docjleonard55 's question about supplements got me wondering. We have talked before about whether supplements are working, and if they do not seem to be working, maybe they are slowing progression.
This got me wondering. Has anybody in this forum's condition improved since they started supplements or some alternative protocol? Is anybody better than they were when they joined this group?
I'm gonna say that B1 helps the majority of users and testers.
Art
You are right, Art. That is the only thing that made any difference for me and the Fox Foundation declined to investigate or help with money. Mary
You're right, Mary, but fortunately people are trying it anyway, it is helping many and we are gradually learning more about the science behind it!
Art
I'm thrilled with PDWarrior1900 and the 2 long videos recommended by him recently on B1. Things are finally starting to make sense. Would recommend them to anybody that is taking or contemplating to take it. Art , your work is very much appreciated. You have a kind heart.Mary
Hi, newbie here; I've used the search tool for PDWarrior1900 but no joy - can you point me towards where I can see those videos? Thank you
Hi, please do a search for Elliot Overton on Thiamin. Many videos on YouTube.
Thanks. I have watched his videos. I like him.
Any idea why it wasn't funded?
No, have no idea. Perhaps no money in a vitamin.
That's what I was thinking. They can't figure out how to monetize it. That's also going to be the obstacle to getting a cure. Hopefully with the rich people donating money, they're going to pinpoint what they want it to be worked on.
This article provides details on how Sergey Brin is organizing his donation of over a billion dollars towards Parkinson's. Among other things, he is helping Dr. Tass to develop and commercialize the long-awaited gloves. forbes.com/sites/kerryadola...
Oh good. I've been wondering why the gloves are so slow to come. I wish the injections of neurons would get funding. Hopefully Brin's good at assessing the most hopeful developments.
Another supplement that makes a difference to me is a precursor of levodopa it is L‐ Tyrosine. I take 1/4 tsp. in water.
How or what does the L tyrosine improve?
I'm better able to get up in the middle of the night. Don't struggle as much. I bought powder, no bad taste.
Thank you.
I was diagnosed with stage 4 PD in 1995 and, after consulting with neurologists and other doctors, decided to use complementary ("natural) treatments only.
I became symptom-free in mid 1998 and have remained so except for an occasional tremor when very tired or stressed.
and how did you do it? Diet? Supplements?
Mine was a three year journey so too long for a quick reply. I tried to attach a pdf of my story but this site won't allow that. You will find everything in "Rethinking Parkinson's Disease" from your library or here - rethinkingparkinsons.com/re...
It would be lovely to know what you did...
Mine was a three year journey so too long for a quick reply. I tried to attach a pdf of my story but this site won't allow that. You will find everything in "Rethinking Parkinson's Disease" from your library or here - rethinkingparkinsons.com/re...
You are dr Coleman?
Hi, my name is John Coleman and I am a naturopath. I do not use the title Dr.
Thank you, John. Yes. I read your book.
I hope you found some help and encouragement there.
I did. Very much.
Hi what were the natural treatments you were given ?
I tried many but only some worked for me.
This were meditation, learning to love myself, food choices, drinking lots of water, some basic supplements like C, Mg, B Complex, Aqua Hydration Formulas, Bowen Therapy, exercise, changing my relationships.
and lots of patience. Keeping a journal was very important.
Seems pretty clear that you never had a neurodegenerative condition in the first place and that you are an obvious case of misdiagnosis.
I guess you know much more than the doctors who made the diagnosis - Professor of Experimental Neurology, Clinical Neurologist, Specialist Physician, Neurosurgeon, Professor of Surgery and three GPs.
I admire your vast knowledge 
Parkinsons is a clinical diagnosis and false positive errors are well documented. That multiple doctors may have (and i say may have as you've not provided any evidence or information around these diagnoses - you've simply stated that they occurred) misinterpreted the same misleading symptoms is not surprising as they are all working from the same information.
What do these doctors say now about you and your condition? To my knowledge not a single journal article has been written about your situation which is nothing short of bizarre if they believe that you have, in fact, recovered from parkinsons (and, as you also claim, Multiple System Atrophy) as it would be one of the most significant things (if not the most significant thing) to ever occur in an area in which they all have great interest.
As you are well aware, there have been many "impossible recoveries" from ostensibly incurable or fatal disorders written about, researched and verified, but never journalled or recorded by conservative medicine.
Denial of fact does not negate that fact.
The greatest discoveries in medicine have been made by renegades who were ignored, abused, pilloried, imprisoned or killed by western medicine for daring to go against conservative dogma.
