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URSODIOL - A Potential New Drug for PD

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#821 musicman

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Posted 30 March 2015 - 04:04 PM

Well, if TUDCA can change Patriot's opinion, then ANYTHING is possible. I look forward to this little development....


Diagnosed 7/14 (age 57) by MDS and a DatScan. 

Began Azilect 8/6/2014

Started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#822 miracleseeker

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Posted 30 March 2015 - 04:21 PM

PatriotM -  are you saying that exercise alone has not helped you with your tremors as you had hoped when you stopped Mirapex?  I remembered you were very excited and sure that you could do without it.  Hopefully TUDCA will help you with your tremors.  Even a slight decrease would be great.   I always wished my mom could go off her meds.  All the side effects are just not good.



#823 PatriotM

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Posted 30 March 2015 - 06:40 PM

Miracleseeker,

As I said in my "drug free" post, my tremor is slightly worse after stopping the Mirapex. In my experience (and in a lot of the reading I've done) exercise has significantly improved my rigidity, balance, fatigue, stamina, etc. My tremor did improve somewhat with Mirapex, but not greatly. Exercise hasn't done much at all for my resting tremor. I did find some references in the Delay the Disease literature that they have some exercises that have been shown to improve tremor. I plan to contact them to see which exercises they feel are helpful for tremor.

#824 miracleseeker

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Posted 30 March 2015 - 07:20 PM

In my mom's case Mirapex was very good for tremors and rigidity but bad for her mind and made her very sleepy.   For sure exercise will take the stiffness away from the joints and muscles but that only lasts as long as she's moving around. Once she sits for more than 30 minutes then she's hard as a rock again.



#825 Benyamin

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Posted Yesterday, 04:39 AM


Do you feel you need the melatonin?  That is a hormone and there is evidence that should only be taken on a limited basis.

 

I started taking melatonin because I was having trouble sleeping, I have since realized that it is making me very groggy though and will try to move on without it.



#826 Benyamin

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Posted Yesterday, 04:48 AM

 

 

Now, please tell us about that nice looking trophy and what you're doing in China.

 

Hah, the trophy is the 2010 Lakers NBA championship trophy, a friend was guarding it for a few days so me and a few friends paid it a visit.

 

As for China, I'm a partner at an education company, I've been here four and a half years now, learned the language, and intend on being here for a few more years to come. In addition to learning all I can about this place I am hoping my time here will allow me to retire early if need be. If anybody wants a free tour guide in Shanghai just let me know.



#827 hans55

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Posted Yesterday, 06:53 AM

Sounds your just in the right place to take on taiji or qigong. I would!



#828 miracleseeker

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Posted Yesterday, 08:24 AM

Hah, the trophy is the 2010 Lakers NBA championship trophy, a friend was guarding it for a few days so me and a few friends paid it a visit.

 

As for China, I'm a partner at an education company, I've been here four and a half years now, learned the language, and intend on being here for a few more years to come. In addition to learning all I can about this place I am hoping my time here will allow me to retire early if need be. If anybody wants a free tour guide in Shanghai just let me know.

Do you think the bad air in Shanghai played a factor in you getting PD?  When did you show signs of having the disease?  How advanced are the doctors there in your opinion?



#829 MrFritz

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Posted Yesterday, 09:40 AM

Thanks Benyamin. We've all been curious about that, As for the bad air in Shanghai, I doubt if it is a causative factor in your PD. However, who knows how it may affect you in the coming years.

 

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.


#830 miracleseeker

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Posted Yesterday, 09:50 AM

It's hard to figure though.  My cousin moved to Shanghai about 6 years ago for business reasons and had bad Asthma his whole life but since moving there he has not had a single attack,. Sometimes things happen without obvious reasons. At the same time it was always suggested that pesticides and pollutants was a major contributing factor to people getting PD.  That's not saying that everyone who comes in contact with this will get it but some do.  



#831 jds6958

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Posted Yesterday, 12:52 PM

My daughter brought up the subject of my PD the other day. She is an award winning Nurse Practitioner who basically supervises Interns and makes sure that they don't kill the patients (especially in late summer when the they are newbies).

Anyway, to make a long story short, she suggested that I might want to consider DBS due to my tremor. Ironically, my neurologist suggested the same thing at my appointment the other day. The bottom line is that I'm very active and have absolutely no interest in brain surgery.

I brought up the Urso thread to her and discovered that she if very familiar with this drug. She believes the downside risk is very low and suggested that I might give it a try. So, in spite of my skepticism, I ordered a bottle of TUDCA from Brawn Nutrition and it will be here on Wednesday.

My intention is to take two 300 mg capsules on Wednesday, and if well tolerated, four on Thursday. Since the claim is that results are almost instantaneous, I should see results (or lack thereof) by the weekend.

Unlike many of the people that have made claims, I am not a PD newbie and I have very well defined symptoms. I will not need to report subjective results, I will have objective results (or lack thereof). The reason that I will have objective results is that I have a visible tremor every single day and the vast majority of the time during the day that I am at rest. If there isn't significant improvement in my tremor, this experiment will be a failure. It won't be a matter of how I feel, it will be a matter of seeing a significant decrease in the frequency and size of the tremor.

Also, I am not on any PD medication and have made no changes recently, other than stopping my Mirapex more than 3 weeks ago. Needless to say, not taking the Mirapex won't improve my tremor. In other words, if the TUDCA works, the result can't be credited to anything else. If the TUDCA fails, it will be blatantly obvious. I am VERY skeptical and there will be no placebo effect.

I have very obvious, classic PD - so much so that I was diagnosed on the very first visit to the neurologist.

