Thursday, October 31, 2013

Dia de los Muertos

My housewarming gift to myself.   Zombie Ranching.

And my "costume".

Wednesday, October 30, 2013

For some reason, that reminds me

Back in the day- back when it was really bad-
I used to lie on the floor crying and think-  "I'm not feeling sorry for myself, I'm doing field research..."

My apologies

For neglecting this blog.   I know it seems like I don't do anything, but really, I'm thinking super hard right now.   All this cleaning must have kick-started my brain.    Really Good Things coming.  

Sunday, October 27, 2013

Thursday, October 24, 2013

As I was Saying

The first basic principle: Each person has their own combination of immune genes.
Some people are more susceptible to infections in general.
Others are susceptible to specific pathogens.

Scientists Discover Genetic Disease That Causes Recurrent Respiratory Infections

Sunday, October 20, 2013

Know Hope

These are Days.

Just a Reminder

A sociopath chooses the path of plausible deniability.

Dear Dr. Dreamy

Thanks for contacting me.
One of the reasons I moved to Arizona is because it is sunny, warm and dry and a good climate for a person with darkness sensitivity, no brown fat and recurring respiratory infections.  The other reason is because it swarming with "medical professionals" making lots of money off the people like me who end up here when they're sick and tired.

I didn't realize that was your crazy clinic up there in the hills, but yeah- I have every intention of putting you out of business. 
You still want to hear my thoughts on Narcolepsy?

Friday, October 18, 2013

Old Song of the Day

I had to.

Cerebral Pile Management

Busy Brain Cleans House While You Sleep

If only it would clean this kitchen... I'm using a scraper and acetone here...

Monday, October 14, 2013

State of the New Kitchen

There is much pile management in my future.

Sunday, October 13, 2013

Brain Eating Zombie of the Day

Edward Archer, who also gets to be Maniac of the Day.   Our first double winner.  Congratulations.

40 Years of Federal Nutrition Research Fatally Flawed, Study Finds 
The study examined data from 28,993 men and 34,369 women, 20 to 74 years old, from NHANES I (1971 -- 1974) through NHANES (2009 -- 2010), and looked at the caloric intake of the participants and their energy expenditure, predicted by height, weight, age and sex. The results show that -- based on the self-reported recall of food and beverages -- the vast majority of the NHANES data "are physiologically implausible, and therefore invalid," Archer said.
In other words, the "calories in" reported by participants and the "calories out," don't add up and it would be impossible to survive on most of the reported energy intakes. This misreporting of energy intake varied among participants, and was greatest in obese men and women who underreported their intake by an average 25 percent and 41 percent (i.e., 716 and 856 Calories per-day respectively).
"Throughout its history, the NHANES survey has failed to provide accurate estimates of the habitual caloric consumption of the U.S. population," Archer said. "Although improvements were made to the NHANES measurement protocol after 1980, there was little improvement to the validity of U.S. nutritional surveillance."
The data does not conform to the model so throw out the data.
It didn't occur to you that might be a hasty assumption?

No, because fat people are clearly unreliable.   Your bias is showing, smarty pants.

Friday, October 11, 2013

By Request

Lori asked me to look into this right before I moved.

The Wakeup Diet for narcolepsy.

As far as I can tell it's a manic collection of correlations and assumptions.
No physiological explanations.  No mention of orexin.  No scientific citations.
And the author does not identify him/herself, either.

That's enough reason to ignore it.
But the suggestion that we should avoid coffee only proves this person has no idea what the hell they are talking about.

Hope that helps... sorry it took so long.

Brain Eating Zombie of the Day

Rebecca M. Pearson

Depression During Pregnancy Increases a Child’s Risk of Mood Disorders
While shared genetic risk is one potential explanation, Pearson said the physiological consequences of depression experienced by the mother can pass through the placenta and may influence the fetus' brain development. 
Ummm, there is nothing in your data that supports that conclusion.   A shared risk of hyperinsulinemia explains all of that.   Pregnancy amplifies insulin production even more.
Not to mention susceptibility to Strep infection is also heritable and pregnancy increases those too.
“We really don't want to scare pregnant women or make them feel guilty," Pearson said. "Nonetheless, the message is to prioritize your own mental state and seek help early in pregnancy if you are feeling low, both for your own sake and for your baby.”
Clever.   Deny your agenda while promoting it.   Downright Rovian.
Treatments like cognitive behavioral therapy—a kind of talk therapy—have been shown to help women with depression without the risk of side effects that comes with some psychoactive medications.
It's completely ineffective in altering insulin levels.  Or infection levels  Or any other physiological mechanism.   STFU.

