Coffee and Parkinson's

[park_bear]

Coffee beans

It looks like a couple of ingredients in coffee may help protect against Parkinson's:

parkinson.org/blog/science-...

"For years, drinking coffee has been associated with having a reduced risk of developing Parkinson's disease (PD). In fact, a 1968 study suggested that coffee drinkers were less like to get PD (Nefzger, Quadfasel, & Karl, 1968). Since then, multiple epidemiologic studies have confirmed the PD/coffee connection (Ascherio et al., 2003; Ascherio et al., 2004; Fujimaki et al., 2018). Researchers have mostly attributed the protective effect to the caffeine component (Lee et al., 2013)."

pnas.org/content/115/51/E12...

" Here we show that eicosanoyl-5-hydroxytryptamide[EHT], which we purified from coffee ... works in synergy with caffeine in protecting against mouse models of PD and Dementia with Lewy bodies...

Considering epidemiologic and experimental evidence suggesting protective effects of caffeine in PD, we sought, in the present study, to test whether there is synergy between EHT and caffeine in models of α-synucleinopathy. Coadministration of these two compounds orally for 6 mo at doses that were individually ineffective in SynTg mice ... resulted in reduced accumulation of phosphorylated α-synuclein, preserved neuronal integrity and function, diminished neuroinflammation, and improved behavioral performance...

To test for a synergistic effect of EHT and CAF on α-synuclein−mediated pathology, we chose a relatively small dose of EHT in this study (12 mg/kg/d in chow)"

This translates to about 100-150 mg per day for a human. I was unable to find any indication of the EHT concentration in coffee, however, a cup of coffee contains around 100 milligrams of caffeine. So a cup of coffee may or may not contain that much EHT. Be that as it may, the epidemiological data tells us that coffee helps protect against Parkinson's.

Thanks to Zawy for help translating mouse to human dosage.

Question: has anyone here taken up drinking coffee after receiving a Parkinson's diagnosis, and if so did it make any difference?

[Despe]

PB,

Before diagnosis, my husband had a cup in his hand all day long! Loved coffee and had several cups of coffee a day. After diagnosis, he can't stand it. Occasionally, he will have half a cup of coffee. Mystery! Go figure.

[Hikoi in reply to Despe]

Similar experience. I think it is mostly the drugs that make me dislike coffee.

PB i remember a PD friend doing a survey on coffee drinking in 2008. I believe it it is well documented that coffee is good for the brain and cigarette smoking provides some protection, it also delays the development of PD. The one I like best though is dark chocolate at least 70% is good for the brain.

[WinnieThePoo in reply to Hikoi]

Don't lead me down that dark alley. I have already been trying to persuade Mrs WTP to let me smoke a few Romeo y Julietta cigars to keep away the mossies which bite her. I keep telling her nicotine is good for PD

Sadly of course, smoking is pretty disastrous for the rest of our health - so I guess I'll stay good, and make coffee my vice

[park_bear in reply to WinnieThePoo]

I found high-dose thiamine to be a good mosquito repellent

[WinnieThePoo in reply to park_bear]

Nice idea, but I don't get bitten. I take Sue with me as bait. Do you think if I take high dose thiamine it will stop her getting bitten.

Or maybe if she takes it my PD will improve - without me compromising the SPARK trial

Maybe just one cigar ?

[Xenos in reply to WinnieThePoo]

Some people use nicotine patches in hope of stopping PD progression...

[WinnieThePoo in reply to Xenos]

It's not as much fun as a cigar...

[CapSage in reply to Xenos]

I have a friend in Paris who uses nicotine patches to help with PD symptoms.

[Hidden in reply to Despe]

Same thing happened to me!

[boundless in reply to Despe]

My coffee drinking has almost stopped.I have a hard time swallowing it unless it is hot. I was told the reason is because it is too thin. Drinks should be thicker like some juices. Or, drink thicket. I don't think I would like my coffee made with that.

