One Sick Mother

Telling Joe

I don't usually write quite so personally about my children. I try to keep some distance between them and the World  -even here. But I feel this is an important post. I told Joe about his diagnosis recently and I wanted to share that with you. I don't claim to be an expert or that my approach will work for everyone (anyone!). But I wanted to post this experience and my way of handling it, so maybe those that come after may learn from me; -whether I did well or not!

Every parent of a special needs child eventually asks themself: "Should I tell him (/her) of the diagnosis?" " ...How?"  and "What if...  and then ..."

This is something that had been going back and forth in my mind for some time. I had always planned to tell  Joe that he is on the Autistic Spectrum when he is "ready".  Of course, the trick to that strategy is defining and determining readiness, and then -for us- in picking the right time and the right things to say.  Joe tends to process things in phases. You can tell him something and he will take it in, not say much, and then over the next couple of days or weeks, he will ask questions about it. By the questions he asks, I know he has been thinking deeply about it. It can take Joe weeks or months to become comfortable with a concept.

So recently, I figured Joe was about ready to know the truth about himself.  I reckoned the summer break would be a good time to tell him; a time which would not interfere with school if he took the news badly, and telling him early in the summer  would give him a few months to get used to the idea before starting Middle School in the Fall (can you believe he is starting Middle school already?).

It is funny how opportunity presents itself. The wednesday before school broke for the summer, Himself announced that he would need to be away for the weekend on family business and he could take one child with him if they so chose. Grace so chose, Joe declined.   The kids finished school on Friday morning. After saying our goodbyes, we went home with report cards in hand. I read Joe's report card, which he had been stressing about for months. It was OK. Not great, but OK. He is on grade level for most everything except writing. I sat down with him and we went over it, me telling him I thought he had done a good job, but obviously he needed to work with on his writing, something with which myself  and the teachers would help him.

Joe got upset.  He went up to his room and shut the door.  I followed a few minutes later. He has a loft bed and when upset, he goes into the space underneath it to get away from the world. So I sat on the floor on the other side of the ladder and we talked through the ladder. During the conversation he said a lot of things about being different and he referred to himself as 'ghost':  "I'm a ghost. I'll always be a ghost and there is nothing you can do about it". He has done this once or twice before,  and I didn't (don't) know exactly what he means by it.  I figured it meant he knew he was different in some indefinable way.  I knew then, sitting on the floor that I needed to define it for him. I also realized that the weekend would be the perfect opportunity;  with the teasing, attention hogging  Grace out of the way, we could talk about it openly with time to process, without fear of embarrassment for him.

I told him. "We need to talk. I need to tell you some things about yourself, which I think will help you to understand better. We'll do it tomorrow after Grace and Daddy leave"  I saw his eyes get curious, but he just nodded.  And looked a little more hopeful.

 

I dug through a bunch of baby pictures that night.  Pictures I had put away, because they are painful for me to look at. Because you can see the change in the pictures. There is a definite difference in Joe Before Autism and After Autism.  I have hardly any picture of Joe at 2/3 years old because that's when the Autism was most evident.  I'm sorry now, of course, but I can't un-ring the bell there...  (Unfortunately, my scanner is on the fritz, so I can't post these pictures right now)

The next day, after brunch and cartoons and some of the usually Saturday routine, I sat Joe down with the pictures. 

I told him the whole story.

I told him that when he had been born, he looked like a tiny old man with huge feet. That he had been a happy, curious baby. And that when he was about 19 months, he changed and lost all his words and skills.   I told him that I had taken him to the doctor, and my concerns had been ignored. I told him that I had not given up, and had seen other specialists and sent him to school to help him, had consulted yet *more*  doctors and specialists, had tested his hearing and vision and had taken him to the university for evaluation where finally at 5½, they had told me he was on the Autistic Spectrum.

I told him what I had been told by one specialist when he was about three: to "prepare myself" because my son "may never talk and would probably never read or write or go to a regular school". I told him that most kids who lost skills like that (i.e. had a full scale Autistic regression at that age) never came back to join the world again and that he was unusual for how well he did.  I told him that I had always believed in him -have never believed that one doctor. I told him that I had fought for him and that I always would.

We went back to the report card and looked at it with new eyes. I explained that for him, a kid who had lost roughly three year's worth of skills, to be on grade level for most everything was a terrific achievement. I told him to look at it this way: "In six years of grade school, you have made almost nine years of progress. That's why I am proud of you"

And he glowed.

I knew he had more questions, the main one being the label. I told him what they had told me at the university "he is on the Autistic spectrum (and I explained a little bit what that is), but we are not sure where.  We are calling it Asperger's syndrome (because he is so high-functioning)" of course, he had a giggle that his mom had used "the 'A' word" and I told him "so you're an Aspie"

"I'm an Aspie?"

"Yes." 

He thought about it for a second, decided that was OK and then started with the questions:

"Is this why I get Speech Therapy?"

"Yes"

"Does this explain my stutter?"

"I think so, although there are plenty of kids who are not Aspie, who stutter too"

"What about my synesthesia?"

"Yes. It's connected.  Some Aspies and Auties have synesthesia, but not many. Synesthesia  is still pretty  rare."  (sorry I know this is the first time you guys are hearing about the synesthesia, I had kept it under wraps until now, out of respect for Joe's privacy. I may post the full story another time.   Or I may not)

We talked for a long time and then he floored me. Joe clearly has inherited his opportunistic  mother's sense of timing, because he saw that we were being open and talking about conditions and stuff and so he took the opportunity to ask a question of me:

"Mom, do you have a condition that causes you to pass out?" 

*gulp*

"Why do you ask that, sweetie?  Has there ever been a time you couldn't wake me  (I asked, terrified)?

"No. But I remember that time at the park... Remember?"

Of course I remembered. I had taken them to the park after dinner, had started to feel seizure-auray almost as soon as we got there, and had told the protesting kids to get in the car  after only a few minutes ("But we just got here!").  I had told them then that I "felt dizzy" and needed to go home and they complied. Even though it was several months ago,  Joe had remembered and had waited for the right opportunity to ask me about it (see what I mean when I say he processes stuff?)

I was honest with him.  "Yes. I have a condition that causes me to pass out and take funny turns. I have had it for almost three years. That is the reason why I was in the hospital so much a few years ago. But it is not dangerous and I am not going to die or anything"

Joe nodded.

"I thought so"

 

He thinks a lot, that boy. This is a good thing.

Time will tell what he thinks of all this.

Funny

I got a phone call today from the vet's office: 

"How are you?"

I was confused. Why were they calling?

"Did George have an appointment that I forgot about?"

"No.  We are calling to see how you are doing. You weren't in such great shape the last time we saw you and we wanted to make sure you are OK."

"Oh!" 

So I updated her and off she went, wishing me well,  not a word said about any of the pets.

Wow. 

Now in fairness, my PCP checks in on me every onceinawhile, but apart from that, I don't think any of my own doctor's offices have ever called to see how I was doing. 

But my cat's doctor's office did.

Surreal.

It is wrong that that should seem so strange, doncha think?

I Blame George (He Blames Me)

George is one of my cats. He is 20lbs of lean, black-and-white naughtiness. However he is handsome and has a personality, so he get away with murder. 

Last Sunday, when Joe, the animals and I were enjoying a weekend without the blue-eyed members of the family (i.e. Himself and Grace), we noticed that George's foot was bleeding. We took him to the vet. He had torn one of his claws way back near the quick. It was clipped and cauterized and he was sent home, bandaged and only slightly subdued.

George managed to get his bandage off twice. The second time I left it alone, as the paw seemed fine, and he seemed happier without it, anyway.

So yesterday I was to take him for a checkup.  George however, had other ideas and when I tried to put him into his carrier, he put up a show of passive resistance that could have taught Mahatma Gandhi a thing or two. Eventually I got him in, but despite best efforts on both our parts, I ended up with an 8" scratch on my stomach.

