This is a TMI (Too Much Information) type of post, but might be helpful so here goes: When I got diagnosed with REM Sleep Behavior Disorder on Apr 2nd (I have not been diagnosed with PD but do have a stiff left shoulder and arm [hoping it is mouse arm], a sore left leg, and have had balance issues [one time, when admittedly drunk, I fell like a tree that had been cut down]) and started researching PD, the first thing that grabbed me was "fix the microbiome!". My first thought was finding a good FMT donor in my family.
Then I found a study from 2020 showing the Specific Carbohydrate Diet (SCD), by itself, could normalize the microbiome (if you still have all the needed flora): pubmed.ncbi.nlm.nih.gov/332...
I did not start with SCD. I started with IF (intermittent fasting, which I had happened to start a year earlier to lose weight when I got AFIB (AtrialFibulation) [AFIB is gone]) and then Wahls version if Keto, and then I found that study and layered SCD on top. This combination was not really working with me and I was kind of weak and constipated.
So I dropped the keto (I'd been reading it is not really sustainable) and dropped the Wahls (except for my coconut milk smoothie every day, so I do get some ketones) and kept the IF and SCD.
I've also added things that should be good for the microbiome and leaky gut: Zeolite Pure, Butyric Acid, Curcumin, Niacin, Resistant Starch, Royal Jelly, Propylis.
Okay, here comes the TMI. Cover your eyes: Not to jinx myself, but for well over a week my microbiome has been incredible! Better than it has ever been in my entire life. I used to need a minimum of 45 minutes for number 2, would not be fully evacuated, and would spend half that time wiping and wiping and wiping (I went through a LOT of TP). Now I am in and out in 10 minutes (still have to check the news on the phone), complete evacuation, and I don't really even need TP (Toilet Paper) (80% of the time I would be good even if I skipped wiping). I did not even know this world existed.
Okay, that is my story. Fixing microbiome accomplished!
Other changes of late: Subjective changes: My shoulder, arm, and leg feel better. They do not hurt ALL the time. I can lift things with my left arm normally. Not subjective: I had to dig into my garbage can outside Sunday night. It smelled so bad I could barely stand it. That is different for me. My sense of smell is pretty bad, but then I have not been giving it the "digging through summer garbage" test recently.
I point all of this out because in one of the FMT (Fecal Microbiota Transplant) reports I read they performed FMT on some PwP to fix their constipation issues and their motor symptoms improved also.
So... how is your microbiome? Do you think fixing your microbiome would help with PD symptoms, or maybe your microbiome has ALWAYS been fantastic and I'm wandering around in idiotville (I have a summer place there).
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These subjects are technical enough on their own, so not fixing some of your acronyms in your posts in real-time makes your post not so understandable to dumbs like me. If you have written your post for everyone, not just intellectuals only, then don't assume we know the acronyms
I have missed seeing your textsWhen I first started this journey (4years) your texts helped me so much
Thank you
😊
I'm bringing this here so as not to derail the other thread. In a different thread you replied to someone by saying:"True I don't have a lab analysis, but I am in a bunch of FMT groups and one of the main methods of grading donors is how their poo looks on the Bristol Scale. I've gone from 5/6 to 3/4 (although I may be getting some 2 in there, something to watch out for)..."
Wouldn't the, erm, 'quality' of the poo be more an indicator of transit time, fiber content, and proper hydration? Which is not saying that biome has no impact, mind you.
I can see why one wouldn't want a donor with poor quality poo, and why that could be associated with a poor biome. However (I think) it could be a mistake to equate well-formed poo with a healthy biome (since the way poo looks is affected by so many factors besides biome).
- Resolved constipation does not equal a healthy microbiome. Agreed.
- But, not being able to resolve the constipation would be evidence that you have not fixed the microbiome.
With that logic, I believe I have passed through a toll station that needed to be passed through.