In other words, you've not been able to convince anyone reputable that you have in fact done the things that you claim, despite 20+ years of making the claims. Yet you expect people online to simply take your (fantastic) claims at face value.
It's interesting that you are happy to rely on "conservative" or "western" medical practitioners for what you seem to think is their 100% diagnostic ability (despite the challenges with PD dx being very well documented) yet then in the next breath impugn the same community for being close-minded. Seems like they are capable when it suits you and far less so when it doesn't.
Anyone that actually believes you recovered from PD and MSA through:
- meditation
- learning to love myself
- food choices
- drinking lots of water,
- some basic supplements like C, Mg, B Complex,
- Aqua Hydration Formulas,
- Bowen Therapy
- exercise
- changing my relationships.
is of course free to attempt to replicate your supposed result but i also note a distinct lack of people claiming to have been successful in doing so. Why? Shouldn't there be some people - hundreds if not thousands - coming out of the woodwork in strong support of your methods at this point, 20 years down the track? Very odd.
Okay. End of chat.
Yes, many people have followed my principles and recovered, but cannot get publicity.
Frankly, I don't care what deniers say and, those doctors who have supported me and/or come to me for treatment have all been disciplined by their management organizations. Go figure.
Anyway, I have many patients awaiting my services so I will sign off now.
I trust you will find your way to good health and joy.
Yes, many people have followed my principles and recovered, but cannot get publicity.
Yet in ~15 years of browsing the various PD internet forums that have existed I have not once seen a 'recovery' (either short term or sustained) attributed to your methods. How hard can it be for someone that has recovered to go online and talk about it? Surely these people have such a deep sense of gratitude towards you that they would not only willing, but enthusiastic about advocating for you to other groups of PWPs?
You are the one making the grand claim that you have a replicable method for 'recovering' from parkinsons. The evidentiary burden is actually on you, despite your claims of indifference to questioning or challenges. So far, I've seen nothing but wholly unsupported claims. Hot air.
As they say, if it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck.
Thank you so much for joining this group and sharing with us crewmanwhite ! Please don't leave us. Your contributions are appreciated by many, many people here.
This group is called "Cure Parkinson's". If anybody has any ideas of things that might help, I am all ears (I am listening to 40 Hz Isochronic tones as I type). I listened to your podcast and the things you said resonate with me. I will be reading your book soon. Thanks!
Thank you. I am still here as and when I have the time.
I will contribute as I can and will ignore those who simply refuse to read the information that is readily available, both on line, in journals and in books, in order to fuel their fury at what "fate" has delivered and their unwillingness to get off their butt and do something for themselves.
Those who are prepared to make changes and help themselves are the ones who will benefit.
Well I know kevowpd has been working hard for years trying things try and fix this problem. It is not from lack of research or open mindedness or work.
What is frustrating to PwP is PD is probably not a "disease" but a set of symptoms with multiple causes. There is likely not "one" solution. Given the incredibly small number of people that seem to have recovered from PD, for most, or maybe all, PwP there may not be any solution.
What you have said that resonates with me is that there is not a cure, but a path. And the importance of journaling.
I have not been diagnosed with PD. I was diagnosed with REM Sleep Behavior Disorder 2 years ago and already had PD symptoms such as a sore neck and left shoulder and left upper leg, formication, seborrheic dermatitis, orthostatic hypotension, mild balance issues, no pep in my step, occasional slight tremor in my left hand, random involuntary muscle twitches, sub-optimal poop, and a splotchy tongue (for the last 25 years).
What I try to do is research and try things that might help, gradually changing things while watching these symptoms. Please don't jynx myself. I've seen improvements in most areas over the two yeas.
These symptoms have been gone for awhile: seborrheic dermatitis, orthostatic hypotension, mild balance issues, no pep in my step.
My tongue looks normal most of the time. My poop is much better. My sore shoulder is less sore and sometimes my neck feels fine. Formication was gone, but now it is back but much milder.
This is my list of protocols: rbd-pd-protocols.blogspot.c...
I know PD symptoms wax and wane and I may be fooling myself thinking I am making progress. Odds are that is the case. But I still like the concept of identifying markers and establish and tweak a routine to modify those markers. I think that is where you are coming from too.
I agree that PD, like so many diagnosed "diseases", is actually a group of neurodegenerative and inflammatory symptoms emanating from known causes.
Diseases are named and identified for convenient classification and symptom treatment.
When on a reversal/recovery pathway, keeping a journal is critical as symptoms WILL wax and wane but, if we keep notes, we can see changes in frequency and intensity.
