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URSODIOL - A Potential New Drug for PD

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Greetings and Salutations


It has been a while since I posted here. My DW has not been well and I've had some non-PD related issues of my own to deal with.

Firstly, I was not getting any forum e-mails for the past month or two. According to the Forum Admin, "
Your email address was removed from your Forum user account.  We remove email addresses whenever we receive alerts that emails have failed.  I have re-entered your email address.  You should start receiving your email alerts again.
" So if anyone had tried to contact me using the forum's messaging service, I would not have received it. Remember, you can always PM me at mrfritz@comcast.net

I read Research Fiend's posting about her DH's improvement since starting TUDCA. I cannot express just how good it makes me feel reading these stories. Thank you for taking the time to post your results.

I want to take a moment to restate that when it comes to PD symptom reduction, UDCA/TUDCA does not work for everyone. For those for whom it does work, each person's results may differ. The more advanced your disease is, the less likely you are to see any benefit. However, the one big unknown is with PD's progression. We believe that it does slow progression and nothing in my personal experience or that of other posters leads me to believe otherwise. So, it is possible that UDCA/TUDCA may not reduce your symptoms but it may still slow its progression. There is just no known way to tell.

Finally, after having been on 1200mg of Ursodiol (UDCA) for 2½ years, let me update you on my condition which, for the most part, has improved:


  • I do seem to have a little more sporadic dominate right hand tremor when holding or carrying a glass, eating with a fork or mixing something. Nothing bad. Just a little disconcerting.


  • Most notable is my RBD (Rapid eye movement sleep Behavior Disorder). I still occasionally thrash about and yell. But it is no longer an everyday occurrence. It’s been months since I last recall fighting or hitting anyone or anything.


  • I had been, for the most part, housebound due to Nocturia with extreme urgency caused by a grossly enlarged prostate compounded by my PD. I was waking up every 45 minutes and had to run fast. After being on UDCA, my symtoms improved to where I was waking up every 2 hours or so. 11 years ago I had a green laser procedure which worked wonders for me. However, my Urologist told me that I am now contraindicated for this procedure because of my PD. As always, I did my research and found that todays thinking has changed. I provided my Urologist with the studies and he agreed to do the procedure. Today (6 months later) I am good for 2-4 hours during the day (if I don't over-indulge on coffee), I sleep through the night and I do not have any leakage issues. I no longer plan my excursions around bathroom locations. Life is now greatly improved to the point of being almost normal.


Well, that’s all I have to say for the moment. Hope to hear from you soon.



Edited by MrFritz
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Sorry for not posting sooner. My DW is back in the hospital again so my mind is elsewhere and my time more limited. I expect her to be home tomorrow or by Monday at the latest.


Recently, I have seen newbies posting in the forum as well as asking questions in Ask the Doctor. Today, one of the Ask the Doctor questions relates to the subject on this post. So for the newbies, do your homework and consider getting on the this bandwagon. For many, it’s a much better ride then the path you’re currently on.


As I noted some time ago, after having stopped all of my PD meds for 1 month while remaining on UDCA, my pre-UDCA tremors returned albeit at a significantly lower intensity. Now after 2½ years on the same prescription dosage + UDCA with zero change in symptoms, I have recently noted an increase in my body tremor when tired or stressed and a tremor in my dominate right hand when walking while holding something or performing a repetitive motion. These tremors annoy me greatly although they are neither bad nor constant. I had hoped that the UDCA would stop the progression of my PD.


As I have said before, I do not recommend self-experimentation. However, I am willing to experiment on myself provided that what I do is safe for me. Currently I take 1200mg of UDCA per day (4 doses of 300mg). So I tried a 9 day regimen of 2400mg per day. I think I felt a very slight improvement. But this may have just been wishful thinking. Anyway, the difference (if any) was not significant enough. So, I reverted back to my normal dosage of 1200mg per day.


In a recent e-mail conversation with Jon (jds6958), he referred me to recent article entitle “Natural molecule NAC could benefit patients with Parkinson's disease.”

I read the article and found it interesting. Here are some links.:

It happened that a year ago I had tried taking NAC and a few other supplements along with my PD meds and UDCA. At that time, I did not notice any difference at all. So I stopped taking the supplements. This time, I started taking 2400mg of NAC in 4 doses. Although it did not relieve my new tremors, I did notice enough of a reduction to indicate that it is doing something positive. This prompted me to pass this on to you.


