This thread is to capture PD treatment/protocol success stories. We can even include spontaneous recovery anecdotes.
I'm sure we all know of somebody, somewhere, that has had success and either stopped progression or reversed progression.
It could be a specific person, or a group in a trial.
Don't let this thread bring you down (if it does, I can delete it). I think we are going to get some good examples.
If I've said this once, I've said it a million times. I am not a smart person.
I took a close look at this person's profile. He is self diagnosed. I really need to be more careful. Apologies to all my friends over here.
Could be success. I am not vouching for this person, and 500 mg of flush free niacin a day may be too much (research for yourself please).
Over on this forum there is a person that says 500 mg of flush free niacin a day and 12 butyrate pills (6 in the morning and 6 at night, which is twice what the bottle says to take).
This is the butyric acid product he says he uses: amazon.com/gp/product/B003J...
He says he was diagnosed 3 years ago and all of his symptoms reversed. He says he takes no other PK medication.
parkinsonsnewstoday.com/for...
Thank you Bolt for posting this.
This is trivial and I may be wrong, but I am accustomed to seeing Parkinson’s Disease abbreviated as "PD", not "PK." Every time I see you refer to "PK," I think of "pastor's kid." 😊
Thanks jimcaster! Right you are.
Hi jimcaster, yes you are right. It should be PD. However, I like to see if the world can agree to call this disease/condition as simply a “movement disorder “. Parkinson’s disease carries a very negative connotation and broadcasts a very negative perception of us if the condition is even understood. For those who don’t know the various constantly changing manifestation of the condition, they are either confused or terrified or perplexed! There needs to be some more educating and we need to start by refusing to call it Parkinson’s disease.
RKM
Okay, I think this is fairly successful. The 47 people in this B3 trial had all of their UPDRS scores improve or stay the same except for non-motor function Set Shifting (it got worse. not good).
Niacin Enhancement for Parkinson’s Disease: An Effectiveness Trial
Vitamin B3 is the energy source for all cells by producing NAD ⁺ and NADP ⁺ in redox reactions of oxidative phosphorylation. Thus, some symptoms of PD such as fatigue, sleep dysfunction, and mood changes may be related to the deficiency of vitamin B3. Here, we conducted an effectiveness trial to determine the effect of 12 months of low-dose niacin (a vitamin B3 derivative) enhancement in PD individuals. An average of 9 ± 6-point improvement in the Unified Parkinson’s Disease Rating Scale (UPDRS) III (motor) score was observed after 12 months of daily niacin compared to the expected decline in score (effect size = 0.78, 95% CI = 7–11). Additionally, secondary outcome measures improved. Notably, handwriting size increased, fatigue perception decreased, mood improved, frontal beta rhythm during quiet stance increased, and stance postural sway amplitude and range of acceleration decreased. Set shifting, however, as measured by the Trail Making-B test, worsened from 66 to 96 s. Other measures did not change after 12 months, but it is not clear whether this represents a positive benefit of the vitamin. For example, while the quality of night sleep remained the same, there was a trend towards a decrease in the frequency of awakening episodes. These results suggest that niacin enhancement has the potential to maintain or improve quality of life in PD and slow disease progression.
Success Number 2 (from one of Art's posts):
Fecal microbiota transplantation therapy for Parkinson's disease
A preliminary study 2020 Aug
ncbi.nlm.nih.gov/pmc/articl...
The motor and non-motor symptoms were evaluated by scale scores during the 3-mo follow-up. The score of PSQI, HAMD, HAMA, PDQ-39, NMSQ and UPDRS-III significantly decreased at 1 and 3 mo after FMT.
10 out of 10 people that had a single colonic FMT treatment showed showed both motor and non-motor improvements.
They had a self satisfaction chart that showed 10 out of 10 were satisfied for at least 4 months. 1 satisfied for 18 months and 2 satisfied for the duration of the study, 24 months. This chart seems kind of vague.
I'm going to try and get more data on this study. I can't believe they did not keep measuring UPDRS for the 24 months.
That’s really interesting. And while nobody necessarily wants that kind of implant, it’s much less dramatic than some of the other things suggested. I’ve been very interested in what you find out and in who is doing it now, that is if it is successful. Can you imagine not having these symptoms? Wow.