I didn't just get well. It took years of dedication and discovery, plus many disappointment and frustrations. But now I live with no symptoms unless I neglect my health - eat rubbish, work stupid hours, let myself get too stress about unimportant matters.
Keep up the good work.
John, i think bowen, exercice, meditation,journaling, art and a few things you mention in your book do help and improve my life. Learning to love myself is still in infancy...starting by self valuing. I believe for anyone to discard this is unfair. I really appreciate your contribution. I wish i could afford more treatments, more aquas, etc. I juggle treatments, psychotherapy, supplements limited by my pension. Ive lived many years without family. They can be a precious resource for some people but for others a big source of trauma and suffering. For what i read this was your case so is mine. I think some people recover or manage to delay progression dealing with triggers. I dont know if thats the case but surely im better off dealing with extra baggage than denying it. Anyway. Thank you. Stay in touch please.
Sorry, i disagree with this answer. We arent specialists and we are here to share hope and learn from others.
I love your description of this group! "We are here to share hope and learn from others". Well said.
Thanks, Bolt
Those are lovely thoughts. But it helps to have a properly functioning fraud filter too
YES!! Have you not looked at 'FAST WALKING'? It has been studied by the Mayo Clinic and was proven to be the only exercise that produced GDNF in the brain, and it is the LACK OF SUFFICIENT GDNF THAT IS THE CAUSE OF PD!!!
Contact me and I will tell you here to look and wee my website - 'reverseparkinsons@gmail.com'
Hi John. You know I respect your work and your journey.
But GDNF deficiency is not a CAUSE of PD, but a SYMPTOM of the illness process.
We need to look at each individual and understand what has caused the lack of GDNF and this usually trauma and/or toxins and/or infections.
I disagree strongly! if we had suffficient GDNF then we would have no PD symptoms, or do you think that movement symptoms would no longer be there but, all the others wouild?
Hello John, I do not disagree that GDNF may well be in deficiency but ask "what causes that deficiency?"
If we can answer that, we can tackle the real cause.
None of us is in the position to find a cure for PD so, while scientists are looking, ifIF THEY ARE SERIOUSLY LOOKING' , WE MUST GOT ON WITH DOING WHAT WE CAN TO INCREASE THE GDNF IN OUR BRAINS!
I take b1 but not sure if i have it adjusted.Magnesium citrate helps with constipation
Melatonin and GABA a magic wand for sleep
Alpha lipoic acid for pain
nope.
Sorry to hear that beehive. I am happy to see you are still here. You are in my nightly prayers.
B1 protocol, mannitol balance and CBD oil 1200 mg all make a big difference with hubby's symptoms (he does not have any tremors).
May I ask what symptoms they're helping with and what difference you've / he's noticed?
Some ease of movement, less rigid, takes away pain as well.
better? I don’t think so, holding steady without C/l 4 years dx. Yes. I use very low dose mucuna, 1500 mg B1 , magnesium GABA in the afternoon, and cannabis. I walk a lot every day, ride my bike and generally stay active. I’m currently in a trial using the “gloves” . Pretty sure it’s been placebo for nearly 2 months, new gloves July 5🙏
Is this the Dr Taas glove you're using or a different one?
the only one I’m aware of is “ the dr Tass “ glove being tested in Eugene Oregon at Synergic lab. That’s the one I’m currently trialing. I’ve had a pair for 2 months, about to switch to a new pair. Praying for dramatic improvement 🙏
that's great that you're in the trial. I've been emailing them to see about getting in their study. I filled out a sort of survey to see if I qualified and I did, but they've never gotten back to me.
I emailed several times before I got an answer
Many of us keeping eyes open for the gloves...
I’m wearing the gloves right now, I will report back with any improvements. I’ll say this: optimism is improvement.
What's your low dose of macuna?
Naturebell brand certified 30% , I use 2 capsules 3x / day. So 300 mg each dose. I’m experimenting with adding 1/2 tablets of carbidopa now.
Exercise and coq10
I have experienced a major change due to supplementation with vitamin B6 (P5P) after a test that showed a serious deficiency. The L/C medication was more than halved within 2 weeks and many PD symptoms disappeared in whole or in part. After almost a year I'm still fairly stable. However, there was an interim deterioration due to a short period with B6 overdose. The coherence/support with the other B vitamins and supplements will certainly help, but is not detectible. An exception is 1 mg of melatonin in the evening for better sleep that indirectly improves the PD. So indeed I’m better than I was when joined this group. 🍀
Hello ~ What is helping my husband’s main symptoms which are right extremity tremor and anxiety. Right now what is helping the most are ~
MORNING (shortly after he gets up around 6 a.m). ~
Levela (Lavender supplement)
2-GABA ~ Pharma GABA Stress-Relax Fast Acting 100 mg Chewables. (If he awakens extra early 2 or 3 a.m. he will take this dose at that time.)