I will now continue to take NAC. Not so much to relieve or ease symptoms but primarily in a further effort to slow the progression of my PD. I don’t recommend brand name products. However, the brand of NAC I’m using is NOW’s brand of NAC which is available in 600mg capsules. My current recommendation is to take 1200mg [T]UDCA plus 2400mg NAC daily in addition to your currently prescribed drugs.



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Fred, When I told my MDS that I am taking NAC, he told me to keep taking it. There is a clinical trial underway to test if it slows progression. I am currently taking the NOW brand as well. I take 3000 mg a day. Not sure if it is slowing progression, but zero side effects. I pray it's working.

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Hi Penny. Thanks for posting.




Unlike PD symptoms, there is no way for us PWP's to ascertain any change in progression. So, we do for ourselves what we think may help without causing us any harm.



Just like I did with Ursodiol / [T]UDCA, I read what research was available and made a decision. Considering my condition way back then, it was the best decision I ever made. Had I done otherwise, I think that by now I’d be looking at having a DBS implant.



As for how much NAC one should take, I don’t have a clue and I don’t think anyone really does. It was Jon who recommended that I take 2400mg/day which is what I had tried some time ago with other additional supplements.



Are you or have you tried [T]UDCA? If so, what were your results?





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I just received a PM from Steve to which I am replying publicly in case others have interest.

Steve asked: “Its been awhile since your last post, and I was wondering how the ursodiol is working?”


The most useful answer is as follows:


When I first started taking Ursodiol (UDCA), it eliminated almost all of my PD symptoms including tremors. I hoped that it would also stem any further progression. Numerous others have tried both UDCA and TUDCA with similar but varying results. Everybody is different.  For a small minority, it did not work at all. Nobody reported any negative experience other than minor stomach issues which ceased upon stopping. Some have posted their experiences in this thread.


My unscientific analyses of our combined experiences bring me to the following conclusions:

  • [T]UDCA does not replace your currently prescribed medications.
  • [T]UDCA works to reduce symptoms for a significant percentage of PWP.
  • The sooner one starts after being dx’ed, the greater the benefit gained.
  • PWP who are more advanced may see little if any benefit.
  • We believe that [T]UDCA slows progression but this cannot be established or measured by us.
  • If you stop [T]UDCA, all prior symptoms will return full-force.


Originally, in addition to other tremors and symptoms, I had a minor body (torso) tremor most notable at night or when physically/mentally stressed as well as a tremor in my dominate right hand when holding a glass while walking or performing a repetitive motion. Now, 2½ years after I started UDCA, these two tremors have returned but to a significantly lessor degree. Thankfully, none of my other symptoms have returned. The bottom line is that UDCA is still working for me and I will continue taking UDCA into the foreseeable future.


If it works for you, [T]UDCA benefit is almost immediate and lasting. As for the other supplements, I am taking 2400mg/day of NAC and had previously tried other supplements. But I cannot say for sure if they are worthwhile. If you have any questions, please feel free to post or PM me.




Edited by MrFritz

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I spend a lot of time researching PD, to include reading all the PD forums and I find this thread very disheartening.  I have no doubt that everyone on here is of good faith and have the other’s best interest at heart, but some have gone off the rails re how they treat those with whom they disagree.


The primary reason anyone reads health forums is to find out what other people are doing that works for them that is not evidence based, that the FDA has not approved, and is off label -- because the FDA has approved so precious little for PWP, we don’t need forums for that.  


There is a small group who feel one should not do anything that isn’t evidence based and that one should only do what their doctor agrees with.


When I post comments on PD forums, I don’t use the word “should.”  I don’t know what is best for others.  I only post what I do and why.


By advocating for URDODIOL, MrFritz is not controlling anyone’s decisions, but if his detractors were to succeed in getting this thread blocked, they would be controlling other people’s decisions.  When you control what one person writes, you control what another person reads and, therefore, what they think. 


That all posts should be backed up by evidence, in my opinion, might needlessly allow one’s condition to worsen.  Let me use as an example a drug that has not been discussed on this thread, why only evidenced bases therapies should be used is a disservice to PWP.