When we got to the animal hospital, The vet took one look at George and said "I thought you said it was the left paw?" 

"It is the le...  Oh."

Georges right paw was bloodied up.  He had apparently broken another nail in the struggle to get him
into the carrier.  So he was carted off to the back to get that nail cauterized, and I had visions of this becoming a never-ending loop; with George breaking a new nail every time he needed to get the previous one checked...

While waiting, I started to feel dizzy and sick, so I sat down. By the time the vet and tech returned with George, I was feeling pretty awful. 
"Are you OK"
"No"
And I had a seizure on the floor of the vets examining room (less comfortable. but more room than the rheumatologist's examination room, BTW). 

It was quite interesting listening to the vet on the phone with the 911 dispatcher, who seemed to lack some imagination. "Yes. We need an ambulance to the animal hospital... ...No, no... This is the animal hospital.  We need the ambulance sent here.  Yes, for a person, not an animal.  No she doesn't work here. She is a client. She came in with her cat...  ...she had a seizure ...no,  not the cat.  The lady. The lady had a seizure and she needs an ambulance.  Now! (I had another one)"

So poor George had to stay in the vet's office while I was carted off in an ambulance.   They broke the series in the ER and I was sent home after receiving several tests I didn't need (and I TOLD them I didn't need them.  Would they listen?    noooooo...).

I don't know how much Ativan they gave me, but I slept for about 18 hours after I got home. George is still not speaking to me.  He blames me.

I totally blame him.  Even if I was going to have the seizure anyway: without him, it would have been in the comfort and privacy of me own home, with no ER trips.

Silly cat.

Setting Goals: The Reading List

I have always been a very driven, goal oriented person.  It is one of the reasons I did well in the software business for so long, I was able to strive toward a goal;  work to a deadline and pull many (sometimes unwilling) colleagues along with me, by sheer force of will (and occasional threats of violence).

But it is very difficult to set goals when you are chronically ill. Surprisingly (to me), even the small goals proved a challenge. 

I tried. I took some classes. I had to drop out of the PhotoShop class halfway through because I was having seizures or auras.  I stopped the yoga class because they were doing a lot of moves that are ill advised for a person with Ehlers-Danlos Syndrome and/or Syringomyelia. I kept having to bail on my neighbour for our dog-walking runs because of seizures and fatigue or pain. I was fired from Physical Therapy because I kept having seizures there. And I grew tired of missing goals I set for myself around the house (like repaint the upstairs bathroom, which is tiny); unable to perform them due to pain, fatigue, seizures or dizziness.

There are a lot of things I would like to do and learn. Ambitious (and currently impossible) projects like an MBA aside; there are many classes I would like to attend, just for laughs: Knife skills, sewing, ballroom dancing,  (an ambitious one, that), yoga, pilates, pottery, jewelry making, beading, painting -... the list is endless! But right now, I can't do it. I cannot spend money I don't have on a class I may not be able to attend.  It is very limiting. And soul destroying.

Recently, my seizures and dizziness have been even worse, leaving me even more bored and isolated. I have been spending less time on the computer because the screen bothers my eyes. I was stuck for something to do, because I CANNOT sit and watch telly for hours on end.  I knit until my hands hurt. I listened to all my CD a gazillion times, got bored with all of them, but was too poor or stingy to seek new music.  So I finally renewed my relationship with the public library. 

Cool.

And I decided that now is the perfect time; -while I am pretty disabled, and until I can get some decent treatment, to do something I had been meaning to do for many years. Read some classic novels.  Oh yeah baby!  Here is an opportunity to set some goals AND to improve my tiny little mind.  My butt may suffer, but it was suffering anyway. Without good medical guidance, there is no helping the butt right now.

I  decided to set myself a list of 26 classic novels to read, one for each letter of the alphabet. When I am finished that list I will assign myself another one. I was unsure where to begin, so I shouted out to my Facebook friends for some recommendations which they readily gave (thank you!).  And then I gathered a few "100 best..." lists off the Internet, went through those and -somewhat randomly- came up with my final list. I thought to keep it to one per letter of the alphabet where possible, because that would place some books on there that I probably would not have chosen otherwise -just to mix things up a bit. And it stops me from reading only books that start with "G" or "H", or from reading six books by the same author at once; both habits towards which I gravitate.  

There are some obvious holes in this list because I may have read the book already a gazillion times, (Wuthering Heights) or because I just couldn't be arsed (Ulysses).  I couldn't find any J, K, X and Q books, so I substituted those with  a few other letters.  I am sharing this list just to keep myself honest (but I reserve the right to stop reading a book if I hate it)!

A

Anna Kerenina by Leo Tolstoy

Atlas Shrugged by Ayn Rand

B

Blood Meridian by Cormac McCarthy

C

Cat's Cradle by Kurt Vonnegut

Crime and Punishment by Fyodor Dostoevsky

D
Dracula by Bram Stoker

E

Enders's Game  by Orson Scott Card

F

Frankenstein by Mary Shelly

G

Germinal by Emile Zola

The Grapes of Wrath by  John Steinbeck

H

A Handful of Dust Evelyn Waugh 
(Mrs whatsername with the hand-knit Fair Isle sweaters from high school will be happy that I finally crossed something off me High school reading list after all these years.  Although I didn't realize until today that Waugh wrote "Brideshead Revisited", which I had read  before high school, or I might have lost one less brownie point from her.)

The Heart of the Matter by Graham Greene

I

I , Claudius by  Robert Graves
(loved the TV series with Derek Jacoby!)

L

Loving by Henry Green

M

Madame Bovary by Gustave Flaubert

N

Nostromo by Joseph Conrad

O

One Flew over the Cuckoo's Nest by Ken Kesey

P

Play it As It Lays by Joan Didion

R

Ragtime by E.L. Doctorow

S

Shirley by  Charlotte Bronte

T

Tender is the Night by F. Scott Fitzgerald

U

Under the Volcano by Malcolm Lowry

V

V. by Thomas Pynchon

W

The Wide Sargasso Sea by Jean Rhys

Y

Yarrow by Charles de Lint

Z

Zuleika Dobson by Max Beerbohm

 

I have no idea how long this will take me, and I am setting myself no timeframes for completion of this task. The satisfaction should be in the journey, anyway. 

I hope.

Oslo Health Solutions: Preying On The Sick Part III

I'm kind of sick talking about these people by now, to be honest with you. I have devoted hours and hours of rather nauseating research to Oslo Health Solutions and their claims. There are many, many more hours of work that could be done; -just on the Internet alone, before one starts on private and other channels, but I don't have the resources for it, financially,  physically or spiritually.

But there are two areas I do want to explore:  How people like this might think, because it seems to me,  their thought processes are very different than us trusting honest normal people. Maybe getting into their brains a little will help us to beware of others of their ilk.

And I also want to let you know how you can fight back; against people like this in general and against Oslo Health Solutions (OHS) in particular.  Because let's face it: Oslo Health Solutions run a pretty despicable operation and they need to be stopped.  Now.

So how do they think they can get away with it?  I have thought about this and I think I figured out a few um ....principles for Internet fraud.

1. Lie Big:
   It is a concept con-men have down cold, but one that most decent people can't get their heads around:  If you are going to lie to people: Lie big. Don't bend or massage the truth.  People are expecting that. Most normal people lie small, They exaggerate or use words like "almost" or "virtual".  But the truth is usually somewhere underneath. People expect this and watch out for exaggerations and small lies. People generally don't expect a lie to be totally bald-faced and to have no relation to the truth. Therefore we see the grandiose claims OHS make and we expect there is some truth to them. This is why OHS were so smart in their pitch. They understood this and therefore they sold so high, but delivered so low, they seem to have flown right underneath most radars.  
    
2. Divide and Conquer: 
   People with specific illnesses don't generally go looking for herbal treatments for other illnesses, so if one product was exposed as a fraud, then it is just that one out of ...what?  ...about 60 now that I have found?... I figure OHS simply dump the product that was exposed, find a new disease, re-brand the website and labels as "new disease-Tab" and then carry on selling the exact same product to a different market.
   
