Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

URSODIOL - A Potential New Drug for PD

Drug Treatments

  • Please log in to reply
698 replies to this topic

#681 miracleseeker

miracleseeker

    Advanced Member

  • Members
  • PipPipPip
  • 1,285 posts

Posted 28 February 2015 - 06:08 PM

Do you think what you think is RLS is actually dyskinesia related?  Did it appear after TUDCA?



#682 jds6958

jds6958

    Advanced Member

  • Members
  • PipPipPip
  • 250 posts
  • LocationCosta Rica

Posted 28 February 2015 - 06:16 PM

Had it at the time of my diagnosis of PD, but at the time I thought it was PD.  It went away when I started the nutritional protocol, as did the PD.  This was in March 2013.  I did not start UDCA/TUDCA till December.



#683 miracleseeker

miracleseeker

    Advanced Member

  • Members
  • PipPipPip
  • 1,285 posts

Posted 28 February 2015 - 07:03 PM

That's weird then why did it come back now?



#684 jds6958

jds6958

    Advanced Member

  • Members
  • PipPipPip
  • 250 posts
  • LocationCosta Rica

Posted 28 February 2015 - 09:44 PM

That's weird then why did it come back now?

My guess is an iron deficiency.  I stopped taking iron supplements a couple months ago...and I have a history of being anemic.  Apparently it is well known that 20% of RLS cases are caused from low iron levels.  Correlation does not imply causation, but I am starting to take iron again to see if it goes away.



#685 tlstarkenberg

tlstarkenberg

    Member

  • Members
  • PipPip
  • 14 posts
  • LocationBowdon, Georgia

Posted Today, 03:18 AM

Fred,

 

I'm still here, maybe I can concentrate on finding a supply of U:DCA. I'm getting slower in accomplishing things and I have to set my mind to get done what normally was done with a regular work schedule.

I am taking 1/4 25/250 Leva Dopa every 4 hours. I have found I can't sleep because of RLS keeping me awake to the point of making me walk in circles 'tll I fall asleep standing up. Since I was part of a research on neupro , and it worked so well as a once a week shot, I asked my Neurologist if she would prescribe it. She did & it works & now I can sleep , boy , howdy. I went from 1 to 4 and back down to 2 mg and I've tried w/o neupro and couldn't sleep .Was only dxd  latter 2012 and have progressed  , or is that digressed qquite faster than I thought. So, I need a stop Gap & hhope that ursodial can be had & hope it will keep me at bay for maybe ten mooore than 10 or twenty years (68 now).

The regular dr.& the Neurologist won't prescribe ursodiol. When I can get it & I have some results I'll let you know what they are.

Gone lurking.

 

Tom



#686 FlyBaby

FlyBaby

    Advanced Member

  • Members
  • PipPipPip
  • 1,777 posts
  • LocationTacoma Wa.

Posted Today, 04:06 AM

Ok folks..... here's something I thought I'd throw out here.............

 

I have a dear friend (age 55) that I have known for many many years. After a L-Dopa challenge, she has been recently (today) been Dx'd with Parkinson's. She's currently taking Sinemet 25/100 3 times a day as a mono therapy. Her PD symptoms started approx. 10-12 years ago, and include bilateral tremor, rigidity, and bradykinesia, etc.......... Classic presentation you might say....... Now here's the kicker........ for about the past 15 years she has been taking approx. 1200mg of Ursodiol per day for a liver condition.............. I would say that that basically blows a huge hole right smack in the middle of your theory that Ursodiol is Neuro-protective, and slows, stops, or reverses PD.  Again, she started the Ursodiol BEFORE her first symptoms and before her Dx.


Edited by FlyBaby, Today, 04:08 AM.

Michael

Current age= 55

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 2013

 

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

 

 


#687 PatriotM

PatriotM

    Advanced Member

  • Members
  • PipPipPip
  • 411 posts

Posted Today, 08:33 AM

Quite right FlyBaby!

This thread is the biggest load of crap since Tyson cleaned out the chicken barn!!!