Lois

[WinnieThePoo]

I keep wondering why I don't drink more. 3 cups a day is the tipping point, and I drink 2. Gonna have to try to squeeze in a 3rd

[ParlePark]

I’ve been a heavy coffee drinker all my life until around dx. I can’t drink regular coffee anymore as it seems a catalyst for tremors. I now drink decaf only.

[marcet]

I continue drinking coffee after the pd diagnosis, usually 2 cups a day. It does nothing for me except to increase my tremors....

[MarionP in reply to marcet]

Do you use any medications?

[marcet in reply to MarionP]

Yes, b1 injections, azilect and madopar

[GymBag]

I have been saying this for years. If you do not feel so great ,walk over to the closest coffee shop and have a couple donuts and a large coffee. Talk with the other people , solve the worlds problems, sip the coffee , and an hour later walk home . You will feel much better.

( Lessons learned : always take your wheeled walker no matter how you feel and take your meds with you. oh and tell your wife where you are going. )

[Xenos in reply to GymBag]

I wonder how they will test that protocol on mice.

[GymBag in reply to Xenos]

Tiny little cups.

7.7 times smaller than regular cups.

I am in Canada ,home of the double, double so there is a high sugar and cream content which the mice like.

[zawy]

EHT appears to be like C5HT which is 20x higher if you use French press because it's a fatty acid that floats. But C5HT is only 3.5 mg per liter of coffee.

ncbi.nlm.nih.gov/pubmed/200...

To convert from mice to human, divide your 750 mg/day by about 7.7. The amount of caffiene they used was 50 mg/kg/day which is a dose of 50*70kg / 7.7 = 454 mg/day for people.

The body weight conversion should be adjust by the calories per body weight that the animal consumes. Mice weigh about 20 grams. The conversion to 70 kg person is (70,000/20)^0.25 = 7.7. EPA and FDA use 0.33 instead of 0.25 but that's based on an old method that was found in 1988 to be inaccurate, but they did not change it because it results in higher numbers and EPA and FDA are focused on toxicity instead of nutrition, so they want to over-estimate the amount that will be toxic.

[park_bear in reply to zawy]

Thanks for the correction and addressing this important topic. From what I was able to find it appeared that the correction factor for mice was 12 for rats was 7, but I was not satisfied with references that I found. Could you point me to some good references on this subject?

[zawy in reply to park_bear]

The 12 is based on the 0.33 factor instead of 025. 0.25 is supposed to be more accurate. I thought 0.25 was a smaller dose, but it's a larger dose. fda.gov/media/72309/download

[windhorsepixy]

Also.... selfhacked.com/blog/chlorog... ( in particular #7) - And...

sciencedirect.com/topics/ne...

- wish I could find more data linking Chlorogenic acid to experience/studies involving

PD. If anyone has any other info - please share.

[windhorsepixy]

to continue ... found this - ncbi.nlm.nih.gov/pmc/articl... -

don't know if Chlorogenic acid ( & relateds) has been discussed here before, but it's MY new focus.

[M1tz1]

My late husband was Danish, a nation of coffee drinkers. He drank a lot of 'real' coffee--not instant coffee--but, sadly, that did not protect him from getting PD.

[Hidden in reply to M1tz1]

Yes. I was also a very heavy coffee drinker before diagnosis.

[CapSage in reply to M1tz1]

Yeah, I too used LOTS of coffee and dark chocolate before PD DX to get by on less sleep running a business and giggin' music in off-time and sleep-time. Once diagnosed, I queried this with a Naturopathic Doctor, and he said to eschew coffee completely and forever. So, it may well have prevented my getting PD for about 10 years, but after "getting" PD it did seem to exacerbate my tremors. I now avoid coffee and chocolate...most of the time.

[M1tz1 in reply to CapSage]

Sorry, CapSage. I still drink coffee. Have not been diagnosed with PD but with Intentional Tremor. Have very poor balance (have to use a stick) and no arm swing but am keeping exercised and staying away from the doctor!