Correlation vs. Causation

Brain Mechanisms Behind a Debilitating Sleep Disorder
We have shown that the neuro-degeneration of the brain cells that synthesize the chemical hypocretin causes the noradrenaline system to malfunction. When the norandrenaline system stops working properly, it fails to keep the motor and cognitive systems coupled. This results in cataplexy -- the muscles fall asleep but the brain stays awake.

Methinks they may have missed a step...
Insulin induced hypoglycemia drastically reduces noradenaline levels.
(Hypotonia is a common and well documented symptom of hypoglycemia.)

And since their goal is another drug to sell you-
Caffeine counteracts reductions in the turnover of central noradrenaline.

Wednesday, October 9, 2013

See the Pathology

Explains a lot.

Maniacs Running the Asylum

Researchers find tests meant to predict future violence by psychopaths is less accurate than chance

Psychs can't predict violence, can't predict suicide, can't alleviate depression or anxiety or neurosis...
And yet people take them seriously.

Expected Behavior

World-class triathletes can shrug off pain better than non-athletes
They are maniacs.  They have a psychoactive immune response to injury.

Behold the power of dopamine.
More motivation, less pain.  

Money for Nothin

Fake Cancer Study Spotlights Bogus Science Journals 
A cancer drug discovered in a humble lichen, and ready for testing in patients, might sound too good to be true. That's because it is. But more than a hundred lower-tier scientific journals accepted a fake, error-ridden cancer study for publication in a spoof organized by Science magazine. The fake study points to a "Wild West" of pay-to-publish outlets feeding off lower tiers of the scientific enterprise by publishing studies without any appreciable scrutiny, say research ethics experts.

Tuesday, October 8, 2013

FDA Meeting Debrief

By Nikki Blocker 
September 29, 2013

Notes on FDA Public Meeting on Patient-Focused Drug Development
September 24, 2013

I would like to familiarize anyone reading this with a little background before writing about the actual meeting. My fiancĂ© and I had driven about fifteen hours and only had about four hours of sleep when we attended the meeting. The meeting room was almost full; therefore we were forced to sit in the back and I’m a bit hard of hearing. A transcript of the meeting will supposedly be available on the FDA website. Not only were there two panels of people chosen to speak, there were results included from those watching the webcast, and people were able to phone in.

We parked in the designated area and immediately met three other people attending the meeting. One was an immaculately dressed lady named Nancy. She and I immediately discussed our symptoms and our medications. We are both on Xyrem, and we began having bizarre symptoms while in college. She had typed a report using her receipts to show how the cost of Xyrem had increased over time, and had also included how Jazz Pharmaceuticals is listed as number one on the list of Fortune 500 companies. Based in Dublin, Ireland, a three year average ranks Jazz number one with revenue growth of 68%, profit growth of 279%, and a total return of 106%. Jazz reported revenues ($ millions): 680, and net income ($ millions): 304.3.i During the meeting Nancy raised her hand several times but was never handed the microphone.
Seating was scarce because so many people had attended. As we were seated near the back of the room, a lady with the FDA was speaking about the public meetings they had decided to hold and how there had been such a massive response from the narcolepsy community. Patients were given a clicker to answer questions. 58% of those attending were from out of town, 37% were age 41 to 50, and 37% were recently diagnosed. She explained to us narcolepsy is considered a rare disease because fewer than 200,000 people have it and fewer than 50,000 have been diagnosed. Some facts from the FDA:
  • Symptoms can begin as young as age 7.
  • Cataplexy causes slurred speech.
  • Restless Leg Syndrome is a symptom of narcolepsy.
  • Auto Behavior includes sleep walking.
  • Symptoms can improve with lifestyle and diet changes.

