So... I am over 3.5 years past my diagnosis with REM Sleep Behavior Disorder (RBD). Statistically, at 5 years post RBD diagnosis I think there is a 50% rate of PD, LBD, or MSA. I think at 10 years that goes up to 85%.
So I am at 3.5 years and am doing great (please don't jinx myself). I probably had a 66% chance of still being well at this point, so this is no great accomplishment. I do know a person who developed RBD at the same time as me, and they just got checked into memory care assisted living, but still, the odds are still with me.
The thing is... I'm not just not worse. I am better. My RBD is rare and mild now (please don't jinx myself). I used to throw pillows and fall out of bed. I think about every 10 days to 2 weeks I might say something in my sleep. Maybe yell. rarely do a kick.
But I had other symptoms 3.5 years ago too. I had crusty Seborrheic dermatitis on my face and head. That has been gone for over a year. I used to get lightheaded and have to hold onto things frequently when I stood. Now I just jump up (I was really thin, so that may be what it was). My sore left shoulder that was always sore is just a little sore some of the time. My neck that was always moderately painfully sore is just sometimes moderately sore and usually mildly sore an sometimes I don't notice it. I also seem to be getting smarter (I can spell!), but that may be due to stopping drinking when I got diagnosed with RBD.
The point is, and I hesitate to say this, but I might be doing something right. We won't know if I am doing things right for another 10 years (or sooner if things go south). So I am going to go ahead and make a better effort to document what I am doing and if anybody is stupid enough to take health advice from a high school graduate, well, I will make that most likely bad advice available.
This information might be most useful (or not useful) to people with RBD who have been exposed to EBV and have Hashimoto's. That is the subset I live in.
So I already have my blog, rbd-pd-protocols.blogspot.com/, but it is not organized. I was to corral this information into a structured document.
Sooooooooooooooooooooooo: Chapter 1 - What We Are Attempting to Accomplish
Spitballing from memory:
1: Lower inflammation.
2: Increase brain plasticity.
3: Suppress viral loads, especially EBV.
4: Chelate Iron (from the brain?)
5: Eradicate Desulfovibrio.
6: Eradicate helicobacter pylori.
7: Boost NRF2 (is that a goal or a means to a goal?)
11: Boost NAD production (is that a goal or a means to a goal?)
12: Resolve intestinal permeability issues.
I am missing some things, but it is time to go work on my house. I will be back at this tomorrow.
My high school educated brain thinks I have to do all of these things (and more?) all at once , for a very long time, to have a small chance of success. The odds are that I am wrong.
Suggestions welcome.
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Bolt_Upright
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"But I had other symptoms 3.5 years ago too. I had crusty Seborrheic dermatitis on my face and head. That has been gone for over a year."
That happened to me too.
You write:
" I used to get lightheaded and have to hold onto things frequently when I stood. Now I just jump up (I was really thin, so that may be what it was). "
You may wish to have this checked out by your doctor. It could be postural hypotension.
Two items that I would add to the list are socializaton and exercise.
You had Seborrheic dermatitis on your face before you were diagnosed and the Seborrheic dermatitis went away while the PD stayed?
I do think of things like that. Like my sore shoulder and sore neck improving greatly in the last 3.5 years. I have talked to PwP that had the sore shoulder symptom resolve before the PD diagnosis.
These types of things make me think there are just normal cycles of symptoms as the disease progresses. This is the most likely scenario.
That is why I want to be careful not to encourage people to follow what I am doing. It may be a waste of time and one of the things I do, high dose Nicotinic Acid, may be dangerous.
On the flip side, I don't want to wait 10 more years to find out if I am still okay before I share the details of what I am doing, why I am doing those things, and how I am doing.
Don't define your intelligence by your school years! I read your list and don't comprehend~~it is like a Russian novel to me~! But, I agree with MBAnderson 100%. Since you are doing great....and you sure seem to be....you are doing many things right!! I'd tackle that book too.💞
I've been busy with a few more diagnoses, but I hope to see you all this Thursday~!
Great work Bolt_Upright. I look forward to many more years of your stories and straight shooting analysis😃. Looks to me you are doing something right that’s far sure. I’m sure in 10 years time we will all be on a different pathway, but we got to get there first 😃. We can only be proactive with the information available now to get the best possible personal outcome. Your commentary has prompted me many times to do further subjective research. We have all got to start somewhere. Thank you for that 👍😃
I have been acting up in my dreams for years before I was diagnosed with PD about over 3 years ago. I used to get scared in dreams but it was quite mild and was happening only sometimes. It used to go away for many months and then come back. I didn't know that it is a precursor to PD until my MDS told me. The acting up in dreams was getting worse but now suddenly it got better and I don't get that often. And it is mild such as I am just talking in dreams. Not sure what is impacting it. May be exercise or supplements? You mentioned H. Pylori. How does it impact? I was tested positive for H Pylori before PD diagnosis. I was given antibiotics which didn't help, and then another set of antibiotics. But I couldn't re rest to see if it is eradicated because due to covid , labs stopped performing breath test for it. I never bothered to test again. Does it impact PD or RBD?
