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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. Restore Gold

    Hiker & Adam: I have been using Ursodiol (UDCA) since October 16, 2013. Please check out my Ursodiol thread but forewarned that it is huge. 1164 replies to date. Yes, only a handful of others have posted their experience with it. Most are still users. There are many other users who have posted their experience at the Restore Gold website. The vast majority of people with PD who read these forums never post their experience. They choose to read and remain anonymous. There are some PD studies for both UDCA (Urso & Ursodiol are prescription medications in the English speaking world) and TUDCA (a non-prescription readily available supplement). Most of these studies are listed within the Ursodiol thread. Currently, there is a human trial underway. If I remember correctly, its results are due in May. Suffice it to say that UDCA & TUDCA are old drugs/supplements that are well studied, FDA approved and safe to use for most people. Yes, both UDCA and TUDCA are expensive. If you have a drug plan, UDCA is what you want. The hard part is to find a doctor who is willing to give you a prescription. I was lucky. As for pricing, if you're a vet like me, the VA pharmacy is your best bet. Feel free to ask me any questions. However, I would appreciate your posting at the Ursodiol thread. Thank you. Fred
  2. Restore Gold

    The primary active ingredient is TUDCA (Tauroursodeoxycholic Acid) which is an over the counter supplement similar to and equally effective as UDCA (Ursodeoxycholic Acid).
  3. URSODIOL - A Potential New Drug for PD

    Rytary vs Sinemet cr By Inge, September 21, 2015 in Ask the Pharmacist Top of Form Posted September 21, 2015 What,is the difference between Rytary and Sinemet cr? They both have the same ingredients MComes RPH 183 Board Certified Pharmacist, Medical Board Member, & Consult Ask the Pharmacist Moderators Posted October 9, 2015 In a nutshell, Rytary is supposed to last longer which will shorten off times and increase on times. It is formulated in a capsule form to give a longer release mechanism than sinemet CR does. I will always tell patients that if you are on the sinemet CR and it is working, there may be no s3nse in changing to a new med and have to try to whole process again. If is patient is having issues with off times, this may be a good medication to try. Hope this helps
  4. URSODIOL - A Potential New Drug for PD

    Sorry if I didn't address that sufficiently. After being off ALL of my meds and vitamins, my tremors started to get the better of me but I had zero neuropathy (or whatever it was). I knew I had to get back on Sinemet (Carbidopa-Levodopa). So that was the first drug I restarted with. My standard Sinemet is a 25/100 tablet which is scored so I can readily break the tablet in half. Normally, I was taking 2 tablets per dose 3 times per day. By trial and error over the course of a few weeks, I found that every time I took more than 1 tablet of standard 25/100 Sinemet within a 4 hour period, the neuropathy would ensue. So I then maintained a regimen of 1 standard Sinemet tablet per dose every 5 hours (4x/day). Although this dose helped my tremors, it was grossly insufficient. I then added my Azilect (Rasagiline) [Sorry if I left that out in my initial post.] which did not help my tremors. Nor did it bring on any neuropathic issues. Lastly, I added my Ursodiol. This did help reduce my tremors and it did not cause any neuropathy. After I was stable on this regimen, I again tried to increase my dosage of Sinemet and found that adding even a half tablet would caused my neuropathy to reoccur. The curious thing about this neuropathy issue was its timing. Like clockwork, it would rear its ugly head approximately 2 hours after taking more than 1 tablet of standard Sinimet and it would last for 30-60 minutes before subsiding. So my Neurologist suggested that I try a combination of standard Sinemet and its slow release form (Sinemet ER, CR or SA). I experimented with this and found that I can tolerate 50/200 Sinemet CR. I could even add 1 25/100 standard Sinemet tablet to the mix without issue. The proper Sinemet dose for me is probably somewhere in the middle. So Dave, I am sure beyond any shadow of a doubt that Ursodiol did not contribute to this issue in any way. As for Rytary which I have not tried, it is a brand name for Sinemet CR but in capsule form. Also, in case you were wondering, I did not restart my BP meds and vitamins until I had this "neuropathy" issue under control. FYI, I never restarted taking Lyrica and no longer have any need to do so. Fred
  5. URSODIOL - A Potential New Drug for PD

