[imark3000]

An eye opening great story.
The topic was discussed on this forum in many ways and times.
Enjoy!
Imad

http://www.nytimes.com/2010/11/21/ma...pilepsy-t.html

"Curiosity bordering on alarm is the only way to describe how people receive this information. “In-teresting,” one acquaintance said. “Did you make this up yourself?” Another friend was more direct: “Is this a mainstream-science thing or more of a fringe treatment?” We are not surprised by these reactions. What we are doing to Sam just seems wrong. The bad eating habits of Americans, especially those of children, are a national health crisis. Yet we are intentionally feeding our son fatty food and little else."


"The idea of food as medicine has been a controversial topic in this country in recent years. For decades the fight that the late Robert Atkins and his low-carb acolytes had with mainstream medicine has been as vitriolic as a religious war. There are food cures for everything from cancer and heart disease to cataracts. Doctors talk about diet as a part of basic good health all the time. But talk to them about a diet instead of drugs to stop an infection or treat a tumor and most would be visibly alarmed, and in many cases, they would have good reason to be. A decade ago most doctors held the same contempt for keto. An Atkins-like diet that worked as well — and often better — than antiepileptic drugs? Common sense suggests that’s crazy."

[pegleg]

imark

This kid is eating bunches of fatty foods, but it's helping control his seizures (beforeo the diet change as many as 130 a day). Here's what they say he eats:

There is no crusade against unhealthful food in our house. Some might argue that unhealthful food is all we let Sam eat. His breakfast eggs are mixed with heavy cream and served with bacon. A typical lunch is full-fat Greek yogurt mixed with coconut oil. Dinner is hot dogs, bacon, macadamia nuts and cheese. We figure that in an average week, Sam consumes a quart and a third of heavy cream, nearly a stick and a half of butter, 13 teaspoons of coconut oil, 20 slices of bacon and 9 eggs. Sam’s diet is just shy of 90 percent fat. That is twice the fat content of a McDonald’s Happy Meal and about 25 percent more than the most fat-laden phase of the Atkins diet. It puts Sam at risk of developing kidney stones if he doesn’t drink enough. It is constipating, so he has to take daily stool softeners. And it lacks so many essential nutrients that if Sam didn’t take a multivitamin and a calcium-magnesium supplement every day, his growth would be stunted, his hair and teeth would fall out and his bones would become as brittle as an 80-year-old’s.

My question is what is this doing to this kid's heart??? I don't know - it sounds the same as us taking one medicine for one thing and then take two more to control the side effects of the first med.

I do know that many people with PD benefit from a gluten free diet - and that stuff is in just about everything! It's an allergic thing, I understand.

What kind of diet should we be eating? (other than low protein in which the amino acids in high-protein foods and meds compete against each other)
I must have missed the talk of food for management of PD symptoms. Is that what you meant?

Peg

[Conductor71]

Peg,

A few weeks ago we had a thread on high fat or ketogenic diet to treat PD. In 2005, there was a clinical trial of PWP put on a 90% fat ketogenic diet. It did improve symptoms, but the diet is not at all palatable plus unbalanced to say the least.

http://neurotalk.psychcentral.com/sh...011#post719011

As the NYT article says, treating disease through diet is nothing new. That poor kid in the article will not have to stay on that diet forever; usually kids are on it for 1-2 years and it essentially 'cures' their epilepsy. These are kids who do not respond to the drugs. Yes, I would worry about that diet for a length of 1-2 years, but is it really any more harmful than anti-seizure meds for a lifetime? There are plenty of case studies proving that any neuro drug has he potential to permanently alter our brain chemistry, and not for the better (think of Paxil's link to Parkinsonism).

Considering diet, I am trying to put together a hybrid of a ketogenic lite (60% fat, 30% carb, 10% protein), a mitochondrial friendly mix of veggies (5-6 cups a day up to 9!!) and an anti-inflammatory foods emphasis (more like a paleolithic diet). I am hoping to put together the best of all three and see if that helps.

