#21

+1. @Candleflower please don’t pay attention to all the BS posted by @AinmRapaNui. PD and LBD are serious and very complex diseases.

3 Likes
#22

Candleflower,
I can’t speak to “fixing” PD, but one needs to first address the things are likely causing mitochondrial malfunction.
This is just common sense.
The underlying pathology is mitochondrial malfunction.
If you search this site like this:
https://lowtoxinforum.com/search/2437598/?q=parkinson’s&c[users]=haidut&o=relevance
you will see one medical report after another that talks about how the underlying pathology is mitochondrial malfunction.
If you search the site further, you will see that mitochondrial malfunction is caused by:

  • Vegetable oils and seed oils
  • Lack of Vitamin D (sun exposure)
  • Excessive burning of fat in the cells, and not enough burning of glucose in the cells
  • Toxins like glyphosate
    etc

To do “nothing”, is to just to let mitochondrial malfunction get worse and worse.
The first thing to do is to repair mitochondrial malfunction, for fatigue or whatever the condition is.

1 Like
#23

The difficulty here, however, is that the mitochondria are gradually damaged by metabolism. This can accelerate or slow down, but it is really really hard to repair.

My hypothesis is that for most folks melatonin in the CSF acts to protect the brain at least when people are younger, but that for PD the melatonin in the CSF is reduced for some reason or other (potentially a problem with the pineal recess).

Minor relatively trivial things like using vegetable oils rather than seed oils are not going to fix the mitochondria. They may make a minor difference in the rate of deterioration.

3 Likes
#24

I appreciate everyone’s input, wanting to be helpful, misgivings etc. I will proceed with the knowledge it’s a very serious disease and as of now actions to help general heath such as exercise, eating well are all we’ve got although really won’t move the needle in any significant way. The doctors have told him exercise is the main thing and he’s good to do that. One thing I learned last night talking to him - I thought the brain MRI showed actual Lewy Bodies but he said no as far as he knows the diagnosis was based on his testing and the fact he had brain shrinkage. Although you’d not detect anything simply talking to him, he could not draw 3 o’clock!! That is absolutely mind boggling to me. Also I remembered that an MRI I had a year ago said that I had some brain shrinkage but it was typical for my age - just googled to see it does shrink in everyone with age, so I assume my brother’s shrinkage was more than typical. Even though alcohol hasn’t been connected with LBD, I can’t help but wonder if it’s played a part as he drinks too much imo. It can’t be good for the brain. Thankfully it gives me a terrible headache so I have never drunk other than the few times it’s taken to confirm it gives me a terrible headache. He said they did do a blood panel testing vitamin levels and such, all were ok.

1 Like
#25

Some studies found that alcohol consumption in moderation was good to prevent PD: The Role of Diet in Parkinson’s Disease 2024

2 Likes
#26

As of today, there’s no evidence that vitamin D is relevant in PD:

1 Like
#27

Vitamin D
You might want to look at these:
https://lowtoxinforum.com/threads/parkinsons-disease.10780/page-3#post-395960
https://lowtoxinforum.com/threads/vitamin-d3-extends-lifespan-by-preventing-toxic-protein-buildup.13269/

#28

John,
Yes, stopping seed and vegetable oils - alone - may not reverse PD.
It might or might not slow it.
That is just one of the things that could be done (and it is something that everyone should do, whether they have PD or AD or chronic fatigue).
For reversing PD, take a look at these:
https://lowtoxinforum.com/threads/thiamine-b1-reverses-parkinson-disease-in-humans.8305/
https://lowtoxinforum.com/threads/niacinamide-may-be-a-viable-treatment-for-parkinson-disease-pd.24281/
https://lowtoxinforum.com/threads/taurine-like-compounds-may-treat-parkinson-disease.7482/