A few minutes later the first set of panelists took their seats at the front of the room. Names of the panelists will probably be available on the official transcript. Notes are limited to important details.

First Panel

Panelist I
  • Severe symptom onset began in college.
  • Was on the Dean’s list but is now unable to maintain good grades.
  • Ran 5k everyday. No longer exercises because exercise makes symptoms worse.
  • Said diet improved symptoms but didn’t elaborate
Panelist II
  • 15 yrs old
  • Ran and exercised daily. No longer exercises because exercise makes symptoms worse.
  • Was an honor’s student but is now unable to maintain good grades.
  • Hallucinations include the inability to tell whether or not something was a dream, or if it really happened.
  • Auto behavior occurs while mowing the lawn.
  • Is now on gluten free diet and symptoms are improving.
Panelist III
  • Sleep paralysis began at age 29
  • Hallucinations included speaking to the spirit of her dead father. She believed this until she began seeing the spirit of her sister who is still alive.
  • Developed cataplexy at age 30.
  • Perimenopause made symptoms worse.
  • Was diagnosed while working as a pharmaceutical representative. She visited a neurologist and happened to read a pamphlet about narcolepsy. She asked to be tested and was positive.
  • Has fallen asleep while driving.
Panelist IV
  • Symptom onset began while in college.
  • Always late for class and noticed she was “losing time”. Would arrive at a location with no recollection of how she got there.
  • Hallucinations include dark shadowy figures.
  • Carbohydrates and sugar make symptoms worse.
  • Cataplexy is caused by anger.
  • Diagnosed at age 39.
Panelist V
  • Sleeps 12 to 18 hours per day.
  • Has sleep attacks while out in public.
  • Has “Brain Fog”. (At the mention of this term there was a collective epiphany throughout the room because so many people had brain fog but did not know there was an actual term for it.)
  • Exercised daily but is no longer able to.
  • Has lost most of his teeth.
After the first panel finished comments were taken from the audience. One woman has a ten year old son with narcolepsy who passed every neurological exam. Physicians did not believe the child had narcolepsy until his parents filmed him having an attack of cataplexy. The audience was asked if there was anything unusual to alert them to an on coming attack of cataplexy. Many people with cataplexy have a “popping feeling” when it is about to happen. Someone with the FDA stated children have been known to mask their emotions to avoid a cataplexy attack. For example, a child may keep a straight face instead of laughing.

Another audience member stood and was handed the microphone. She told of how she allocates a certain amount of time for each task throughout the day. Using some kind of timer with an alarm, she will allow ten minutes for showering, breakfast, getting dressed, etc. She began using the timer and alarm system to avoid spending an hour on her hair or makeup thus making her late for work. She also uses a GPS everywhere she goes to help her track where she is and how to get home.
One of the FDA physicians brought up the subject of auto-behavior. He asked if anything unusual alerted anyone to impending auto behavior. It took a while, and a few attempts at clarification, for anyone to understand his question. Finally a woman spoke up and told him it only occurred when she was extremely tired. Another woman described it as a “conscious sedation” and said it occurs when she cooks. 

Another FDA physician asked if anyone had symptoms that improved at certain times and then became worse. Several people volunteered information. Many women find symptoms worsen during menstruation. Summertime makes symptoms worse for some patients; however a larger number of people said symptoms became severe with the lack of sunlight that accompanies autumn and winter. Some patients use a Phillips GoLite BLU Energy Light as therapy. It produces a 470nm blue light that is not supposed to be looked at directly. Phillips states that by shining the light on the side of your face for 15 to 30 minutes per day it will activate hormones to naturally boost your mood. It is endorsed by the Mayo Clinic.ii

At this time a call was taken from someone watching the webcast. The called stated she was perfectly normal until she contracted a virus and had a high fever. She has had narcolepsy ever since.
The meeting stopped for a brief break during which we could pay for coffee along with a carbohydrate and sugar loaded snack. A woman struck up a conversation with me about how the emotions had exhausted her. I started to ask about diet, however she began telling me about her organization and handed me her business card. She was with Narcolepsy Network. Narcolepsy Network had several members attending the meeting and they seemed dissatisfied with the FDA.
After the break the second set of panelists took their seats at the front of the room. It should be noted that many of the people in each panel were reading word for word scripts of what they had turned in. Panelist V did not stick to his script.