Isradipine is an old, not very good drug recognized by the FDA in 1990 as safe and effective for hypertension in.  Isradipine is completing 3 years of phase III clinical trials in 57 locations in Canada and US to see if it slows the progression of PD.  That means hundreds of PD neurologists, MDs, molecular biologists, and executives of universities, governments, and PD foundations have decided to spend tens of millions of dollars betting that Irasdipine will be recognized by the FDA as safe and effective in slowing Parkinson’s.  Since the trial is not yet complete, it is not “evidence,” but its place in the process is good enough for me to take it now – because the FDA approval is many years away and the difference between slowing my progression now instead of 5 years from will change my life.


I learned about Isradipine on another PD forum.  If some people were to succeed in locking or removing threads from forums, I would never have learned about this and therefore would have been deprived on making my own decisions as to what is best for me. I’m taking Isradipine, but I have hypertension.  I would take even if I didn’t have hypertension.  However, I don’t have an opinion as to whether others should take it or not take it.  Others can do their own research, make and be responsible for their own decisions.  


Another example of compounds that may be beneficial and may not ever be evidenced based to the degree drugs are, are supplements.


One of the other PD forums I monitor is an international forum where many of the leading participants are molecular biologists and other health care researchers and scientists, neurologists, and MDs, etc. They share research data, personal experiences and have in-depth discussions re meds and supplements.


Supplements are not subject to FDA approval and get a small fraction of the research as do manufactured drugs, but there is no question that some supplements benefit some people.


Some of the more common supplements discussed on PD forums are;


N-acetyl cysteine (NAC)




Artichoke extract

Grape Seed extract

Broccoli extract

Green Tea extract


B Vitamin Complex, C, D, and E


I3C (Indole-3-carbinol)

Milk Thistle extract

Probiotics Complex with Acidophilis



I’ve done research on these and I take some of them.  I take all supplement content with a big helping of salt because a lot of the supplement content are websites selling supplements, there are no government regulations as to quality or purity and often few competent clinical trials.  I do not have an opinion as to whether anyone else take or not take supplements.


To research these, Google, for example, “trans-resveratrol Parkinson’s forums.”


A Parkinson’s blogger I like is Frank Church.  A medical school and undergraduate biology educator, biomedical science researcher and part-time golfer.  “My diagnosis of Parkinson's disease, combined with my career in science and education, allows me the ultimate "teachable moment". Thus, the theme of this blog is my journey with Parkinson's.”




His protocol;




Contrary to my assertion that I don’t give advice, I have some, albeit non-medical.


If you have PD, and want to be less anxious, live longer, be healthier, and happier, quit watching so much TV, especially cable news, become a courteous driver, quit drinking, exercise a lot, especially vigorous bicycle pedaling, eat right (perhaps the Mediterranean diet) and volunteer to enrich the lives of those less fortunate.


My post here today is meant only as food for thought.


I wish you all the very best on your journey with Parkinson’s.

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I just came across this abstract. The full article is not available yet. Very interesting. There may yet be hope yet for PWP.






Small Molecules Efficiently Reprogram Human Astroglial Cells into Functional Neurons.

Zhang L1, Yin JC1, Yeh H1, Ma NX1, Lee G1, Chen XA2, Wang Y2, Lin L3, Chen L3, Jin P3, Wu GY4, Chen G5.


Author information


1Department of Biology, Huck Institutes of Life Sciences, Pennsylvania State University, University Park, PA 16802, USA.

2Department of Biochemistry and Molecular Biology, Pennsylvania State University, University Park, PA 16802, USA.

3Department of Human Genetics, Emory University School of Medicine, Whitehead Research Building, Room 323, 615 Michael Street, Atlanta, GA 30322, USA.

4Department of Biology, Huck Institutes of Life Sciences, Pennsylvania State University, University Park, PA 16802, USA; School of Life Science, South China Normal University,    Guangzhou 510631, China. Electronic address: gangyiwu1@gmail.com.

5Department of Biology, Huck Institutes of Life Sciences, Pennsylvania State University, University Park, PA 16802, USA. Electronic address: gongchen@psu.edu.




