[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

[bluedahlia]

Laura, Now that's interesting. I happened to stop taking Paxil a few months before I was diagnosed with PD. Any info on this link?

[Conductor71]

Originally Posted by bluedahlia

Laura, Now that's interesting. I happened to stop taking Paxil a few months before I was diagnosed with PD. Any info on this link?

Blue,

I have wondered if it wasn't a trigger for me as well. My tremor emerged around the same time I was put on Paxil for anxiety. At that time, the tremor was not at all Parkinsonian although it was only in one hand. I wasn't on Paxil long at all as it made the tremor worse.

I recall seeing legal cases, I thought, like three-four years ago, linking Paxil with. I should have printed them out because it is like they have all but disappeared.

However, this is damning enough in my book. It's a book written by a psychiatrist who watched SSRIs ruin lives in the 90's as patients were left with all sorts of neurological problems ranging from tics to full blow Tardive Dyskinesia with Parkinsonism in the spectrum of movement disorders. The book is Prozac Backlash The link is to Amazon where you can read the first chapter of the book where he describes a number of patients who began exhibiting weird tics, myoclonic jerks, dystonia, etc. after being on SSRIs for a short time. In most cases, the problems go away after the drug is stopped, but not in all cases....

I think the standard response you will see in research case studies of people who took SSRIs and showed Parkinsonian symptoms was that the person had the disease all along and that the drug just moved it to the front burner. The medico-pharma spin on it is that it was simply a matter of time that PD reared its ugly head in these patients, not that the drug is even remotely responsible or a main trigger. It is amazing that they can tell our futures.

Further, do a search on Pubmed. The link between PD and SSRIs has been documented since the mid 90's. Yet, go to your neurologist or psychiatrist for an anti-depressant, and the first thing they'll likely suggest is....an SSRI!!

J Clin Psychiatry. 1996 Oct;57(10):449-54.
Movement disorders associated with the serotonin selective reuptake inhibitors.

Leo RJ.

Department of Psychiatry, School of Medicine, State University of New York at Buffalo 14215, USA.

Comment in:

* J Clin Psychiatry. 1998 Mar;59(3):133.
* J Clin Psychiatry. 1997 Sep;58(9):403-4.

Abstract

BACKGROUND: To review the case reports and case series of movement disorders ascribed to the use of serotonin selective reuptake inhibitors (SSRIs).

METHOD: Reports of SSRI-induced extrapyramidal symptoms (EPS) in the literature were located using a MEDLINE search and review of bibliographies.

RESULTS: Among the 71 cases of SSRI-induced EPS reported in the literature, the most common side effect was akathisia (45.1%), followed by dystonia (28.2%), parkinsonism (14.1%), and tardive dyskinesia-like states (11.3%). Among patients with Parkinson's disease treated with SSRIs, there were 16 cases of worsening parkinsonism. Patients who developed dystonia, parkinsonism, or tardive dyskinesia were older on average than patients with akathisia; 67.6% of affected patients were females. Fluoxetine, the most commonly prescribed SSRI to date, was implicated in 53 (74.6%) of cases of SSRI-induced EPS. Several reports (57.7%) were confounded by the concomitant use of other medications that can contribute to the development of EPS.

CONCLUSION: SSRI-induced EPS are probably related to agonism of serotonergic input to dopaminergic pathways within the CNS. Several patient-dependent and pharmacokinetic variables may determine the likelihood that EPS will emerge. Although these side effects are infrequent, clinicians should be alert to the possibility of their occurrence.

[imark3000]

Originally Posted by 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

Dear Peg,
I am honestly concerned when my or other's postings would influence readers in a particular course of action because we are all different as so often stated.
The details regarding my claim to increased energy are simple enough. For a long time I have been working out every morning on a typical stationary bike which indicates the speed, time, calories burnt and pulse rate.
So, every morning, the first thing I do is take my supplements (but not PD medication), do taichi or yoga exercize for 30 mins and followed by bike exercise for 15 mins.
I try my limit on the bike aiming at speed of 80 to 100 round per min. What I mean is that I put absolutely maximum effort. Then I make a note of the date and achieved calories as an indicator of my PD state.
Prior to the date when I started taking coconut oil on 14 Oct, the max achieved calories was between 150 to 180 calories with speed between 80 to 90 rpm.
Two days after taking coconut oil I discovered with great surprise that I could achieve more which was 240 calories with speed 80-100 rpm for 20 mins and I was able to increase that gradually up to an average of 450 calories, cycling between 70 to 100 rpm for 40 mins.
My general mood has also improved but the tremor (my main PD symptom) did not improve.
I wish you best luck and am waiting to hear feed back

Imad

[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