[CapSage in reply to M1tz1]

Thank you for your reply! And dittos here about, "staying away from the doctor...."

[MarionP in reply to CapSage]

following your diagnosis, did you start medications around the time you stopped tolerating coffee?

[CapSage in reply to MarionP]

I started manifesting symptoms of PD in late 2012, and...I stopped drinking coffee and avoiding chocolate (caffeine) circa 2014 after being formally diagnosed with PD. I didn't start using Sinemet until Feb, 2018 when tremors-anxiety were inhibiting my efforts to improve myself and my PD symptoms.

[Smokeypurple]

I didn't drink coffee for 15 years before PD diagnosis. Quite soon afterwards I started having one cup a day mid morning and it seemed/seems to help afternoon fatigue a lot. Before diagnosis I couldn't work out why I was feeling so intensely fatigued in the second half of the day.

[pmmargo]

Yes I started drinking espresso. I dont know if it helps but I've been enjoying it!

[jrg54321 in reply to pmmargo]

So did I soon after diagnosis. Very enjoyable. Keeps the sleepiness at bay.

[caitilin]

I drank coffee my entire adult life. I'm 70 now and I'm still drinking it. Just before I was diagnosed, I had RLS to the point of not sleeping for multiple days consecutively. I would have to walk around my dining room table for hours in order to keep my legs free from the "creepy crawlies". One night, about 3 in the morning, I was hungry for coffee. I thought well, it can't hurt; I'm up anyway. So, I drank a cup of coffee as I stumbled around the table. Within 20 minutes I was yawning and feeling sleepy. I could feel my shoulders drop, my face relax, and when I sat for just a few minutes my legs were free of the "creepy crawlies". Coincidence, I thought. Now I have a cup of coffee with my night time dose of Carbidopa-Levodopa. The same result, RLS is subdued and other tremors are calmed! My first discovery was 2 years ago; coffee is still my friend.

[Xenos in reply to caitilin]

I will test that this very evening ! I hate RLS, drives me crazy.

PS - I used to be a heavy coffee drinker - 7 espressos a day for over 20 years - until being diagnosed. I then lost my craving for coffee.

[caitilin in reply to Xenos]

It would be nice if you could find some comfort/relief in a cup o'coffee. It has a paradoxical effect on me; I'm lucky that way. It helps me sleep. It doesn't help to keep me awake.

[MarionP in reply to Xenos]

Your comment was months ago. So what happened, with trying some coffee? And, like several others, I'd like to know did your loss of craving for coffee coincide with starting medications?

[Xenos in reply to MarionP]

Hi Marion,

I tried for a week - no RLS - and came back to my previous habits. Only one night with RLS, and I took Xanax 0,25 mg.After a short while I was sleeping again.

Did my loss of craving for coffee indeed coincide with being diagnosed with PD, but I am not sure if this is related.

[windhorsepixy in reply to caitilin]

My grandmother always had a small cup of coffee right before bed. Always thought it might have something to do with her growing up in Louisiana. Everyone is so different. I'm going to get my husband to try it.

[CapSage in reply to caitilin]

You take C/L at night? Does it help you sleep? And, what is your dosage per day total?

[caitilin in reply to CapSage]

Yes, C/L 25-100. I dose myself around the clock; 7am, 11am, 3pm, 7pm, 11pm, 3am.... I only do that because my symptoms wake me and tell me “it’s time!” I have coffee at 11pm and 3am. It works for me; but everyone is different.

[CapSage in reply to caitilin]

Thank you Caitilin! I've often wondered if other PWPs take C/L before and during sleep. I may try that. Some months earlier, I started taking my Sinemet 1 in the morning, and two in the mid-afternoon....I believe it was because I needed more tremor help in the late afternoon and early evening then.