The mitochondrial diet is from a doctor who reversed her MS Terry Wahls. The anti-inflammatory diet info is from the blog of a research scientist called Cooling Inflammation.. I am learning about fats from the work of Mary Enig and following her meals in the book "Eat Fat, Lose Fat".

Hope this helps some how and some way.

Laura

[imark3000]

I am following your steps and have made changes in my diet in line with your suggestions and particularly taking coconut oil (I reduced my carbohydrate intake but would not eliminate it altogether as they are the best source of fibre).
Results so far: I noted about 300% increase in my energy (measured as maximum ability to work out on stationary bike which increased from 150 to 450 calories), BUT NOTED NO IMPROVEMENT IN MY TREMOR.
I speculate that all cells including brain cells are better energized. So we have more dopamine but also more acetylcholine and improvement of PD tremor depends on tilting the balance in favour of dopamine. (antycholinergic drugs which work best for tremor do this by suppressing acetycholin). Hence no improvement in tremor.
This is 100% amateurish speculation only justified for lack of better explanation but I am not forgetting that little knowledge can be dangerous so please take this in account !
cheers
Imad

Originally Posted by Conductor71

Peg,

A few weeks ago we had a thread on high fat or ketogenic diet to treat PD. In 2005, there was a clinical trial of PWP put on a 90% fat ketogenic diet. It did improve symptoms, but the diet is not at all palatable plus unbalanced to say the least.

http://neurotalk.psychcentral.com/sh...011#post719011

As the NYT article says, treating disease through diet is nothing new. That poor kid in the article will not have to stay on that diet forever; usually kids are on it for 1-2 years and it essentially 'cures' their epilepsy. These are kids who do not respond to the drugs. Yes, I would worry about that diet for a length of 1-2 years, but is it really any more harmful than anti-seizure meds for a lifetime? There are plenty of case studies proving that any neuro drug has he potential to permanently alter our brain chemistry, and not for the better (think of Paxil's link to Parkinsonism).

Considering diet, I am trying to put together a hybrid of a ketogenic lite (60% fat, 30% carb, 10% protein), a mitochondrial friendly mix of veggies (5-6 cups a day up to 9!!) and an anti-inflammatory foods emphasis (more like a paleolithic diet). I am hoping to put together the best of all three and see if that helps.

The mitochondrial diet is from a doctor who reversed her MS Terry Wahls. The anti-inflammatory diet info is from the blog of a research scientist called Cooling Inflammation.. I am learning about fats from the work of Mary Enig and following her meals in the book "Eat Fat, Lose Fat".

Hope this helps some how and some way.

Laura

[Conductor71]

Originally Posted by imark3000

I am following your steps and have made changes in my diet in line with your suggestions and particularly taking coconut oil (I reduced my carbohydrate intake but would not eliminate it altogether as they are the best source of fibre).
Results so far: I noted about 300% increase in my energy (measured as maximum ability to work out on stationary bike which increased from 150 to 450 calories), BUT NOTED NO IMPROVEMENT IN MY TREMOR.
I speculate that all cells including brain cells are better energized. So we have more dopamine but also more acetylcholine and improvement of PD tremor depends on tilting the balance in favour of dopamine. (antycholinergic drugs which work best for tremor do this by suppressing acetycholin). Hence no improvement in tremor.
This is 100% amateurish speculation only justified for lack of better explanation but I am not forgetting that little knowledge can be dangerous so please take this in account !
cheers
Imad

Imad,

I am glad you are feeling more energy! I noticed an improvement there too especially since adding in a little more Vitamin D. That is really great news on your stamina for exercise getting better to boot. I noticed that too but have been remiss in not exercising for a few days, so I better get back to it.

As for the coconut oil...I think that it has only been tested with Alzheimer's patients, so I am thinking that if PD cognitive decline is at all similar, we may benefit in that dept. I didn't know what it would do for our motor symptoms; in fact, I am thinking it may exacerbate tremor. I know Madelyn just posted they had to stop because it increased twitching. Looking at our neurotransmitters, it seems coconut oil would favor acetylcholine, so maybe it's not so good for tremor? Who knows! Maybe just keep a check on it to make sure it doesn't get worse.