A lot of people want FMT. I'd love to have a bowl full of frozen crapsules. They are expensive though.
I love the name crapsule. But how do you decide what kind you want to get even if you could afford it? I need to look into it more I think. And do you swallow them or are they placed so to speak? It would be so amazing if that would help. I do need to do some research. It was funny I was telling a friend about it years ago because he has Crohn’s disease. It just makes him absolutely miserable. Anyway I was telling him about transplants what I read, and he was incredibly horrified LOL. I’m surprised he spoke to me after that. It was so funny; I don’t think he was at the desperate stage like many of us are.
facebook.com/groups/1676427...
facebook.com/groups/FecalTr...
facebook.com/groups/1870951...
facebook.com/groups/2140010... (Australia)
facebook.com/groups/fecal.m...
facebook.com/groups/9091580...
I'm not endorsing them. Do your research.
You swallow them frozen and they are in capsules that will make it to your gut.
I have not tried them.
Don't chew them!
When ordering from Microbioma, if you want crapsules you need to make that clear or they will ship frozen enemas.
Oh my gosh. Thank you. I don’t think I’m quite ready for that step but it’s good to have this information. Wow. Scary. Exciting but scary.
But I’m definitely gonna look into it thank you. No there will be no chewing of the capsules LOL.
For your friend: pulse.seattlechildrens.org/...
Thanks so much!
Thanks crimsonclover. I think we should all be on the SCD diet. Not that it is enough to beat PD though. Just one more thing that might help.
I'm thinking of the SCD as taking a more active role than is normally attributed to the word "diet" (since I believe the problematic gut may be a major contributor to developing PD).
Have you heard what Dr Filip Scheperjans said about studies in mice (especially exciting is towards the end of this video): cureparkinsons.org.uk/2018/...
To my way of thinking, it doesn't matter whether an overhaul of the microbiome is achieved by conventional means or through an alternative protocol such as Dr. Suskind is using. I've read that constipation is something that precedes diagnosis by 10-20 years or more. Knowing that most illness/disease benefit from early intervention makes me wonder if effective intervention (overhaul of the microbiome) during the 'only constipation' stage would have halted the entire process.
It takes devotion to follow through though.
Exactly. When everybody was talking about FMT I found this report showing they were able to normalize the microbiota of some patients using the SCD (provided you still had the needed flora). This convinced me to jump on the SCD. I don't find it difficult at all, but I had already cut out almost all processed food a couple years ago. Watching the video. Here is the report: The Specific Carbohydrate Diet and Diet Modification as Induction Therapy for Pediatric Crohn’s Disease: A Randomized Diet Controlled Trial
ncbi.nlm.nih.gov/pmc/articl...
Thanks for the link!
It was around the 3rd or 4th month that I really missed some foods. I don't recall how long I was on it, maybe 6 months? But gradually stopped and my symptoms/problems did not return. I've had 2 courses of antibiotics since then and I wish that I'd thought of going back on it (or staying on it in the first place) because in hindsight I've had problems again and didn't even put two and two together. :/
What were you on the SCD for?
Ha! I found it!
SCD Science explained 3 ways; for kids, parents, and health care professionals: pecanbread.com/p/scdscience...
Maybe the Kids Version will help someone as much as it did me. Having a mental image of the 'goal' was very helpful for motivation and determination.
Btw, at the end is mention of SCD compliant yogurt. The author is incorrect about it not being available commercially. Our local health food store sells at least one brand of 24-hour cultured yogurt in glass quart jars. But I think most people do make it themselves.
Interestin thread, would like to follow
If you’re including ‘stopped progression’ then there are many of us on B1 that fall into this category. In my case I’ve not increased my meds for the last six years and now have fewer symptoms on it.
That's what I'm talking about Dap1948! 6 years of no progression is success! I take B1. 500 mg B1 HCL every morning. Thank you!
Bearing in mind the remission case mentioned by Dr Costantini himself and reading what you wrote, Thiamine could well be promoted as a prevention tool, when the first light symptoms pop up long years before the official diagnosis.