Second Panel

Panelist I
  • Had to have four sleep tests.
  • Used to be a runner, no longer can exercise.
  • Gluten sensitive and is now on gluten free diet showing improvement.
Panelist II
  • Her 9 year old daughter is on Xyrem and two other drugs.
  • She is worried about her daughter’s liver.
Panelist III
  • EDS began in high school.
  • Developed a tremor at age 21.
  • Has major depression and is unable to lose weight.
  • Says Xyrem is a miracle drug and her cataplexy is almost completely gone.
  • To manage side effects of Xyrem she takes magnesium and potassium supplements.
  • Symptoms become worse in fall and winter.
Panelist IV
  • Diagnosed at age 42
  • Also has asthma, allergies, and fibromyalgia
  • Had seizures in her sleep when she took Xyrem. No longer takes it.
  • Never eats processed food but still eats whole grains.
  • Takes magnesium, B vitamin complex, DHA, & probiotics.
  • Has auditory hallucinations.
Panelist V
  • Symptoms vary with seasons.
  • Has a problem with tolerance.
  • Believes results would be greater with a holistic approach.
  • Wants screening for early detection.
  • Said patients should be divided into three groups: Narcolepsy, Narcolepsy with Cataplexy, Narcolepsy with Cataplexy and multiple problems
  • At age 9 he had an IQ of 153.
  • Night terrors and onset of narcolepsy began at age 11. Grades fell as a result.
  • Diagnosed at age 22
  • Said the FDA and physicians need to stop treating us with a “blanket approach”.
At the conclusion of the second panel mumbling from the audience could be heard. Several members seemed to become a bit angry. People began to wonder why the FDA had never thought of these things.

Another set of questions were posed to the audience and answered with our clickers. One question involved dental problems. Many members of the audience had lost teeth. Biotene, a line of products to prevent a condition known as “dry mouth”, was mentioned by an audience member. The FDA changed the subject.

The results of the next question angered most members of the audience. Those with clickers were asked what therapies were used to improve our symptoms. Several therapies were listed on the giant screen visible at the front of the room, and more than one could be chosen. Those listed were naps, diet, exercise, and a few other things. 91% said naps helped, 66% picked diet, 66% picked exercise, and percentages were negligible for the other choices. The subject of diet was never covered. Everyone seemed to want to tell their sad story or talk about how Jazz Pharmaceuticals was a monopoly. People began swerving away from the topic with long stories, often losing their train of thought. The audience began getting aggravated and stopped paying attention to the people talking until a lady stood up and began telling the story of her son. She started the organization Wake Up Narcolepsy and told the people with the FDA she didn’t care if she went over two minutes. She began reading her own list of statistics she had compiled and basically told the FDA they weren’t doing anything to help us.

The next speaker is only known to me as The Man in the Hat. He said it was all about Orexin and stated he wanted a drug to replace Orexin. Nobody knew what Orexin was and a lot of mumbling was heard. He said without it homeostasis was flawed and became harder as people become older. He angrily stated napping is not a therapy and how dare the FDA list it as one. He told the FDA all they provided for us were expensive band aids. The audience had another epiphany as everyone realized the idea of napping as a therapy was ignorant.
By the time the man in the hat was done everyone was angry about something and nobody wanted to listen to a long drawn out dialogue. That is when I was picked to speak and handed the microphone. I looked straight at the man in the hat and said, “The man in the hat is correct. It is all about Orexin.” I turned to face the FDA physicians head on and stated, “I am on a gluten free and sugar free diet, and it has dramatically improved my symptoms.”

A few parting comments ended the meeting and we were instructed to turn in our comment cards. I’ll spare the reader most of what was written on mine. I will state that I complained about being charged for horrible tasting coffee.

