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URSODIOL - A Potential New Drug for PD

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#241 geminik88

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Posted 16 December 2014 - 04:14 PM

When are you planning on starting, jon?

#242 MrFritz

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Posted 16 December 2014 - 05:52 PM

Excluding dizziness, I had all of the same issues as you described. And they all were alleviated with UDCA.

 

I for one do not believe in suffering. No even a little bit. So don't take things too far. From what you are describing, Wednesday morning may be a good time to start UDCA, Thursday morning at the latest. 

 

Fred


70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#243 jds6958

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Posted 17 December 2014 - 10:54 AM

When are you planning on starting, jon?

Hi Gem,

I intend on embarking on a trial of UDCA to determine for myself if there is any positive benefit in restoring mitochondrial function.  That determination will be made by me bringing back my PD symptoms, and then taking 250mg of UDCA 3x per day.



#244 jds6958

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Posted 17 December 2014 - 11:00 AM

Excluding dizziness, I had all of the same issues as you described. And they all were alleviated with UDCA.

 

I for one do not believe in suffering. No even a little bit. So don't take things too far. From what you are describing, Wednesday morning may be a good time to start UDCA, Thursday morning at the latest. 

 

Fred

Fully agreed.  I would like to see the PD come back a little more despite the discomfort.  It might take another day or two.  The symptoms are not consistent.  For about 80% of the day, it would be still difficult to know that I even have PD.  They were worse than this just a few weeks ago in which it was 100% of the day.  It takes a little while for the nutrition and MOA-B inhibitor to fully leave the system.  A good dose of stress would help this along, if I could think of something stressful to do.  LOL.


Edited by jds6958, 17 December 2014 - 11:01 AM.


#245 jds6958

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Posted 17 December 2014 - 11:49 AM

Well...upon further research, the light inconsistent symptoms I am experiencing how is likely do to discontinuing the nutrition.  It could take 5-7 days for the MOA-B activity fully fully return after taking a consistent dose of 10mg of Seleguline per day.  This means that the catabolism of dopamine is still being restrained/inhibited.  I will continue to observe and note symptoms, but I really need my MOA-B functioning back so I can break down and eliminate dopamine again (like a normal person) to really do a fair test of UDCA.

In addition, I would take Seleguline at meals AND with 2 TBS of MCT oil, which further enhances the bioavailability of Seleguline.  This means I could be closer to needing to wait 7 days verses 5.  

 

 

The extent of systemic exposure to Selegiline at a given dose varies considerably among individuals. Estimates of systemic clearance of Selegiline are not available. Following a single oral dose, the mean elimination half-life of Selegiline is two hours. Under steady state conditions, the elimination half-life increases to ten hours.

Because Selegiline’s inhibition of MAO-B is irreversible, it is impossible to predict the extent of MAO-B inhibition from steady state plasma levels. For the same reason, it is not possible to predict the rate of recovery of MAO-B activity as a function of plasma levels. The recovery of MAO-B activity is a function of de novo protein synthesis; however, the information about the rate of de novo protein synthesis is not yet available. Although platelet MAO-B activity returns to the normal range within 5 to 7 days of Selegiline discontinuation, the linkage between platelet and brain MAO-B inhibition is not fully understood nor is the relationship of MAO-B inhibition to the clinical effect established 

http://www.drugs.com...selegiline.html



#246 jds6958

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Posted 17 December 2014 - 03:21 PM

When are you planning on starting, jon?

I just realized that this asked "when" not "what." LOL ...sorry.

I plan on starting the UDCA test once I feel my PD has returned to a sufficient enough degree.  This would be once my MOA-B activity has resumed to enough of a degree for allow for a normal catabolic rate for dopamine following a typical 10mg Seleguline regimen.   I understand that to be 5-7 days from yesterday.