That is my plan. I just hope I'm getting the dose right. I'm going with 500 mg in the morning. Hopefully will never get to diagnosis.
I am sure you have heard my story already. Look at my website 'reverseparkinsons.net' and contact me.
Thank you John. I kind of like your fast walking for an hour protocol. It is a practical way to keep your heart rate (where should the heart rate be to create mitochondria) up for over 30 minutes. I may adopt this plan.
I need to contact you too, John. It seems like I did years ago I mean when I was first diagnosed but I can’t find what you sent me. I’ll try to remember to send you a message tomorrow. Thanks so much.
My Website is - reverseparkinsons.net
Hi. My website is - reverseparkinsons.net. I will send anything you desire.
Thank you so much!
I just watched a video about you John! Very inspiring!
John Pepper's Parkinson's Disease Journey
Thanks for the support. I wish you well!
I think it would be cool to be able to participate in a group that wants to be as healthy as we can be at our various stages: exercising, eating well, trying supplements, and keeping tabs on what we're doing, and reporting in to each other -- but not in a stressful, pressured way. I've wondered if I had to confess eating tons of sugar to my peers, if that would help stop me from this awful habit. I know that's kind of co-dependent LOL. We all want to be healthy, of course, but would we do better if we reported in and got specific encouragement? I suppose Facebook would work, but I have privacy concerns there. (I hate it when FB says I'm a member of such and such group 
.) (Although if it's a secret group, rather than private, FB doesn't list member. )Just a thought and I'm too inconsistent energy-wise to take charge, so I'm just putting it out there.
I like this idea Godiv. I've thought many times about creating a periodic group call where people can share their strategies and hopefully successes. I was not aware of secret FB groups. I will look into that.
Oh good. Let me know. I’m so glad you’re interested. Even if we don’t do Facebook Perhaps there’s another venue. But Facebook is nice. Probably visually more zippy than anything else.
We just need a name for the group. I have a rule that I don't talk smack to diseases, so "Beating Parkinson's" or anything like that is out. Everybody is welcome to chime in if interested.
I agree. I have to think about it. Holding hands for health LOL. I’m kidding; that’s my codependent title. I’ll think about it. It would be nice to have something like future health which is not a good name but some thing that implies we’re envisioning being healthier and helping each other, supporting each other. Not expecting a cure, but making the best of it I suppose. I’ll think about it also.
Oh I'm expecting a cure. It sounds so stupid, I know, but it is why I am here.
This should help with anybody's sugar issues: Food Industry's Secret Weapon (WHY Sugar is addictive & in 80% of Food)
OK thanks so much. It’s so strange I know it’s addictive, and know it’s bad for me, but I still eat it. Beginning to worry a little bit about maybe compulsive eating? Caused by go Cocoviri or my SSRI antidepressant? In the past I’ve been on SSRIs and just eaten like crazy. I don’t remember Zoloft having that effect before but I did just remember I used to take it with Wellbutrin which is a bit of an appetite suppressant for some people. Interesting thank you. You made me think.
Hi Bolt_Upright,
Just wondering about your story? I looked on your profile and it lists under active thyroid. I know you also are on a special diet similar to the Wahl’s diet. I was wondering when you were diagnosed with PD and what, if any protocol was prescribed by your neurologist?
Thank you PalmSprings, let me update my profile. I try to mention this as often as possible but the profile is a good place for it.
I have not been diagnosed with PK. I was diagnosed with REM Sleep Behavior Disorder.
If you Google that you will see I have a high likelihood of developing LBD, PD, or MSA. My neurologist told me I was doomed (but he said I had 10 good years left, so that was nice).
My neurologist wanted to put me on clonazepam for the RBD but I took a hard pass on that.
Before my neurologist told me I was doomed I was feeling as good as I'd ever felt (aside from fighting in my sleep sometimes), although my balance does seem to be slightly off and my left shoulder is always sore (hopefully it is"mouse arm").
I am trying to un-doom myself.
That is my story.
Thanks for your profile, I find it really helps to understand where people are along this journey of PD. Perspectives change with time.
I must be in the frantic search for a way out phase
Or the bargaining stage.
I hear you!
Are you in the same stage? Let's just stay there will we find a way out.