Helicobacter pylori (H. pylori) is a bacterium on the luminal surface of the gastric epithelium that induces chronic inflammation of the underlying mucosa (71). It is found to be prevalent in the gastric mucosa of over half of the global human population (50, 72, 73). Ever since the initial observation of a high prevalence of gastric ulcers in addition to the gastrointestinal symptoms which preceded motor manifestations in PD patients, the link between H. pylori infection and the pathogenesis of PD has been extensively explored (51, 74). Stemming from the initial hypothesis of PD's origin within the gastrointestinal tract, the bidirectional interactions between the central and the enteric nervous system (namely, the gut-brain axis) is of particular interest (8). Research has supported the premise that H. pylori may play a role in the development of PD via several pathways. This centers around its involvement in neuronal damage, through the production of neurotoxic bacterial products and the disruption of the BBB. Another possible link is H. pylori's disruption of the intestinal microbiome, leading to altered inflammatory mediators that predispose to PD as part of the brain-gut axis interactions (75, 76).
Increased prevalence of H. pylori infection and higher titers of antibodies to H. pylori are observed among patients with PD compared to healthy controls. Accumulating evidence suggests that H. pylori infection is associated with increased risk of subsequent PD development in the general population. A positive correlation has been reported between worse motor severity and H. pylori seropositivity among patients (51–55). This is speculated to be a result of chronic inflammation exacerbating the neurodegenerative process or due to reduced absorption of anti-parkinsonian medication secondary to H. pylori-related gastroduodenitis. The improvement in clinical status, particularly symptoms of bradykinesia, subsequent to the eradication of H. pylori further supports a significant correlation (50, 53, 56–58).
H. pylori infection has been indicated to trigger neuroinflammation, neurotoxicity, and apoptosis related to the pathogenesis of PD. Chronic inflammation with H. pylori infection is associated with the substantial release of pro-inflammatory cytokines, which may lead to the disruption of the BBB, microglial activation and ultimately, neuronal injury (34, 59, 60). A subset of patients infected with H. pylori have been found to have elevated levels of autoantibodies against proteins essential for normal neurological functions (Nuclear factor 1 A-type (NFIA), Platelet Derived Growth Factor Subunit B (PDGFB), eukaryotic translation initiation factor 4A3 (EIFA3), suggesting a mechanism of molecular mimicry contributing to increased PD motor severity in H. pylori seropositive individuals (77).
One more thing, about testing for things, and remember I have a high school diploma: I don't really believe in testing for most things.
The thing is, to my small brain, if you look it up most tests are at least 5% inaccurate. So that is a 1 in 20 chance the test result is wrong. And then if it is a bacterial type of infection, you are getting a snapshot in time.
My idea, unless I am just 100% sure I could not have had exposure to something, is to just follow protocols to address things as long as those protocols are safe and cheap. That's just me.
I asked Claude.ai how accurate H-Pylori tests were:
H. pylori (Helicobacter pylori) tests have varying levels of accuracy depending on the specific type of test used. Here's a breakdown:
Urea Breath Test (UBT)
Considered the most accurate non-invasive test
Accuracy: 95-98%
Highly sensitive and specific
Detects active infection with minimal false positives or negatives
Stool Antigen Test
Accuracy: 94-96%
Non-invasive
Particularly good for initial diagnosis and checking treatment effectiveness
Slightly less accurate than breath test, but still very reliable
Blood Antibody Test
Accuracy: 80-90%
Less accurate than breath or stool tests
Can indicate past exposure but may not distinguish between current and previous infections
Antibodies can remain in blood long after infection is gone
Endoscopic Biopsy (most invasive)
Considered the gold standard
Accuracy: 95-99%
Allows direct visualization and sampling of stomach tissue
congratulations! It's wonderful in itself but also inspires/affirms just when I need a reminder how much ordinary people can do to heal and care for ourselves. Will research some things on your list. I share your subset, as far as those items go. (Would be interesting to see Venn diagrams of members diagnoses and concerns. I often read things here like the Sebborheic dermatitis or fungal infections of particular toes and think: why, I have that – and then wonder what other overlaps would make this meaningful in terms of my tremor/neuro sx perhaps progressing to Parkinson's, for which there is a family history. )Anyway, I just heard on NPR's morning edition the results of a new study finding yet another kind of brain cell outside the brain--abdominal. (I tried to copy and paste the URL but couldn't ) These are neurons that function like brain cells but in the abdomen where they do things like regulate digestion. For me, there are always chicken and egg questions where gut and brain are concerned given the growing evidence that it's a very busy two-way street...but addressing permeability, dysbiosis, and restoring a damaged biome was life-changing, enabling me to live a manageable life with MCAS (misdiagnosed as crohn's and IBS) and noticeably reducing inflammation like chronic joint and muscle pain and slowing worsening arthritis. In the past year, I went back to my old evil ways and thought I was getting away with it but eventually gut sx, neuropathy and neuro sx returned worse than before. Yes, I am addicted to Cheeze-it...and it was a slippery slope from there, o shame )It's amazing there's so much research available to us all now. so easily. A real gift. She said, changing the subject
My first recollection of shouting out while having a typical RBD nightmare was about June 2017. After that I would occasionally shout and also wake up pulling my night table over. I saw a doctor about it and got diagnosed in April 2021. By this time it was much worse and I was throwing pillows and punching walls and falling out of bed.
ok Bolt_Upright , apart from the fact that DatScan is not a definitive test ,but should be taken together with all the other elements in the diagnosis of PD.
Anyway WE DO NOT HAVE A CURE AND THE CAT IS NOT DEAD, in fact it is still alive and very soon the cure will be there, I am sure.
The fact is that without an objective examination we are exposed to all the wrong indications that are the cause of great disturbances , so in my opinion the less “maybe” there are the better.
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