Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
MrFritz

URSODIOL - A Potential New Drug for PD

Recommended Posts

Drummergirl    95

Hi New Normal,

 

I fully agree with you and Fred, if something works for you, go for it!

 

How much coconut oil and how frequenty do you take it?

 

Thanks,

Karen

Share this post


Link to post
Share on other sites
New normal    1,273

(Augghh...jst erased my post..let's hope short term memory is w/me.)

 

Hi drummer girl,

 

I will try again to respond to yr question. I just accidentally erased my first attempt...which may prove to some that there is a God, since it probably was way too long, anyway. :)

 

Rather than misinform you regarding use of coconut oil, I suggest you google coconut oil and any chronic neuro condition you may choose. There is an abundance of info on the net, albeit anecdotal.

 

I was told abt coconut oil from an ICU nurse who noticed my right side tremors while I was attending my dying brother. She said she has essential tremors, and many of her family members have PD..all receive relief from the oil. I was surprised by the number of links which described successful symptom improvement for ALS, MS, PD, and Altzheimer's . A pediatric surgeon gave coconut oil to her husband who has severe Altzheimer's and documented the results. He dramatically improved, and within days he passed cognitive tests he had previously failed. She started collecting other anecdotal data from persons who have benefited from the oil. Her work is so compelling, that the site says the Altzheimer's Foundation is conducting studies to confirm/validate her findings.

 

My hypothesis: some PWP have a genetic predisposition to fatty acids not able to transcend the blood/brain barrier. That would explain why atypical patients such as I who have normal MRI's and DaT scans present with PD symptoms and respond positively to coconut oil. I am able to decrease my levodopa carbidopa dosage by half when I take the oil.

 

I am NOT a medical professional and in no way suggest to ANYONE to alter their rx regimen. I feel safe in this environment to pose information for discussion among people who live with this bizarre chaotic disease without feeling I am subject to chastisement. This disease is named after an individual, not a methodology .... The disease spreads over a vast field of variables, and therefore is subject to a large array of opinions.

 

I find it interesting that a drug that is intended for liver disease improves PD symptoms. Since my brothers hv severe Altzheimer's , I wonder if my condition is famial.

 

Since no one has determined the exact cause of PD symptoms in all people, the topic lends itself to some earnest,...and enthusiastic, at times....discussion.

 

I suggest you research, partner with your medical provider, and continue to be engaged in your own destiny. I am excited to be setting my sail into chartered waters...I wish you well.

  • Like 1

Share this post


Link to post
Share on other sites
Rogerstar1    385

OOOOPS..I meant "unchartered waters"...dang spell check !

 

no you didn't...what you meant to say was uncharted waters.  Drop the e and the r for correct usage.   The phrase means unmapped, not non-hired.

Share this post


Link to post
Share on other sites
MrFritz    110

Hi New Normal (I hope that's not your real name :-P),

 

You (as well as anyone else here) can always feel free to drop me a private vial email at mrfritz@comcast,net. Please put "PD Forum" in the subject line so I don't delete you as spam.

 

Like you, my computer just burped and I lost the long post I was working on. So, let me just give you the shortened version.

 

I was considering discussing an increase in my Ursodiol with my Neurologist when I see him in June. However, as a result of your post, I'm considering adding 2 tablespoons of coconut oil twice a day (after breakfast and after lunch) to my current regimen. I figure it won't hurt me and I may benefit from it. I'll post any results here.

 

I have my Ursodiol and you have your coconut oil. And, as I said in my last post, an article about Nicotine seems to show it to be of benefit too. Trials are also currently under way with stem cell therapy. So it seems that there is more research going on that we're unaware of. My hope is to do whatever I can do for myself to stop or slow down the progression of symptoms. I want keep this lousy disease in check so that I will never need to consider having a DBS procedure or get on the waiting list at my local nursing home. So far, the Ursodiol seems to be working for me and the coconut oil seems to be working for you. Maybe the combination will prove to be even more beneficial. All one can do is hope. But, if you're just complacent rather than being proactive, you may not be in a position to reap any benefits if and when they arrive. But it may also be true that it may be to late for those with more significant symptoms than us to benefit from either Ursodiol or coconut oil.