#247 MrFritz

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Posted 17 December 2014 - 04:15 PM

AN INTERESTING DAY AT MY **NEW** NEURO

 

My civilian neuro who initially wrote my prescription for Ursodiol (at my request but after reading the UDCA study by Dr. Oliver Bandmann,) has recently relocated to PA. He is now at the Geisinger Medical Center in Wilkes Barre and/or Danville. If you're from that area and would like to see him, drop me a private and I'll give you his name. I will truly miss him.

 

Fortunately, I still have a great VA neuro who, thanks to me, is a convert to UDCA. That doesn't mean that he has or will prescribe it for others. I don't know that and I never asked. But he has seen its results in me and does prescribe it for me.

 

This morning, I saw my new civilian neuro. A nice gentleman who IMHO appears to be very competent. As I had expected, he had glanced at my file but was not really up on its details. Nor, did he know anything about UDCA. So I gave him a brief synopsis of my condition with PD meds both before and after starting UDCA, I then told him about how I crashed when I stopping my PD meds. I also told him that I no longer required Clonazepam for nocturia and had stopped that too.

 

He then gave me a very thorough going over. He said that if he had first met me, he would not have thought that I had PD. That's how well I am functioning with UDCA + my PD meds. Of course I do know that I have a little tremor here and there and a tic or two. Were it not for my telling him about how I crashed without SInemet, he would have wanted me to take a DAT scan to verify that I really do have PD rather than essential tremor.

 

The only thing that bothers me about my new neuro is that he said he would not have prescribed UDCA. I'm scheduled to see him again in 6 months. If I do see him, I will come armed with my PD assessments and the UDCA/PD studies. If he still says that he would not prescribe UDCA, then I may seek a more open-minded neuro in the future. Fortunately, at this moment, I really don't need a neuro because 1) I'm stable, 2) I have a VA neuro and 3) I have available sources for my UDCA and PD meds.

 

Fred


Edited by MrFritz, 17 December 2014 - 04:17 PM.

70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#248 jds6958

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Posted 17 December 2014 - 11:28 PM

Fred,

It is good that you can still get UDCA, otherwise you might have to start making trips to Mexico...haha.

Some more research for those that are interested.

I discovered this:

 

 

Each of the PD-related

lines was also partially rescued by the
anti-oxidant probucol, the
mitochondrial complex II activator,
D--hydroxybutyrate (DHB) or the
anti-apoptotic bile acid
tauroursodeoxycholic acid (TUDCA).
Complete protection in all lines was
achieved by combining DHB with
TUDCA but not with probucol. 

http://www.jbc.org/c...910200.full.pdf

Simply put, PD is a mitochondria problem, and the root is an cellular energy crisis.

UDCA/TUDCA rescues the complex II system which is a component of the ATP / glucose cellular energy producing system. (This is likely 70-80% of the problem)

D--hydroxybutyrate (DHB) is an enzyme necessary for the creation and destruction of ketones, which is a secondary form of energy that only brain cells can use.

In short, the brain cells are starving to death.  They have no energy.  Those that have enough energy will continue to produce dopamine.  Those that do not, go dormant, stop producing dopamine, and then die.  

The energy crisis and mitochondria disfunction also causes the pesky α-synuclein misfolding and overproduction...this causes the neural swelling and oxidation.

In short, UDCA will help tremendously, HOWEVER, for myself at least, even if UDCA evidences benefit by turning back on my ATP processes for my dormant cells, thus gaining some dopamine production and minimizing cell death through energy starvation, many PD family models still suffer from the keytone process deficiency, oxidation, and neural swelling.

UDCA/TUDCA is not likely enough in of itself to completely stop PD, but it might be so close to make PD progression move so slow that PD appears to not be progressing over the span over a year or two, especially compared to someone not taking UDCA.

Why do some people have PD that proceeds slower?

Why is it that when you are diagnosed with young onset PD that it typically goes slower than someone diagnosed with PD later in life?