Fritz plays doctor on the internet and has conned others into buying into his delusion. This entire "experiment" is so full of holes that it wouldn't hold cannon balls, let alone water. The worst thing is that he's preying on weak, gullible people. It makes me sick.

I suspect that when his first internet "patient" dies of some side effect of this drug, that Fritz will be sued into oblivion and will never be heard from again.

#688 RickCopple

RickCopple

    Advanced Member

  • Members
  • PipPipPip
  • 97 posts
  • LocationCentral Texas

Posted Today, 10:23 AM

FlyBaby,

 

Your example actually supports the conclusion that it slows PD progression. I would have loved to have had a 10-12 year window between first symptoms showing up and needing to be diagnosed and put on Sinemet. As it was, it all happened within a two year period. I would say that it took 10+ years for your friend indicates a slowing of progression.

 

To my knowledge, no one has made the claim that UDCA stops progression, though who knows, maybe for some it might? But I don't think anyone is saying it will stop progression. So it would not be surprising that someone on it eventually has to start taking other PD drugs to deal with symptoms.

 

I also turn 55 this year, in July. Sounds like my PD is further along than your friend's, even though I didn't start seeing symptoms of it until early-mid 2012. I'm currently in stage 2, where I'm seeing tremors on my other side too. All within a 3 year window. I'd take the 10+ year delay if it were me.


Rick Copple

http://rickspdjourney.blogspot.com/

 

First symptoms: early 2012 at 51 years of age. Diagnosed: May 2013. Currently on Sinemet, Azilect, and various suppliments.

 


#689 jds6958

jds6958

    Advanced Member

  • Members
  • PipPipPip
  • 250 posts
  • LocationCosta Rica

Posted Today, 10:24 AM

Ok folks..... here's something I thought I'd throw out here.............

 

I have a dear friend (age 55) that I have known for many many years. After a L-Dopa challenge, she has been recently (today) been Dx'd with Parkinson's. She's currently taking Sinemet 25/100 3 times a day as a mono therapy. Her PD symptoms started approx. 10-12 years ago, and include bilateral tremor, rigidity, and bradykinesia, etc.......... Classic presentation you might say....... Now here's the kicker........ for about the past 15 years she has been taking approx. 1200mg of Ursodiol per day for a liver condition.............. I would say that that basically blows a huge hole right smack in the middle of your theory that Ursodiol is Neuro-protective, and slows, stops, or reverses PD.  Again, she started the Ursodiol BEFORE her first symptoms and before her Dx.


No hole...we have already posted that UDCA / TUDCA does not work for everyone.  I just had an email come in to www.ReverseYoungParkinsons.com the other day about a person who took UDCA and there was no benefit.

It happens.  Sometimes people have PD for different reasons.  Even the research journal citing the possible benefits of UDCA state that the experiment suggests benefit for MOST (which means NOT all) types of PD.

 



#690 jds6958

jds6958

    Advanced Member

  • Members
  • PipPipPip
  • 250 posts
  • LocationCosta Rica

Posted Today, 10:25 AM

FlyBaby,

 

Your example actually supports the conclusion that it slows PD progression. I would have loved to have had a 10-12 year window between first symptoms showing up and needing to be diagnosed and put on Sinemet. As it was, it all happened within a two year period. I would say that it took 10+ years for your friend indicates a slowing of progression.

 

To my knowledge, no one has made the claim that UDCA stops progression, though who knows, maybe for some it might? But I don't think anyone is saying it will stop progression. So it would not be surprising that someone on it eventually has to start taking other PD drugs to deal with symptoms.

 

I also turn 55 this year, in July. Sounds like my PD is further along than your friend's, even though I didn't start seeing symptoms of it until early-mid 2012. I'm currently in stage 2, where I'm seeing tremors on my other side too. All within a 3 year window. I'd take the 10+ year delay if it were me.


Good point.



#691 jds6958

jds6958

    Advanced Member

  • Members
  • PipPipPip
  • 250 posts
  • LocationCosta Rica

Posted Today, 10:26 AM

Quite right FlyBaby!