Have you tried melatonin for your sleep disorder? I take it for hypnagogic hallucinations in my sleep.
How much melatonin do you take Dap?
It would be great if my husband could have more restful sleep instead of fighting off attackers. I gave him melatonin up to 60 mg to help with nocturia. It was Xatral that helped tremendously with the nocturia so I have lowered it back to 10 mg since this month. B1 helped his lane discipline when driving, frozen facial muscles and choking on water/ food. He has been on B1 since Feb 2019 but this year he has slowed down and balance seems worse and I was constantly worried that he may fall and hurt himself. It only improved with the probiotic PS 128 when his driving became normal and he is more alert. You only realise it after you see the improvement. I also feel more confident leaving him to his own devices.
After Art’s post on B1 have increased his B1 to 200 mg (instead of 100 mg) and flushing niacin to 250 mg. Waiting to receive butyrex.
Also used coronet since 20 May. Been on it almost 2 months and he reports that he does not feel giddy when he gets up in the morning. I also increased his ubiquinol to 400 mg 2x a day.
In the meantime have increased his clostridium butyricum to 5 tablets 3 x a day in addition to his PS 128 before bed.
Yes, I take 10 mg of melatonin. It works. Thanks.
My list of interventions that may help:
• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/
• Mannitol parkinsonsnewstoday.com/202...
healthunlocked.com/cure-par...
• Cinnamon, extensively researched by Prof. Kalipada Pahan, PhD. My report healthunlocked.com/cure-par...
• Ambroxol healthunlocked.com/cure-par...
• Sulfurophane from broccoli seed, courtesy of our very own Albert Wright. Helps with nonmotor symptoms: patientresearcher.com/2021/...
If you have a "success story" please post video evidence of it.
A before and after video of you showing your improvement would be the best.
If you are concerned with privacy it is fine if you obscure your face.
An alternative to taking a video is to periodically take a "tap test".
See:
parkinsonsmeasurement.org/t...
And record the results over time as 'johntpm' has done here:
parkinsonsmeasurement.org/I...
I strongly encourage all PWP who think they can stop the progression of Parkinson's to make your "before" video or tap test now, so that you will be able to demonstrate the success once it become apparent.
25 success stories in this May 2021 AJH published research:
"Ambroxol hydrochloride is an oral mucolytic drug available over-the-counter for many years as cough medicine. In 2009 it was identified as a pharmacological chaperone for mutant glucocerebrosidase, albeit in a several-fold higher dose. Unfortunately, there have been no pharma-driven clinical trials to establish its use. Thus, real-world observational data are needed on the safety and efficacy of ambroxol for patients with Gaucher disease (GD) and GBA-Parkinson disease (GBA-PD). Clinicians treating patients with ambroxol for GD and GBA-PD were approached to collaborate in an investigator-initiated registry. Anonymized data were collected, including demographics, GD type, GD-specific therapy (when applicable), adverse events (AEs), and, when available, efficacy data. We report the data of the first 41 patients (25 females) at a median (range) age 17 (1.5–74) from 13 centers; 11 with GD type 1(four diagnosed with PD), 27 with neuronopathic GD (nGD), and three GBA mutation carriers with PD. The median (range) treatment period and maximum dose of ambroxol were 19 (1–76) months and 435 (75-1485) mg/day, respectively. One patient with type 2 GD died of her disease. No other severe AEs were reported. Twelve patients experienced AE, including minor bowel discomfort, cough, allergic reaction, mild proteinuria, dizziness and disease progression. Clinical benefits were reported in 25 patients, including stable or improved neurological status, increased physical activity, and reduced fatigue. Until the approval of specific therapies for nGD and disease-modification for GBA-PD, these preliminary data may be encouraging to physicians and patients who consider an off-label use of ambroxol."
onlinelibrary.wiley.com/doi...