The answer is because a younger individual has better antioxidant capabilities than an older individual, which helps with the oxidative stress and neural swelling.

Thus, even if UDCA evidences success in me following this experiment, I will have to resume a nutritional protocol (antioxidents and medium chain triglycerides) to help with the oxidative stress, neural swelling, and keytone energy deficiencies that are certain to still exist.  In addition, to further support the complex II system, CoQ10 and PQQ will still be a part of my regimen as well.

This is the only way, as far as I can tell from the data, to maximize insulation for the long haul.   I am only 36, so I have (in theory) many decades to deal with PD.  


Edited by jds6958, 17 December 2014 - 11:36 PM.


#249 geminik88

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Posted Yesterday, 03:49 PM

Based on your research Jon, do you think Ursodiol could prevent parkinsons?

#250 jds6958

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Posted Yesterday, 04:22 PM

Based on your research Jon, do you think Ursodiol could prevent parkinsons?

I don't know.   It appears that many familial cases of PD experience α-synuclein toxicity and mitochondria energy production deficiencies, and those two issues combined seem to consist of most, if not all of the root cause of PD.

UDCA shows more promise for the cellular energy crisis than fixing the α-synuclein toxicity, but determining any benefit is premature from my perspective, as I have not even entertained the test yet.  And even when I do, it will still be unknown if it solved for the α-synuclein toxicity.

Even if UDCA does accomplish what I hope it to accomplish, no one should take UDCA on the pretense that someday it is possible that they might get PD without it.  Ideally an early biomarker would be identified, and then UDCA therapy would soon follow.

If UDCA does do what I hope it to do, it would likely slow PD progression down to a crawl for those who have a broken ATP process as part of what contributed to PD.  To stop PD 100%, α-synuclein overproduction, oxidative stress, and neural swelling would all need to be addressed.  The oxidative stress and neural swelling is rather easy to address, and could complement UDCA therapy.  

That would only leave α-synuclein fibrosis/clumping, which would not a significant problem, unless the neurotransmitter pathways became so clogged that it begins to create dementia and alzheimer's symptoms.



#251 MrFritz

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Posted Yesterday, 04:53 PM

Hi Jon,

 

So many questions with so few answers, All I can say is try it. If it works for you, great. If it doesn't, at least you tried. The only downside is the cost of the UDCA. A cheap price to pay by any standard. And if UDCA does work for you, it's probably the only and cheapest PD treatment (notice I did not say cure) available today.

 

But if it does help you, then, by all means, try adding some or all of your other supplements to try to improve upon things. The problem is that I can't think of any way to ascertain if the additional supplements are or are not helping.

 

Fred


70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#252 noah

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Posted Yesterday, 06:07 PM

Forgive me but I haven't followed this through completely so if you had answered this bear withme. Jon weren't you the one that was taking a cocktail of nutrition supplements.?
If so why start the urdisol do you think the supplements are not working.?

#253 jds6958

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Posted Yesterday, 06:22 PM

Hi Noah,

The supplements are not intended or capable of solving for the mitochondria problems.  The CoQ10, B-complex, and PQQ can offer support, but they cannot restore Adenosine triphosphate (ATP) deficiency.  UDCA may be able to do that.  I will know soon enough.

Regardless, I will resume the cocktail of nutritional supplements following the success or non-success of UDCA for various reasons.  

If you are interested in what the nutrition protocol/cocktail did or didn't do for my form of PD, my story is here in the second post:

http://forum.parkins...insons-disease/


Edited by jds6958, Yesterday, 06:22 PM.


#254 jds6958

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Posted Yesterday, 07:11 PM

UPDATE:

I am now about 72 hours past my last Seleguline and nutritional supplement regimen.  As my MOA-B is no longer inhibited, as each hour passes my brain is further equipped to break down dopamine again like a normal person.  Full MOA-B function should return by day 5-7, but I am noticing some quickening of PD symptoms returning.