PatriotM,

I certainly wish you the best.  Out of curiosity, do you take a multivitamin?

There is a guy here in CR that recently tried TUDCA.  He was nearly suicidal.  His health was very poor.  He intentionally tried to eat very bad in hopes that it would give him a heart attack.   His wife, as the caregiver was quite desperate.

The TUDCA helped even him out, but not at first.  It was not until he started taking some b-vitamins by mandate of his wife that it started helping on day 11.  He still has a lot of problems, but he is doing much better and now has motivation to live more healthy.

The point being, your PD appears to be rather advanced.  If you don't feel you eat very well, perhaps consider a multivitamin.  Given all that you have likely tried, and that you exercise, I am sure that my recommendations on this are unwarranted.  I just wanted to throw that out there.  

As I understand it, full tissue saturation of TUDCA happens around day 10, but you are correct, most do seem to feel a difference in the first 72 hours.A

About 6% of PWP do not respond to TUDCA.  I think for some, it is nutritionally related, for others, their PD was too advanced.  Perhaps for even a smaller minority, their PD is more of an a-syn aggregation problem than a mitochondrial problem.

 



#832 PatriotM

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Posted Yesterday, 01:24 PM

The point being, your PD appears to be rather advanced. If you don't feel you eat very well, perhaps consider a multivitamin. Given all that you have likely tried, and that you exercise, I am sure that my recommendations on this are unwarranted. I just wanted to throw that out there.


According to he PD scale, I am in stage one. http://www.webmd.com...rkinsons-stages

I eat very well. We grow a high percentage of our own food (all organic, non-GMO). This year's tomatos and peppers are in the greenhouse right now. We buy grass fed beef. We use only non-BPA containers. We raise our own free range chickens for eggs. We drink only clean, filtered water with the fluoride filtered out. I don't take vaccines; don't smoke; and don't drink.

I'm taking Vit B Complex, D3, Magnesium, and Green Tea under the direction of a MD/ND who is board certified in Integrative Medicine.

I'm looking forward to finding out of Urso is for real or just hype. We'll soon see.

Edited by PatriotM, Yesterday, 01:25 PM.


#833 jds6958

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Posted Yesterday, 02:42 PM

Thanks for s

 

According to he PD scale, I am in stage one. http://www.webmd.com...rkinsons-stages

I eat very well. We grow a high percentage of our own food (all organic, non-GMO). This year's tomatos and peppers are in the greenhouse right now. We buy grass fed beef. We use only non-BPA containers. We raise our own free range chickens for eggs. We drink only clean, filtered water with the fluoride filtered out. I don't take vaccines; don't smoke; and don't drink.

I'm taking Vit B Complex, D3, Magnesium, and Green Tea under the direction of a MD/ND who is board certified in Integrative Medicine.

I'm looking forward to finding out of Urso is for real or just hype. We'll soon see.

Thanks for sharing.  I suppose I thought that DBS was considered more for later stage PD.  It appears I misunderstood that.

It appears you engage in quite the healthy lifestyle.

I am not sure if you will be able to determine if urso is for real or just hype.  This is only you taking TUDCA, right?  Not you and 20-30 others?  

You are about to find out if it is real for you.  Hopefully it is, but be aware, there is a chance it will not be.  It does not seem to work noticeably for about 1 out of 20 in terms of symptom mitigation.



#834 PatriotM

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Posted Yesterday, 02:58 PM

The neurologist said that they like to have younger and healthier patients with a good attitude for DBS. As a younger and relatively healthy patient, I am not interested in brain surgery.

 

I am not sure if you will be able to determine if urso is for real or just hype. This is only you taking TUDCA, right? Not you and 20-30 others?


I'm sure. Why are you and Fred making excuses for TUDCA not working when I haven't even received it yet?
 

About 6% of PWP do not respond to TUDCA. I think for some, it is nutritionally related, for others, their PD was too advanced. Perhaps for even a smaller minority, their PD is more of an a-syn aggregation problem than a mitochondrial problem.


I receive excellent nutrition and my PD is not advanced (I'm stage one). If Urso is real, then it certainly should work for me.

Edited by PatriotM, Yesterday, 02:59 PM.


#835 jds6958

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Posted Yesterday, 03:19 PM

I'm sure. Why are you and Fred making excuses for TUDCA not working when I haven't even received it yet?
 

 

Not making excuses....just giving you the facts.  You seemed to suggest that if TUDCA does not work for you, then it is "just hype."

 

 

 

I'm looking forward to finding out of Urso is for real or just hype. We'll soon see.


We already know as a statistical fact that TUDCA does not work for 1 out of 20.  Thus, if it does not work for you you are simply one of the "1 of 20."

 

 

 

I receive excellent nutrition and my PD is not advanced (I'm stage one). If Urso is real, then it certainly should work for me. 


Actually that is not correct.  Most PWP have a root cause that is dominantly related to mitochondrial disfunction.  However, TUDCA can do nothing for a-syn aggregation.  If a-syn aggregation is your dominant root cause of PD, then TUDCA will not work for you, even if you have perfect nutrition....though Grape Seed Extract and Triphala might eventually help in such a case.



#836 Skiing

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Posted Yesterday, 04:28 PM

Hi jon
Sorry I must have missed some of your posts where did you get the 1 in 20 statistics for tudca? Thanks

#837 jds6958

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Posted Yesterday, 06:28 PM

Hi jon
Sorry I must have missed some of your posts where did you get the 1 in 20 statistics for tudca? Thanks

...collective feedback from those who have told us they have tried TUDCA or UDCA.






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