#29

My loved one is going thru LBD now. We are starting our sixth year. The progression has been relentless. One of the earliest problems was navigating down steps. She fell several times carrying a laundry basket => fractured wrist. It progressed to overt lower visual field neglect (that means, while not blind in the lower visual fields, she could not process what she was in fact seeing, hence the falls). This lower visual field neglect was missed by the neurologist but became evident in watching my wife eat-- eventually she would feel for food on her plate and now I must feed her all but “finger food”. So this visual-spatial disconnect led to more disability. For example, on the last day that she drove yrs ago, she pulled into the oncoming lane of traffic on a turn when I was testing her driving. (Glad I did.) Over the last 5 yrs, she has also developed significant bradykinesia (all movements are extremely slow along with another Parkinsonian feature, almost complete loss of balance (but absent the tremor of Parkinson’s). Also increasingly evident over the last 5 yrs is REM sleep behavior disorder (RBD for short) where she has terrible screaming nightmares, everyday including naps. While her memory is failing, it was a relative late-comer compared to these other signs. Though, early on she had terrible impulsive buying behavior. I had to cut off her credit cards early. Another sign she developed is echolalia- she will repeat whatever I say (“Honey, hold this grab bar here”…she repeats). Obviously, more has developed but we won’t go there and she now requires my help for all aspects of her life. In the end, we can debate whether this represents LBD, Parkinson’s with dementia, Alzheimer’s, frontotemporal dementia, vascular dementia, posterior cortical atrophy with AD, etc, but her doc and I agree, there is no magic bullet. Good luck to you and your loved one. If you ever need tips on navigating the difficulties ahead, I’m happy to tell you how I resolved many of these.

4 Likes
#30

There seems to be so many inconsistencies and qualifications in studies, at least for one not knowledgeable in reading them. I do have an issue when the Nurses health Study and others like that report correlations as I’m familiar with it and it relies too much on subjective memory imo. Re drinking, my brother would agree he was a functioning alcoholic, the amount he’s consumed over his life could not be good for his brain. He still drinks a little but not much. Guess no way to know if it was a contributing factor, but that’s water under the bridge…

Some influencers like Andrew Huberman and Peter Attia are now saying zero alcohol is the best. Who knows….

#31

Oh what you and your wife are going through. It’s heartbreaking. Thank you so much for your offer to share your experience/tips as we go along. It’s 3 years since his diagnosis, he was having hand tremors and his leg would jerk at times, that’s what prompted the doctor visit. Since then his balance has worsened and he gets dizzy occasionally. I remember before any of this I noticed he shuffled and I would say Billy pick up your feet, but didn’t think too much of it. (We live in different states this was via FaceTime.) I have to be careful how much I share with his wife because it just upsets her. I can understand her reluctance but…….he will need to be further along before she takes the really hard look at it. Honestly I’m still in a bit of denial too. The nightmares your wife has must be so difficult, it seems medicine could at least do something for the sleep issues. Thanks so much for sharing some of your experience Dr. Chase, I’m just so sorry you have it to share.

#32

Thank you for sharing your story. I’m sorry for what you are both going through. Sending hugs.

2 Likes
#33

Sorry to hear what you’re going through.

For RBD, I would look at the following:

  • Tanganil (N-acetyl-DL-leucine): A bit of ADLL for RBD – The Science of Parkinson's . In the German paper, benefits appear after just a few weeks. On Health Unlocked, several people with RBD reported similar quick benefits: https://healthunlocked.com/cure-parkinsons Tanganil is only available in France (I’m happy to send you boxes for free). N-acetyl-L-leucine is available in the US (just approved a few months ago) but it very expensive.
  • High-dose melatonin: melatonin is the default treatment for RBD, but it might not be given at a high enough dose.
  • Prazosin or terazosin:
    • Prazosin is used to treat PTSD nightmares. It might work as well for RBD: Parkinson's disease - #645 by adssx
    • Terazosin (of the same family) is explored in RBD, DLB, and PD with ongoing trials (and others about to start), see this thread: Terazosin / doxazosin / alfuzosin may protect against dementia with Lewy bodies
    • The issue with both is orthostatic hypotension, but you can start with a very low dose (taken at bedtime). I see benefits in my energy levels from just 0.5 mg terazosin. Terazosin might help with urinary symptoms as well (it’s normally approved for prostate enlargement).