This thread is the biggest load of crap since Tyson cleaned out the chicken barn!!!

Fritz plays doctor on the internet and has conned others into buying into his delusion. This entire "experiment" is so full of holes that it wouldn't hold cannon balls, let alone water. The worst thing is that he's preying on weak, gullible people. It makes me sick.

I suspect that when his first internet "patient" dies of some side effect of this drug, that Fritz will be sued into oblivion and will never be heard from again.


I died yesterday, but UDCA brought me back to life.



#692 MrFritz

MrFritz

    Advanced Member

  • Members
  • PipPipPip
  • 340 posts
  • LocationNew Jersey

Posted Today, 10:53 AM

 

The regular dr.& the Neurologist won't prescribe ursodiol. When I can get it & I have some results I'll let you know what they are.

 

Hi Tom,

 

Sorry to hear of the speed of your progression. As everybody knows, nothing works for everyone. Nor does it work the same for everyone. We're all different. If every drug worked equally for every PWP, then we'd all be on the same medications and dosages. This simple fact seems to elude the "smartest" people posting here.

 

Finding a neuro or any doctor willing to prescribe UDCA off-label seems to be a daunting task. I guess I was just lucky. As per Jon, Rick and Hans, TUDCA seem to be a viable albeit more expensive alternative and it is readily available without a prescription from Amazon or your local health food store. As I've cautioned before, if you order TUDCA, read the ingredients to be sure it is pure without any other additives,

 

Good luck and we look forward to hearing your results.

 

Fred


1000mg Vitamin D3; 81 mg ASPIRIN; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.

 

On January 18, 2015 I started the following supplement protocol: • EGCg, Green Tea Extract: 400mg 1x/day • Triphala: 500mg 2x/day • NAC (N-Acetyl Cysteine): 600mg 4x/day. I am also adding 1 tablet Centrum Silver Multivitamin/Multimineral Supplement which will be replaced by Solgar Formula Vm-75 Multiple Vitamins with Chelated Minerals when I need to reorder.


#693 hercules957

hercules957

    Advanced Member

  • Members
  • PipPipPip
  • 70 posts
  • LocationToronto

Posted Today, 11:35 AM

Quite right FlyBaby!This thread is the biggest load of crap since Tyson cleaned out the chicken barn!!!


patriotM How many times do you need to post emotionally charged opinions expressing your outrage and intolerance. This is an information sharing blog, not a scientific journal. We take what we want and discard what we don't want. Our choices.

Norman

Dx 04/2013 at Age 56, No meds for 1yr. Now Sinemet 100/25 5 t/d 1 1/2 tab at 6:00, 1 tab at 10:00, 1 1/2 at 14:00, 1 tab at 18:00 and 1 tab close to midnight.

Main symptoms: Left side tremors, bradykinesia, fine motor skills problems, apathy, anxiety, swallowing problems.

Sinemet lifted the gloom and reduced all my symptoms, small tremors persist. Intolerance to stress persists.


#694 geminik88

geminik88

    Advanced Member

  • Members
  • PipPipPip
  • 52 posts

Posted Today, 12:33 PM

I've never met a group of people so eager to see a possible treatment fail. You'd th ink something that could possibly help would be a welcome suprise.


Chemo doesn't work for 100%, or even 75%, must be a scam

#695 geminik88

geminik88

    Advanced Member

  • Members
  • PipPipPip
  • 52 posts

Posted Today, 12:37 PM

There are several known mutations that increase the risk of pd. Some (parkin) affect alpha synuclein, some (gba) affect the lysosomes, and some (lrrk2) affect protein kinase. This is part of the reason curing parkinsons is so hard. It is not one straightforward disease. So it would be silly to think one treatment would work For all.

#696 jds6958

jds6958

    Advanced Member

  • Members
  • PipPipPip
  • 250 posts
  • LocationCosta Rica

Posted Today, 12:43 PM

There are several known mutations that increase the risk of pd. Some (parkin) affect alpha synuclein, some (gba) affect the lysosomes, and some (lrrk2) affect protein kinase. This is part of the reason curing parkinsons is so hard. It is not one straightforward disease. So it would be silly to think one treatment would work For all.