Thanks DHPSR, More Ambroxol Success:
January 13, 2020
Ambroxol for the Treatment of Patients With Parkinson Disease With and Without Glucocerebrosidase Gene MutationsA Nonrandomized, Noncontrolled Trial
Stephen Mullin, PhD, MRCP1,2; Laura Smith, MSc1; Katherine Lee, MRes1; et al Gayle D’Souza, MSc3; Philip Woodgate, PhD3; Josh Elflein, MSc3; Jenny Hällqvist, BSc4; Marco Toffoli, MD1; Adam Streeter, PhD5; Joanne Hosking, PhD5; Wendy E. Heywood, PhD4; Rajeshree Khengar, PhD3; Philip Campbell, MRCP1; Jason Hehir, BSc6; Sarah Cable, BSc1; Kevin Mills, PhD4; Henrik Zetterberg, PhD, MD7,8,9,10; Patricia Limousin, PhD, MD1; Vincenzo Libri, MD, FRCP3; Tom Foltynie, PhD, MRCP1; Anthony H. V. Schapira, MD, DSc, FRCP, FMedSci1
Author Affiliations Article Information
JAMA Neurol. 2020;77(4):427-434. doi:10.1001/jamaneurol.2019.4611
jamanetwork.com/journals/ja...
Results Of the 18 participants (15 men [83.3%]; mean [SD] age, 60.2 [9.7] years) who completed the study, 17 (8 with GBA1 mutations and 9 without GBA1 mutations) were included in the primary analysis. Between days 0 and 186, a 156-ng/mL increase in the level of ambroxol in CSF (lower 95% confidence limit, 129 ng/mL; P < .001) was observed. The CSF GCase activity decreased by 19% (0.059 nmol/mL per hour; 95% CI, –0.115 to –0.002; P = .04). The ambroxol therapy was well tolerated, with no serious adverse events. An increase of 50 pg/mL (13%) in the CSF α-synuclein concentration (95% CI, 14-87; P = .01) and an increase of 88 ng/mol (35%) in the CSF GCase protein levels (95% CI, 40-137; P = .002) were observed. Mean (SD) scores on part 3 of the Movement Disorders Society Unified Parkinson Disease Rating Scale decreased (ie, improved) by 6.8 (7.1) points (95% CI, –10.4 to –3.1; P = .001). These changes were observed in patients with and without GBA1 mutations.
Conclusions and Relevance The study results suggest that ambroxol therapy was safe and well tolerated; CSF penetration and target engagement of ambroxol were achieved, and CSF α-synuclein levels were increased. Placebo-controlled clinical trials are needed to examine whether ambroxol therapy is associated with changes in the natural progression of PD.
Success Story: John Gillies, Antibiotics: 20 Jan, 2011
I wish I could find his current status
rt.com/news/power-intestina...
A few years ago, John Gillies – another patient who had to seek advice from Dr. Borody – had trouble picking up his grandchild. Every time he would have to wait for his Parkinson's disease to allow him to move. Miraculously, after Gillies was given antibiotics to treat constipation, his Parkinson's symptoms relinquished.Thomas Borody decided to put Gillies on antibiotics because he had found that constipation could be caused by an infection of the colon."He has now been seen by two neurologists, who cannot detect classic Parkinson's disease symptoms any more," Borody said, as quoted by New Scientist.His and other specialists’ observations suggest that many conditions, from Parkinson's to metabolic disorders, might be caused by abnormal changes in the microbes of the gut. If so, it might be possible to alleviate symptoms with antibiotics, or even fecal transplants.The idea that Parkinson's could be caused by bacteria echoes work by Heiko Braak and Kelly Del Tredici at the University of Ulm in Germany. In 2003, these neuroanatomists suggested in their article in the Journal of Neural Transmission that Parkinson's might be caused by a bug that breaks through the mucosal barrier of the GI tract and enters the central nervous system via the vagus nerve.Thomas Borody hypothesizes that a colon infection leads to a release of chemicals, or antigens, into the bloodstream, and that triggers an immune response. Unless something is done to clear the colon of these irritants, the immune response persists, eventually leading to an autoimmune disease.
Vitaliy Matveev, RT
That blog says anti-biotic treatment, but I also found this from 2012:
pubmed.ncbi.nlm.nih.gov/232...
These results are strengthened by the results of Borody's fecal transplants, after which in Parkinson patients showed a symptomatic improvement.
And this:
abc.net.au/news/2014-03-18/...