 

Fred

 

Share this post


Link to post
Share on other sites
New normal    1,273

Yay! A wordsmith!! You are absolutely correct! I wish I cd blame PD for the error...I think my brain is dimming because of hard use for over 60 years rather than a disease process!...raising five children will damage anyone's verbal capacity! Thank you for bringing it to my attention...it is always nice to know at my age, SOMEONE is actually listening! :) have a great day today, Roger...that is ONLY if you choose to..:)

  • Like 1

Share this post


Link to post
Share on other sites
MrFritz    110

Well, I decided to try "New Normal's" coconut oil. My web research suggested 6-8 tablespoons per day. So I bought a jar of Raw Organic Coconut Oil. On Friday evening I took 2 tablespoons after dinner. On Saturday I took 6 tablespoons (2 after each meal) and on Sunday I took 4 tablespoons (2 after lunch and 2 after dinner).

 

I was pleasantly surprised by it's lack of smell and taste. I expected more. But, even though I'm know for having a cast iron stomach, it did make me burp and gave me some reflux. Reflux is something I almost never get. So if you're going to try this, I would recommend mixing it into your food rather than just spooning it into your mouth as I did.

 

Did it work? I didn't note any change in my symptoms. This may be because my symptoms are minimal due to the Ursodiol I take. Since I won't be going off of the Ursodiol, I'll have to leave this subject for others to try and comment on.

 

Fred

 

 

 

Share this post


Link to post
Share on other sites
Drummergirl    95

I started the raw coconut oil yesterday -Sunday late afternoon.

Started with a much smaller dose than Fred I must say.

Like one tsp in my protein drink.

 

One tsp this am Monday in my tea, another tsp in my late afternoon smoothie.

I also used it as a skin lotion as the weather here in VT is cold and dry..... felt great!

 

As Fred said, I expected more coconut taste, but I' m glad I didn't really taste it as Im not a big coconut fan....

I will report as often as time allows. Today, Monday I had a great day, no wear off yet and my mind was clear and no tiredness. YET,

It is now 4:30 pm. I haven't a clue if the good day has been from the cc oil, but my skin feels good!

 

Karen

Share this post


Link to post
Share on other sites
miracleseeker    668

Fred,

 

Why are you trying the coconut oil when you already feel so good on Ursodiol?  You are also taking a lot at once.  Better watch it! :-P

 

I started it on my mom since 2 days ago but only 1 teaspoon twice a day to start and so far nothing exciting to report. I tried it and it tastes really gross. Melted or solid.

  • Like 1

Share this post


Link to post
Share on other sites
MrFritz    110

Hi Karen (Drummergirl),

 

Thanks for posting and do keep us updated. I would suggest warming the coconut oil (it melts at a very low temperature) and using it instead of olive oil in your salad dressing. Also, use it as a spread instead of butter. You get the idea. If you consume it with solid foods rather than liquids (i.e., tea), it is less likely to upset your stomach.

 

I don't think your current dosage level will do much if anything for you. Even the label on my jar recommends 2 tablespoons per day.

 But I also think you should slowly increase your dosage over time.

 

If the coconut oil works anything like my Ursodiol, then your tremors and down time should be greatly reduced within a few days of taking the higher dose. As for me, I'd rather take 2 capsules of Ursodiol a day than consume so much coconut oil. The coconut oil, besides being hard on my stomach, contains a very high number of calories and saturated fats.

 

LOL - You girls and your skin creams! Next you'll tell me that you added it to your bubble bath :-P

 

To miracleseeker: Very good question. I wanted to try it so that I would have an alternate option should the Ursodiol ever stop working for me. Although it's to early to say for sure, it looks like Karen is reaping some degree of benefit from it at a very low dosage level. As for me, I'm waiting for her future reports before I pass judgment on it.

 

As an aside, my son-in-law is a doctor and his father is suffering from some issues with dementia. He too had previously read about the benefits of coconut oil for neurological disorders. He wanted his father to try it but, unfortunately, his mother wouldn't consider it.