Also I was advised by Dr. Datis Kharrazian to beware of blood sugar spikes up or especially down, thus I have found it helpful to eat before bed....not sugar, spicey or heavy protein, but ideally veggies. This has helped me increase my ability to sleep longer in the mornings after a too-short series of 1-2 hour "naps" all night.

[AmyLindy in reply to CapSage]

I follow Datis K too- he’s got good stuff !

[CapSage in reply to AmyLindy]

Yes, Datis is an incredibly intelligent professional! His brain book is like a bible on the subject too!

[aspergerian13 in reply to caitilin]

An important anecdote. Thank you.

[Johnboy46]

Hi, I have always been a heavy coffee drinker. In the early 90s I was working for a very large trucking company, working nights shunting the trucks / trailers around the yard. In the quiet times between shunts I used to have a cup of coffee, sometimes as many as 20, yes TWENTY in a 10 hour night shift. I managed to cut down over the years when I changed duties but even today, now I'm retired, I still drink 5 to 8 cups a day. I can't get to sleep without a cup before bed. As to the mozzie / gnat bites, I drink Guinness and have never been bitten, Mrs Johnboy gets bit all the time. But if I had to give up Coffee or Guinness it would be the Blonde in the Black Dress (Guinness).

[Despe]

ncbi.nlm.nih.gov/pmc/articl...

Or you may try LITHIUM OROTATE. Am I being redundant?

[park_bear in reply to Despe]

I shall peruse this when I get a chance. Have you noticed a beneficial effect?

[Despe in reply to park_bear]

There is a beneficial effect, where it's coming from, who knows, PB!

[MarionP in reply to park_bear]

Did you ever further your consideration of lithium orotate? And art had a comment below, anything to add based on that?

[park_bear in reply to MarionP]

As I recall I did read the study at the link and thought the idea had merit. My motivation to actually try is low because I did try a long time ago and with no result. It is possible I needed to use different dosage or longer duration.

[chartist in reply to Despe]

Despe,

A friend's mother who had AD, did quite well on LO for many many years. My friend started giving her mom LO after she had had AD for about 5 years and was progressing quickly. The LO apparently slowed the disease progression very significantly over a period of more than 15 years with a dose of just 5 mg/day. I only saw her once a month at most and any changes due to AD were not apparent to my untrained eye. When lithium is used for mental issues it is used at doses ranging from 1200 mg / day to 1800 mg / day.

LO is very inexpensive, readily available without a prescription and at the very low dose used for AD, it has a good safety profile. Most of the available products will say something like:

5 mg of Lithium from 120 mg of Lithium Orotate.

Art

[Despe in reply to chartist]

Thanks, Art!

I believe you had written about your friend's mother having AD and how well she did with LO. Dr. Mischley recommended it for my husband, but she also recommends it to all PwP. He takes 5mg/day. I believe it's worth trying it.

He is also on 1/2 t Azilect. I don't know what exactly has improved his symptoms so dramatically, but the last 2 weeks he is almost back to "normal." He also started his B1 injections, 50mgX2/week with a week's break. In addition, he now takes WP Thyroid meds (porcine) instead of Synthroid which he took for years and did nothing for him. He is only on 1/2 t Sinemet and 180mg MP a day. Combination of all these, plus some other supplements, especially AMLA have probably contributed to his unbelievable improvement.

PS. Sorry for my delayed response, we were out all day.

[chartist in reply to Despe]

Despe,

I'm glad to hear your husband is doing so much better now, great news!!!

Let us know when you figure out what caused the sudden change for him.

Art

[Despe in reply to chartist]

Sure, will Art!

PS. Forgot to mention that Dr. Mischley recommended Hemp Max by Douglas Laboratories and Melatonin which he both started a couple of weeks ago. I believe Hemp Max has really made the difference, but B1 has added its benefits which he had stopped for a month and a half, maybe longer, due to his surgery.

[Chicachi]

I drank coffee since age of 12 and I still got PD