Monday, December 21, 2009

Happy Solstice Everyone

Greetings from deepest darkest Seattle.

Here's an old song to chase the blues away.

Trade your bread and butter for a smile.

Sunday, December 20, 2009

An Offhand Hypothesis

This seems to be a source of speculation among narcolepsy researchers:

African-Americans with the DQB1*0602 gene have cataplexy at a lower rate than caucasians.
Japanese people with the DQB1*0602 gene have cataplexy at a higher rate than caucasians.

I think this is explained by the interactive nature of the pathology.
African-Americans probably have better viral immunity. Viral immunity is known to correlate with APOE subtype, and the APOE genes also correlate with skin pigmentation.
Japanese people have higher rates of alcoholism than caucasians. Impaired alcohol dehydrogenase function is especially common.

Sunday, December 13, 2009

Contact



I finally met one of you guys!

This is Anna V from the Alumni page. I was down in Arizona last week and got to meet with her for a short while. She's doing great, but did cheat on Thanksgiving...
She's so cheery, you'd never even guess she's a zombie!

She reminds me to tell you to have your thyroid function checked. Both Low and High levels are associated with gluten intolerance.

Friday, December 4, 2009

Thursday, November 26, 2009

Giving Thanks

Happy Narcolepsy Day.

Everyone else in the U.S. is going to load up on carbs and have a nice nap after dinner.
I am extremely thankful that I won't.
I'm also grateful that I am amused by the incredible irony of the situation.

I am truly blessed.

Tuesday, October 27, 2009

Way better than cooking

I wasn't kidding when I said I was going to remodel my kitchen now.

Here's some pics.

Wednesday, October 21, 2009

Stopping the Insanity

I must be doing something right.
I haven't seen a "3" after the "1" since 1993, when I started eating low-fat.












Even after gluten-free and low-carb my weight was stuck around 150. I have been losing pounds slowly since being on the acyclovir so I thought I might be able to drop some real weight if I tried. Decided to cut my carbs way back and see what happened. Since eating the new bread, it's been pretty rapid. I may even exercise now.

Being in ketosis really is worth the trouble.
I always feel my sharpest mentally when I am. It is mildly euphoric too.
Not to mention it increases the libido...

Thursday, October 8, 2009

Pancakes for Zombies

When I finished my first paper, I sent it around to all the major researchers of the associated diseases. I went to the Micheal J Fox Foundation website to get their address, and on the home page was a big promotion for their "Pancakes for Parkinson's" fundraiser. I nearly lost my mind. It still gives me anxiety. Pancakes are the most basic gluten delivery system there is.

Anyhow, Jeff and I have been doing more diabetes research lately. He got Jenny Ruhl's book "Blood Sugar 101", which has lots of information from a skeptical patient's perspective (I can relate). I am still processing that data, but she does have a pancake recipe in there that may save the world. It's gluten free and almost carb-free. Wish I would have found this years ago!

I have tweaked it a bit. They work without the guar gum too.

Protein Pancakes


1 scoop whey protein isolate, zero carb, vanilla flavored
1 tsp baking powder
1/4 tsp guar gum

1/8 cup water
1 egg
1/2 Tsp oil

Mix dry ingredients. Add wet ingredients one at a time, in that order, mix each thoroughly. Cook in a lightly greased pan. Do not overcook. Makes 2 six-inch pancakes.

These look and taste good. They have a weird property of not retaining much heat though. You have to soften up some butter to put on top of them.

We use this syrup.
It's got the best carb/taste ratio. (we bought it online but I just saw it at Fred Meyer/Kroger)


Now I might not post again for a while.
I have extensive pancake experiments to conduct.

Wednesday, September 23, 2009

How Xyrem Probably Works

Basically it’s the Coma Diet.
Seriously.

Orexin cells are glucose sensitive.
When blood sugars rise, orexin production decreases.
When blood sugars fall, orexin production increases.
Narcolepsy causes the loss of these cells, and an oversensitivity to blood glucose.
Narcoleptics are highly sensitive to small fluctuations in serum glucose levels, enough that the glycogen released by the liver can raise it enough to cause symptoms.

