Bolt's Failed Pickle Experiment (Lectins) :(

[Bolt_Upright]

First off, for those who don't know me, I have NOT been diagnosed with PD. I was diagnosed with REM Sleep Behavior Disorder back in April 21, which the experts say will lead to PD or something worse. When I was diagnosed I did have some other odd symptoms. Mild balance issues, Seborrheic dermatitis on my face, left shoulder so sore I had to use a mouse right handed, tension in my neck, random involuntary muscle movements, and a sore left leg. I joined this group very soon after being diagnosed and have been working on stopping my progression since then. This page shows what I am doing currently: rbd-pd-protocols.blogspot.c...

Okay, 2.5 years in and I am doing pretty well. No more balance issues, no more Seborrheic dermatitis, my left shoulder and leg are much better. I am back to being left handed. The random jerks are diminished greatly. My neck is still tense, but better than it was. It used to feel hard to hold up my big head.

My REM Sleep Behavior Disorder was also much improved. I went from originally having 2 or 3 fairly extreme episodes a week, falling out of bed, hitting walls, throwing pillows, to gradually getting down to about 1 mild episode every 10 days to 2 weeks. I have not hit a wall or thrown anything or fallen out of bed for over a year.

A big part of my success, I think, was going gluten free and lectin free (as much as you can go lectin free). Dr. Paul Mason - 'How lectins impact your health - from obesity to autoimmune disease' youtube.com/watch?v=mjQZCCi...(Not working as expected?)

Bolt's Failed Pickle Experiment: So you know how when things are going well, you think that you can take a chance and things might continue to go well? My diet is pretty restricted, cutting out gluten and lectins, and I saw something about fermenting destroying lectins and how fermented pickles are a GREAT source of probiotics. So I thought... if I could find fermented pickles, even though cucumbers are nightshade vegetables and chock full of lectins, I should be okay.

Before adding fermented pickles to my diet I did a lot of research. I posted about it here: Some people think Lectins might cause PD, some people think Gundry is a Quack. This great article has plenty of evidence for both sides healthunlocked.com/cure-par...

So I went and bought a jar of Bubbies Fermented Pickles! From what I read you should have 2 pickles a day, so that is what I did! 2 pickles a day for about a week! I felt great, and my poop got better (per the Bristol chart).

The Experiment Failed. I have had 4 RBD episodes in the last 8 nights. 2 of the episodes were not bad, but in one I was trying to kick a gun out of somebodies hand in a car. And last night's was the worst. I was driving along a highway and saw a man on a motorcycle had stopped on the side of the road and kicked a falcon so I tried to honk my horn. I kept pushing the horn with my thumb but it did not make any sound and then my wife woke me up. I was pressing my cat (normally, for safety, he does not sleep with us). Thank God the cat is fine.

So... I seem to be back to square one on the RBD. I guess I flooded my body with lectins for a week. Or maybe this was caused by the clocks changing, which coincided, but I think it was the pickles. I read all I could to figure out if the pickles would be okay. There is not as much info out there on lectins are you might think. Some articles said fermentation destroys all the lectins, some say it reduces the lectins, Gundry said fermented pickles were better than regular pickles.

I am just sharing this because, being early days, I feel like a canary in a coalmine. Maybe somebody will find this info useful. I am back on my pre-pickle protocols. Hopefully my sleep will be back to "not too bad" soon.

[beehive23]

excellent! well written.....i have been fermenting my own kimchi, pickles, onions, garlic, kombucha and soda pop for years to no avail, except i still eat/drink the stuff every day as i developed the taste for it and it keeps my gut in order,. cheers....

[Smittybear7]

How do you know which supplements to take and how much! Thanks for sharing.

[Bolt_Upright in reply to Smittybear7]

That is a good question. I have scattered posts about the different things I have added and removed. Posts in HU and in my blog. I should have a page on everything I take and why.

This is my stack: rbd-pd-protocols.blogspot.c... Ask me about anything and I will write up why I take it.

[LeharLover62]

Very interesting experiment. (However, note that cucumber is not a nightshade.) Hope your sleep is better now!

[Bolt_Upright in reply to LeharLover62]

Thanks! I will dig into this.

[PDFree in reply to Bolt_Upright]

No, cucumbers aren’t nightshades!