We have recently demonstrated that reactive glial cells can be directly reprogrammed into functional neurons by a single neural transcription factor, NeuroD1. Here we report that a combination of small molecules can also reprogram human astrocytes in culture into fully functional neurons. We demonstrate that sequential exposure of human astrocytes to a cocktail of nine small molecules that inhibit glial but activate neuronal signaling pathways can successfully reprogram astrocytes into neurons in 8-10 days. This chemical reprogramming is mediated through epigenetic regulation and involves transcriptional activation of NEUROD1 and NEUROGENIN2. The human astrocyte-converted neurons can survive for >5 months in culture and form functional synaptic networks with synchronous burst activities. The chemically reprogrammed human neurons can also survive for >1 month in the mouse brain in vivo and integrate into local circuits. Our study opens a new avenue using chemical compounds to reprogram reactive glial cells into functional neurons.


Copyright © 2015 Elsevier Inc. All rights reserved.

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* * * * * * * * * * * * * * * * * * * * *


Sorry for not updating this thread. My wife has been ill for the past year so I have been busy and my thoughts run elsewhere.


For any newbies who may be reading this for the first time, I started this thread on December 4, 2013 to tell other people with Parkinson’s (PD) about my life-altering results with Ursodiol (UDCA & TUDCA). If you have a plethora of time, you can read this thread from its inception. But let me save you the trouble by providing you with a quick synopsis.


UDCA (Ursodeoxycholic Acid) and TUDCA (Tauroursodeoxycholic acid) are synthesized naturally occurring bile acids. Bile acid has been used in Chinese medicine to treat neurological and other disorders for thousands of years. UDCA (Ursodiol & Urso) is considered a prescription drug in English speaking countries (US, UK, AU & CA). In most other countries, it is a non-prescription over-the-counter drug. TUDCA is a non-prescription over-the-counter health food supplement. Both are FDA approved and long term (20 year) studies of UDCA show that it is safe to use at our recommended dosage. People who have taken both UDCA and TUDCA report no difference in results. A note of caution regarding TUDCA: There have been some reports regarding the efficacy of some brands of TUDCA. As a non-prescription supplement, there are no standards or controls. Caveat emptor.


I had a number of neurological issues which, by the summer 2012, had become severe enough where they started to interfere with my daily life. My Internist thought I had Essential Tremor so I sought a second opinion with the hope that there was a treatment. I knew nothing about Essential Tremor or Parkinson’s. My primary issues were tremors, balance, gait and vision which, in addition to other daily tasks, interfered with my ability to write, use my computer’s mouse, drive safely and walk without tripping due to dragging my toes. I had other issues, including REM Sleep Behavior Disorder (RBD) and Restless Leg Syndrome (RLS) which, at that moment, I did not know was related to PD. I went to a Neurologist who diagnosed me with PD and prescribed 1mg of Azelect daily which did not help at all. On my next visit, my symptoms had advanced so he added 4 tablets of 25/100 Sinemet. This too did not reduce or relieve my symptoms. In September of 2012, I came across an article in Brain entitled “Ursocholanic acid rescues mitochondrial function in common forms of familial Parkinson’s disease” ( see: http://brain.oxfordjournals.org/content/brain/early/2013/09/02/brain.awt224.full.pdf ). This study spoke about a number of substances which may be beneficial in the treatment of Parkinson’s. On my next visit to my Neurologist, I gave him a copy of the article which he had not read. He increased my Sinemet dosage from 4 to 6 tablets per day. I asked him if he would prescribe Ursodiol (UDCA). He said he wanted to read the article first. By the time I returned home, his office called to tell me he would prescribe Ursodiol. Subsequently, when I asked him why he approved this, he reply was that its use wouldn’t cause me any harm. It took a while for me to find a reasonably priced pharmacy. During that time, the additional Sinemet still did not help to reduce my tremors. On the morning of October 16, 2013 I took my first dose of Ursodiol. 36 hours later, I was almost 100% tremor free. In addition, my gait and toe dragging also normalized. During the course of time, my RBD resolved. Although I still occasionally have vivid dreams wherein I may act out, they are now rare events and no longer seem to be violent. I still have RLS.


Within this thread are posts from other people who have also had similar positive experiences with UDCA or TUDCA. I have also received many private e-mails affirming similar results but only one for which UDCA did not help. I do not make any effort to maintain contact with most of these people so I cannot tell you how they are doing or if they are still on this regimen. If they are reading this, I encourage them to post their results and/or current status. There is a new website that appears to have a very substantial following. This site sells TUDCA combined with other supplements to treat Parkinson’s. So the word is still spreading without my help.


