Narcolepsy and History...Doctors Are Not Always the Smartest People...

I have recently had the opportunity to read some medical journals and reviews about Narcolepsy dating back to the late 1800's.  I realize that we know so much more in today's world, but damn!
There is absolutely no doubt that medicine in the 1800's and early 1900's was frequently scary as hell, just take a look here and the so scary, I could pee my pants selections here, at the "Dr. Bonkers Institute", to get the picture.But back to Narcolepsy...

I was perusing the 1897 book entitled, "Sleep: its physiology, pathology, hygiene, and psychology." by Maria Mikhailovna Manaseina and not only did I vomit a little while reading, but It so sadly reminded me of the attitudes of so many people during those times, and how scary it is to think that there are probably some people that actually have similar attitudes and beliefs today.  Below is a selection from this old piece of doo doo, "medical" book...

Oh no she didn't!  Ok... it's 1897...we didn't know much then...blah blah blah...HELL NO!  I don't care what year it was, she actually used the word "always".  Read it again please...She says people with Narcolepsy always come from lower and least developed classes or from families with "nervous or mental disease".  That is not a medical statement, that is a stereotypical, stupid statement of idiocy.  Man, all I can say is that I am so very thankful that she was not my doctor!  Thank you Jesus!  

You too, can also read this mind numbing "medical" book online for free by clicking here. There are so many statements in this book that are grossly racist and just plain nuts. But sadly, it is history.

I am a believer in knowing the truth about history and learning from it as well, but sometimes, well, actually, a lot of the time, it really is a hard pill to swallow.  So many throughout history suffered and fought for freedom, and were treated in ways that we could never imagine.  We've got to honor those who suffered and paid the price for our freedom today, and pray for those that still suffer unimaginable circumstances even today. 

Medical issues are just one piece of the pie.  All I can say is that I feel like one of the most blessed people in the world. 

From all I can find, Maria Mikhailovna Manaseina was a noted Russian physician and scientist that studied sleep.  If she were here today, I would have to tell her to kiss my Narcoleptic ass!!!  

History lesson concluded.

 

Narcolepsy as an Autoimmune Disease

Since the discovery that Narcolepsy is most likely an Autoimmune Disease, I know I have been combing the web for information on new developments and articles discussing this topic.

I found a link provided by Medical Planet, that offers a free download book (pdf) called "Narcolepsy and Hypersomnia (Lung Biology in Health and Disease)". One of the editors is Emmanuel Mignot, so I am thinking that it might be a good read. Here is the description of the book from the blog page at Medical Planet,

"This is the first and only guide to discuss narcolepsy as an autoimmune disease. Compiled by an international group of more than 40 authors, this reference book supplies an engaging and comprehensive review of the major topics and key issues associated with narcolepsy and hypersomnia. Spanning the latest advances in the field, this source covers current diagnostic procedures, genetic developments, explorations of animal models, new definitions and criteria, and improved epidemiological surveys to reflect the explosion of research in this evolving science."

The book appears to be published in December of 2006. I have downloaded the book but I have not yet had a chance to read it yet. It has 736 pages!! You can download it HERE.

With the download, there are some other files that come with it that appear to be links to other services and possibly material that the website might be trying to sell, but you don't have to open them unless you want to. My computer did not detect any virus or malware with this file download, but of course, make sure you check it on your computer, just to be safe!

I hope that this will be useful to some of you, and the website the book came from looks pretty interesting too, although this was my first visit.

If you get a chance to check it out, please leave a comment!

Go Easy!
Ja

This Sleepy Woman Hasn't Had Too Many Adventures Lately!

Hola everyone reading!

I haven't written in awhile, and I am sorry for that, if anyone was wanting to read here. My dog died Aug 10th, and it has been a little harder than I thought it would be. He was 14 years old, but very young acting! In the last year he got Diabetes and it was really hard on him. He also went blind (overnight) this year, but adapted so well, and did a great job finding his own way anywhere.

I loved him like family, and after having him for 14yrs, he was my little brother. He died in his sleep at the vet. They initially had to give him lots of phenobarbatal because he was having seisures that wouldn't stop. By the next day, he still was having them in his sleep and died.

I want to write here again, I have been reading a lot, but it was just hard to write anything without losing it. As many of you already know, stress really messes with your Narcolepsy too! I am hanging in there, and I hope that all of you are too. For any of you that pray, please pray for my family and the grief process. We are doing ok, but without God, I dont even want to think about where I would be!

Thanks Mucho!!

This is my dog Leo. :)

Alternative Treatments for Narcolepsy? Be Careful! Part B

Hola all.

