Hi everyone,
My brother (79) was diagnosed with Lewy Body two years ago. Cognitively just speaking to him he seems ok but confusion shows in other ways, eg working with numbers. (was an international tax attorney.) Physically though he’s struggling more even though he goes to the gym with personal trainer two times a week and a special class once a week and walks other days, but now struggles to do a mile and he leans forward so much I’m afraid he’s going to fall. Thankfully his 78 year old wife is a strong ball of fire playing pickleball 10 hours a week, lifts weights etc. Aside from telling him to exercise and take melatonin I think that’s all the doctor has to offer. He already takes a BP med and statin. I did a search on this site and some studies are posted but honestly I don’t have the brain power to get much from them. I did see in one that with Parkinson’s one can have Lewy body and I’m wondering if possibly Parkinson’s would be the better diagnosis given the physical aspect is giving him the most trouble at least at this point. All this just to ask if anyone has a family member or friend who has this and has been helped by something that the doctors are not yet aware of. I’ve thought about possibly peptides or stem cells? He’s got a great attitude but yesterday I could tell was feeling a bit defeated. I dread what’s to come and just want to see if there’s anyone here who would know what might possibly slow this down. Thank you.
3 Likes
adssx
#2
Hi,
Sorry to hear this. What do you mean by “diagnosed with Lewy Body”? Lewy body dementia (LBD)?
Parkinson’s disease (PD) and LBD are closely related. Many researchers consider that they’re the same disease that presents different symptoms first depending on the individuals. You can see them at two sides of the same coin: the motor symptoms and the non-motor ones. (Other researchers think that they’re different diseases; no one knows for sure.)
As of today, there’s no treatment, but there might be ways to slow down the decline and improve quality of life.
One person to follow is https://lauriemischley.com/ . She has an app (desktop or mobile phone) for patients to track their symptoms over time: https://www.pro-pd-symptoms.com
Which BP med is he taking? Beta-blockers and diuretics aren’t great. He might benefit from switching to telmisartan 80 mg. If not enough, add amlodipine.
Which statin? There’s controversy around statins and PD and LBD. Some people think they protect. Others think they make things worse. In doubt, I would switch to ezetimibe (another cholesterol-lowering drug that doesn’t have these issues).
Other interventions he might be interested in: Parkinson's disease - #429 by adssx
Usual disclaimer: this is not medical advice, I’m not a doctor, do your own research and talk to a medical professional, etc.
(poke @John_Hemming)
2 Likes
It does look this is another facet of aberrant mRNA splicing caused by inefficient mitochondria to which the interventions that benefit in this area may help. Those are improving mitochondria inherently, propping up the mitochondria and a number of interventions which help in the acetyl-CoA pathway.
Oh Antoine I checked one of the links and see you are a young man diagnosed with Parkinson’s. I’m so sorry. Life just sucks sometimes. You seem brilliant though and able to scour and make sense of all the studies/research being done. I so hope newer effective treatments will come along soon for you and others. I have heard it can take 17 years for research to get to the practitioners office so you are way ahead of the game.
Yes I meant LBD and have heard it and Parkinson’s fall under the same umbrella but given those with Parkinson’s don’t go into dementia, or maybe some do but the few I know about haven’t, I wouldn’t think they are the exact disease process.
Not sure the exact meds he takes but will ask, and thank you so much for your response and resources- I will check out the lady and read the thread here.
All my very best to you Antoine, I will follow and keep up on how you’re doing. Thanks again.
1 Like
Thanks for your reply. I have “chronic fatigue syndrome” which is also considered to be some sort of mitochondrial problem and my other brother has what I’d call not fibromyalgia but rather a myofacial issue where he’s achy and has what he calls “low biorhymic” days. I would wonder if it’s some genetic thing but my parents had great health good energy both sides long living relatives, so who knows……
adssx
#6
Thanks for your kind words.
People with PD also get dementia, just later. And they get it in the same form as LBD, it’s just then called “Parkinson’s disease dementia”. (Almost everyone gets dementia at some point, 40% of people at age 90 have dementia: Incidence of Dementia After Age 90 in a Multiracial Cohort - PMC )
1 Like
Beth
#7
I’m here to give you an n=1
My mom was brilliant. Even in her last year, while her brain power had indeed diminished (she was 83 and maybe this was a little dementia?), when her 3 accomplished adult kids were taking over her investments etc and feeling like the Three Stooges while trying to figure it all out, we would always say, man, even at her worst, she is still smarter than all 3 of us put together. She had so much brain power on reserve, that even with diminished capacity, she was still smarter than most around her.
You are brilliant as well, like my mom.
Beth your mom sounds amazing! My mom lived to 92 and I think her obsession with geneology kept her sharp. You are very sweet but I never had much brain power and now at 71…… I didn’t even know what n=1 meant so asked my nephew and his wife. “Linda” replied -
“It’s a statistics thing. It basically means that you only have one observation. A single observation isn’t really worth much in science. It’s kind of like anecdotal evidence. To be rigorous you need lots of observations. Like more than 100. The more observations (n’s) the better you will be able to accurately describe some physical phenomena. So when someone says “I have an n=1”, they are just putting forth their (one) observation on a topic.”
I get it! 
My nephew, 47, who loves riding a bike, (regular not motorcycle) eg will ride from Concord MA to Provincetown on Cape Cod, ferry back to Boston and ride back to Concord in one day, replied with this -
“Never heard of it. But I know that n+1 is the number of bikes you should have, where n is the number you currently have.” 
Thank you for your encouragement.
1 Like
Thank you so much AinmRapaNui!
Candleflower,
You are welcome.