Now, let me tell you how I’m doing and what you can expect if you try UDCA or TUDCA.

  • UDCA & TUDCA appear to work equally well.
  • A very small number of patients will not respond to this treatment.
  • Treatment appears to be most effective for tremors and less effective in treating rigidity.
  • The earlier one starts, the greater the results. Advanced patients may not see any benefit.
  • My recommended dose is 300mg after each meal and at bedtime (4 doses per day).
  • During the first 2½ years, there has been no change in my condition.
  • I have seen a slight increase in my body tremor and right hand “action” tremor. But these are not constant and they are still significantly far less than they were 3 years ago. My other symptoms, thankfully, still remain resolved.
  • I have not experienced any negative reactions related to this regimen. I just had a complete blood workup which showed that my cholesterol, kidney and liver functions are still normal. Both my Internist and Neurologist are pleased with my results and want me to continue.


UDCA is considered an “Off-Label” drug for the treatment of Parkinson’s. As such, many doctors will not prescribe it. However, it is legal for them to do so. Neither UDCA nor TUDCA is cheap. But, if it provides symptom relief and/or slows progression, it is worth the cost.


Neither UDCA nor TUDCA is a replacement for your currently prescribed medications. Do not stop or reduce your currently prescribed medications.


NOTE TO VETERANS: My VA Internest tells me that if a VA Neurologist prescribes Ursodiol for treating a PD patient, then URSODIOL IS NOT AN “OFF-LABEL” DRUG AT THE VA PHARMACY where a 90 day supply of Ursodiol is only $24. I’m just passing this on but I can’t confirm this.


To those of you who have been helped by this thread, rather than e-mailing me, please post your experience here for others to see. There is no better feeling then to know that you have helped another person. Please help to spread the love.


As always, you can post your questions and comments here or e-mail me at mrfritz@comcast.net



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Ursodiol Clinical Trial is Underway

Brain Bioenergetics in Parkinson's Disease and Response to Repeated Oral UDCA Treatment



Finally, there is a clinical trial for Ursodiol (UDCA) as a treatment for Parkinson’s Disease and its results should be available soon (May 2018). This clinical trial is using an UDCA dosage of 50mg/kg/day which is approximately 4 times our recommended dose of 1200mg/day in 4 doses.

I received an interesting email recently from the founder of a site that promotes a TUDCA product for PD. He told me “It is amazing how well it works for those with PD. We have about a 82% success rate after three months (less than 5% at one month). Those in PD stages 1-3 seem to fair the best. We don’t recommend it for those in stages 4-5 as that degree of progression seems to defeat the capabilities” We have also noted that [T]UDCA is less effective for rigidity than it is for tremors. Regardless as to your condition, it is well worth the small expense to give it a try.



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1 hour ago, miracleseeker said:

Hi Fred,

How are you doing?  Do you feel your PD has progressed since 2013?


Hi and thanks for inquiring. So now another year has gone by and I'm still here with all of my friends and a few who may not fall into that category. But I enjoy the company of all anyway. I must admit that I do miss those feisty and sometimes nasty "discussions."

Since I first posted here a long time ago, my health has remained unchanged except for my spinal issues (L1 through L5 herniated and bulging discs) which causes neuropathy in my feet. I recently I started taking Gabapentin but have now switched over to Lyrica. More about that later. What you really want to know is if my PD has changed while on UDCA.

This year I have noted a very slight increase in 2 tremors. The first tremor is what I call an "action" tremor. It only affects my dominate right hand. If I'm writing, performing a repetitive motion or walking while holding a glass of water, a tremor may ensue which is difficult to stop. The second tremor is a whole body tremor which is most notable while sitting still or at rest in bed. Neither of these tremors are constant nor severe. However, their frequency and severity did increase noticeably when I started taking Gabapentin for my neuropathy. When I changed to Lyrica, things returned to "normal." It is important to note that my current tremors are just a minor annoyance as compared to my pre-UDCA symptoms which included nightly violent fights with all sorts of phantoms (RBD: Rapid Eye Movement Sleep Behavior Disorder). Now, RBD is a rare and non-violent occurrence. I understand that many of us (PWP) suffer from this and the prescribed meds to treat it are really bad news.