My last post was about these websites that seem to be popping up all over the place and tout alternative therapies for treating, healing and yes even "eradicating" Narcolepsy altogether.

I started talking about one of these treatments called "Corsatax". Their website claims,

"Unlike other Narcolepsy products which are slow or ineffective, Corsatax has the unique ability to provide long term support in a relatively short time through an easy one-a-day pill regimen. In recent years there has been an increasing interest by medical researchers, practitioners and also the general public in natural plants and herbs as sources of medicine. All pharmaceutical companies are now finally admitting the fact that plants and herbs are by nature endowed with substances that have incredibly powerful healing powers."

I found their statement very general and not really informative about this one-a-day pill regimen. They list absolutely no links to studies performed on their product. In the ingredients section, they do list the "properties" of each herb used, but site no authority or mention where the heck they got the info.

As mentioned i my last post, I wrote them via web form at their site to request more info on and studies that may have been perform, and expressed my interest in trying the product. I have not at this point received any reply to my request. Surprise!

And here is where it becomes a real hot mess;

By doing a simple (ok, a little more than simple) search on some phrases they use on their website, this "company" seems to have more than 100 other websites almost completely identical to the "Corsatax" site. yep, there's:

Ongrotax: A unique Gonorrhea product
Sintatex: A unique Tinnitus product.
Lipratax: A unique Oral Leukoplakia product.
Meslarax: A unique Inclusion BodyMyositis product.
Glocatax: A unique Glaucoma product.
Dermatax: A unique Dermatomyositis product.
Gemlarax: A unique Polymyalgia Rheumatica product.
Nebralex: A unique Boils product.
Vomorax: A unique Cyclic Vomiting Syndrome product.
Kidnatrex: A unique Renal Failure product.
Myorex: A unique Cluster Headache product.
Cervorax: A unique Cervical Spine product.
Gravitax: A unique Myasthenia Gravis product.
Vegarax: A unique Graves' Disease product.

And about a kagillion more...(do these people have any conscience?) Do they just sit around making up names....?!?!?

Each website is almost complete identical other than the name of the product, and some of the ingredients. It's is a damn shame.

The "company", Botanical Sources, is supposedly in Italy, and I imagine it has a front yard full of unicorns, and rainbows with pots of gold at the ends. It may as well, because that address is nonexistent, or perhaps and PO box of some sort.

I am sorry to make this post so long, but there is more...Here is the HOT HOT mess section.

At the website "Rip-off Report", a site where consumers can publish complaints about purchases or fraudulent activity, There are a few interesting complaints about the lovely "Botanical Sources" co. Click here to read from the website, or here is a snippet of the complaints below;

From the site, a customer writes:
"I ordered an herbal product called Voltarax from this company not knowing they were located in Italy.My order took almost a month to reach me. When it did arrive I noticed it was mailed from Pakistan. The packaging does indicate that it was made in Pakistan. Had I known upfront that I was ordering a supplement that was made in and mailed from Pakistan I would not have ordred.
Botanical Sources is using a company CCnow as a 'retailer' in the US to process payment information. Buyer beware."

And...
"This web site preys on people looking for natural cataract relieve. It almost seems like a legitimate site until you look for a telephone number to ask questions and there is none. Their address in Italy does not exist. The web page does have a false area to submit your name, e-mail address and phone number stating that they will get back to you immediately. Of course they never will. It claims of natural herbs from India known to heal cataracts. The frauds call their product Secarx."

Well, I guess I am the bearer of bad news. I wish that they were legit. I knew they weren't, as most of you did too. We have to be careful! Always check with other before wasting your hard earned bucks on crap like this. I just wish I could figure out how to take them down!!!!!

What do you all think about this crappalicious crap!!!????? Let me know, maybe we can get the word out, or form a coalition to get these meanies together and .....and pinch them really hard ...or something....maybe make them take one of our natural remedies...called Crappheadtax. Kinda catchy, huh...

:)

Alternative Treatments for Narcolepsy? Be Careful! Part Uno

(This is kind of a long post, but I hope it may be of great use to some of you out there! I certainly am interested in knowing all I can:)

I don't know anyone that wouldn't be ecstatic to find a natural way to make Narcolepsy go away or even something that would help reduce Narcolepsy's symptoms. I know I am one of those willing to try any safe natural treatment. Hey, If it doesn't work for me, no real loss, right? At least it would be a learning experience. And, as the saying goes, what works for some, may not work for others. (I think that is a saying...but oops, if it is not)

Those who know me know I am a researcher. I look for news everyday, regarding new information about Narcolepsy, and read way to much, most of which is written in a language that I understand, at best, only a bit, due to the medical terminology. (Why didn't I become a doctor or geneticist...:)

So with that being, I have always noticed some "natural cures" that pop up on the web from time to time claiming that Narcolepsy is over, done been cured, that is, with the help of their well studied, miraculous mixture of herbs, that completely kick Narcolepsy in the butt! Yeah, right...