    READY, [RE]SET & GO My return from the brink Tags: #Sciatica #Neuropathy #TUDCA #UDCA #Ursodiol #Gabapentin #Lyrica #Sinemet Recently I alluded to having had some issues which may be of interest to our community. I said that I would soon write about it. I have been reticent in doing so because this experience has left me with little zeal to put pen to paper. However, after reading some recent forum postings, relating my experience may be of use to others. Before I start, let me say that I am posting this in the Ursodiol ( [T]UDCA ) thread. But what I have to say is just as relevant to the entire community of PWP . See tags above. So, here goes. I have suffered with back related issues for a number of years. My MRI’s indicate that most of my lower lumbar discs are bulging and/or herniated. My Orthopedist has strongly advised against any surgery. He did recommend that I see a Pain Management doctor. I followed his advice. In 2015, upon reviewing my stated symptoms and MRI, my Pain Management doctor recommended an epidural. So in 2015 and then again 3 months later I had my first and second epidurals which provided very little relief. For the next 2 years I suffered while my symptoms continued to worsen. I thought that what I had was Sciatica although I never bothered to look up what Sciatica is. As good as I am with words, to this day, I cannot properly describe what ailed me. But I can tell you what I did not suffer from. So here it is as best as I can describe it to you. My back generally did not bother me much. I would have a mild ache while standing and walking. I did not have pains in my legs or feet. Nor, did I have pins and needles or numbness. While standing in my stocking feet I would get very strong debilitating feelings in my feet as though I was standing on sharp gravel (without pain) or other odd substances. This would occur even if I was on a soft bathroom rug. Walking or changing the type of surface I was on helped but did not relieve these terrible feelings. Generally, I would have to lie down in bed until the issue passed. Typically, it would last 30-60 minutes. Fast forward to December, 2016. During a regular exam by my Internist, he thought that what I described was neuropathy and suggested that I try Gabapentin. What a relief that was. A miracle! It relieved my symptoms completely. But, alas, it did not last. I had to steadily keep increasing the dosage. Also, it made me very tired and I was not comfortable driving. By mid-year 2017, I was taking 600mg 4x/day which was the maximum. Working with my Neurologist, I switched to Lyrica and titrated up to 150mg 3x/day. Again, it was a dose that worked for me but it was one step below the maximum. After a month or so, I found that my dose of Lyrica was not providing enough relief. Knowing that I could not continue to increase my dose, I started to give my problem a lot of thought. My last dose of Lyrica was generally around 7PM. Yet, I would awaken in the morning without any discomfort. My issues generally would start just before lunch. I wondered why. So I looked at my meds. In the morning after breakfast (9:30 AM) I take 100mg Losartan and 5mg Amlodipine for BP plus 2 tabs of standard 25/100 Sinemet and 300mg Ursodiol, 150mg Lyrica, vitamin D3 and B12. After lunch and again after diner I would take 2 tabs of standard 25/100 Sinemet, 300mg Ursodiol plus 150mg Lyrica. At bedtime, 300mg of Ursodiol. My brilliant revelation was that one or more of my meds, other than Lyrica, may be causing my problem. So the next morning I did not take any of my meds or vitamins. Voilà! No “foot” issues. I decided to skip all of my pills after lunch. Still no issues. After dinner no issues. After breakfast the next day, I elected to remain off of all drugs. I did this once before, stopping all drugs except Ursodiol, and managed quite well for 1 month. This time I stopped all drugs including my beloved Ursodiol. I was enjoying being drug free and not having any foot issues but after a few weeks, things started to go south rather quickly. My tremors returned almost as they were when I was first diagnosed with PD and I developed a psychosis (sleep disorder) which almost sent me into rehab. Working with my Neurologist, I titrated back onto all of my drugs (including a small medicinal amount of Lyrica as needed and 1 tablet of 25/100 standard Sinemet. As for my sleep disorder, I’m still recovering from that little by little. What about the Lyrica and Sinemet you ask? Read on. There is a lot more detail that I could relate but I don’t want to bore you. So what did I learn and going forward, what am I doing today and what lesson(s) do I want to relate to you the reader. My neuropathy was caused by an undocumented side effect to Sinemet. For some strange reason, this would occur 1½ to 2 hours after ingesting Sinemet. I found that I could not take more than 1 tablet of standard 25/100 Sinemet. At the suggestion of my Neurologist, I tried the slow release version of Sinemet. This version of Sinemet is approximately equivalent to 80% of the standard version. I now take 1 tablet of 50/200 Sinemet CR 4x/day (every 5 hours). I do occasionally experience some off time during the 5th hour. When necessary, I can and will supplement this dose with 1 tablet of 25/100 standard Sinemet. Right now, this regimen is working for me. However, it is not as good at controlling my tremor as my prior dosing. But thankfully, I have very little reoccurrence of neuropathy. In the future, I may readjust my dosing schedule to see what works best for me. So, to the few recent posters who are having strange problems (especially neuropathic), you may want to consider drug side effects before seeking other remedies. But be forewarned. Do not abruptly stop any of your medications cold turkey. Some meds can cause severe physical and/or psychological issues. My sleep disorder was caused by my abrupt stoppage of Lyrica. It is probably okay to experiment with skipping a dose or two to see if this is what ails you. However, I would strongly suggest that you first seek the advice of your Neurologist or MDS. Lastly, this unplanned episode allowed me to reexamine life with and without Ursodiol (UDCA). I can attest to Rick Copple’s findings. [T]UDCA is a potent adjunct to controlling our PD symptoms. As for slowing PD’s progression, my experience says it does. But this is not in any way definitive. Like Rick, I’m back on it and will remain on it for the foreseeable future. If you have any questions, please feel free to post them here. I will also respond to private emails or messages but would prefer an open discussion. I hope someone benefits from this story. Thanks for taking the time to read it. Fred mrfritz@comcast.net
  6. http://pdrecovery.org/updates-latest-research/