   I guess OHS didn't expect anyone to search on more than one or two of the diseases they cover. The must have figured that chances that someone would work out that they are selling  the same list of ingredients as  a completely guaranteed and clinically proven herbal treatment for up to nineteen (19) different conditions, from teething troubles to Multiple System Atrophy (MSA), which is generally fatal within two years of diagnosis (Elizabeth at Screw Bronze! has MSA. Read her blog if you want some graphic descriptions of what it does to one .... and   -Quick! give her some shallots and Red Earth!  That'll be bound to cure her...)
   
   
3. Avoid well-organized groups:
   There is No MS-Tab, no Breast Cancer-Tab, no Autism or Aspie-Tab, no Alzheimer's-Tab and I think there is a very good reason for this. It is probably the same reason Cardio-tab no longer exists:  These conditions are highly public and have well-populated organizations and lots of support groups surrounding them, the jig would be up pretty quickly with most of these conditions. -I was actually surprised to find MD-tab, Leukotab and Parkotab, as they are also quite well organized too.  
    
4. Use the Global Market to confuse your  umm... "customers":
   If you set up shop based out of a small, little understood country in Scandinavia, then ship your product from Pakistan, most normal sick people won't be able to figure out how to take action against you from halfway around the world... 
   
   But keep reading.  I have found a fair bit of information on this.

I have two imaginary scenarios for who could be behind Oslo Health Solutions:  In the first one, it is a couple of teenagers, now young men, who started it as little more than a lark out of someone's bedroom, not fully comprehending the real lives that could be effected behind the illness they researched on-line to create new markets for a Pakistani Hemorrhoid preparation.

It the other scenario, it was started very deliberately by adults who have no regard for others, knew exactly what they were doing and are in this game to make money, not caring at all who gets hurt in the process.

Regardless, it is wrong.

Several people asked me, both in comments and through other channels, if we could inform the FDA about this. I don't think the FDA has any interest, as natural remedies and herbal supplements are not very regulated here in the US. However, they might be interested to investigate if they thought Americans were being sold Strychnine as a supposed cure for Parkinson's disease.   I will look into this.

However, FDA aside (for now), the Norwegian government DOES regulate (and tax!) natural remedies. It falls under the jurisdiction of the Norwegian Medicines Agency, and they have an English version of their website, and of their contacts page (how cool is that?), complete with e-mail addresses, so you can send the links directly. I love Scandinavian efficiency!

Now, I suspect that Oslo Health Solutions are trying to get around some of the European laws and regulations governing sales of herbal remedies as well as false advertising laws by manufacturing and shipping their product from Pakistan. 

However, Pakistan now has the Electronic Transaction Ordinance (2002) which protect consumers in electronic commercial transactions, such as buying poison from Pakistan. More interestingly, there is the 2007 Electronic Crime Ordinance which has this interesting clause, potentially punishable by death:

17. Cyber terrorism. -

a. Any person, group or organization who, with terroristic intent utilizes, accesses or causes to be accessed a computer or computer network or electronic system or electronic device or by any available means, and thereby knowingly engages in or attempts to engage in a terroristic act commits the offence of cyber terrorism.

Explanation1: For the purposes of this section the expression “terroristic intent” means to act with the purpose to alarm, frighten, disrupt, harm, damage, or carry out an act of violence against any segment of the population, the Government or entity associated therewith...."

Do you think that selling Strychnine to Parkinson's patients over the Internet could be interpreted as "Intent to harm, damage or carry an act of violence against a segment of the population..." (what we in America would call a hate crime)?  I think it could be.  

Interesting stuff, eh? 

Now: Of the sites I investigated (and I have to admit that a few, such as Inisitab, and Abdotab were late additions to the party) the vast majority claimed to be run our of Norway, from this address:

Oslo Health Solutions

Oslo Health Solutions
Suite 329
Youngstorget
NO-0028 Olso
Norway

There are a few exceptions, Some had no address whatsoever, but when you click on the "order now" , button, it comes up as Oslo Health Solutions. These included Raynotab, Guillatab, Clearotab,

...and a few products seemed to be run out of the UK, from corporations (...or are they? "Inc" is not a UK corporation suffix  "Ltd" or "plc" are the norm over there.  ...Hmmmm.)  supposedly operating over there.  Note the addresses are all exactly the same.

Vertigo Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Anemia Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Psoriasis Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Vitiligo Tab was the one which had buried its tracks particularly well. No address, no telltale "Oslo Health Solutions" banner on the order form. The Web site was registered to a "Charls Dickens" (sic)  of

Berkeley Square House,
W1J 6BD
London,  W1J 6BD
United Kingdom

In the UK, companies making false claims over the Internet are regulated by  The Trading Standards Institute.  Vitigilo tab is claiming that "Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo" (my emphasis). Psoriasis Tab and Vertigo Tab also claim a "100% cure", whereas Anemia Tab claims a "completely guaranteed and clinically proven herbal treatment for Anemia".  Are these false claims?  I dunno, but I think they should be investigated by the appropriate parties.

So what you do is this: You go to their site and enter the postcode

for the guys against whom you wish to complain, which is KT2 6LX  or W1J 6BD (for Charls Dickens) and you follow the instructions from there.

Little people can fight back, you know. We just need to get the right muscle on our side.

Oslo Health Solutions: Preying On The Sick Part II

This is Part II of my little exploration of a unscrupulous company who takes advantage of sick people by selling them herbal remedies under false pretenses. In part I, I told you about the products sold by Oslo Health Solutions, which is by far the worst offender out there that I have found. In Part II, I am sticking with Oslo Health Solutions, and concentrating on the ingredients they claim are beneficial for a very wide variety of serious ailments. I am uncovering new and interesting information every day, none of it good.

 I promised you an analysis of the formulations that Oslo Health Solutions (OHS) purport to use for the various ailments that they purport to treat.  I performed this exercise a couple of years ago on the Syrotab formulation, what I am now calling "Formulation 1" herein, as it is touted not only for the "guaranteed treatment of Syringomelia" (a condition which cause hideous pain, disablement and eventual death), but as a "guaranteed treatment" for several conditions, including Post-Polio syndrome (potentially crippling), Osteomyelitis (potentially fatal) , Peripheral Neuropathy (often treatable if the underlying cause is located) and Muscular Dystrophy (both crippling AND fatal).  My little analysis at the time was done for fun, and it was amusing-if-a-little-scary then. Looking back and knowing what  I now know, Formulation 1

The main ingredients are listed as

Magnesium Murakab
Zinc Murakab
Berberis aristate
Ext Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

LETS BREAK THIS DOWN, SHALL WE?

Magnesium Murakab, Zinc Murakab
I could not find any information on these specific formulations of magnesium and zinc. So I looked up the work “Murakab”:

It is an Islamic concept meaning “complex ignorance” See the following explanation:

The classical ulama of Islam divided ignorance into two parts; namely; simple (basiit) ignorance and complex (murakab) ignorance. In simple ignorance one knows that one does not know whereas in complex ignorance one does not know that one does not know. Often people who do not have book knowledge, i.e., those who did not have the chance to study at universities are characterized by simple ignorance. This type of ignorance is not as deadly as complex ignorance since one does not have the arrogance and the pride that often accompanies the thought of considering oneself ’educated’.

Hmmm. Something smelled bad. So I kept looking down the ingredients list:

Berberis aristate Ext: OK this is actually something, though misspelled.  It is extract from the plant Berberis Aristata, English name Tree Tumeric, the root of which has antibiotic and anti-inflammatory properties. (To my eyes, They will need all the anti-inflammatory properties they can get to counterbalance that "Murakab" jab.)

Egg Shell Calcium (quoi? I know eggshells won't do any harm if ground up finely, but I don't think the type of calcium found in eggshells is can be absorbed by humans)

Sulphur:  (in what form? and some people are allergic to sulphur -where's the warning?)