In conclusion, the Public Meeting on Narcolepsy ended on a negative note. People who began the meeting with smiles left the meeting in tears. If the other public meetings went as poorly for the FDA as this meeting, surely they will do something in the future to steer the meetings toward more positive topics.

i Green, Shannon. Jazz Pharmaceuticals – Fastest-Growing Companies 2013- Fortune Magazine
ii Carnoy, David. Phillips GoLite: Cure for the Winter Blues? - CNET

Update:   videos of the sessions are here.

Sunday, October 6, 2013

Brain Eating Zombies of Every Day

 Your Food and Drug Administration

Pharmaceutical firms paid to attend meetings of panel that advises FDA
A scientific panel that shaped the federal government’s policy for testing the safety and effectiveness of painkillers was funded by major pharmaceutical companies that paid hundreds of thousands of dollars for the chance to affect the thinking of the Food and Drug Administration, according to hundreds of e-mails obtained by a public records request.
So, until proven otherwise let's assume those crooks at Jazz and Cephalon paid for their approvals too.  The safety(not) and efficacy(poor) and addictive qualities(high) of their drugs certainly rival Oxycontin.  Not to mention the gluten in Provigil actually made my symptoms worse...

It would be funny if it wasn't so effing tragic

Miley Cyrus mocks "motherly" advice from Sinead O'Connor

Joseph Lister is Weeping

Widespread Glove, Gown Use In ICUs Could Reduce Spread Of MRSA


Saturday, October 5, 2013

About Time

Don't know how I missed this.

Expectant Mothers' Periodontal Health Vital to Health of Her Baby
When a woman becomes pregnant, she knows it is important to maintain a healthy lifestyle to ensure both the health of herself and the health of her baby. New clinical recommendations from the American Academy of Periodontology (AAP) and the European Federation of Periodontology (EFP) urge pregnant women to maintain periodontal health as well. Research has indicated that women with periodontal disease may be at risk of adverse pregnancy outcomes, such giving birth to a pre-term or low-birth weight baby, reports the AAP and EFP.
Pregnancy actually accelerates periodontal disease.  Documented in 1962.   One month after I was born.

(And I really wish people would stop using the terms "Healthy Lifestyle" and "Healthy Diet". Those words are meaningless without more specific modifiers.)

Now it's Personal

PubMed is open, however it is being maintained with minimal staffing due to the lapse in government funding.

My Two Cents on the Shutdown

An inability to accept the reality of failure, loss, or being wrong is a symptom of acute obsessive compulsive disorder and a warped amygdala.
Those people are clinically insane.

Their vision of your future

Fighting Fat With Botox
Tests on rats have shown that treatments with Botox injected into the vagus nerve in the stomach can lead to weight loss. When Johannessen injected rats with Botox, the animals ate less and lost 20-30 per cent of their body weight over five weeks. The treatment effectively paralyzes the vagus nerve, which triggers the sense of hunger and controls the passing of food through the intestines. 
Or- instead of injecting one of the worlds deadliest toxins into the nerve that also controls your heart-  you could lower your vagus response by  not eating things which lower orexin levels...

Zombie Institute Relocation

Pardon Our Dust.
This is the big project I have been working on-   moving out of rainy, dark Seattle!!

The kitchen is now located in Tucson, Arizona.   And there is no table.   There is no furniture at all, it's still on the road, as is my husband.   There is also no hot water until after monday, and it took me hours to get the internet working.
But I have a puppy...  and sunshine.

Friday, October 4, 2013


Tuscon, Tucumcari, Tehachapi and Tonapah.   Been there done that.
Tacoma too.
Will be there soon.

Tuesday, October 1, 2013

As I was Saying

Vladimir Putin, zombie hunter 
A new video game for iOS and Android will see the Russian leader battle the undead led by Rasputin.
Ummm, Putin shows all the symptoms of infection.   Behold the power of dopamine.

Quote of the Day

“One of the saddest lessons of history is this: If we’ve been bamboozled long enough, we tend to reject any evidence of the bamboozle. We’re no longer interested in finding out the truth. The bamboozle has captured us. It’s simply too painful to acknowledge, even to ourselves, that we’ve been taken. Once you give a charlatan power over you, you almost never get it back.” ― Carl Sagan