Xyrem is a powerful central nervous system suppressant. It shuts down your brainstem.
Your brain finds this alarming and takes over your liver to clean it out of your system.
While your liver is otherwise occupied, it cannot produce glycogen and store it.
The following day your blood sugar levels are lower, so your orexin levels are higher and your symptoms are less severe.

What you’re doing is poisoning your liver to compensate for the fact that your brain is overdosing on sugar.
In the diabetic world this is known as shocking the liver for glucose control. They use alcohol instead of GHB though- it does basically the same thing with less fatal effects. It is used sometimes in emergencies, as part of a protocol to reduce extremely high blood sugar. It is frowned on as a regular form of treatment, however.
· It’s unhealthy. Dumping poison into your system may provide some indirect symptom relief, but not surprisingly- isn’t good for your liver.
· It’s inefficient. You can accomplish the same thing by not putting all that glucose into your system in the first place.

Just about any other potent neurotoxin would do the same thing. Except most of them kill you instead of just knock you out. The narcotic effect is probably just a nice bonus. You get to sleep through your detoxification instead of suffer.

Moreover, this does nothing to alleviate the underlying neurodegeneration of your orexin cells. If the medical establishment knew this was the mechanism (they have no idea what it does, but they give you the dangerous shit anyway), it would never have been approved.

Seriously, shutting down your brainstem is not a prudent form of blood sugar control.
It’s the physiological equivalent of setting your house on fire because you’re cold.

Update:   How Xyrem Really Works    It's the coma diet.
I got it wrong though, it actually shuts down your pancreas, not your liver.

How Narcolepsy affects sugar metabolism-  my research and experience.

Wednesday, September 9, 2009

Dog Blogging


Warning- my dog Sophie is really cute and will do anything I tell her to if I have a treat in my hand.



Here she is with her new backpack on the first day of school.


I'm not a big proponent of profligate puppy pictures-
But I will use this power for my own nefarious purposes if you aren't careful...

Tuesday, September 8, 2009

Diabetes Drugs

Do any of you orexin zombies have experience with Metformin or other medications?
I had one positive report.
It would make sense... inhibiting glycogen release...

Tuesday, September 1, 2009

All I ask

If this works for you-
Test your kids. Please. It's the cycle of suffering I'm trying to break here.
Tell your doctor. After enough of us do, maybe they will get a clue.
And I'd appreciate it if you posted your story on forums or forwarded my link to interested parties. I don't do much evangelizing. And I'm really bad at it when I do.

Pay it forward.
Thanks.

Saturday, August 29, 2009

A little reflection

Lauren wrote to me and wondered how I had the energy and clarity to build the website. I really don't know. It just came out that way.
But I think when you recover you will understand.

The most common experience seems to be, "I didn't even know how bad I felt until I got better."

And after a couple wheaty misadventures, it becomes as clear as anything could possibly be:
It's NOT in your head.
It's in the damn bread.

You don't have to be a science nerd to understand that kind of cause and effect.
It's life changing. It makes you want to tell everyone. Nobody will want to listen, but you wlll tell them anyway.

You'll see.

Thursday, August 27, 2009

Correlation Games

According to the Gallup-Healthways Well-Being Index daily poll of the US population, taller people live better lives, at least on average. They evaluate their lives more favorably, and they are more likely to report a range of positive emotions such as enjoyment and happiness. They are also less likely to report a range of negative experiences, like sadness, and physical pain, though they are more likely to experience stress and anger, and if they are women, to worry. These findings cannot be attributed to different demographic or ethnic characteristics of taller people, but are almost entirely explained by the positive association between height and both income and education, both of which are positively linked to better lives.

My turn:

Short stature may indicate predisposition to neurological impairment. Short people may actually be at a physiological disadvantage and more prone to mood problems.

Saturday, August 22, 2009

Vague Nagging Feeling

Well, it was anyway- now I'm really kind of concerned.

A suspected zombie friend of mine told me last week that he is back on Atkins. We both were doing it when I was still working. Anyhow, for some reason it troubled me and I just realized why.

One of the saving graces of Narcolepsy is that the orexin cells are glucose sensitive. Some of them are highly sensitive and therefore shut down before the antibodies can infiltrate them and kill them. This leaves at least a few of them surviving. (Please see the cataplexy section of my Narcolepsy paper for a more thorough explanation.)

