Rob Stehlin
Forum Replies Created
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Has anyone been able to control RBD events and dream content with anything other than drugs? I have developed a diet that uses simple foods that have virtually eliminated my RBD events and has changed my dream content from violent to non-violent.
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As we all are looking for root causes of PD, we can see there are many ways to get to a point where we can be diagnosed. If you have not completed my survey, please do as I look at the oral microbiome as a potential cause. The survey takes 5 min to complete and I hope to share the information with the group once I get 300 to take the survey. I am at 150 and looking for more with PD to complete it.
https://whyrbd.com/root-canal-survey/
Thanks – Rob Diagnosed with iRBD 2019
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I am working with one of the lead researchers in this area at the University of Florida – Dr Fang. She has an affordable process that uses an iphone and AI to evaluate the retina of the eye. The technology is very promising.
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pdbill – i am with you and do the same to manage my iRBD, I just take it a bit further and regulate my lectins (gluten is a lectin) the proteins extend into veggies and dairy – not just grains. You can learn more and try it out but using the Dr Gundry diet. I have been using it for a year with great success. For anyone out there diagnosed with PD or Pre-PD, I always ask everyone to participate in my survey as I search for the real truth in PD. If you have taken the survey thank you so much as the information has been amazing. if not just click here SURVEY (takes 5 min)
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I say yes. I have been able to regulate the frequency and intensity of my iRBD with diet. I eliminated gluten, lectins, sugars and dairy. By doing so, if have reduced my iRBD by as much as 80%. Current research connects frequency and intensity if iRBD with phenoconversion. I am concentrating my research in this area and always looking to share.
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I was able to identify the early symptoms 2.5 years ago and confirmed to have iRBD via a sleep study. I recall the first signs being approx 4years ago when I jumped out of bed in my sleep. Most issues other than iRBD are minor autonomic and loss of most my smell. I have been able to just about eliminate iRBD motor events with diet and supplements. I am also researching as to the actual cause of the misfolded proteins and need the help of this community to find out. I understand the agricultural connection but there could be another variable that is common throughout the community and could be working against us and the toxins we have accumulated over our lives. For those of you that have completed my survey – THANK YOU – the data is quite helpful and quite informative. If you have not completed my online survey regarding oral health please do at this link.
Please note, I do not share this data with anyone. (I will share on this site once I get enough surveys – currently I have 110 responses and would like 300) I am a citizen scientist trying to prove the experts wrong and that there is a definable cause to PD and there are interventions we can do to stop or slow down the progression of PD. I have no grants and fund all this myself. The solutions lie among us, and it is up to us to uncover just what they are. Please join me in really finding out what causes PD so we can stop its progression going forward. I also have a website called whyrbd.com to help those with the disorder. Very heavy on research papers. We can do this…….
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Beth, Adam and Mary – do you have any root canals, teeth extracted or suffer from low level abscesses or infections associated with your teeth?
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I just want to thank those that have taken my survey – you all are making a HUGE IMPACT. Please share with others with PD. We are going to make a difference.
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I have been working this and have exact question -what could be the root cause or the starting point of PD and have found a high probability in dysbiotic oral microbiome. To help me on this, it would appreciate if everyone with PD could answer the following questions: Have you over had a tooth abscess, tooth extraction or root canal and if so, was it before or after your diagnosis. I have a survey on my whyRBD.com website. It would be much appreciated if everyone with PD would take the short survey. I will share results with everyone who participates in the next month or two. I have iRBD, I have pre-PD, I have oral microbiome issues. I have gut dysbiosis. Together we can solve this puzzle if we just work together. I sure hope this forum does not try to block me from asking my fellow sufferers to compete my survey. CLICK FOR SURVEY
Rob
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Jean – I am working on just what might be the cause of PD in the majority of those with the disorder. I will keep everyone updated on our findings. You can help by taking our survey I have posted on this tread. The solution will be discovered by those of us who suffer from this disorder.
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I have one – oral health. If you have PD, please complete a survey I have come up with to prove or disprove the idea oral health issues could be the root cause of PD and Pre-PD. Very short but hugely important
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Lyn, have you been tested for toxins? Are you currently diagnoiosed with PD or Pre-PD? If you were diagnoised with PD how long after you were diagnoised with RBD? Have you had your gut sequenced?
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I would like to ask everyone on this theard one question: Have you been tested for toxins? Chemical, Organic Acid, Mold, Pesticides, Heavy Metals, Mercury etc? We are all talking about possible exposure and symptoms, but without knowing levels in body currently or prior, we are unableto determine root cause. I have been diagnoised with iRBD and multiple other symptoms of Pre-Parkinson’s and researching the root cause of these conditions that are precursors to PD. There is a connection, but the data is not in the research. Researchers are not looking at a symptom / toxin corrolation. I am working on a survey that will help us collect the data needed to start to make the connections everyone is discussing. If you have not been tested go to Great Plains Labs and get tested. They have multiple test and not always cheap but our health and life depends on knowing the cause of our disease. The goal of my research is not just to find the connection between toxins and PD, but therapies that can stop the progression and restore the body back to homeostasis.
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Todd – you can get a SCFA test done at Great Plains Lab. I use them for all my testing. Taking Butyric Acid does not answer why and is probably why few see any results. Detoxing and restoring the gut microbiome back to where it produces SCFA’s is what we need to do. Just a question – do you have body odor? If you do not, it is a sure indicator you have low butyrate.