I am using the coconut oil mainly to jump start my metabolism to start losing weight again. It works for that, most definitely! I have yet to put together my diet; I am waiting on some meal planning software to get me up and running with it. Very impressive you are sticking with it though. Are you doing a carb, protein, fat ratio as the basis? I am also dragging my feet into this new diet because frankly I don't have the will power to eliminate nearly all processed food from our home. This is the approach Mary Enig promotes, but I need baby steps. A good crusty loaf of bread is one of life's simple pleasures, and I am holding on for dear life....lol

Laura

[pegleg]

Laura - I missed that discussion - thanks for pointing it out. Everybody knows "you are what you eat," and I am a big fat sticky bun covered with caramel icing and pecans and washed down with a mocha Cappuccino!

imark - and if you are remotely close to assessing your increase in energy (300%), then I'm headed to the grocery store this afternoon!

Thanks!
Peg

[imark3000]

Originally Posted by imark3000

I am following your steps and have made changes in my diet in line with your suggestions and particularly taking coconut oil (I reduced my carbohydrate intake but would not eliminate it altogether as they are the best source of fibre).
Results so far: I noted about 300% increase in my energy (measured as maximum ability to work out on stationary bike which increased from 150 to 450 calories), BUT NOTED NO IMPROVEMENT IN MY TREMOR.
I speculate that all cells including brain cells are better energized. So we have more dopamine but also more acetylcholine and improvement of PD tremor depends on tilting the balance in favour of dopamine. (antycholinergic drugs which work best for tremor do this by suppressing acetycholin). Hence no improvement in tremor.
This is 100% amateurish speculation only justified for lack of better explanation but I am not forgetting that little knowledge can be dangerous so please take this in account !
cheers
Imad

Originally Posted by olsen

Laura, thanks for the info linking coconut oil (thus Meium Chain Triglycerides) to the acetylcholine system. Seems any time we utilize substances which impact this system, my husband's symptoms increase dramatically. madelyn

Thank you Madelyne and Laura for your input.
It seems to me that we may be all in agreement that coconut oil (thus Medium Chain Triglycerides) is doing some thing like energizing ALL brain cells without differentiation. This is still great news if proved to be true as there is nothing in doctor's bag of drugs which helps in saving the remaining dopamine producing cells from certain death because of energy starvation due failure to utilize glucose, as far as the theory goes.
An immediate solution comes to mind which is coconut oil (thus Medium Chain Triglycerides) + anticholinergic drug which keeps acetylcholine in check.
What do you think?
Imad

[paula_w]

This is a big part of pd.....and our worst symptom in many ways - physically and emotionally, psychologically, cognitively. It appears to be excitotoxicty but not just with glutamate prolonged firing but also with all the excitatory tranmsitters (that we usually discus -s). The overfiring is somewhat corrected if you can get the right med and with research -food too -for you and all the combinations thereof.

I thought acetylcholine was bad ( it is if too much of it collects) but so is glutamate. Both can interfere with dopamine - we knew that - and GABA is low as a result of all this. GABA transmitters are the brakes and they get used up and worn out from all the prolonged firing .

Norepinephrine is disappearing along with dopamine. Meds can correct that some at least. norepinephrine is thought to be neuroprotective and by the way paxil, for all the bad things thought about it was just revealed to help pd but i can't remember why...i'll try to remember to look it up. anyone know? very recent.

i 'm going to ignore dementia. if we get dementia we'll know it. it will be at the very end if at all. i'm already used to people thinking i'm drinking or so mentally ill that they start calling me "dear" and speaking loudly [employees at the airport, for ex.] but sinemet speech is pretty bad and they tend to not get what i am saying to realize that i'm not as far gone as i look and sound. i do not feel it necessary to give up an anticholinergic and the relief it brings b ecause of worries of future dementia. That's my opinion of course i'm not a doctor.

