I'm new to this forum, as I've just been diagnosed here in Australia with PD two months ago. With only a few symptoms so far (a slight hand tremor & an aching arm), I've currently been prescribed 1.5 Kinson tablets x 3 times a day, and it seems to be calming things down, at least for now. In trying to learn about this disease, and I've been interested to read about the potential benefits to some people of:
1) The Pro-biotic - Lactobacillus plantarum PS128;
2) Near infra-red light treatment.
I'm sure both of these treatments have been widely discussed here previously, but can anyone please tell me what their experiences have been with these two treatments?
They both seem rather expensive, but if they're proving to be helpful to others in the early stages of PD I'm willing to give them a go!
Many thanks.
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Coffs
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I wish I’d found this forum in the early stages of my husband’s Parkinson’s. You have a much better chance of slowing down the progression of the disease.
Have you seen the protocol John Pepper suggests (and follows). That’s where I’d start. See his posts. You can contact him and he’ll send you a video (no charge). He is amazing and is very well respected here and elsewhere.
One of the members of my Bridge class heard him speak here in Australia in 2015 and started following his advice. The results were amazing. I can vouch for that.
Hi TL, as I recall ( this was before Covid) exercise became her big thing. She did line dancing, rock and roll, walking (as per John Pepper), gardening…according to her husband, she never sat down. I haven’t seen her for quite awhile.
Very strange because I just went in to double check the website. If you are not in Asia, best to email stella@benedbiomed.com
I emailed her after reading the article in frontiers and she replied and gave me the contact. She said shipping wd not take long and wd not affect the product but I had to refrigerate it once I received it.
Hi. I managed to get Swansons L-Plantarum. I got an email from Benedbiomed saying it was not yet available in UK. At first he got good results but then we went on holiday for 3 weeks and he over indulged and was not getting such good results. We are home now so will experiment again. Everything is so much more complicated when you have DBS. It's getting the right balance.
I am one of many to try red light therapy and feel it makes a significant difference. In my case I use it on my abdomen (for the microbiome benefit) as well.John Pepper draws mixed responses from those with experience. His neurological condition is quite likely not to be parkinson's disease. But his advice about exercise and a positive attitude are both sound
I joined a zoom meeting with Dr Catherine Hamilton organised by Michel0220 . She mentioned that even if you are using red lights on your abdomen it was crucial to have them on your head.
I think she based it on the feedback from her patients and the clinical trial by University of Sydney. I can’t remember the name off hand.
I have a redlight pad as well but my husband has only been using the coronet Duo as it is more convenient. We had only been using coronet duo for 4 weeks and probiotics PS 128 2 weeks when there was a 180 degree change. It is almost miraculous and I hope it will continue. Balance was normalised and movements previously slow are normal .
She also mentioned that her patients had less sleep disturbances
Sleep normalised. It had become quite disrupted. Although I still have some symptoms, I don't feel PD is taking me over. I feel more normal. A steady deterioration has reversed. Instead of booking a neuro appointment to increase my medication I have left it. Generally less tremor and rigidity
Welcome Coffs! I have not been diagnosed with PD (I do have a sore left shoulder and arm and sore left leg. I am hanging onto the belief that I have "mouse shoulder" and I mistreat my left leg sitting cross legged) I have REM Sleep Behavior Disorder which is also called pre-Parkinson's (some/most of the time). Diagnosed in April.
Anyway, and this does not seem to have caught on here (yet), but the alternative treatment that I most believe in so far is B3 Niacin healthunlocked.com/cure-par...
I do a red light also ($40 from ebay pointed at the back of my head when I use my exercise bike) and a bunch of other supplements, but the Niacin is the cheapest thing I do and if you read the recent study it kind of makes sense.
Hooga Health has a couple of hand-held devices for $39 as of this writing. Personally, I sit in front of their HG300 model directed at my frontal cortex, then brain stem, then belly.
Like most, my treatment plan is multi-faceted. That said, I've been using light treatment 5 to 6 days a week for four years, I'm convinced it's making a difference, and that's why I keep at it consistently.
Motor symptoms showed up about five years ago. Looking back, I started talking in my sleep the year before that (REM Sleep Behavior Disorder which has increased since). Diminished sense of smell was at least five years prior to that.
Once the motor sx were linked to a PD diagnosis, I did the deep dive, too-many-hours- of-online-research trip. Started the photobiomodulation (light therapy) about nine months in.
I had a misguided notion to defer levodopa as long as possible and so I struggled with rigidity, PD pain, balance, some tremor, eye/brain tricks, etc., during the first few years.
Then I enrolled in Dr. Laurie Mischley's online PD School in late 2022 and her content set me straight; I started levodopa/carbidopa 25/100 three times a day in January 2023 and was highly responsive to it.
My quality of life and symptoms dramatically improved as a result and I'm functioning well overall with some challenges here and there. (Weak bones; dry eyes; sleep issues sometimes; swallow/choke scares; temperature dysregulation at times; possible cardio issues, to be checked in a couple of weeks. At 66 y/o, "the joys of aging" are sometimes hard to distinguish from PD issues.)
Interestingly, at this point, I don't have distinct "on" and "off" periods. If I forget pill number three at 4 pm, it doesn't seem to make much of a difference. "Oh, it's 7 pm; I forgot to take my 4 o'clock pill." That, plus not having to increase the dosage in one year, makes me perceive I'm doing well. Or is it because I'm still in the honeymoon stage? Who knows?
I've been doing a tap test once a month since March 2022 and the results are encouraging in terms of improvement or stability. parkinsonsmeasurement.org/t...
My stack includes glutathione, lithium, Vitamin B6-B12-folic acid combo to keep homocysteine down (I had it measured last May and it's working), Vitamin D3, Vitamin K2, Ceylon cinnamon, omega-3s/fish oil, magnesium, multivitamin and melatonin.
My perception is that glutathione made a distinct difference in energy and overall function. More kudos to Dr. Mischley for her guidance (via online PD School) in that regard.
Well, that's probably enough for now. Hope this helps!
I am part of a small group of PWP‘s who regularly organise zoom sessions with practitioners to inform ourselves on how to best manage our symptoms. We have organised a call with Catherine Hamilton this coming Monday at 11 am London time. Catherine is based in Tasmania and is the author of the Red Lights on the Brain blog. Please direct message me for details, we can accommodate a few more participants. I will need your email address to send you details if that’s okay.
Hi and welcome, like you I found this forum shortly after having been diagnosed, to save me from typing again, you can look at my posts and my repliies to others as we have much in common
I have found the duo coronet very beneficial and worth every penny! I have no experience with PS128. There is loads of incredibly helpful info on this site. Take your time to find what works for you.
Are you referring to the coronet? I notice a difference in my memory mostly. I was really struggling with recalling common words and names and find the coronet helpful
At a similar stage two years ago I joined this forum, and it was one of the most helpful things done in relation to the range of information, advice and support received since.
I bought the coronet duo and a PD Care laser quite soon after diagnosis and continue to use them daily. There was a noticeable impact on the difficulty I’d had with soreness in my throat, I have the impression they help in regulating mood and gut function also.
Tune in to the No Silver Bullet YouTube channel, the Bas Bloem lectures and anything by Laurie Mischley of Parkinson School. All three of these are very helpful sources in relation to learning about how others work to slow progression (re exercise, diet, supplementation and the monitoring of progression particularly).
BioKult Mind (PXN21) has been an effective probiotic to use to avoid constipation issues.
Exercise, lots of it, vigorously if possible, consistently.
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Anyone taking these drugs?
Not diagnosed yet, but I have little doubt.
Autonomic Dysfunction/neuropathy
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