Substituted olive Oil: Substituted for what? Or more interestingly; what was substituted for olive oil?

My summary at the time:

Should I ever get the urge to sprinkle my breakfast eggs with tree tumeric, sulphur and complex ignorance, then eat them shells and all, I will let you guys know how I get on. In the meantime,. I think that anyone with Syringomyelia or other conditions should save their money to apply to real medical expenses.

("Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be "possible for us to make such a bold claim")

Formulation 2:

The main ingredients, according to Oslo Health Solutions are:

Berberis aristata D.C Ext.
Melia azadirachta Linn Seed
Raphanus satirus Linn
Melia azadirachta Bark
Red earth
Sulphur (purified)
Allium ascalonicum seed

These ingredients, presumably in different combinations (if one is to be kind) are "guaranteed" by OHS to treat the following

Muscular Fasciculation

Kugelberg Welander Syndrome 

Pseudotumor Cerebri

Ascites

Myelodysplastic Syndromes

Teething Troubles (Yes. They say you should give it to babies!)

Spasmodic Torticollis

Enlarged Tonsils

Arachnoid Cysts

Multiple System Atrophy

Ameloblastoma

Wiskott Aldrich Syndrome

Horner's Syndrome

Chordoma

Benign Essential Tremor

Myelodysplastic Syndromes

Benign Essential Blepharospasm

Cronkhite-Canada Syndrome

Megaloblastic Anemia

Really.

So I did a little research on each of these ingredients:

Berberis aristata D.C Ext.: Here again is our friend the Tree turmeric, spelled correctly this time.

Melia Azadirachta Linn Seed: Azadirachata Indica is an evergreen tree native to India and the region. It is used for medicinal purposes: The bark is used for fever, nausea and skin diseases. The leaves are used for skin diseases -but applied topically.

I couldn't figure out what the seed oil (I presume this is what Linn Seed means) is used for specifically.

Raphanus satirus Linn: I think this might actually refer to Raphanus Sativus Linn, which is the Chinese radish. Its seeds are used for natural medicine in diuretics and laxatives and also to help naso-pharyngeal affections and stomach troubles

Melia azadirachta Bark: Bark from the Azadirachata Indica tree as mentioned previously. The bark is used for fever, nausea and skin diseases.

Red Earth: Um. I think as the description suggests, this is earth (dirt) that is red, from India. It is seems to be used in face packs and the like. I don't know why anyone would eat it, but maybe there is a good reason.

Sulphur (purified): Used in Indian homeopathic medicine. I am not sure what for, exactly

Allium ascalonicum seed: Allium ascalonicum is the common shallot. Shallots appear to contain more flavonoids and phenols than other members of the onion family.

While researching these ingredients, I found them listed in the same order, with the same misspellings, on a site that appears to have nothing (publically) to do with Oslo Health Solutions.

Check out the information for Pileen, a natural remedy for hemmorhoids, which is marketed and sold by Ark Corporation (Rawalpindi, Pakistan)

Some text from their site:

PILEEN is an effective herbal remedy for treatment of piles or haemorrhoids. It stops bleeding of haemorrhoids and relieves pain and inflamation. Pileen also removes the constipation, which is one of the main cuases of piles. Pileen is equally effective for both (internal and extrenal) forms of piles.

WHAT IS PILES?
Piles, also known as haemorrhoids, are swollen blood vessels in the back passage. There are two types of piles - internal or external: Internal piles are the most common form of the condition and appear as bright red shiny swellings inside the anal canal, covered in the thin, moist lining of the rectum. External piles are swollen veins close to the anal opening, covered in a layer of skin with a dark red or dusky purple appearance and can resemble bunches of grapes.The main cuases of piles are constipation (for a long period) and use of too much chillies and spices.

To prevent piles :

• Ensure that there is adequate roughage (bran, whole grains, green vegetable, and fruits) in your diet.
• Avoid alcohol, tea, coffee and very spicy food
• Drink at least 8 glasses of water daily preferably non-refrigerated.
• If your life style is sedentary include some exercises in your daily routine.
• Get yourself treated for any condition that is causing you to strain such as chronic cough
• Attend to nature's call daily and do not postpone the urge to defecate, but do not sit for too long in the toilet.
• Maintain god hygiene and keep the anal area dry learn to relax mentally and regularize your life style
• Isabghol husk can be taken as a bulk forming laxative.

DOSAGE:
Two tablets thrice a day with water.

INGREDIENTS:
Berberis Aristata ,Melia Azedarch, Linn Seed, Raphanus Satirus, Red Earth, Purified Sulphur, Allium Ascaionicum Seed.

Just a side-by-side look at the ingredients again: Pileen above, multiple OHS products below

Berberis aristata D.C Ext.
Melia azadirachta Linn Seed
Raphanus satirus Linn
Melia azadirachta Bark
Red earth
Sulphur (purified)
Allium ascalonicum seed

Fascinating, huh?

The funniest fact is this:  OSH do sell a product called Hemorotab, but the ingredients are completely different than the hemmorhoid treatment they apparently re-label and sell to treat MSA and other serious health conditions! Mad, eh? Here is the list for Hemorotab (Hemorotab! I ask you?! Sweet mother of God! I couldn't MAKE this stuff up!)

(The main ingredients of Hemorotab tablets are: Nuqra flakes , Ruby triturated, Turquoise, Agate green, Bombyx mori, Elettaria cardamomum, Conucilien, Corallium rubrum, Coral, Sea coconut, Ambra grasea, Aquilaria ovata, Delphinium denudatum, Doronicum hookeri, Lapis lazuli, Myristica indica, Pearls triturated, Vateria indica, zehar mohra, Crocus sativus

Hmmmm ...rather heavy on the precious and semi-precious stones, this one. Who knew hemmorhoids were so status-conscious?)

...but I digress...

On to Formulation 3...

This one is supposedly for the treatment of Idiopathic thrombocytopenic purpura (ITP), which is a bleeding condition in which the blood doesn’t clot as it should due to a low platelet count. OHS's "treatment" for this includes the following.

Ammonium Chloride
Potassium Nitrate
Cinnamomum
Tamala
Rheum Emodi, Wall
Base Q . S

My analysis:

Ammonium Chloride: Salt of Ammonia. Its expectorant action is caused by irritative action on the bronchial mucosa. This causes the production of excess respiratory tract fluid which presumably is easier to cough up. I'm not sure what benefit this woudl have to bleeding or platelets, exactly.

Ammonium salts are an irritant to the gastric mucosa and may induce nausea and vomiting.  (Again, not getting the platelet connection here)

Potassium Nitrate: Salt Peter. A popular misconception was that potassium nitrate caused impotence and it used to be added to food in all-male institutions. This myth has been debunked. However, potassium nitrate and other nitrates do successfully combat high blood pressure and are used medically to relieve angina.  (Fair enough -not that I think ITP causes either of these problems.)  Oh and BTW:   Platelets, anyone?

Cinnamomum Tamala: Indian Bay leaf. It is mostly used as a seasoning, but is reputed to help colic, diarrhoea, and "rheumatism". It is also said to reduce blood sugar.

Rheum Emodi, Wall: Reported to be useful in biliousness, chronic bronchitis, asthma, sore eyes and bruises.(OK! Maybe this one is for the platelets!)

Base Q . S: I could only find references to this as a listed ingredient in some shampoo that is supposed to prevent hair loss...

Formulation 4.

For Peptic Ulcer Disease,  -the thing that struck me -just looking down this list, was that there is a lot of strong, fragrant substances being sold to soothe a peptic ulcer? Logically, that doesn't compute...