So there you have it. I've been on UDCA since October of 2013 and noted a major (almost complete) diminishment of my PD symptoms which, for the most part, have not changed. I only keep in touch with one other long time user who reports the same. I wouldn't think of going 6 feet under without my 90 day supply. That's how confident I am in its miraculous properties.




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It appears that it is time for the annual (T)UDCA reunion. I hope all are doing well.

I have been taking TUDCA since November 27th, 2014, about 6 months after my Parkinson's diagnosis.  I started with 1,000mg of TUDCA plus an assortment of other supplements for alpha synuclein aggregation, neuro inflammation, and neuro oxidation.

I regressed about 1-2 years of symptoms, and would only really experience PD symptoms when tired, stressed, or sick (or God forbid all three). I was no longer on my small dosage of Sinemet CR. After some time doing that, I began just taking Restore Gold (4 caps 4x per day), which has TUDCA and six other ingredients. This really simplified the number of pills I took per day, as well as the expense. This increased my TUDCA daily dosage to 1,200mg per day. After about six months, I was not experiencing any symptoms even when tired, stressed or sick.

About four months ago, I started to notice some weakness in my left hand when typing and an occasional slight tremor. I was not noticing any of my other PD symptoms (slight gate, fatigue, difficulty swallowing, difficulty sleeping, etc.)...just that slight tremor.  I increased my Restore Gold to 26 caps per day. Since I am so young (nearly 39), I don't want any PD progression. That seems to help more at that dosage, which brings me to almost 2,000mg of TUDCA daily. I still have no symptoms. It will be three years this November.

I have seen TUDCA have just as good results with those just taking 1,200mg per day.

Here are some examples:





But, now with weight lifting and being 6' 3" my body mass is more, so I think I need more TUDCA than most.

Along with Restore Gold I also take Omega 3, PQQ, and Resveratrol...plus some other supplements to support fitness goals.

I no longer have Restless Leg Syndrome. That was very frustrating and I am glad it is gone.

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1 hour ago, jds6958 said:

But, now with weight lifting and being 6' 3" my body mass is more, so I think I need more TUDCA than most.

Hi Jon,

Great to see you're still on the forum. I appreciated reading your update. Thanks for posting.

Some time ago, Dr. Oliver Bandmann told me that he thought that a significantly higher dosage of [T]UDCA (higher than 1200mg/day) would be required to stem PD's progression. Alas, he did not indicate what dosage he had in mind.

I found no noticeable benefit beyond 1200mg/day and you at 2000mg/day. I guess the right answer is to experiment within reason to find the dosage that works best for ourselves keeping in mind that, in this case, more may be better. But I would not recommend anything less than 1000 mg/day. However, I do question whether or not body mass factors into the equation. With [T]UDCA, we are treating the brain and brain mass is typically constant in adults regardless as to stature. Just my uneducated thought.



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This is an absolute must read if you want to understand Parkinson’s Disease and the current state of research.



The Science of Parkinson's disease

Information about Parkinson's disease provided by scientists doing the research


May 28, 2017

Sheffield: flies, fish and a Tigar


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HI Fred!

Yeah, I know, long time, no hear. ;)

Time for a long, overdue update of my own. But first, found the above article you posted back in June of interest since I've recently started a "plant-based" diet. While the "good"/"bad" food list given includes fish and poultry, the bulk of it is plant-based, which eliminates all meat and dairy from one's diet. I think I know what Dr. Gregor would say to that (a proponant of plant-based diets to treat diseases), that the fish and chicken are there because most of the people eating it were also eating a lot of plants, offsetting any negative reactions of the other. Also, most would say to avoid oil in general. Anyway, plenty of rabbit trails to go there and I don't have time right now to do so. Just wanted to indicate that I've been doing a plant-based diet for almost a month now. More on that in a bit.

