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MrFritz

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MrFritz last won the day on November 7 2016

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About MrFritz

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  • Birthday 02/12/1944

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  1. Hi Gem, Thanks for the additional information. That article is well above my pay grade. Suffice it to say that based on the experiences in our group, both TUDCA (the health food supplement) and UDCA (the prescription drug) appear to provide the same benefits. Currently, there seems to be a lot more research in the works with both compounds. The results that I am most interested in seeing is the Ursodiol Clinical Trial (Brain Bioenergetics in Parkinson's Disease and Response to Repeated Oral UDCA Treatment https://clinicaltrials.gov/ct2/show/study/NCT02967250) due for completion May 2018. I expect that this and the other studies will confirm what I have been touting since December 4, 2013. That is to confirm both the safety and positive benefits of [T]UDCA for treating Parkinson's disease,
  2. Front Aging Neurosci. 2016; 8: 263. Published online 2016 Nov 22. doi: 10.3389/fnagi.2016.00263 PMCID: PMC5118426 Bile Acids in Neurodegenerative Disorders Alzheimer's disease Parkinson's disease Amyotrophic lateral sclerosis Huntington's disease Spinocerebellar ataxia type 1 Prion diseases Cerebrotendinous xanthomatosis Retinal diseases Acute stroke, spinal cord injury, and neuropathy + = + = + = + = + = + = + = + = + Are you still looking for that miracle drug/treatment for your Parkinson’s yet still not taking your prescription UDCA (Ursodiol) or the non-prescription health food supplement TUDCA? Maybe you should take a look at this recent article published late last year: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5118426/ and then follow my thread: http://forum.parkinson.org/topic/15448-ursodiol-a-potential-new-drug-for-pd/?do=getLastComment Fred Using UDCA since October 16, 2013, I'll never leave home without it. What's in your medicine chest?
  3. This is an absolute must read if you want to understand Parkinson’s Disease and the current state of research. Fred ==== 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 https://scienceofparkinsons.com/2017/05/28/sheffield-flies-fish-and-a-tigar/
  4. Such a sad story. But, how is one to know if this is real or a scam. What I've learned in my 73 years is not to trust anyone unless it can be verified. Anyway, I checked his gofundme page and found $4,256 of $7,500 goal has already been met. Fred
  5. Yes, all of you are 100% correct when you recommend exercise. It is the best thing for you regardless as to your health. And if you still have PD symptoms, they'll give you more pills. But you do know that your PD is and will continue to progress and your doctor does not have even one pill that either slows or stems the progression of your disease. Looking for a cure? Forget about it! Pssssssst. Want a treatment regimen real cheap? https://clinicaltrials.gov/ct2/show/study/NCT02967250 and scroll down to "Purpose." Questions? drop an email to mrfritz@comcast.net Ciao, Fred
  6. UDCA or TUDCA. See Ursodiol in this forum.
  7. 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. Fred
  8. 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. Fred
  9. Ursodiol Clinical Trial is Underway Brain Bioenergetics in Parkinson's Disease and Response to Repeated Oral UDCA Treatment https://clinicaltrials.gov/ct2/show/study/NCT02967250 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. Fred
  10. Hi Johnny, Thanks for posting. That was awesome and very inspirational. I wonder if anybody has a good explanation. Fred
  11. Okay newbies Your answer(s) are here: http://forum.parkinson.org/index.php?app=core&module=help Click on "Posting" Fred
  12. URSODIOL – MY YEAR THREE UPDATE * * * * * * * * * * * * * * * * * * * * * 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 Fred
  13. Be aware that Sinemet has a long half-life in the body. Some time ago, I decided to try stopping my Sinemet and Azelect, I spent a month titrating down to zero. I thought I was doing great. But as the weeks progressed, so did the increase in my tremors. By the end of a month, I was a basket case. I restarted my meds and everything returned to normal. So please use caution. Best to work with your doctor if you can. BTW - I'm still on Ursodiol (UDCA) and doing well. I'll be updating the Ursodiol thread shortly. For those of you who use or have access to the VA Pharmacy and are interested in Ursodiol (UDCA), read my update for some interesting information that I just learned from my VA Internist today. Fred
  14. Nice one Roger. Takes me back to the days when I didn't mind the shakes.
  15. Roger, As much as I like you and value your opinion, this political post does not belong in this forum. But since you posted it, I feel free to reply, In every election, there is a winner and a looser. In this election, unfortunately the looser is the American public regardless as to who wins. As for the New York Times, it is not worthy of being used to wrap my dead fish in. If I did, on all likelihood, it would immediately spoil. The once highly valued 4th Estate no longer exists. It has been politicized and corrupted as is this current Administration which includes the IRS, FBI, EPA & DOJ. Yes, both candidates are very flawed. But I can not vote for a Socialist. You saw how fast Venezuela went from a Democracy to Socialism to Dictatorship. Don't think it can't happen here. It starts with stacking the Supreme Court with left-biased activist judges. Just a parting note on Trump. He was the only person capable of surviving the standard game plan of the DNC - Character Assassination. Just look at what they did to Romney with their lies and innuendos and with no honest media to help in his defense. God Bless America and God Help Us All. Fred