1- CBD capsule
(If he gets a little more tremory during the day he may take 2 more GABA. He always takes 2 when he takes these.
MID DAY ~
L. Plantarum ~ the brand is Foods for Gut (they freeze dry it so it doesn’t have to be kept cold.)
BEDTIME-ish ~ (actually an hour-ish before)
Melatonin
1-Levela
GABA ~ This time same brand but a 250 mg capsule that he swallows. (No swallowing problems.)
To help to keep his gut functioning daily ~ (he has been following this for 3-4 days and has had good results so far)
A.M. ~2Tbls ground flax seeds
1 ½ tsp ground Chia seeds
P.M. ~ Mag Citrate
Thorne EnteroMend
Also, when his tremor/anxiety get out of control I can stoke the Tremor leg to help him get calmed back down. If he awakens in the night and can’t get back to sleep then I use the Viraball (Amazon) on the tremor leg. It takes 1½ - 3 cycles, but usually gets him relief so he can go back to sleep and he will take the 2 chewable GABA at that time.
He is on other supplements, but these are what we have come up with that give him relief. He joined Rock Steady Boxing alomost 3 months ago. Now, he has a much more “normal" look in his eyes ~ more alert I guess. He just acts a lot better since we started the GABA, Levela, and CBD. He is on B1 25 mg 3x weekly, but that doesn’t seem to be helping him. And we have tried NUMEROUS dosages!
He has never seemed to have gotten relief from his C/L. He sees a new neurologist soon and he wants to discuss with her about getting off C/L and trying DopaBoost since that has seemed to help in the past.
Exercise is a huge benefit for him. He rides his e-bike only 3 days a week and now only 10 miles (last year he was riding 24 miles 4-6 days a week & put around 2000 miles on his e bike, but he wasn’t doing Rock Steady Boxing and he has developed severe back pain and right sciatica.)
We have tried MANY other things and so far this is what has helped the most.
Oh! Diet ~ we have recently made the following changes so it’s too soon to know if this is helping ~
Fruits, Vegetables, Beef, Chicken, Olive oil, Ghee, Avocado oil (organic ~ grassfed ~ free range). (I think these changes are harder on me than him!)
No caffeine!
No alcohol!
No grains!
No dairy! (No butter or cream!!!)
And he faithfully uses the WellRed Helmet a.m./p.m.
He just started seeing a naturopathic doctor who has him on some supplements UNDA #8, 9, 41, & 202 for detoxification, which he just started, so we don't know the outcome yet.
That’s all I can think of at the moment.
I hope this helps and have a fabulous 4th holiday!!
PS ~ we tried Restore Gold, but that did’t seem to help either.
Test
I saw this review in the British Supplements newsletter today and thought I'd share. I take magnesium l-threonate to help with sleep, muscle tightness and brain function; it's the only form proven to cross the brain barrier.
Magnesium L Threonate
"My last order came through, via Royal Mail, within 2 days from ordering. I continue to have relief from leg cramps caused by Parkinsons and would recommend anyone suffering with cramps to give Magnesium L Threonate a try.
My partner now takes them daily. Thanks to Chris and the team for a brilliant product and excellent service."
There are fakes for this brand on Amazon; they're only available on their website, which most unusually has a sale on at the moment (and no I don't work for them!! Big fan though as they don't have any fillers. I ignore the owner's eccentricity and politics. )
Do you have a link to the website please?
Here it is - there's a lot of axe-grinding about Big Pharma etc to ignore! I recommend signing up for the newsletter, which consists of that week's testimonials - they are amazing and also educational about what does what.
I'm not sure if HealthUnlocked is a US website with mainly US contributors? I'm in the UK and so is this website, but they plan to expand to selling to the US and Europe soon.
Thanks. I think they sell to America. They flagged me as American and put the prices in dollars.
That's great to know. He's been saying it's coming soon for a while. Let me know if you successfully buy something.
Supplements working?
Could the medications taken for PD mess up your stomach and digestinal track so much that the medications aren't working? I was reading ..
a new medication changed my daily life
Increasing levadopa/carbidopa
Keto diet and B1