I should add, not to jinx myself, that this is more than resolved constipation. This is such a dramatic change from the last 50 years of poo. It is truly amazingly different.
One more thing: park_bear resolved their constipation using different methods, and I believe their PD is stable. Maybe not progressing? Could fixing the gut be an important first step?
It certainly seems logical to me (for whatever that is worth). Over and over I'm seeing comments that early symptoms -- especially constipation! -- precede diagnosis by many years, even 10-20 years. What if people had the knowledge and foresight to address those symptoms when they first began? Surely it is possible that the progression would have been affected; to what degree is unknown (but I'm in Camp Glass is Half Full).
I have found similar positive changes after being on an adapted Wahl’s protocol with IF (intermittent fasting). The digestive changes alone were worth the change. I also have found my neuropathy problems have improved and most definitely my energy is far more even through the day. I had to watch weight loss. I am wondering what your SCD stands for and what generally is your diet? Thanks
SCD is the Specific Carbohydrate Diet. It has a lot in common with Wahls (lots of overlap).
The SCD was developed by Elaine Gottschall whose daughter had IBS and the surgeons wanted to start taking out colon. She dug into researching and came up with the SCD. The SCD is based on only eating foods with molecules that are easy to digest. Molecules that are hard to digest sit in your gut and feed bad bacteria. A lot of people have put IBS in remission with this diet. breakingtheviciouscycle.inf...
What really got my attention (I started on Wahls Paleo Plus) was this study from 2020 "The Specific Carbohydrate Diet and Diet Modification as Induction Therapy for Pediatric Crohn’s Disease: A Randomized Diet Controlled Trial" ncbi.nlm.nih.gov/pmc/articl... that showed you could normalize a microbiome with the SCD if you still had the needed flora.
And there is this from 2018 "Effect of the Specific Carbohydrate Diet on the Microbiome of a Primary Sclerosing Cholangitis and Ulcerative Colitis Patient" pubmed.ncbi.nlm.nih.gov/296...
I only have a high school degree, but this resonated with me. The logic behind it makes sense.
Mannitol is on the "no" list but I still have my 2 level teaspoons a day.
Mannitol is what gives me the toilet going ease and quality you describe. Like you I was 'oh THIS is how it should be'!I recently stopped mannitol for 3 months to see if it really was making a difference (had been on it for over 2 years) and indeed it was! Back on it now and ease/quality/regularity is back.
So I'd say you're doing the right thing keeping it in the stack.
BTW the other noticeable impact is that without mannitol the kids laugh at me for always falling asleep in front of the TV. But now I'm back on it that's stopped again.
I, high school graduate Bolt, believe these are all helpful, but I can't be sure of any of them. I have posts on all of them. Make sure you look at the cautionary post on Niagen.
Now this is an interesting study on Zeolite. As far as heavy metal detox, powdered Zeolite Clinoptilolite seems to be the best. healthunlocked.com/cure-par....
Effects of Resistant Starch on Symptoms, Fecal Markers and Gut Microbiota in Parkinson’s Disease – The RESISTA-PD Trial healthunlocked.com/cure-par...
Royal Jelly and Propylis
More Bee Stuff: Synergistic action of propolis with levodopa in the management of Parkinsonism in Drosophila melanogaster - 2020 healthunlocked.com/cure-par...
Thanks FawnLily. I appreciate you sharing your experience. Maybe it is like a lot of people say we are dealing with a multitude of diseases with common symptoms.
Anyway, it is good to keep in mind not all PwP have the intestinal issues. Thank you.
My microbiome is messed up it always has been(had colitis on and off since age 15) it’s gotten so bad that I’m constantly constipated! I think I’m due for an FMT. I don’t think there’s anyone here (I am in Canada) that does it for Parkinson’s patients. Maybe it’ll be coming down the line…
I'm sure you have heard of the Specific Carbohydrate Diet but I will mention it anyway. Designed for IBS. I have a lot about it a few replies above this one.
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