It is quite crazy.  Instead of only my left index finger/thumb, it has spread to my middle finger as well.  If I relax the hand, tremors occur, and it seems to get very ridged and clumsy.  This has started in the last couple hours.

I have notice my fatigue continues to grow.  Fatigue is the first thing I really noticed.  I am moving slower.  I just want to lay around.  I am supposed to go out to eat with the family tonight...just sounds exhausting. LOL.

Tomorrow may be the UDCA experiment day.  If not then, certainly by Saturday. 

I am reminded about how much I detest PD....powerful motivator to do everything to try to fix it...LOL



#255 jds6958

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Posted Yesterday, 07:11 PM

Fred...off topic question...do you drink or like coffee?



#256 MrFritz

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Posted Yesterday, 08:13 PM

Hi Jon,

 

I don't consider anything to be off topic in this thread provided that it relates to abating the symptoms of PD. I assume that is why you ask.

 

I do like and drink coffee. But of more significance to you is that I have always consumed A LOT OF COFFEE. When I had my own businesses, from 1981 until 2003 I used to drink 2 "Mr. Coffee" carafes at work every day. That's in addition to 2 mugs at home after breakfast plus 1 mug after dinner. No, it was not decafe. Subsequently, I tapered down. I currently drink 2 mugs after breakfast plus one after lunch. Occasionally, I may have an additional mug in the afternoon. After dinner, I have a cup of decafe tea.

 

Let me add what I told you previously. I smoked 3 packs of cigarettes a day for 35 years. I stopped smoking October, 1991. My first PD symptom (loss of smell) was sometime around 1992 to 1995.

 

So if you want to know, IMHO I don't think there is any merit in taking caffeine or nicotine supplements. But if you think it has helped you, by all means, you should continue to take it.

 

Fred


70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#257 jds6958

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Posted Yesterday, 09:25 PM

Hi Fred,

:mrgreen:  I ask because I live in Costa Rica, which (imho) produces some of the best coffee in the world.  I figure, if UDCA passes the test, I am forever indebted to you.  The least I could do is send you some of of the best types of coffees from the different volcanic regions of Costa Rica, plus some other tasty coffee products.

I agree with you on caffeine and nicotine.  Nicotine and caffeine have only a slight neuroprotective benefit.  I take what I can get given that at 36, I need PD to progress as slow as possible.  haha.

I believe the reason that caffeine and nicotine appear to delay PD onset is only because both compounds by their very nature affect the reward section of the brain (release dopamine) and thus create an environment with elevated dopamine, thus PD symptoms are simply realized later in life, or if one was destined to get PD symptoms at 85 or 90, then perhaps they would never realize the symptoms at all until they pass on.  It is not much different than taking a small dose of L-DOPA, except all caffeine and nicotine do is encourage extra production and release of dopamine instead of artificially administered through L-DOPA.  Thus, most of the stats behind caffeine and nicotine are simply an illusion (besides the slight neuroprotective qualities that are barely statistically significant).  That is my theory anyway, but most of PD is theory I suppose.

Your nicotine intake was well above mine.  You were at 50-60mg per day.  Mine is 6-10 (but through supplements).  Studies have shown benefits for several neuro diseases, but not groundbreaking, perhaps 5-10% benefit.  Thus, most differences are not really noticed by individuals.

They do show that those who take in about 400mg of caffeine live about 3 years longer on average, interestingly enough. 



#258 MrFritz

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Posted Yesterday, 09:43 PM

Hi Jon,

Thanks for the offer. But, alas, I don't have any sense of smell. Therefore, when it comes to my beloved coffee, all I care about these days is the caffeine. LOL

70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#259 jds6958

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Posted Yesterday, 09:49 PM

Hi Jon,

Thanks for the offer. But, alas, I don't have any sense of smell. Therefore, when it comes to my beloved coffee, all I care about these days is the caffeine. LOL

haha...that was funny...but also a little sad  :sad:






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