Controversially, Professor Borody believes the gut is the gateway for toxins to enter the body, triggering an array of seemingly unrelated diseases including rheumatoid arthritis, Parkinson's and autism.
He says he has been surprised many times when diseases far from the gut have eased or vanished following faecal microbiota transplantations.
"We've had a young person with rheumatoid arthritis and it went away. It was classic rheumatoid factor positive RA," he said.
Professor Borody also claims symptoms of Parkinson's eased in three patients treated for chronic constipation.
Not a cure, but definitely a success!
Parkinson's Pedaling with Nan by Nan Little (USA)
FYI:. Jan occasionally posts on this website.
How did I not lead with this success story? The only person I have found to actually recover from RBD/Early PD:
In a 72-year-old male RBD patient treated with 2 mg slow-release melatonin daily an increase in DA transporter density over successive years was documented. Moreover, the clinical and electrophysiologic signs of RBD disappeared after 6°months. In addition, no signs of PD were present 4°years after the first examination, indicating the possible neuroprotective role for melatonin in synucleinopathy (Kunz and Bes, 2018).
Published online 2021 Apr 15.
Daily bedtime administration of 3–12 mg of melatonin has been demonstrated effective in RDB treatment and may halt neurodegeneration to PD.
ncbi.nlm.nih.gov/pmc/articl...
2018 Jun 1.
Twenty Years After: Another Case Report of Melatonin Effects on REM Sleep Behavior Disorder, Using Serial Dopamine Transporter Imaging
Dieter Kunz 1 2 , Frederik Bes 1 2
A 72-year-old man was clinically suspected to suffer from PD in 2011. PD and RBD diagnoses were confirmed by DaTSCAN and PSG. 6-months after melatonin treatment, clinical signs of RBD were absent. Control PSG in 2014 confirmed normalized REM sleep with atonia. DaTSCANs performed in 2013 and 2015 indicated normalization of DA transporter density.
pubmed.ncbi.nlm.nih.gov/298...
10 mg of Melatonin works for me. (together with about 2mg of Mannitol and a dash of Vitamin B1).
Thanks to rescuema for this true success:
A potential case of remissionof Parkinson’s disease
Karishma Smart*, Raymon Durso, Jonathan Morgan and Patrick McNamara
DOI 10.1515/jcim-2016-0019Received March 14, 2016; accepted May 24, 2016;previously published online July 5, 2016
mindandculture.org/wordpres...
Abstract:We present the case of a 78-year-old male who,16 years ago, was diagnosed with Parkinson’s disease(PD) by a neurologist. He initially presented with left-hand tremor, stooped posture, shuffling gait, and fre-quent falls, which eventually progressed to bilateralmotor symptoms after 3 years. Since 2012, his symptomsand signs have almost completely remitted, and he hasbeen off all pharmacotherapy for that time. The accuracyof the initial PD diagnosis is supported by an appropriateclinical presentation, history of positive response toSinemet, and an abnormal SPECT DaT scan; thus thiscase suggests the possibility of remission of symptomsin some patients. We propose that the patient’s longhistory of meditation practice may have been one con-tributing factor of this improvement as meditation hasbeen shown to release dopamine in the striatum.
Is John Coleman legit? I don't know.
Who was the first person to succeed in reversing all symptoms of their Parkinson’s disease? We obviously cannot know for sure, but naturopath doctor John Coleman, ND, was one of the first - if not the first to reverse his own Parkinson’s symptoms during the mid 1990’s. What is the story behind John Coleman’s recovery? How in the world did he figure out how to heal his neurological symptoms when no one else had succeeded before him? What therapies helped his recovery? Which ones did not? John answers these and other questions during this remarkable interview with him.
This interview with John Coleman ND was originally aired on Parkinsons Recovery Radio in 2010. You will be surprised at his revelations about what made the most difference to the success of his recovery in this interview. John is the author of Stop Parkin’ and Start Livin‘.
Chris Lacey?
CHRIS Lacey's road back to health has been an ongoing personal experiment.
Starting the Marty Hinz Amino Acid Protocol. New Dr.
IF YOU HAVE BEEN READING, BUT NOT POSTING, THIS IS FOR YOU.