 

Fred

Share this post


Link to post
Share on other sites
New normal    1,273

Hey guys!

 

Glad to see you trying the oil..

 

Fred: I get the reflux too. I think it is the oil ...if I chug it after a drink of juice and follow with a juice drink it improves.

 

Glad people are taking it easy. The video clip re: the pediatrician and her husband's reaction to the oil is on approx page 15 of this open forum. Maybe if u do a search you can see it. It goes further to say they are trying to get a stronger strength developed, but of course, they need funding. The topic is "coconut oil".

 

Thank you for sharing. I sure hope it helps some people..as I have said, I think it works for those of us whose origin of PDmay be metabolic in nature!

 

Good luck and keep posting!

Share this post


Link to post
Share on other sites
miracleseeker    668

Fred,

 

How would you know if coconut oil works for you if you still take Ursodiol? You have to eliminate it to find out and since you already said you won't then trying the oil is pointless.

 

I put a tablespoon in my mom's oatmeal today.  It was slimy and gross and uh... oily.   I'm still waiting to see results. Kinda early to tell for now I know.

Hopefully her stomach can take it.  There has to be a better and quicker way to take it.

 

 

Share this post


Link to post
Share on other sites
MrFritz    110

Hi Miracleseeker,

 

Sorry that I can't properly answer your question. But here's the best I can say.

 

I agree that I should have been off the Ursodiol if I wanted to make this a proper test. Although I take Ursodiol and I am nearly symptom free, I still do have some intermittent minor tremor. So, I thought that if I take the coconut oil and it worked for me, those minor issues would be eliminated. It didn't happen. So, I stopped taking the coconut oil.

 

Now, Karen (Drummergirl) says she is taking a very low dose and thinks she is seeing some benefit. I think we need to wait for her future responses (and possibly those of others) before passing judgment.

 

Anyway, I find that taking Ursodiol is so much easier and cheaper and I have yet to have any side effects from it after 5 months.

 

Fred

Share this post


Link to post
Share on other sites
Drummergirl    95

Day three, up to 3 teaspoons a day. No it isn't much, but I'm slight and starting off with small doses works best for me.

 

Have to say, no wear-offs during the days. I woke last night with some tremor. I took a half of carb/ levo and I responded quickly.....

I took one whole pill less yesterday.....so far, the same today....

Fred it seems to melt just fine in my tea and mix well in my fruit smoothie. I haven't tried eating by itself yet.

 

I might just try it in a bubble bath!! lol

 

Karen

  • Like 1

Share this post


Link to post
Share on other sites
MrFritz    110

Hi Karen,

 

That sounds like great news to me. I'm really glad to hear it. But I would be careful about reducing your meds at this early point.

 

I told my wife what you said about using it as a skin cream so she tried a little on her hands and liked it. Maybe we should start a new business. :-P

 

Seriously speaking, when I took it at night just before bedtime, I had to take some Tums to reduce the reflux. But, I was eating 2 tablespoons of the stuff.

 

Fred

  • Like 1

Share this post


Link to post
Share on other sites
MrFritz    110

UPDATE TIME  -  2 Items that may be of interest.

 

1)  A reader of this thread who wishes to remain anonymous has been in touch with me regarding using Ursodiol. This person's symptoms were severe enough that an assistant had do the typing in order to email me. This person is not taking any dopamine medications. After taking 300mg of Ursodiol per day for a week and not seeing any results, the dosage was increased to 600mg per day (which is what I take). At that level, this person is now able to type again and has had a significant decrease in tremors. All without taking any Sinemet.

 

2)  Because of this person's results in conjunction with Karen's (drummergirl's) last post wherein she said "I took one whole pill less yesterday.....so far, the same today...." since taking the coconut oil, I have decided to try to reduce my meds. I had been taking 6 tablets of 25/100 mg Sinemet (Carbidopa/Levodopa) every day. As of this past Friday, I reduced my Sinemet to 4 tablets per day. I'm still feeling fine. So I'm going to stay at this level until next week. If I'm still okay then, I am going to try to cut back on my Sinemet to 2 tablets per day. Of course, my goal would be to get off of the stuff completely but this may not be feasible. We'll see. I'll keep you posted.