After you look at this links, I would also encourage you to go lowtoxinforum dot com (same as raypeatforum), and do a search.
Like this:
https://lowtoxinforum.com/search/2430858/?q=parkinson’s&c[users]=haidut&o=relevance
This searches for posts about PD made by user “haidut” (who is Dr. Georgi Dinkov). Dinkov is following up on the brilliant research by Dr. Ray Peat (who passed away).
Dinkov is also all over youtube, but he speaks so quickly that his videos can be overwhelming.
Instead, go to that search that I gave you above, and look around.
Peat and Dinkov found that things like AD and PD are almost always caused by a reduced ability of the mitochondria to burn glucose in the brain. The mitochondria are damaged in some way, or the diet contains far too much - unsaturated - fat (vegetable oils and seed oils), and so the mitochondria are stuck burning fat (which is very bad).
I leave you with one of my favorite posts from Haidut:
Stearic acid may help PD
https://lowtoxinforum.com/threads/stearic-acid-increases-mitochondrial-function-may-treat-parkinson-disease-pd.22277/
If you want to know which stearic acid product is best, let me know.
I consume 12 grams a day (mixed in with my meat dishes).
Do not buy “stearic acid” on amazon.
Oh my this is overwhelming no wonder practicing doctors can’t keep up. I will send to his family maybe between all of us can get some ideas. From just skimming, if anything seems he should get some blood work beyond the typical as a lot of these studies talk about low or high this or that. I’m interested myself in the stearic acid given my chronic fatigue, even though it sounds like something one would avoid. Thanks again!
Beth
#13
No idea if this would be right for you, but I’ve recently learned many w cfs take ldn and some get benefit.
Low dose naltrexone
There is a Facebook group if you wanted to read some stories.
Candleflower,
I would really recommend the stearic acid (which is a fat) for fatigue and /or PD. It has helped me.
I have 12 g a day, mixed in with my meat dish.
(this is 90% stearic acid, 10% palmitic - everything on amazon is 35% stearic and 65% palmitic)
Buy in bulk here - much cheaper than buying this on amazon.
The basics for anything like fatigue or PD (in my opinion) would be:
- aspirin or salycylic acid (80 mg a day, morning)
- stearic acid
- eating NO vegetable oils or seed oils
- eating real food (fresh red meat, wild fish, low-PUFA egg yolks, white rice, potatoes, fruit, honey)
- Spend time outdoors, in the sun
- Avoid fluorescent lights (Parkinson’s disease and fluorescent light -
Parkinson's disease and light: The bright and the Dark sides - PubMed)
- In the winter, use red light on your skin 20 minutes a day 2x (Photobiomodulation) (I switched from LED red lights to this: Photon Therapy – SaunaSpace)
Hi, for a brief and quick summary of possible peptide interventions, try asking ‘ChatGPT.com’ what peptides help with Parkinson’s. I did that and two that came back not cognitive and nootropic benefits were Dihexa and Cerebrolysin. You can also ask it about dosage. That’s enough to head down the rabbit trail of peptides and try something when all else fails. If you get interested and want more info just search for peptides on YouTube. Lots of potential benefits and instructions.
1 Like
A really promising peptide is semax. Can be taken as injection or nasal spray. Not sure if spray is as effective, usually used ejection of peptides is superior.
1 Like
Thanks Bill will look into those.
It’s interesting that I take quite a few supplements and some people say they think the fillers are problematic so a few days ago was looking at them and they all contain stearic acid and I thought that doesn’t sound good. I follow some of these suggestions but will work on others. I have a 400 dollar red light that just sits there. Thanks!
Hi Beth thanks yes I’m familiar with it but need to get off tramadol first and now isn’t a good time with this disastrous knee replacement I had almost 3 years ago which, imo, is also causing these painful leg catches. My brother went on it and at first it really helped but overtime not so much and occasionally he needs hydrocodone and it then it no longer works. I’ve heard this a lot re LDN starting out good then fizzles or for some reason can’t continue, but plan to at least try at some point.
PD and LBD have shared mechanisms. But this should be seen as a very heterogenous family of NDDs. You might have a variety of ways in which the pathology starts - toxins, genetic, metabolic etc., but once the disease process is underway, the inciting incident is secondary. You could remove the toxin or metabolic disregulation and it wouldn’t make much difference - the course of deterioration is set. There is an overprodction of alpha-synuclein protein. If you quit “seed oils” or whatever you think started this, it’s too late, the horse is out of the barn, closing the door now won’t get the horse back in.
In PD, you have the destruction of substantia nigra cells (in many cases by a toxin). They’re gone, and at this point we don’t know how to get them back. We can still attempt to control the downstream effects and symptoms, but the cells are gone. There is likely a huge (epi)genetic component in at least some class of presentations (very heterogenous disease) - you are overproducing alpha-synuclein, misfolded proteins, your immune system mistakenly attacks your own neurons and so in this case it’s an autoimmune disease. Regardless of what the initial insult was, or what set off the immune system, the disease is now progressive. All the seed oils, red meat, aspirin stearic acid etc. are not relevant, unless they can fix the underlying pathology, which they really can’t. Symptom amelioration is always a wide open area, but a cure will need much bigger guns and much more fundamental and deep interventions - drugs, not diet. Even in real symptom control, you need massively invasive therapies, like implants and electromagnetic brain stimulation. For functional preservation of intellectual power, there are drugs like klotho and platelet factor 4, which being originally endogenous can perhaps be partially stimulated by things like exercise etc. Helps with memory and executive function but not movement and is not a cure. But again, symptom control apart, the cure will not be affected by vitamins, diet, massage etc.
NDDs are serious diseases which will need serious and far going interventions.
2 Likes