We have a dedicated thread for PD that you might be interested in: Parkinson's disease

In particular, here are interventions that I think might be effective (my two cents and I’m obviously not a doctor): Parkinson's disease - #429 by adssx

3 Likes
#34

Thank you all for your thoughts. I have some homework now! An interesting aspect to this disease process is the relative lack of information on how to cope with the inevitable changes. For example, just last evening I showed a practicing physical therapist with experience in this area my discovery of a “chair lift” (chair lift on Amazon. She had never heard of this type of device but has aided us many times.

1 Like
#35

I have homework too - TY again Antoine. I hope you can find something that helps, my brother was given 10mg of melatonin. Antoine you said one drug helped with energy, so assume you’ve noticed at least some change in that?

#36

Oh my I just checked out those links and it makes ones head spin. I admire you for going down every avenue. One thing that caught my eye is folks do better at high altitude. I live at 6800 in Colorado and my brother in Austin. They visit 2 weeks a year so I’m going to have him pay attention this summer if he notices any difference. And the hypoxia in a pill is interesting. I just started breathing exercises for sleep apnea where one needs to have air hunger it’s thought we breathe more than we should. I’ve heard (you tube MD out of Charlotte NC) NAD does nothing orally it must be IV for greatest effect sub Q will have some. Sounds like you were waiting on it at that time anyway. Are you taking the OTC cough medicine someone mentioned?

#37

Hi Candleflower

It is very touching that you care so much about your loved ones.

Now to your question: Alzheimer’s and Parkinson’s diseases are associated, according to some studies, with gut health. The gut-brain axis. The development of inflammation in the gut, irritable bowel syndrome, bacterial overgrowth syndrome, and “leaky gut” lead to the development of many neurodegenerative and autoimmune diseases.

I have thought about these issues for a long time and have come to the conclusion that these processes can not only be stopped, but also reversed

What I would do if I were you:

  1. Carefully read the book: Dr. Steven R Gundry The Plant Paradox: The Hidden Dangers in “Healthy” Foods That Cause Disease and Weight Gain and use the nutritional advice.

  2. Take the hydrogen breath test and Fecal calprotectin (FCAL) to confirm inflammation in the gut

  3. Would watch videos that explain how to deal with such gut problems

  1. Would take 6-8 grams of creatine daily

  2. Would take 1 mg of lithium in the morning

Whatever would not do categorically:

  1. Avoid taking non-steroidal anti-inflammatory drugs, such as ibuprofen, as these have a very negative effect on the small intestine

  2. If possible not to take antibiotics or at least categorically avoid taking fluoroquinolone antibiotics like Ciprofloxacin. If there is an indication to prescribe antibiotics, any other antibiotics, but not fluoroquinalones.

Everything written above is absolutely safe. Maybe it will help you with your problems

I apologize for my English, maybe something will not be clear. It’s not my first language.

1 Like
#38

Creatine showed no long-term benefits in PD.

And yet ibuprofen is protective against PD.

Similarly, antibiotics use is associated with less (not more) PD. But it’s true that not all antibiotics are good.

So it’s way more complex. And basically most of what you said is incorrect.

3 Likes
#39

I don’t want to open a discussion, but you are wrong. Non-steroidal anti-inflammatory drugs do not actually help, but worsen the condition. It is like in rheumotoid arthritis, ibuprofen reduces pain, but increases inflammation of the small intestine and, consequently, the course of the disease and requires ibuprofen to reduce pain and again worsen the overall condition. You are falling into a logical trap.

It’s really quite complicated, but I’m right globally.
The main thing is to remove inflammation in the small intestine, i.e. the root cause of the disease.

#40

Different people have different views as to what the mechanism of parkinsons is. I think it relates to accelerated damage to brain cells as a consequence of a shortage of melatonin. You think it is something to do with inflammation in the small instestine.

I can explain every step in the process from my mechanism. How do you link inflammation in the small intestine to damage in the brain?