 

Do you still think that Ursodiol (or for that mater, maybe even coconut oil), won't help you too? Time to get proactive and help yourself. If it doesn't work for you, what did you lose? It can't make your PD worse and it doesn't interfere with any of your PD medications. If it doesn't work, stop taking it and send me a nastygram :-P

 

Fred

 

Share this post


Link to post
Share on other sites
Drummergirl    95

Update, day four and five, same as day three. 3 tsp. of the coconut oil, 1 sinemet less for the day.

Day five we went to dinner with friends, ate more protein than I normally do in a meal, also had 1 beer. I was expecting a wear off following, but to my surprise and delight, not so! Still 1 less Sinemet.....

 

Day 6, I only had 2 tsp of cc oil, had a slight evening wear off after dinner. Need to plan other ways to incorporate it in my diet.

 

Still like it on my skin!

 

Karen

Share this post


Link to post
Share on other sites
MrFritz    110

Karen,

 

That's great to hear. Keep it up. I really think you should give Ursodiol a shot. It's cheap and much easier to take and it won't cause any indigestion.

 

Fred

Share this post


Link to post
Share on other sites
miracleseeker    668

Hi Fred,

 

I thought you need a prescription for Ursodiol so you can't exactly tell people to give it a try as if it's a vitamin right?  I think for the most part doctors will not prescribe this so it may not be that easy to get it.

 

It is great that it's worked so well for you but I really don't think I would mess around with this for my mom.  Coconut oil is harmless for the most part but it might be dangerous to advise people to try this out since this is a drug with many potential side effects.  Please beware.    Thank you!

 

 

  • Like 1

Share this post


Link to post
Share on other sites
MrFritz    110

Hi (again) Miracleseeker,

 

Let's speak facts:

 

Raw Coconut Oil (the liquid version is not recommended) may work but it isn't great for you. 1 Tbsp has 200 calories (165 from fat) and 18g total fat (16g saturated). But the worst part is that it is very hard on the stomach causing significant reflux. Drummergirl is only taking 1 Tbsp or less. The recommended dosage, according to the Internet blogs, is 6-8 Tbsp per day. Try that without Tums.

 

Ursodiol does not interact with any PD medications. MedicineNet.com says the most common side effects are rash, itching, nausea,  vomiting, stomach pain, back pain, constipation, and diarrhea. As for drug interactions: Aluminum containing antacids, cholestyramine (Questran, Questran Light) and  colestipol (Colestid) reduce the absorption of ursodiol and therefore reduce its action.  Estrogens, oral contraceptives, clofibrate, and potentially other cholesterol reducing drugs may counteract the effects of ursodiol by increasing cholesterol secretion by the liver and the risk for gallstone formation.

 

Other facts: Not everyone reading this thread is in the USA. For instance, in Tiawan, Ursodiol (Ursolic) is available without a prescription. Its manufacturer's recommended dosage is 600mg per day taken as 200mg 3x per day. They recommend it for people who overindulge at the all-you-can-eat buffet.

 

To my knowledge, two people (including myself) have tried this with zero side effects and 100% positive results. Yes, in the US you do need a prescription and many doctors won't prescribe it for you. But not because it doesn't work and not because it may harm you and not because it may interfere with your PD medications. It doesn't do any of those things. They won't prescribe it because it is "off label" for treating PD as per the FDA. I was lucky. I have 2 Neurologists that prescribe it for me. If they wouldn't, I would go find another doctor who would. Last resort (not recommended) would be to get it from off-shore.

 

I have zero doubt that if a prescription was required for Coconut Oil and it wasn't approved for PD use, your comments would be exactly the same. So, when you see your Neurologist, give him a copy of the article from "Brain" and ask for a prescription. If he says no, ask why no?. Ask if it will cause harm? Ask if it will interfere with other meds? You may be very surprised at his answers.

 

P.S. - I'm not angry at you for bringing up this question again although I think you should be better informed of your facts. I am angry at the stubborn people who call themselves doctors who will only do what's "safe" for them even at the detriment of their patients.