    Instead, go to http://pdrecovery.org and read it carefully.
  7. URSODIOL - A Potential New Drug for PD

    Hi Marc. I see you're busy making new friends on the forum. Nice post. ☺️ Fred
  8. URSODIOL - A Potential New Drug for PD

    Why are you giving Rick the 3rd degree. Just as I have done all these years, Rick is telling you his experiences. Be grateful and learn from it. BTW, my recent ordeal, which I will be sharing with you very soon, corroborates what Rick has alluded to regarding [T]UDCA's effect on symptom relief and progression. Jon and others have also posted similar experiences.
  9. URSODIOL - A Potential New Drug for PD

    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, Fred
  10. Latest Stem Cell Research News

    Thanks for the update. Very interesting. Unfortunately it is probably too many years away to help most of us.
  11. Restore Gold

    Very nice of you et al indeed. Keep up the good work. Fred
  12. Restore Gold

    What some may not have picked up on is that Jon (jds6958) runs a ministry, not a company. As I understand it, there is no profit motive and the ministry underwrites any loses. Fred
  13. Restore Gold

    Yes, I know and I wish you and your mom only the best. However, here is where you are not correct. It does not matter how much or what medications I take nor the degree of PD symptoms I have. In fact, the amount of my PD's progression is also of no concern. What matters is that almost immediately after starting UDCA my PD symptoms almost evaporated and remained that way for nearly 4 years without any change in medications. Now, some tremor has returned but it is nothing significant like my pre-UDCA tremors. So I am still on UDCA and I intend to continue its use well into the foreseeable future. One thing is certain and that is UDCA has caused me no harm. Fred
  14. Restore Gold