That is exactly right.  UDCA/TUDCA only solves for the mitochondrial issue of PD.  Perhaps someone only has a-syn aggregation with their form of PD, and in that case UDCA/TUDCA could do little or nothing for them.  However, gallic acid (i.e. grape seed extract), EGCg, and curcumin might help significantly after a few months for the a-syn issue.



#697 christie

christie

    Advanced Member

  • Members
  • PipPipPip
  • 739 posts

Posted Today, 07:40 PM

This is an information sharing blog, not a scientific journal. We take what we want and discard what we don't want. Our choices.


This is an information sharing forum, that's correct. We take the truthful and honest information and discard anything based on lies, deceit and distortion of the truth.


-English is not my first language !

-Aged 39. Diagnosed at 35.

-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).


#698 christie

christie

    Advanced Member

  • Members
  • PipPipPip
  • 739 posts

Posted Today, 07:55 PM

I've never met a group of people so eager to see a possible treatment fail. You'd th ink something that could possibly help would be a welcome suprise.


Chemo doesn't work for 100%, or even 75%, must be a scam


Well, I've never met a group of people so eager to mistake speculation for evidence and so ready to believe anything written on the internet... so eager to swallow any pill, even against their doctor's advice, just because a Mr X suggested it!

And since you mentioned chemo...Cancer patients -who are facing death and not just disability- know better than to trust  "internet cures".

 

http://www.telegraph...rnet-cures.html

 

"Thousands of patients are putting their health at risk when they rely on information about complementary medicines on the internet, a leading researcher said yesterday.

Cancer patients are at most risk and may die sooner if they follow the advice on commercial websites, said Edzard Ernst, professor of complementary medicine at the Peninsula Medical School, Exeter and Plymouth.

A study of 32 of the most visited complementary medicine websites, which had tens of thousands of hits a day, were analysed in a study co-led by Prof Ernst.

He said yesterday three per cent had "actively discouraged" site visitors from using their prescribed medicines and 16 per cent had discouraged them from conventional medicine less directly.

"Our conclusion was that a significant proportion of these websites are actually a risk to cancer patients," he added.

 

"We found that between these 30-odd sites, 118 different cancer 'cures' were recommended, complementary treatment which claimed to be cure cancer. None of these 118 can be demonstrated to cure cancer."

Prof Ernst said: "Not everything that is natural is risk-free. People should use their common sense about the motives of these websites. If it sounds too good to be true, it probably is. Use your brain. Take responsible advice."


-English is not my first language !

-Aged 39. Diagnosed at 35.

-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).


#699 MrFritz

MrFritz

    Advanced Member

  • Members
  • PipPipPip
  • 340 posts
  • LocationNew Jersey

Posted Today, 08:15 PM

Psychiatric Disorders: Depression can be part of the clinical picture in patients with Parkinson’s disease  and  may  also  occur  in  patients  treated  with  MADOPAR.  Agitation,  anxiety,  insomnia, hallucinations, delusions and temporal disorientation may occur particularly in elderly patients and in patients with a history of such disorders.


1000mg Vitamin D3; 81 mg ASPIRIN; 100mg LOSARTAN + 5 mg AMLODIPINE for High Blood Pressure; 6 tabs 25/100 CARBIDOPA/LEVODOPA + 1 mg RASAGILINE for PD + Started UDCA on October 16, 2013. Currently on 300mg 4x/day for a total of 1200mg.

 

On January 18, 2015 I started the following supplement protocol: • EGCg, Green Tea Extract: 400mg 1x/day • Triphala: 500mg 2x/day • NAC (N-Acetyl Cysteine): 600mg 4x/day. I am also adding 1 tablet Centrum Silver Multivitamin/Multimineral Supplement which will be replaced by Solgar Formula Vm-75 Multiple Vitamins with Chelated Minerals when I need to reorder.





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users