 

Fred

Edited by MrFritz
  • Like 1

Share this post


Link to post
Share on other sites
miracleseeker    668

Hey Fred,

 

I'm not saying coconut oil is all that wonderful either but just stating a fact that you don't need a prescription for it while you do with Ursodiol in the US. So..... not against it entirely just saying it's not for my mom.  You had stated in your previous postings that you were not promoting it but looks like you are now.  It's great you want the whole world to know how it has helped you but it's good to have people know that it's not that easy to get either in case there are interested folks. Everything has side effects that I know.  Comparing apples and oranges here.  I think it's very time consuming to try and find a doctor that WILL prescribe something that may or may not work and has so many unknowns to everyone involved.

 

It doesn't matter to me one way or the other so I'm not judging.  Fact -  Not easy to get in the US and it's still a drug not meant for PD but never say never for now.  Have a good day!

 

I would love to see others come forward who have tried it and add on the positives to this drug.   It's a good discussion though. Thanks.

Share this post


Link to post
Share on other sites
New normal    1,273

Is that the issue?? Awwwww, been on vacation to return and see COCONUT OIL remains a topic...or does it? I brought up the subject originally so pls allow me to speak to it one more time.

 

This topic fascinates me on several fronts. One, I am new to PD and to its culture, having been diagnosed by MDS abt 6 mos ago. I am seeking my own identity on this island, establishing new goals, and transitioning into a new being with new limitations and new objectives. I discovered coconut oil in a surreal manner..serendipity as Roger would call it...but still, as I researched it I was amazed at the volumes of information...and anecodtal success stories from many neuro fronts.

 

I tried it and got immediate results. Shared it with others. HOWEVER, (now you tell me), I have great difficulty taking it consistently....I KNOW it helps my symptoms, I KNOW when I do not take it my symptoms return....Yet, for the life of me, I do NOT KNOW why it seems I resist the very thing that helps me...and engage in a lot of extraneous activity researching the mainstream medical opinions and find myself debating the size of tea leaves instead of doing what has proven effective. In all seriousness, I ask you veterans...what the heck is up with this? Is this a behavior common with chronic disease sufferers? I am totally serious....is there a pattern wherein some people will actually deny that which helps them the most?

 

Since I saw the impact drummergirl, Karen, has received, I went back to the oil..YEP, YOU BET...immediate improvement! Absolutely BAFFLES ME why I resist it.

 

SECOND, I find it so interesting that emotions get caught up in discussions regarding symptom control....to paraphrase, Karen, if I may...whatever floats your boat, guys..... I posted the coconut info simply because I wanted to share something that was such a dramatic and, to me, conclusive tx for my symptoms...notwithstanding my comments that underscore EVERYTHING we post...is we are NOT professionals, and want only to share helpful info. So why do we feel we have to use our limited reservoir of energy in defensive or offensive discussion.....when the fact remains we are all in the SAME bloody boat afloat???!!

 

Gosh, I love a spirited debate ...one day, Roger, you are ON! Teehee..in private ...but never at the expense of tarnishing alliances or diminishing relationships....while we all have our faculties, I hope we can continue to discuss with passion..vibrancy, CAPITAL LETTERS, for emphasis...whatever...but ALWAYS knowing we are on the same page....we are warriors amidst the same battle....this forum is abt exchanging NOT changing viewpoints.......

 

So, coconut..liver rx.....whatever....pls don't freeze this post just yet...there is more here that we can learn....truly, is it a PD symptom to self destruct by not consistently doing what we know to be of benefit to us....AND....is it part of the beast of PD or other chronic diseases that we get myopia to the extent that we adopt our disease as an ideology we defend thereby closing off to the intellectual pursuit of solutions?

 

Hmmmmmm, fascinating to me.

  • Like 1

Share this post


Link to post
Share on other sites
miracleseeker    668

Hi New Normal,

 

My mom has been taking it about 2 tablespoons a day for a week now and if anything she seems stiffer to me.  (sigh)  Good to see it works for you though.  I'll keep giving it to her.  We do have 2 jars of it. haha   Maybe it takes time....

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×