[LindaP50]

Worth a try, right?! Hope you get a good night sleep without crazy dreams.

[MarionP]

Now I know I must be missing something maybe there's a clearer way of explaining what your experience was from beginning to end. Anytime you have a significant change for the positive coinciding in some consistent or systematic way, or appearing so, I'm interested in an intrigued because it deserves following up and following through. Significant valuable information is sometimes created in this way. So I had a very brief closer look at lectins.

Here:

hsph.harvard.edu/nutritions...

Help me put the pieces together, what am I missing? Whatever combination reduced your REM behavior disorder, I sure would restart it.

[Bolt_Upright in reply to MarionP]

Thanks MarionP. It is hard to tell exactly what was working for me. Actually, a lot of my improvements remain. It is just the RBD that has been worse the last couple of weeks.

This is my stack of protocols: rbd-pd-protocols.blogspot.c... . I was still following this when I did my fermented pickle experiment. I am still following it. I had another RBD episode last night, so I am not out of the woods on that yet.

One thing I did 6 months after getting diagnosed with RBD (diagnosed in April 2021) was retire and reduce stress. There is a chance that de-stressing was the key to my improved sleep and everything else is moot. I don't think that is the case, but who knows.

[Isthistheone]

Hi bolt. I suffered from a shoulder condition diagnosed as adhesive capsulitis or frozen shoulder. I woke up with it one morning no apparent cause. It was very painful and lasted several months. Frozen shoulder can be a precursor for PD. Get checked.I

[Bolt_Upright in reply to Isthistheone]

My shoulder is one of the reasons I am in this group. That and my REM Sleep Behavior Disorder. I have been evaluated by a neurologist to not have PD (yet). That was 2 years ago. I don't plan on ever getting evaluated for PD again.

I follow the Schrodinger's cat strategy. As long as I don't open the box, the cat is alive

[Isthistheone]

Bolt I have always been a competitive swimmer and probably in the top 2-3%. At the time I was doing 2,000 yards 3 - 4 times weekly. My times were a respectable 35 minutes or less. My bout with frozen shoulder hit me suddenly and completely by surprise. I couldn't lift my left arm any higher than my hip and that short distance hurt like hell. I continued swimming to loosen up my shoulder muscles that were completely locked up. It was very painful so I got a 2nd opinion. I needed to make sure I wasn't going to permanently injure myself. BOLT, it took me almost a year for me to heal. Less than 2 years later I was diagnosed with parkinson's. PD tremor I first noticed on my left side. It took 4-5 years before I noticed any tremor on my right side. Other precursors included severe obstructive sleep apnea and anosmia or sense of smell. I tried multiple CPAPs and got nothing. That was 20 +/- years ago. My insurance company would not pay for a CPAP if I wasn't

40% compliant. I had two sleep studies, both confirmed my chronic severe OSA. I stopped breathing 186 times +/-

I completely lost my sense of smell for at least 25 - 30 years!! That's a long time. BOLT, my sense of smell returned during the TASIGNA TRIAL that I participated in. That trial was six years ago and my sense of smell is not 100%, more like 50%++. I really believe TASIGNA is a winner for PD. BIG PHARMA WON'T ALLOW IT !!

Good luck BOLT and thank you for your interesting posts

[Bolt_Upright in reply to Isthistheone]

For others: Tasigna = Nilotinib.

[SilentEchoes]

Your post has been in the back of my mind and then I found this today. Alternative Complement Pathway Activation - Lectins. You might want to do a deep dive on this. nature.com/articles/s41582-...

[Bolt_Upright in reply to SilentEchoes]

Thanks! It looks like hard reading. I will dig into it.

[SilentEchoes in reply to Bolt_Upright]

Complement is part of the innate immune system. Chronic activation of the compliment system (autoimmunity) could be a factor in your neurological symptoms and lectin intolerance.I strongly believe that neurodegenerative diseases are autoimmune diseases - neuroimmune. They are inflammatory and should be treated holistically like cancer.

SE

[Bolt_Upright in reply to SilentEchoes]

Yes, I believe PD, at least for some portion of PwP, is autoimmune. I think a lot of autoimmune is viral in cause and attention should be given to things that can lower virus activity. I drink Yakult because it has Cassei Shiroto (I am sure I spelled that wrong) which has been shown to lower EBV titers.