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Beth – Interesting, definately could be cause of Vit B12 defeciency. Did or have you had any other test maybe for SCFA (short chain fatty acids), toxins, organic acids, heavy metals, or pestisides? Did you have iRBD (REM Sleep Behavior Disorder) prior to PD diagnosis or after? There is always a “why” to everything, we just have to keep asking and keep searching. My doctor never asked to run one test once I was diagnoised with pre-parkinson’s. Every test I have done, was under my instructions to my doctor. My doctor was even suprised what I was able to uncover as a possible “why”. The more we learn from “why” the more we can share with others who have pre-parkinson’s and in their quest to stop the progression. Thanks for sharing
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Russ – I still keep asking what killed the gut microbiome stopping the production of butyrate. This is the “WHY”I am searching for. I am searching the connection between my gut dysbiosis and my toxicology test. The gut dysbiosis is the key to pre-parkinson’s. It is the dysbiosis that allows the transfer of mis folded proteins or toxinis to enter the ENS and then the CNS via the vagal nerve.
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Toni,
Here are my recommendations: Toxic Chemicals, Organic Acids, Mold – Great Plains Labratories (you can find online, you can pay cash, you just need an RX from you doctor – I even think they have teledocs that can help. Gut Microbiome sequencing. I have used 4 Biome, Viome, American Gut Project & Sun Genomics American should be the best but they are taking over 7 months to process because of Covid. Sun and Biome second best.
I was also diagnoised with mild central apnea but not an issue. Also I have a long distance runner and I have found a lot or research that says endurance running could be beneficial to neurons and brain chemicals. Like I said, don’t sweat the running until you run all the other test to see what is out of balance. In the next week or so, I will be sharing all on my project website whyRBD.com Hopefully this will help others find testing that could start to find the “why” behind our disorder. I have not found one research paper that evaluated the above mentioned test with prodromal symptoms. I think it is the biggest form of malpractice possible – not in the clinical setting and not in the research setting is anyone connecting the dots: Gut dysbiosis – toxin levels. I sure hope someone proves me wrong.
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Ingrid, I have been doing the same, but I have restricted my lectins because rescent research has confirmed the gut brain connection and the vagal nerve is stimulated by lectins as proven the the transport of paraquat from ENS to mid brain or the lack there of when a patient has undergone a vagalotamy. It has helped my iRBD which is just prodromal PD, so I am sure it would work in diagnoised PD. Best is to follow Dr Gundry diet. Definately working for me. I eat mostly plans and fish. Besides reducing or eliminating lectins (I pressure cook lectin containing roots and tuber and eat raw cruciferous vegetables) I also watch the oxilate levels to keep my joints working well. I log how my joints feel daily.
What is apparent is we all have exposure to enviromental toxins. What I would like to know for my research is how many in this chain has been tested for toxic chemicals, organic acids, heavy metals, SCFA, glyphosate, gut biome sequencing, and iRBD.
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Toni – don’t sweat it. If that was the case, we would see a much larger number of marathoners with Parkinson’s. I am an endurance runner and have prodromol PD, but do not have any science to connect it to my passion and love for running. I do though have connections that could have me in my current situation and I would like to hear from you and Mary Beth on this.
First, I was diagnoised with prodromal PD via sleep study and confirmation I have iRBD about 9 months ago. Has anyone been diagnoised with iRBD (REM Sleep Behavior Disorder)? Has anyone been tested for toxic chemicals in urine? Has anyone had their gut microbiome sequenced? Has anyone been tested for organic acids, heavy metals, glyphosate and SCFA (short chain fatty acids)?
Once I was diagnoised and given orders to go home and wait as they had no clue why I was suffering from RBD and inevitable PD, I got to work. In every test above I have extreamly high markers in different areas with some organic acids being 5 times over normal levels. I have extreamly high levels of some specific neurotoxins. I have gut dysbiosis – my good bugs in my belly are low and my bad bugs are high. I have little to no butyrate (SCFA) which is critical for the tight junctions in my gut (I have leaky gut). It is even the reason we stink (I sweat but have no body odor) None of the above test were ordered by my doctor nor does any study currently published compare patients with PD or prodromal PD and the above test. I find it to be the crazyist situation possible.
I am in the development of my own therapy. I have successfully been able to reduce the intensity of my dreams by at least 75% while reducing the frequency by 25% (improving each month). I have done all of this by diet alone – little to no lectins. My next phase is to correct the gut dysbiosis and this will be done with probiotics matched with my gut sequence. Plus I run, fast, sauna, and exercise.
I would like to know if anyone else is having any success with diet, fasting or exercise. I am always willing to share my resutls and resources. I will be share everything on my upcoming website whyrbd.com
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Besides reducing violent acting out during sleep, I have been able to change the content ot my dreams from violence / action to non-violent with diet and no drugs.
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I developed a diet that has turned off my iRBD and allows for normal rested sleep every day.
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Beth, I really to not buy into the notion that athletics has a negative impact or a cause. PD is more likely a combination of variables that knocks the body out of homeostasis. We just have to find the variables and correct for them. Most all the current research looks a single variables and never a combination of variables that could start the cascade of PD.
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Beth so sad to hear MJFF would tell you Parkinson’s is the result of old age. I ask one question – how old was MJ Fox when he contracted PD? Not old. PD is the combination of multiple factors that when combined create the perfect storm. This explains why not everyone comes down with PD if they have one symptom or the other. Not every old person has PD so it must be a another variable that is causing the body damage. I am working as fast as possible to see what interventions can be taken to help others stop the progressive damage before it manifest into dementia and motor issues.
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Jean – I am working on just what might be the cause of PD in the majority of those with the disorder. I will keep everyone updated on our findings. You can help by taking our survey I have posted on this tread. The solution will be discovered by those of us who suffer from this disorder.