What I wanted to relate to you and any reading this thread, is my recent experience. As anyone who has read through these pages would know, I started taking TUCDA back in Feb. 2015. As I documented at the time, I noticed within three to five days of taking it, dramatic improvements in several areas such as tremors, cogwheel motions, surprisingly: voice, gait, etc. I took it faithfully, at a 1000 mg/day does, one 250 mg pill 4x/day up through the end of 2016. During that time, my PD did progress, but it was in direct response to discontinuing Amantadine. The first time to get off it in preparation for doing a clinical trial on Amantadine ER (which I believe was recently approved by the FDA) at the end of 2015. At the time I was taking 3 100/25 mg Sinamet pills a day. I had to double it after that. I'm pretty sure I was taking the highest dose of Amantadine on the study because my side-effects were so much stronger than they were on my prescribed dose. So much so, I was about to call it quits on the study as it was affecting my vision. But the study beat me to it, ending it due to lack of participation (they had another long-term concurrent study going on that is obviously what the approval was based on). So when I ended that medication in April 2016, despite tirating off it, I ended up needing to go to taking my 2 pills 4x/day. So I was getting 200 mg of levidopa 4x/day at that point.

At the beginning of this year, our finances took a big hit. We were struggling to pay the mortgage and groceries. Needless to say, it became near impossible to have the money to continue my TUCDA habit. So I ended up getting off them. I can't say what all negative effect that had. For one, by that point, I'd been on a pretty intense workout schedule. Even became a licensed Zumba instructor in January. So a certain % of my lack of progression save the two instances mentioned above is due to my efficient cardio condition. My resting heart rate is in the upper 40s, thanks to Zumba and Body Step. Consequently, whatever increase in symptoms that happened then were somewhat mitigated by my much better physical condition than I had in Feb. 2015 when I first started taking TUCDA. Also, I sort of didn't want to know, so I didn't pay a lot of attention to it.

Despite that, in looking back, there were signs my progression sped up, and symptoms got worse. My voice wasn't as solid, and in March, I was retired as a chanter. In July and August, I had begun to wonder whether I was any use singing in the choir because I couldn't get any low notes to be solid or have any volume. I was about to retire myself from the choir. Additionally, my symptoms worsened enough that by May or June I had to start taking 250 mg of Sinamet 4x/day. In Aug. I had increased that up to 375 mg as my off time was becoming very "off" and difficult.

That's when it dawned on me, toward the end of Aug. Aug 1st my Medicare from the disability finally kicked in. Prescriptions I was paying around $ 100/month for suddenly dropped to costing me $15. I realized I could justify getting TUCDA again. So I ordered some and have been taking 1000mg/day during the month of Sept. Bottom line, an immediate improvement in voice consistency and volume and hitting the lower notes, just as happened in 2015. The big symptom change I notices is that my off times became much better. However, my dyskinesia increased, indicating I was taking too much levidopa. So I cut back to taking 1 250 mg pill 4x/day, and it didn't worsen my symptoms. Been on that dose most of the month. The dyskinesia is still there, but not as bad.

One note that may play into this, and it dovetails with the article you posted. Beginning of this year I started a ketogenic diet, which in a small clinical trial had shown improvement in people with PD. I think there was 12 or 15 people in that study. I decided to give it a spin. I was on that diet until the beginning of this month. Due to my doctor pointing me to Dr. Gregor's website, nutritonfacts.org, I became convinced that the ketogenic diet was not the way to go, that numerous studies show cultures high in eating meat have ultra high rates of heart disease (in the US, it has been the #1 cause of death for many years with cancer right behind it), whereas in cultures that only eat meat on rare occasions but mostly eat plants, they have virtually no heart disease. All based on scientific studies. So right about the time I started taking the TUCDA again, I also switched my diet from ketogenic to plant-based.

I think the benefits from changing the diet would not have been as sudden, but would only now be showing up, or maybe a week ago. Most all the positive symptom decreases happened within the one week span. But, it is also clear that I showed definite signs that my disease progressed at a faster pace since Jan than before I stopped taking TUCDA, despite my better condition physically. The only question mark is how much of a role did the ketogenic diet play in that progression since it encouraged eating meat. Dr. Gregor blames growth hormones, which he says infects all meat, even organic meats because it has been so widely used, and the increase in saturated fats. However, I don't think the ketogenic diet would be as negatively affected by saturated fats. Simply because  your body is burning them for fuel. They don't get stored or left free to float  around in your bloodstream like teens in a gang looking to cause mischief. I was eating around 3000 calories a day, 70% of it coming from fat, much of it saturated (a cup of heavy cream, several Tbs. butter, along with the meat, and 3-6 eggs each day) left me staying around 147-150 lbs. without dropping any further. My EKG at the end of Aug. showed a healthy heart and my blood pressure has improved, falling in the 108-118 / 60-70 range. But if you're burning carbs, which most meat eaters are, those fats don't have anything else to do but either hibernate in giant fat cities or roam the vessels looking for trouble.