I have tried to find information about the companies that have these websites that are strangely similar in many ways. I have tried to find out if anyone has tried any of them....can't find a soul, except for the testimonials of those on the products website. So, as much as I had ever wanted to just try them, my conscience just cannot allow me to. Below I gathered some info from each of these sites for your viewing. I also have written to two of them, which I have below as well.
My personal comments are in RED so it doesn't get confusing. Here it tis...oh ps. I didn't list the website addresses. A quick Google, and you'll find them fast if needed.

Treatment name: Corsatax

Claim from their website: "Unlike other Narcolepsy products which are slow or ineffective, Corsatax has the unique ability to provide long term support in a relatively short time through an easy one-a-day pill regimen. In recent years there has been an increasing interest by medical researchers, practitioners and also the general public in natural plants and herbs as sources of medicine. All pharmaceutical companies are now finally admitting the fact that plants and herbs are by nature endowed with substances that have incredibly powerful healing powers."...uh....this statement actually has nothing to do with their unique product! duh.

Cost: 60 tabs=65.00 90 tabs=95.00

Guarantee: "After placing your order, if you believe for any reason that Corsatax is not suitable for you or you do not find it meeting your health expectations, you have nothing to worry about. All you have to do is to send us back the unused portion (or the empty bottles if you have used the whole product) and all amount that you have paid us would be refunded immediately without any delay. It is completely up to you if you want to give a reason as you will not be asked for any. This guarantee is valid for 60 days from the date of purchase, thus allowing enough time for delivery to your door and to experience results."

Company: Botanical Sources Via Canova 24, Suite # NR 320 Roma 00186 Italy Ok, they have a guarantee, sound to good to be true? Me thinks so... They provide NO studies done on the product, but they do provide links to studies about natural plants being useful in medicine, as if they think the average person doesn't know that that has already been known since the beginning of time. errrrr... Since they provide no evidence or real info about their product, I used their contact form to write them this letter:

I wrote:

"Hello, I am interested in learning more about your treatment. Are there any specific studies that have been done using Corsatax? I am eager to read these type of studies, published or private. I look forward to hearing from you. Thank You."

I will update with any additional info I receive. I hope they get back with me with great proof, I really do. But my realistic mind tells me they won't. I hope I am wrong. Until then, I would advise anyone not to jump into this one. You may never get your money back and they list no proof of their product working, with the exception of their overly generic testimonials. Darn!

UPDATE: As of April 15, 2010, I have not heard anything from this company...Surprise!

If anyone out there has tried this product, I would love love love, did I mention, Love to hear from you. I have always wanted just to try it and see what happens, but I just don't have the money to take that chance.

Oh, I have broken this post down, so my next post will be about another company similiar to this one, with another product aimed toward knocking Narcolepsy on it's proverbial butt. :) Thanks everyone for reading my posts. I love ya all!

Genetics Traits, and the Most Genetically Annotated Human on Earth!

Click here for one of the most interesting articles on how genetic traits can be analyzed. This author of the article has had 5094 traits analyzed! A world record, and an amazing story.

Narcolepsy - poetry

I woke up this morning
"2:43" said the blazing red lights
About four hours before my alarm
Usually goes off and slaps me awake...

I woke up this morning
Sat straight up in my bed
All bright-eyed and bushy-tailed like they say,
Rubbed my crunchy eyes and stared out my window
And into the slow blackness of night...

Still and cold and deathly quiet
Nothing moved, not even the trees,
Not even the clouds,
It was as if time had stopped, and I
Was the only one left behind, and it felt like

"The ship leaves in five minutes"
And I had slept through it all-- the megaphones, the shouts,
Even the sirens in the distance,
I missed the exodus, the passage
Again...

But when I woke up this morning
I put on my suede slippers,
You know them, the fuzzy ones that makes me shoot sparks
And I shuffled off into the dark kitchen
Wondering if I had lost something there
Like cold pizza from the night before...

Casting shadows from the refrigerator
I was hungry but did not eat
I was thirsty but did not drink
I was tired but did not sleep
Because somewhere I swore I heard you laugh...

At least I thought I heard you laugh,
Like fat stormy raindrops on my window pane,
Like blue-white snowflakes pushing February away,
Like a bamboo windchime with its wires tangled...

I woke up this morning
Wishing I could fall back to sleep,
Because my dream made no sense
And there was no one there I could tell it to...

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