My daughter said she was so proud of me for not just absolutely freakin out from being on so many drugs. I would be if i didn't know about them tho. Now i have to know what medications do and check the transmitter action and contraindications. I don't trust agonists and think they should eventually be discontinued at advanced stages. Too much and one of the results of agonists for me is dyskinesia. Sinemet alone does not . i get end of dose dyskinesia..know i need to take one immediately. sinemet doesn't need a booster and eventually I always ended up with a feeling in my chest that did freak me out a few times; is there anyone who has never gone to the ER with chest pain and it was anxiety or acid reflux?i think agonists do it too.

ok vitamin D - without mentioning any names or pressuring anyone; i know it's still in discussion, is the perfect example to try in our own study. There are limitless querys we co uld check into with a database but the holidays are upon us so i'm not going to push anyone.

Several of you are talking about food as meds and that makes so much sense but one article says high fat, the other says no dairy, the other says no wheat, another says no red meat or cheese. it's time this all came together in a meaningful way. we could pioneeer this and hopefully work towards global connections. Then we can look for patterns demographically and every other way.

i'm finishing up with a comment about the episode of the Good Wife and michael's role. There was a scene in the courtroom that had it all going at once. i didn't listen to it all the first time i watched it and finally watched it today again closely. A doctor is on the stand talkiing about serotonin uptake inhibitors and 5-HTHT i think they just slightly changed it but maybe there is a double HT i have read it as 5-HT. The doctor was visibly proud of himself as he discussed neurotransmitters in language that he knew no one would understand.

The attorneys were excited to get enough money from the lawsuit against a pharma to add another floor to their law firm. The plaintiff they used as a test case for a class action lawsuit was told at the last minute and neither side had fully disclosed enough information. the girl really didn't want to be the first case.

michael chewed her up and spit her out, her mother had killed her father and then herself while taking a drug that sounded much like eldepryl. it was called ellephile or something like that. so michael destroys her case or at least heavily damages it with insinuations that her father was having an affair and it wasn't the medicine.

So the law firm pushes a reluctant docter to testify about the medicine and here's where the scene is that i'm talking about - mike interrupts with his chair moving and bumpng and squeaking, then after given a dirty look he proceeded to pour himself a glass of water from a full large pitcher..we all know how challenging that can be. Full dyskinesia going and the eyes are wide ....so familiar to us all...just trying to pour a glass of water. only in this program he was using it to his advantage.

The lawyers were feeling confident when they put the doctor on the stand. the plaintiff had her own secret tho and it was a big one. she had clearly stated she didn't want to be the test case.

so there it is all in one scene. a duped plaintiff who they
"used as a test case for the money." They didn't know enough about her and she got hurt. They didn't feel her pain or even try to see it. she was not the focus. it was all about winning the case. Meanwhile, michael has fun being the pharma creep and showing pd in wonderfuly clumsy, clutsy ways.

so the symbolism really hit today as i watched more closely. you had a plaintiff who was not paid enough attention to by greedy lawyers working for a big settlement, a doctor spitting out medical terms that no one uinderstood and kept being pressed to say it in lay terms and felt superioir and smarter than anyone else -visibly so the attitude could be delivered .

There are all the players. They didn't know their plaintiff and were looking at a law firm addition and a figure they needed. As it turned out the lawyer for the pharma [michael] had a plan and he outlawyered the law firm using deception of course.

so that's michael telling the story his way. it is brilliant, even if unintentional but i don't think so.

so everyone who has something to offer about food as med and vit D ....we are all learning that right here. when doctors talk about transmitters to us, we need to not be intimidated, because we will know not only what it means, but how it translates into lay and clinical settings.

sorry its sinemet ramble hour and i just watched it closely today.

i think if we are going to use food as meds, that it becomes pretty important to have enough people looking at it objectively and recording it.

Michael it would be nice if you respond in some way to speak to that . Who wrote the script? We aren't going to bite, but perhaps thru debi you could provide a few words of acknowledgement .

happy hanukkah season