I suspect that if you lower your blood sugars enough, those extra-sensitive cells don't shut down as often and are then susceptible to antibody damage. In general a low-carb diet restricts gluten, but not completely. Many low carb items contain small amounts of gluten- like salad dressings or soy sauce. This is enough to trigger your immune system to produce substantial quantities of antibodies.

So, although your symptoms may improve- if you are gluten intolerant, it may be that restricting your carbs without eliminating gluten may be even more catastrophic over the long term.
Now that I think of it- this may have been a contributing factor in my dementia...

Anyhow, I can't say for sure, but it's definitely something to consider.

Tuesday, August 18, 2009

Home Improvement

I put up a page about my latest project.
You can see it here: The new Awning

Thursday, August 13, 2009

Two Years

Happy Glutenversary to Me.

Only had one incident this year- Swedish Fish candy. The manufacturer says it's gluten free, but it's not. I had TMJ and depression for two days. Looked online and found several other gluten sensitive people who had reactions too.

Other than that- It's been a very good year.
Truly Unbelievably Good.

Wednesday, July 29, 2009

Old Song of the Day

It's a million degrees in Seattle today.
Hotter than ever before.

The Road to Hell- Chris Rea

Thursday, June 18, 2009

Finally

I have posted the Multiple Sclerosis paper. You can access it here.

Wednesday, June 10, 2009

Cerebral Pile Management

Interesting articles:

Can Light Therapy Improve Your Sexual Functioning? New Promising Data

Light on the retinas increases orexin production...

Fatal Brain Disease At Work Well Before Symptoms Appear

This description of ALS sounds very familiar...


Apparently there was a huge sleep conference in Seattle last week. I'm glad I missed it.

These are some of the studies that were presented:

Adolescent Obesity Linked To Reduced Sleep Caused By Technology Use And Caffeine

Relationship Found Between Napping, Hyperactivity, Depression And Anxiety

Nightmares Predict Elevated Suicidal Symptoms

Sleep Apnea Linked To Sleepwalking, Hallucinations And Other 'Parasomnias'

Oh yeah, I would have lost my mind.
The only one who even attempts a causal explanation gets it wrong.
And you can be sure there was pasta and cookies all around.

Tuesday, May 26, 2009

Gotta Love This

I am trying to work on the MS paper. But it's been sunny and warm here and somehow I keep ending up out in the yard. Anyhow, EW sent me a link to this article:

Dr. Mignot proclaims Narcolepsy is an Autoimmune disorder

During this study, the researchers ran whole-genome scans—which allow for the analysis of hundreds of thousands of genetic variations—of 1,800 people carrying the same HLA gene variant. Of the group, 800 had narcolepsy, and the goal was to find what differentiated these people from control subjects. The team found that a specific variation of a gene belonging to T cells—specialized immune cells that play a role in all immune responses—was present in narcolepsy.

Because T cells are involved, Mignot believes the mechanism behind narcolepsy stems from the immune system. “Our discovery clearly shows narcolepsy is an autoimmune disease,” he said.


I cannot express how much I appreciate this study. It fills in an empty section in the Narcolepsy portion of my hypothesis. Aberrant T-cell activity is known to be associated with Parkinson's disease and Multiple Sclerosis. It is also associated with impaired latency of herpes viruses.

Thanks Dr. Mignot!

Tuesday, May 12, 2009

Open Thread

Greetings Zombie Hordes.

I don't have a real game plan yet, so please introduce yourselves and feel free to ask any questions.

I've sort of lost my urge to write, so some comments on what needs clarifying would be appreciated. I could use some motivation and direction. Thanks.

Surfacing

My narcoleptic sleep attacks often ended with a harsh awakening. It was like being underwater and then suddenly breaking the plane of the surface. The light, the external pressure, the sounds changed. Everything was instantly different.

It was kind of like time travel. All of a sudden you're thrust into this unexpected and unknown environment. From a sound sleep. Having an anxiety attack.

I would wake up with my ears ringing, my heart pounding, and have to figure out what was going on around me.

Kind of like I feel right now.