, etc.)?

    Also, you might find that after you’ve successfully removed some mercury, more of the other heavy metals such as lead and arsenic are more willing to release.  But it is important not to rush heavy metals removal, in order to protect kidneys from excessive redeposit.

    Finally, something that has helped me a lot is to reduce my air pollution exposure using multiple HEPA filters and a cheap PM2.5 sensor ($<100).  There have been recent studies on the influence of PM2.5 on neurologic disease and on death risk and it is quite clear our bodies don’t have a great defense to air pollution when our metabolic issues are high, or we already have heavy metal deposits.

  • robert-li

    Member
    January 15, 2022 at 8:22 am in reply to: Do you have theories about why you have Parkinsons?

    Paulette, there’s definitely multiple genetic factors and I see disabling dystonias on one side of my family line.  However, I got over my disabling dystonia by changing my lifestyle habits including diet, sleep, reducing stress etc.  For example, I take Melatonin both to help me sleep and because it is an antioxidant against manganese-induced damage to dopamine and dopamine circuits: https://www.researchgate.net/publication/263517329_Melatonin_Inhibits_Manganese-Induced_Motor_Dysfunction_and_Neuronal_Loss_in_Mice_Involvement_of_Oxidative_Stress_and_Dopaminergic_Neurodegeneration

    I’ve been trying to write more about these kinds of things on my website but it is turning out to a big challenge!  dystoniahelp.org

  • robert-li

    Member
    January 15, 2022 at 12:04 am in reply to: Do you have theories about why you have Parkinsons?

    John, I think you’re right about several things – the higher risk factors in the high tech industry up to around 2010 include lead in solder and many of the chemicals used for making PC boards.  Lead and mercury not only cause various kinds of damage, they also disrupt the homeostasis of essential metals like manganese.

    In terms of genetic differences, yes there is a lot of evidence.  But there is also good news – many of the genetic differences have workarounds.  They are the genetic differences that predispose us for vitamin D and B12 deficiencies or glutathione S-transferase differences, for example.  Often there are benefits to these differences, such as lower risk of some cancers, etc., that’s why these differences are common instead of one in a million.  But all together they could also increase the risk for PD when we’re exposed to certain toxins.  It’s usually a multi-factor issue and you can’t prove most of it, only plot out the risk factors in your life and eliminate them.

     

     

  • robert-li

    Member
    January 14, 2022 at 11:54 pm in reply to: Do you have theories about why you have Parkinsons?

    John, if you’re taking vitamin D, you might want to consider asking for your iron levels/stores to be checked as well.  Vitamin D tends to increase the number of metal transporters we produce (by allowing RNA transcription), which is good.  However, if iron is low then absorption of manganese may increase because they share the same transporter used for iron absorption from the gut.   Also calcium will increase absorption, so it is good to eat green leafy vegetables and other sources of vitamin K to avoid too high levels of calcium in the blood.

    Other tests you may want to ask for that can be related to motor issues is usually called RBC trace minerals – copper, magnesium, calcium, molybdenum, selenium, zinc, etc. in the red blood cells.  Imbalances of these can trigger motor disorders.  Also, if you ask for a manganese test, make sure the lab order has the test code number.  Otherwise someone along the chain may substitute magnesium for manganese.

  • robert-li

    Member
    November 21, 2021 at 3:34 pm in reply to: Do you have theories about why you have Parkinsons?

    Alan, if taking levadopa helps, then that’s a good sign that at least some of your dopamine-producing cells are working. Levadopa, or L-dopa is normally produced by the body from tyrosine:

    <b>Tyrosine hydroxylase</b> or <b>tyrosine 3-monooxygenase</b> is the enzyme responsible for catalyzing the conversion of the amino acid <small>L</small>-tyrosine to <small>L</small>-3,4-dihydroxyphenylalanine (<small>L</small>-DOPA).<sup id=”cite_ref-pmid8638482_5-0″ class=”reference”>[5]</sup><sup id=”cite_ref-pmid8822146_6-0″ class=”reference”>[6]</sup> It does so using molecular oxygen (O<sub>2</sub>), as well as iron (Fe<sup>2+</sup>) and tetrahydrobiopterin as cofactors.  (Wikipedia)

    If you have dysbiosis, vitamin D deficiency, or iron deficiency, it is much harder for your body to produce L-dopa.  So you might want to look into those.

  • robert-li

    Member
    October 20, 2021 at 3:27 pm in reply to: How long have you known you have Parkinson’s?

    Hello Robert C,

    Since you were diagnosed with Parkinsonism and not Parkinson’s Disease, have you had your vitamin D and erythrocyte manganese levels checked?  These can be involved in both Parkinsonism and true PD, but most neurologists and hospitals are not checking manganese (not to be confused with magnesium) levels.  I got mine checked by an ND but a functional medicine MD would probably do this as well.  Now that I my manganese levels are back in normal range, a lot of my long term issues especially having to do with sleep, bladder, daytime sleepiness, and muscle fatigue are minimal.

    Robert L.

  • robert-li

    Member
    October 11, 2021 at 10:01 am in reply to: Have your urinary patterns changed?

    Mark, melatonin can make you need to pee more… https://www.webmd.com/sleep-disorders/melatonin-dos-donts   That’s not going to make me stop the melatonin!  You could try a different brand, since they’re not exactly the same.  I am currently using NOW brand, which I think is not made from a sheep’s pineal gland (it is vegetarian).

    These are the other things that I do for my sleep:

    • For serotonin production: turkey (for the tryptophan), omega-3 fish oil.  If I am low on omega-3 then I start supplementing, I usually have “too many dreams” for a couple nights.
    • Anti-oxidants: vitamin E, sweet potatoes, squash
    • For keeping biochemicals in balance: vitamin D (need blood testing to get to right levels, and keep it there for a few months)
    • Probiotics: To reduce gut issues especially constipation.  If you can poop before bedtime this is a good thing to do.
    • Also, I try to sleep earlier and get exercise during the day.
    • Reducing my exposure to air pollution.
    • Not eat too much meat at dinner time.

    Now I am getting 5-7 hours/night, which is quite good for me.  I don’t know which of these things really helped, but I don’t really care.  More importantly, I don’t feel very sleepy during the day any more.  I still usually pee a lot at night.

  • robert-li

    Member
    October 7, 2021 at 12:15 am in reply to: How long have you known you have Parkinson’s?

    That is good to hear about the paraquat!  There are many substances that are banned or restricted in the EU and other countries, but barely regulated in the U.S.  So we have to watch out for ourselves.  Exposure to metals dust like living next to an active train track can contribute to PD risk.  Don’t dig in the nearby soils!

  • robert-li

    Member
    October 1, 2021 at 10:25 am in reply to: How long have you known you have Parkinson’s?

    Sadly, occupational use risk of paraquat, a herbicide, can increase Parkinson’s risk by a factor of 11 times, for people with certain (not too uncommon) genetics.  For everyone else, the risk factor increase is closer to 1.5 times.  Knowing that, there is some related research into slowing progression using antioxidants.

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