Camphor: Camphor is used in several cough preparations such as Vicks and Buckley's as a cough suppressant and topical analgesic

Menthol: Menthol has analgesic properties that are mediated through a selective activation of κ-opioid receptors. Menthol also enhances the efficacy of ibuprofen in topical applications via vasodilation, which reduces skin barrier function

Oleum anisi: Oil of Anise is employed as an aromatic carminative to relieve flatulence. The oil may be administered on sugar or as Spiritus or Elixir Anisi. It is a mild expectorant, and is an ingredient of simple cough lozenges, often in combination with liquorice

Oleum carvi: Caraway Oil is used to impart flavor to medicines, and to correct their nauseating and griping effects

Oleum eucalypti: The oil of eucalyptus (which is chiefly eucalyptol) and eucalyptol, in small doses, are gentle stimulants; in large doses, they occasion irritation of the throat and fauces, with increased flow of saliva; cephalagia, with extreme fatigue; frequency of the pulse; increased temperature; diminution of vascular tension; gastric irritability, and, not unfrequently, diarrhoea, accelerated respiration, the peculiar odor of the oil being exhaled with the breath; and increase of the urinary excretion

Oleum pine: Pine Oil. It is given internally as a disinfectant and expectorant,

Thymol: Thyme extract. Recent medical research on rats concludes that "Thyme extract had relaxing effects on organs possessing β₂-receptors (uterus and trachea). Thymol has GABAergic properties via a mechanism of action similar to the anaesthetic propofol. Though much less potent, thymol may possess abuse potential (Nice!).

Tincture zingiber: Essence of Ginger  used to calm the stomach and also to treat pneumonia, acute and sub-acute dysentery

Formulation 5

This is purportedly for the treatment of Parkinson's Disease, Soft Tissue Sarcomas and Atrial Fibrillation. It was when I started to go through this particular list that I started to feel like I had stepped into the twilight zone. The lady from whom we bought our house had Parkinson's, and I saw a tiny piece of that that did to her. It is a horrible disease (most of the diseases OHS claim to treat are horrible. This seems to be deliberate). To think that these people are selling the list below (read it) as a "completely guaranteed and clinically proven herbal supplement that helps patients overcome the symptoms of Parkinson's Disease" just makes me want to vomit. Apparently, if I took some parkotab, I might do just that! Read on if you have the stomach for it:

Salvia Haematodes: (from a PubMed article) The aqueous extract of the root of Salvia haematodes has been investigated for its pharmacological actions on the cardiovascular and central nervous system. It was found to possess significant cardiotonic and anticonvulsant activities.

Centauria Behan: Centaurea Behen is the correct spelling. A white flower of the knapweed family. Said to be tonic.

Orchis Mascula: The ground-up root (called Salep) is very nutritive, astringent, expectorant and demulcent. It has been used as a diet of special value for children and convalescents,

Delphinium Denudatum: According to an Indian Medical site: "It helps in reducing the inflammation and also helps in relieving pain. It helps in curbing the infection happening in the body and wounds. It is a good nervine tonic and makes the nervous system strong. It improves digestion and normalizes the peristaltic movements in the gut. It stimulates heart for normal functioning and also helps in purifying the infected blood. It checks the respiratory system by expelling out the extra mucus from it. It is a good aphrodisiac agent and also normalizes the menstrual cycle". (I bet the men with Parkinson's will be pleased to have their cycles regulated. Quick! Call Michael J. Fox!)

Myristica Frargrans: Duplicate entry -a mispelling of Myristica Fragrans (i.e. nutmeg) -see below for details

Cinnamonum Cassia: "Chinese cinnamon", a key ingredient in 5 spice seasoning, but has no medical properties that I could find.

Doronicum Pardalia: Thanks to the misspelling of "Doronicum Pardalis" I found this little gem, from our friends at Ark Corporation in Pakistan.

Aren't misspellings fun?!

Doronicum Pardalis: -no such thing. Doronicum is a plant called leopard's bane and Pardalis is a descriptive word meaning well... leopard! (...so that means...what? leopard's leopard's bane? Leopards bane squared? The mind boggles...)

Zingiber Officinale: Common Ginger. It is often used as a natural remedy for stomach upset, motion sickness, and nausea

Asparagus Racemosus: A plant native to India. It is sometimes used to treat dyspepsia.

Paeonia Emodi: The Himalayan Peony. Not only is it purty,

it actually has a significant effect on the Central Nervous System.  Read this.

I don't know if this is necessarily a beneficial effect for Parkinson's sufferers, however...

Serpentine Bezoar:  It sounds like something out of Harry Potter, right? And it almost is. A bezoar is a mass found trapped in the digestive tract of an animal. A hairball is the most common kind (Yum!).

I couldn't find much information about serpetine beozar (outside of references on various OHS sites). I imagine most of the big ones would end up in a serpentine shape (think about it), as opposed to a having been taken from a snake's digestive tract, although maybe that's what they mean. Either way, I am not impressed.

In the middle ages, Beozars were highly prized and considered to be an antidote to any poison; -which theoretically makes it a good thing to put in this particular formulation,  given some of the other ingredients therein (see further down the list). But that myth was debunked in 1575.

Pearl Oster: This may refer to the remains of this woman (at this point, I wouldn't put anything past Oslo Health Solutions!)

...or it could mean "Pearl Oyster". This in turn, could either mean pearl oyster mushrooms, or it could refer to actual ground-up pearls (less likely).

Caryophilus Aromaticus, which are cloves

Kushta Qalee: I can't quite figure this one out. It appears to be some kind of substance popular for male performance improvement, It is used in several such products including  Ejacutab!  (hey look! There's the laughing couple again!)

Stychnos Nuxvomica: Misspelled. This refers to Strychnos Nux-Vomica, which is a product of the Strychnine tree. (Yes, really! Nux Vomica = poision nut!) According to the Internet, It can actually be used to treat flu, fatigue, hangovers, stress, headache and sleeplessness

...and to kill people, of course. Let's not forget that.

Asphaltum: No. This does not refer to ground-up road. Not quite, anyway. Asphaltum does occur naturally and is sold in India as Shilajit (which means destroyer of weakness in Sanskrit -love that!). According to a site I found "it works as a powerful anti oxidant thereby delaying aging. It is an effective remedy in arthritic conditions like rheumatoid arthritis, osteoarthritis, gout and other joint related problems and back pain".

Amber Gris: Ambergris occurs as a biliary secretian of the intetines of the Sperm whale and can be found floating upon the sea, or in the sand near the coast . Ambergris has been mostly known for its use in creating perfume and fragrance much like musk. During the Middle Ages, Europeans used ambergris as a medication for headaches, colds, epilepsy and other ailments

Bambusa Arundinacea: Thorny Bamboo. It is used as an aphrodisiac, diuretic, demulcent, tonic, pectoral, stimulant, and antifertility treatment.

Myristica Fragrans: Nutmeg! (known as Jaiphal in India) Jaiphal is a aromatic, carminative, hallucinogenic, stimulant that is considered effective in digestive disorder, de-hydration & skin disorders.

I wanted to continue this exercise. There are at least 8 other formulations that I have not covered. But honestly, I am feeling quite ill right now. I think If before, anyone might have thought there may be something to the claims of Oslo Health Solutions, the idea of giving whale bile, posion, hairballs and unstudied anti-convulsants to someone with Parkinson's disease will make them think again.

There will be a Part III in this series, because I still have some questions which I think are relevant. However, in the meantime, here is a list of even more Oslo Health Solutions products I have found while researching this piece.

Hernotab, Hemotab, Hemnotab, Hemorotab, Ejacutab, Phyratab, Fibritab

Is there no end? ...

Oslo Health Solutions: Preying On The Sick Part I

Every now-and-again, on a support board or some other website, I will run across a person who is asking about a herbal remedy they found on the Internet. Had we heard of it?  Has anyone tried it? Does it work? What are the side effects? Is the money-back guarantee for real?  Now, it very easy for a well person in the cold light of day to spout hackneyed phrases like "stay away from miracle cures" and "if it sounds too good to be true, it probably is". Those who are well and relatively pain-free don't understand the desperation some of us with chronic conditions (and our families) can go through when faced with an incurable condition and very little help. It is easy for the well to warn that cross-border herbal remedies are not regulated and that we have no clue what we might be getting.