    Some Final Thoughts (maybe) for the Lurkers: Wow! Just one simple question from Italy52 has caused such a rumpus. Already there are 44 replies and 813 views covering 2 pages. It seems that newbies are still in search of a miracle as I was many years ago. Alas! Our Neurologists only have drugs like Sinemet to hopefully reduce symptoms such a tremors. However, these drugs do not always provide effective relief of symptoms and they have side effects of their own. If one had bothered to read through my thread, “URSODIOL - A Potential New Drug for PD,” [I know it’s a big read] they would have found the answers to most of these questions. As for many others in this forum, they still don’t believe our findings but have not tried taking it. So here is my nutshell synopsis: UDCA (Ursodeoxycholic Acid) is the generic name for the brand name prescription medications Urso, Ursodiol and Actigall. Recommended daily dose is 1200 mg daily. TUDCA (Tauroursodeoxycholic Acid) is the generic name for the taurine conjugate form of Ursodeoxycholic Acid. It is a non-prescription FDA approved health food supplement. Recommended daily dose is 1200 mg daily. Restore Gold (a supplement): Serving Size: 4 Capsules Daily. L-Tyrosine 400 mg; 1,600 mg † TUDCA mg 300 mg; 1,200 mg † Grape Seed Extract (95% Extract) 60 mg; 240 mg † Green Tea Leaf (50% Extract) 200 mg; 800 mg † N-Acetyl Cysteine (NAC) 400 mg; 1,600 mg † Acetyl L-Carnitine 100 mg; 400 mg † Alpha Lipoic Acid (ALA) 100 mg; 400 mg † † Recommended daily dose If you like Restore Gold but do not or cannot purchase it from WHP, you can buy all of these ingredients separately to obtain equal results. UDCA, TUDCA and Restore Gold provide equal benefits for symptom reduction in Parkinson’s disease. Restore Gold believes that it imparts additional health benefits which may include a further slowing of disease progression. The slowing of progression is only a hoped for result. There is no way for any of us to determine if this is in fact true. Not everyone benefits from this regimen as each of us is different and Parkinson’s is not just a single disease. For those patients for whom it does work, results in the form of symptom reduction vary from almost immediate (1-3 days) to as much as 90 days. My personal experience was 36 hours. Most who posted their results in my thread had similarly fast results. One of those patients was a founder of WHP. Based on my emails, most who have tried this regimen prefer to remain silent. Currently, there is a clinical study of Parkinson’s patients and UDCA. This study is scheduled to end May, 2018. Question: Will UDUCA, TUDCA or Restore Gold interfere with any of my other medications? UDCA and TUDCA are not known to interfere with any PD medications. However, the Restore Gold web site says that the ingredient L-Tyrosine can interfere with some antidepressant medications and thyroid medications. We recommend that you consult with your pharmacist or medical professional prior to use. Question: Are UDUCA, TUDCA and Restore Gold safe for me to take? The use of these products may be contraindicated for you if you suffer from any gastrointestinal issues. If you have any doubts, check with you PCP or pharmacist. All of these products are FDA approved. In the case of UDCA, there is a long term (20 year) clinical study demonstrating its safety at these dosages. UDCA and TUDCA are synthesized bile acids which have been in use since the 1950’s. Bear bile has been used in traditional Asian medicine for thousands of years. Its first recorded use was in the Tang Ban Cao (Newly Revised Materia Medica, Tang Dynasty, 659 A.D.). Bear bile contains high levels of ursodeoxycholic acid (UDCA) known by Chinese doctors to be useful for treating liver and gall bladder conditions. Question: If this product is so beneficial, why doesn’t my neurologist prescribe or recommend it? Every specialist (doctor) has an arsenal of “approved” drugs that they prescribe from. They can legally prescribe any other drug that is not on this list. The uses of any other drugs are then referred to as being “off label.” For example: the drug that I take is Ursodiol which is normally used to treat Gallstones and Primary Biliary Cholangitis but not any neurological disorders. A prescription for Ursodiol is normally issued by a Gastroenterologist. Since my Neurologist issued my prescription and I do not have any liver disease, my use of Ursodiol is considered to be “off label.” As such, my Neurologist could incur increased liability should anything happen to me. Many of today’s drugs where, at one time, “off label” for their current usage. Recent clinical studies have shown that UDCA or TUDCA may be beneficial in treating a whole host of other neurological disorders such as ALS and Parkinson’s. Fred mrfritz@comcast.net
  15. Restore Gold

    IMHO, you would be better off taking Sinemet rather than Mucuna Pruriena. As for RG or plain TUDCA, I think it is worth trying for what ails you. Fred
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