So what part of the progression was due to the diet and what was due to the absence of TUCDA I can't know. What I do know is for those few months, my symptoms did progress more rapidly. And upon resumption of TUCDA, improved once again, too fast to be attributed to the diet change.

Now for the other piece of this puzzle. Since last year, my MDS and I have been talking of getting DBS done once my Medicare kicked in. Well, it is happening this week. Wed. at 2:15 pm CDT to be precise. It is my hope that with this surgery, I can get off my meds (at least reduce them enough I no longer have dyskinesia). But in any event, I plan on continuing the TUCDA in the hopes that between DBS and TUCDA I can have a few more years of feeling "normal" most of the time. As well the exercise.

If anyone is interested in my DBS experience, I'll be doing a daily post on my blog recording my experiences through to the first programming on 10/10.

Blog: https://rickspdjourney.blogspot.com

Subscribe via email: https://feedburner.google.com/fb/a/mailverify?uri=blogspot/VqTkN&loc=en_US

That's my update! Thanks.


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So, I'm still trying to understand what TUDCA is claimed to do.  Rick was only diagnosed 4 years ago and in that short time, despite taking TUDCA, has symptoms that have rapidly progressed.  He is taking a large dose of Sinemet and has dyskinesia.  His symptoms are so bad that he is having brain surgery.  How exactly can anyone claim that this is a victory for TUDCA?

Can anyone say in plain English what TUDCA is claimed to do?  Obviously, it didn't do a good job slowing progression for Rick.  Fred's symptoms got worse when he tried to lower his Sinemet dose, despite taking UDCA.  What is the claim?  TUDCA does.......what?

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I'm also curious as to what this drug actually is supposed to do. It looks like Rick's PD has progressed rather rapidly even though he's taking a lot of pills.


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Hi folks. First, a little housekeeping.

To Marc: Thanks for the private email. Truly appreciated the updated info. Sorry I haven't given you a proper reply. Read on as to why.

To Rick: Many thanks for that long overdue update. I read your blog so I knew you went off TUDCA and were considering DBS but I never understood the why of it. Now I do. Please keep us posted. We'll keep you in our prayers.

To: PatriotM & DaveN: After all of your posts in this thread, how could you not know what [T]UDCA is supposed to do. Just read my first post from December 2013.

A Note About Me: I've been quiet recently because I have not been well. Soon, I will be posting about this because it is applicable to both this thread as well as to everyone else in this forum. Suffice it to say that I recently went off of ALL medications and supplements (including UDCA) and had a minor bout with a self inflicted psychosis. Today, I am back on all meds and supplements, doing much better but still recovering. I'll try to post a full accounting soon.

Stay well,


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Hi Patriot,

My progression while on TUCDA during the end of 2015 and 2016 were a direct result of getting off Amantadine. It is well known that people who get off of it, if not done right, can have their symptoms increase. The first time I didn't tyrate, and the second time was from a high dose while on the clinical trial as I detailed. Other than those two instances, I didn't progress.

The other progressions I had occurred while I was off TUCDA, during most of this year. If anything, it lends support that TUCDA was slowing my progression down. But there is no way to know for sure.  But my experience is more support that it does slow progression than that it doesn't. And, no one has claimed that it will stop progression altogether. We'll have to wait for clinical trials to know the truth on that. 

Aside from that, when I'm on it, my symptoms are better. When I'm off it, they get worse, as I've detailed elsewhere. But my neurologist and I have been talking about getting DBS for a long time because even early on, I have a very small "sweet spot" between symptoms and dyskinesia, so that I have either one or the other, with only about an hour to an hour and a half of "normal" time for each dose. That is the main reason for the DBS, so I can get off this medication roller coaster and feel "normal" most of the time, and I can get part of my life back and have several more good years before this disease forces my wife into caretaker mode.

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I am unaware of Amantadine little known fact.  Can you point to some documentation or studies indicating that Amantadine will contribute to an increase of symptoms or accelerated progression?



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