Yes, it is easy to say if you are well.

However,  if you are looking down both barrels of a chronically painful and potentially disabling condition like Syringomyelia, for yourself or your child (or your  mother /aunt /brother /grandchild /father /sister /uncle /niece /nephew... etc) and it is three in the morning and you can't sleep for pain and worry, can't find a specialist who knows about the condition within 300 miles and then maybe some of these solutions may seem like they are worth a try.  How many among us would not spend a hundred dollars to try and help a loved one?   

Sick people and their families can be easy pickings for unscrupulous product developers and sales people.  I remember a couple of years ago, -in Feb '07 actually, I came across a product called Syrotab  mentioned on a message board. The product claimed that  “Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

An admitted bold claim, but they say they can back it up.

If you look at the web site for Syrotab, it looks legit. 

 

The site is slick and professional looking, with a picture of a beauitful but rather vacant-looking bi-racial woman, flanked by a couple of handsome guys in the background; one serious and one trying to look sincere. The site has a short but accurate description of what Syringomyelia entails and then they get to their -self-acknowledged "bold" claims of treatment (not cure!) within a few weeks. They back up these claims with promises of clinical trials and money-back guarantees up the wazoo.

Back in February '07, I did some analysis on Syrotab.  I checked their site to try and find details on their clinical trial results. but the link said it is "coming soon"  For a laugh, I checked again today. Guess what?  It is still  "coming soon"!  Shocker!   Did you ever hear the Jamaican expression "Soon Come" (i.e. never)?   Yep. It's the same deal.

Back in '07, I cut and pasted some text from their website:

“Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Syringomyelia effectively.

Thousands of patients have been successfully treated with Syrotab over the past few years. Syrotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Syrotab tablets are:
Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.
Treatment with Syrotab is very rapid obvious results can be noticed within 40 days of use. A complete course of treatment lasts three months.

Syrotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Syrotab comes for a fixed price of $230 for a one month supply….”  Update: the price is now $79.99.  Bargain!     ...NOT!

I researched some of the ingredients mentioned, which was an education in itself.  I will get into all of that in part two of this piece.

When researching these ingredients, I came across something very interesting.  Amylotab! Here again, was my friend,. the vacant biracial woman.

...and here is the text from the "about Amylotab" page...

 
Amylotab is a completely guaranteed and clinically proven herbal treatment for Cutaneous Amyloidosis.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Cutaneous Amyloidosis effectively.

Thousands of patients have been successfully treated with Amylotab over the past few years. Amylotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Amylotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Amylotab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Amylotab is very rapid obvious results can be noticed within 2 months (60 days) of use. A complete course of treatment lasts four months.

Amylotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Amylotab comes for a fixed price of $290 for a one month… (now a virtual bargain at $79.99!)

I saw a theme emerging. Something smelled very fishy indeed.  I did some more searching and found  Osteotab

It was probably a mistake on my part. But at that point I left the whole business behind me, thinking it was small scale and well, that it wasn't really my problem. Surely some other people would come along and blow the whistle on these guys?

Then yesterday, when I got started again on the theme of false miracle cures for a completely unrelated reason, I found all these sites still happily operating. I also found this!

 

 

Oh no, they Di-n't!!      (Oh yes. They did!)

...and after that, I went completely mad on Google using all sorts of combinations of keywords and search strings. I hit the motherlode!  I have summarized and collated the data.  The list is at the end of this piece with links and all that good stuff.  If you check it out, you will see the evidence is indisputable: Oslo Health Solutions are total rip-off artists.  What makes me so mad is the scale of the operation, as well as the people targeted. Most of the conditions they claim to "treat" are chronic and incurable. many cause serious pain, disability or death.  Talk about preying on the desperate!

Even worse, some of the conditions they claim to "treat" are progressive, dangerous, cancerous  or pre-cancerous. I don't think anyone would be stupid or desperate enough to try one of these treatments in lieu of real medical help. At least I hope not! But then again, there may be desperate people out there with no insurance, who spend what little money they may have on acquiring false hope.

There are two primary templates used on these sites. The most-used by far is the vacant woman one as show previously.  

However there is another template, even more slick,  which I have dubbed the "laughing couple"  (aren't they lovely?)  template. 

 

Although this site looks completely different to the others mentioned so far, read the text: 

Peritab is a completely guaranteed and clinically proven herbal treatment for Peripheral Neuropathy.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Peripheral Neuropathy effectively.

Thousands of patients have been successfully treated with Peritab over the past few years. Peritab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Peritab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Peritab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Peritab is very rapid. Obvious results can be noticed within one month of use. A complete course of treatment lasts two months.

Peritab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Peritab comes for a fixed price of $180.00 for a two months supply (240 Tablets) and can be ordered from our website. We do not charge any shipping price.

Treatment with Peritab is fully guaranteed. We are so confidant about the effectiveness of Peritab, that in the rare case you remain unsatisfied with the improvement in your condition, you may simply return the empty packaging along with the original receipt and claim a refund of the amount you paid us. The guarantee is valid for 120 days from the date of purchase. Since all payments are made via credit card directly to CCNOW (our credit card processing company), your money is completely safe. CCNOW will ensure that we honor all claims for refund. The only condition is that you have to be persistent in your treatment with Peritab for a complete course of the treatment. Skipping pills or being irregular will only delay the treatment.

If it sounds familiar, it is. It is exactly the same wording as for Syrotab, Amyltab, Osteotab, MD-Tab and several others, right down to the ingredients list. A straight cut-and paste job, with just  product name and pricing changed.

 

Proof of Cut and Paste: Check out the title of this "Thyrotab" about page. They forgot to rename it from "Psoriasis Tab"!

Although there is no company name or address listed on the Peritab site that I could find, the "Order Now" button gives it away

CCNow is an authorized retailer for OSLO HEALTH SOLUTIONS

Bastards.

Just to clarify, I think CCNOW is a legit operation, however they don't issue refunds without their client's approval. Their client is Oslo Health Solutions,-not the consumer.  

Do Oslo Health Solutions back up their promises?  Well, this person will never know. OHS never sent the Ptosotab that was paid for.

 

The next person actually received some bottles of pills (I must admit I was surprised to see this) but returned them and got no refund (quelle surprise!).

 

Another report; -this time for Sarcotab:

But what about the clinical research, I hear you ask?  They say there is some.

I didn't check absolutely every site for clinical research, and most of the ones I did check, had the very familiar "will be posted soon" message.  However, Vitiligo Tab (Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo.) has a research report attributed to Gaurang Clinic and Center for Ayurvedic research. 

I tried to cross reference this by searching Guarang's own site for the paper -I thought they would have it listed among their 49 other reports, but it wasn't. Curious.

Then I read the report. It seemed a bit low on actual research to my somewhat-trained eyes. There is a of information about Vitiglio itself , and some interesting if rather vague claims made.  But the information on the study itself and the findings thereof seemed somewhat hazy. They look great at first blush, but there were some things that seemed a little ...off.  First off, the study was not double-blind. There was no placebo.

Next, I noticed that the report uses a timeframe of 1996-2001. However, Vitiligo Tab -according to the site copyright- wasn't introduced until 2007. Was it in development for 19 years? (no wonder it is so expensive).  And finally, it doesn't say how the results were measured and over what timeframes.  It used terms like "cured" and "90% Improvement, but does not break it down into the different types or extent of vitiligo, which had been painstakingly outlined in the beginning of the paper. It looks like it does: -uses terms like "both sexes are equally affected by Vitiligo"  but it doesn't say how they genders are affected by Vitiligo Tab!  Hmmmm.  

 Psoriasis Tab was another with a research paper published from the same source (different attributed author) 

 

Again, if you read this paper, it is heavy on waffle and very light on actual research and concrete findings. And again, that paper it is not listed on Guarang's site.

I have mentioned a lot of "tabs" in this post, haven't I?  A lot of products called something-or-other-Tab that claims to treat  well... something-or-other?  Do you want to know how many I found?  Almost 50 (forgot to put clustotab on the list). And I don't think I have found them all. Some have been discontinued (like cardiotab) but have left footprints around the web, showing that they *used* to exist. Oslo Health Solution have around 284 domains registered, so I am guessing there are other um.. products out there that I haven't found yet. Anyhoo,  have a little look at this list. It is in alphabetical order. Check the links and see for yourself if you come to the same conclusion that I did. That these people -Oslo Health Systems (formerly Botanical Sources) are total rip-off artists.

Here it is: The Grand List of Oslo Health System's (and related sites) "completely guaranteed and clinically proven" herbal treatments

Blastotab

Product	Condition	*Formulation #	Price	Duration of supply
Absotab	Skin Abscess	10	$79.99	One month
Amylotab	Cutaneous Amyloidosis.	1	$79.99 (was $290.00)	One month
Anemia Tab	Anemia	Not listed	$89.99	Two month
Archotab	Arachnoid Cysts	2	$79.99	Two month
Ascotab	Ascites	2	$79.99	Two month
Atrophtab	Multiple System Atrophy	2	$79.99	Two month
Ameloblastoma	2	$79.99	Two month
Chordotab	Chordoma	2	$79.99	Two month
Clearotab	Dark Circles and Bags Under Eyes	1	$79.99	One month
Cronkatab	Cronkhite-Canada Syndrome	2	$79.99	Two month
dentotab	Teething!	2	$79.99	Two month
Emphotab	Emphysema	6	$79.99	Two month
Fascitab	Muscular Fasciculation	2	$79.99	Two month
Guillatab	Guillain-Barre Syndrome	1	$79.99	One month
Hornotab	Horner's Syndrome	2	$79.99	Two month
Lennotab	Lenox Gastaut Syndrome	2	$79.99	Two month
Leukotab	Leukemia	13	$79.99	One month
MD Tab	Muscular Dystrophy	1	$79.99	One month
meglatab	Megaloblastic Anemia	2	$79.99	Two month
MG Tab	Myasthenia Gravis.	8	$59.99	Two month
Myeloditab	Myelodysplastic Syndromes	2	$79.99	Two month
Osteotab	osteomyelitis	1	$180	Two month
Parkotab	Parkinson's disease	5	$79.99	Two month
Peniatab	Idiopathic Thrombocytopenic Purpura	3	$160.00	Two month
peptotab	Peptic Ulcer Disease	4	$180.00	Two month
Periotab	Periodontitis	10	$160.00	One month
Peritab	Peripheral Neuropathy.	1	$180	Two Months
Picknotab	Pick's Disease	11	$230.00	One month
pp-tab	Post-polio syndrome	1	$79.99	One month
prismatab	Benign Essential Blepharospasm	2	$79.99	Two month
Pseudotab	Pseudotumor Cerebri	2	$79.99	Two month
Psoriasis tab	Psoriasis	Not listed	$139.99	Six week
Ptosotab	Ptosis of Eyelid	9	$79.99	One month
Raynotab	Raynaud's Disease	1	$79.99	One month
Sarcotab	Soft Tissue Sarcomas	5	$79.99	One month
Sclerotab	Scleroderma	1	$79.99	One month
Sightotab	Age-related Macular Degeneration	9	$79.99	One month
Syrotab	Syringomyelia	1	Now $79.95 (was $230.00)	One month
Thyrotab	Thyroid Nodules	7	$79.99	Two month
Ticknotab	Tick Bite (?)	12	$190.00	Two month
Tonsotab	Enlarged Tonsils	2	$79.99	Two month
Tortitab	Spasmodic Torticollis	2	$79.99	Two month
Trematab	Benign Essential Tremor	2	$79.99	Two month
Vertigo Tab	Vertigo	Not Listed	$49.00	One Month
Vitiligo Tab	Vitiligo	Not Listed
welnatab	Kugelberg-Welander disease (SMA Type III)	2	$79.99	Two month
Wiskotab	Wiskott Aldrich Syndrome	2	$79.99	Two month

*I have figured out that Oslo Health Solutions and their affiliates use around 13 different formulations to "treat"  over 60 different diverse ailments. I will discuss these in Part II.

Stay tuned.

The Importance Of Television

...to me.

I am usually alone when I have a seizure.  There are several reasons for this: They usually happen during the day, when everyone else is at school/work, or late at night. Also, when I feel an impending seizure, I take myself away from people; -usually to my bedroom, where I can let the attack happen in peace without freaking anyone else out.

I know that other people feel very helpless and uncomfortable when I have a seizure. Most epileptics don't get to experience other people's reactions, but I am conscious and aware, which adds an extra layer of discomfort to me -and to everyone. So I prefer to be alone when I seize.

Except I don't really. 

The worst seizures I ever had were in the hospital and right after, when they tried me on a particular drug Lyrica) which made them vastly worse:  I had paralysis and all sorts of Bad Shit happen.  I have having these horrible attacks many times a day. I remember trying to reach out/ communicate to a nurse during an attack, when I could not move, and I could feel myself sinking deeper and deeper into the fit; away from the real world.  I desperately wanted her to hold my hand. I needed some contact with the world. I was afraid of losing it and falling completely into unconsciousness or the seizure or ...whatever. I was afraid of getting lost in some sort of netherworld.  I remember how torn she was. She knew I needed her, and yet she was terrified for me and wanted to get help. In the ends, she left and got help. I wasn't alone for very long but I remember feeling crushed and terrified when she left.

It still happens sometimes during a particularly bad seizure. I can feel like my consciousness is slipping away. That is when I really want someone to be there, to keep my bond with the real world.  I know that "losing my bond with the world" is an irrational fear; that even if I do pass out, I am in little danger and will recover. But irrational or no: it is a real fear nonetheless.

So when I am alone and feel a seizure coming on, I will go to my room and turn on the telly. The light often bothers me, but the background babble of inanity helps. It keeps an auditory channel to the world open for me, in case I feel like I am losing consciousness. It probably makes no difference neurologically speaking, what will happen will happen. But it helps me to feel a little more secure and that's what's important.

I don't really watch that much television (I have it on in the background a lot, but I don't sit and watch it), I could take or leave telly most of the time. But when a seizure encroaches, it is my lifeline to the world.

Limbrel Update (Limbrel Part III)

I should start with the good news first:  My hands have been hurting less recently I have been seizing less. My foot has been less numb, my right leg giving out less, and I have been walking more steadily.

Hands aside, I don't think I have Limbrel to thank for this. Limbrel is not supposed to impact the neurological system. I think the more logical explanation is that I was granted some kids of temporary reprieve, which points (again) to an auto-immune condition such as MS or Lupus, rather than Limbrel as a miracle frug.

So I jumped on the scale this morning. OK I stepped on the scale. It is made of glass, so jumping -even if I felt up to that first thing in the morning -or ever (and I never do) is ill advised. The last number was 5. Actually it was 5.5. So I have gained 9½ lbs. That's the same as 10 lbs as far as I'm concerned.

Ten pounds in a MONTH!  And I'm only 5'3"!  That is a big deal. And not in a good way.

My first thought when I saw that number on the scale... -actually, it was my second thought (my first thought was unprintable -even for me) was how many calories are in these pills???? It was a kneejerk reaction -almost a joke. But then I realized it is a valid question. As I mentioned before,  Limbrel is not a drug. It is technically a medical food product. Well, the FDA has rules about food labelling and nutrition information, right?  So if Limbrel is a food, not a drug, things like calories and percentage daily values should be available, right?  Hmmmm. 

So I had a little look in my favorite place: The Internet.

I found Limbrel's official stance on the subject: It is regulated under the Orphan Drug Act (still love that name!) Amendment 1988, later incorporated into the Nutrition Information Regulation Volume 21 101.9(j)(8)(i)-(v).

That took a little digging, but I found it.

CFR 101.9 basically deals with all that nutrition labeling stuff, you know, the little grids we see on practically everything except lettuce and dog food these days?

which is what I expected.  But Limbrel wiggled out.  Here is the verbiage:

(8) Medical foods as defined in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee(b)(3)). A medical food is a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation. A food is subject to this exemption only if:

(i) It is a specially formulated and processed product (as opposed to a naturally occurring foodstuff used in its natural state) for the partial or exclusive feeding of a patient by means of oral intake or enteral feeding by tube;

(ii) It is intended for the dietary management of a patient who, because of therapeutic or chronic medical needs, has limited or impaired capacity to ingest, digest, absorb, or metabolize ordinary foodstuffs or certain nutrients, or who has other special medically determined nutrient requirements, the dietary management of which cannot be achieved by the modification of the normal diet alone;

(iii) It provides nutritional support specifically modified for the management of the unique nutrient needs that result from the specific disease or condition, as determined by medical evaluation;

(iv) It is intended to be used under medical supervision; and

(v) It is intended only for a patient receiving active and ongoing medical supervision wherein the patient requires medical care on a recurring basis for, among other things, instructions on the use of the medical food.

And that's all very well and good, but here I am gaining ten pounds in a month with no logical reason why. OK I am craving noms like a lolcat on weed, but I totally blame the Limbrel for that. I looked up weight gain as a side effect for Limbrel, and they claim there is none. I Googled 'Limbrel weight gain' and guess where I ended up?  Yes. Back here on OSM. *Sigh.* Limbrel is a very new frug, so not much out there on it yet except the official blurb, so I drew a blank.

Sometimes being a pioneer is bad.

There was a theory that maybe the weight gain was new muscle, but I don't think this is the case. I don't have that many muscles around my midriff, which is where I am gaining most of the weight (unusual for me). It's not muscle. I can feel myself getting fatter. I can feel the difference in my body as I wash or turn in bed.  I am not happy with this. 

And I am not sure what to do? I have been eating more carbs for many months now. In fact, I have been eating mostly carbs. I had already gained some weight using this strategy, but at nothing like the rate of the last month.  High-carb seems to help with the seizures. So I was OK with a little weight gain if it meant a life somewhat closer to normal.

But I cannot keep gaining at this rate. I am out of clothes for one thing. And I hate being this big for another. As I am exercise intolerant, the only thing which works for me is an Atkins-type plan. however eating Atkins makes me very very tired -although if I keep very strictly to it, I will seize less.

I guess I am going to cozy up (again) with my much-thumbed copy of the Atkins book -for now.

I will keep you guys updated.

Invisible Disabilities: Depression.

I have been in a deep but short-lived depression for the past ten days or so. I think it was hormone related in my case.  Because of my funk, I missed some important stuff, like Blogging Against Disablism Day and I am pissed with myself about that. But better late than never! This post is my unofficial contribution.

Of all the invisible disabilities, I think severe depression is probably the most insidious. Because most people think they understand what depression is all about:  Everyone gets sad. Everyone has had loss, disappointments or setbacks in their lives, so that's the same as depression, right? 

Wrong. 

Or they think severe depression is relatively common and easily cured. Just take a happy pill and you will be fine, right?  Well, sometimes medication does help. And sometimes it doesn't.  There are lots of drugs and advertisements for drugs out there (cue sad music: "Where does depression hurt?...) which will sneakily if inadvertently (or deliberately?) back up people's misconceptions.

In my opinion, it is more dangerous to think you understand a condition like depression and to act accordingly, than to admit you really haven't a clue and to question/research the thing. Because if you question, you learn. Whereas if you assume you know... well, chances are probably >90% that you don't know everything and much  of what you do know is probably wrong.

Still, many people think they get it.

Many people are wrong.

Personally, and despite the fact that I am writing this post; I don't fully understand severe depression. I'm not ashamed to admit that. I think people who suffer with severe depression probably don't understand it either. Or they do, but the understanding doesn't help. It is one thing to understand that you are depressed because you are bipolar or have PMDD or low serotonin. But understanding the "why" doesn't make one feel any better, although it may provide some tools or clues about how to address the problem.

Despite all I have been through recently, I don't generally suffer with depression -my serotonin levels are naturally elevated for some unknown reason. This recent funk I suffered (it really does no merit being called a depression. I have looked into the holes into which some of my friends have fallen, and the one I was in was nothing. A mere undulation in the landscape when compared to a real depression) was a little reminder to myself that I am lucky. I would far rather have seizures and some of the shit I have been dealing with that a real-life, full-out, balls-to-the wall depression. I know some people very close to me who have suffered with very severe depression and I have lived with them and talked with them while they went through it.

It is truly awful.

Someone I know who is recovering from a very severe depression said "you have no idea what it is like not to have had a happy thought for 3½ years" That was said perfectly seriously, no exaggeration.

That's right. I have no idea. I tried to picture it in my head. Tried to imagine gleaning no joy from life whatsoever, and yet still getting out of bed everyday. Still eating, shopping; going through the motions. I couldn't. I can't. Even in  some of my darkest hours, say when convulsing violently and being worked on in the ER, I have laughed at a joke a nurse has made (that got me some funny looks, I tell you).

There are many awful aspects to depression. Most people cannot grasp the overwhelmingness (yes it's a word.  Now.) of most of them. Some of the awfulness comes from well-meaning people who don't get it and are trying -in their own ham-fisted way- to help. So they give pep talks. Or they say shit like

1. "why don't you just snap out of it?"
2. "can't you just pull yourself up by your bootstraps and get on with your life?" 
3. "how about counseling?"

...and these are not necessarily bad suggestions in themselves, but the answers usually go something like this:

1. um.. You think I didn't TRY that?  But I can't snap out of depression any more than I could snap out of ...say ...Multiple sclerosis.  Or diabetes. 
2. No. I can't. See answer #1
3. If I could leave the house, counseling would be lovely.  Do shrinks make house calls?

So the well-meaning friends start to back away, feeling helpless and useless and the depressed person, having lost most of their friends, gets even more depressed.

It is a vicious cycle.

Here's the thing with depression. Here is the thing most people don't understand:  When you are depressed, everything is very difficult. Everything is a drain.  Everything uses up "spoons" (which may be few to begin with).

Everything.

• It is difficult to drag yourself out of bed.
• It is overwhelming to shower.
• Making decisions -even simple ones like what to have for breakfast can be anxiety riddled
• Simple tasks, with multiple steps,  like cooking a meal or doing a couple of loads of laundry can take all of one's concentration and therefore, one's strength and be overwhelming.
• For some: There is no happiness in the world. it is like having your own personal Dementor, who follows you around everywhere you go, who thankfully, doesn't effect those with whom you come in contact.
• Paperwork: Forget it. It just isn't happening. Waaaaay too overwhelming...

Most depressives are engaged in a massive struggle against depression all day, every day. This struggle is exhausting. It is like trying to swim in a giant vat of molasses, with more molasses pouring down on your head each time you break surface. You keep struggling just to get your head clear. Forget the rest of you. You are struggling just to breathe.

Other people can't see the molasses. 

They just see a person going nowhere, struggling and depressed, for no particular reason.

Depression is very isolating for two main reasons:

• Depressives tend not to reach or to people for various reasons: They may not want to get the other person down, They may not be able to get it together to go out, or to pick up the phone or even send an e-mail or text. They may fear rejection.
• People tend not to reach out to depressives because they may think that the depressed person has chosen their isolation and doesn't want to see anyone. Or they may think there is nothing to say -on either side. They may feel that the depressed person brings them down (and it may be true).

But one thing I have learned about depressives from people in my own life is to keep contact with  them.  Keep the door and lines of communication open. Arrange a regular activity, like to drop by once a week and watch a DVD together -something not taxing. It will help. maybe not immediately but it will.

The best way to help a depressed person is to accept that they are depressed. You may not understand it. Hell, they may not understand it, but if you accept that this is how things are right now, stop trying to change them back to a non depressed state, and accept who they are NOW, things will be a lot easier for both of you.