One Sick Mother

Other People's Shoes

I think generally,  people understand that most people with an Autistic Spectrum Disorder (ASD) cannot (easily) put themselves in "another person's shoes". That is, they have a hard time understanding what that other person may be feeling or thinking and how things may be for that person. Many cannot even conceive of "walking a mile in your shoes".

 

They are stuck in their own shoes

My son Joe, who is (high functioning) Autistic, would probably pass by someone who had collapsed on the street, thinking that person maybe chose to lay down right then and there; and if that is the case, who is he to say anything?  An Autie such as Joe doesn't tend to factor in things like "normal behaviour" or "likelihood" into these scenarios, because to him, NTs are all so weird anyway. There is no telling what we might do! So who is he to question?  However, if I explained to Joe that the person might be in trouble or distress, he would move Heaven and Earth to help them if he could.

Perspective is a funny thing.

Of course, most NT people in the same scenario would instantly figure there is something wrong -even if the person had chosen to lay down right there! (OK the odds are that they didn't. But I'm just saying...)

Most of us non-autistic people, think we have good... whateveritis you want to call it: Theory of mind, empathy, perspective-taking. Most of us think we can place ourselves in another person's shoes and understand where they are coming from.

Sometimes we can. Sometimes we can't.

I have been thinking about this a lot recently. One of the comments on the piece I wrote about Caster Semenya was written by a man trapped in a woman's body. I tried to imagine what that might be like (and I tried to imagine if I were trapped in a man's body).  I couldn't do it. 

I can only imagine my body: My "shoes".

I didn't realize I was quite so unimaginative until now. Now, I know that some experiences cannot be imagined or described, but I thought I could manage simple enough ones like "male" and "female". 

But I can't because they are not that simple at all. At least not for humans.

I remember years ago, reading an interview with Stevie Wonder and he; although born blind, was saying that he does "see" things in his head. Of course he cannot describe them to anyone, having no knowledge of a sighted person's concept of (say) "color"; indeed, having no sight references at all. So we cannot know what he sees. I do wonder if he shares it, wittingly or unwittingly? I wonder if his vision colors (pun intended) his music?

Interesting, no?

Recently, I watched the season premier of Season 6 of "So You Think You Can Dance", which is one of my favorite shows. Allison Becker, A deaf dancer auditioned in Phoenix. She was great.  What got me was that the judges were so flabbergasted that she was great. They danced (pun intended) around the core issue until Mia Michaels finally came out and said in a somewhat roundabout way what everybody else was thinking (I'm paraphrasing here): 

"Why do you (how can you) dance when you can't hear the music?"

The answer was simple.

"I hear it differently"

Then Nigel was waffling on about wanting to see how she would do in choreography and again she just said

"I'll be great"

And she was. She killed the choreography. Here is a link to the video.

(And although somewhat off topic, I have to give a shout-out to the same-sex ballroom couple, whose video is here.)

 

There are some shoes we cannot occupy. Some scenarios we cannot understand, no matter how we try. We cannot understand how a deaf woman hears or a blind man sees. We cannot fully get what it is like to have Autism, ADHD, Dyxlexia or OCD. We can try and understand it on an intellectual level, but we cannot truly get it.

In a funny way, I thnk Joe has an advantage in this over me. He KNOWS that he doesn't get other people. Therefore instead of trying to understand them, he usually just accepts them. He has no problem at all with the concept of a deaf dancer. She's deaf, she dances: So what?

Whereas I, who consider myself an empathetic person, find myself trying to understand instead of simply accepting. And then I realized that I have been guilty of "Murakab"  in my attempt to teach Joe about putting yourself in other people's shoes. I had assumed that I could always do it, and that one always should do it. I didn't fully realize that there are times when one CAN'T do it. I didn't fully understand that: Hence murakab, which means 'complex ignorance"; I didn't know that I didn't know (as opposed to simple ignorance, where you know you don't know).

I have now realized that there are times when Joe's approach is better than mine. There are times when I cannot -simply CANNOT place myself in another person's shoes. That does not mean their experience is invalid (not that I ever thought it was). It just means that instead of trying to project myself onto them, I will choose to accept them on blind faith, like Joe does.  That isn't easy for me.

Having just said that, however,  if I ever do see a person collapsed on the street, I will not assume they chose to lie down and take a nap.

(All the art in this piece is by Renee Magritte, 1898-1967)

Why I Care

As most people who have read this site for more than three seconds will know, I have directed a lot of my time and energy to tracking down and outing scammers.  My ultimate goal is to shut these guys down, which is proving a lot more difficult than it should.

Why is it so hard?

Multiple reasons. For one, the Internet isn't a place. So who has jurisdiction on the Internet?

No-one.

Different countries have jurisdiction over their own "bit" of the Internet (and their own rules regarding it). There is some international co-operation regarding Internet use for very serious stuff, such as child pornography rings or human / human organ trafficking.  However, something as relatively "minor" as healthcare scams is way down the list of priorities for these guys.

So we look at the local enforcers.  Let's imagine a hypothetical situation:

Say you live in New Jersey and buy a product from a company that claims to be based in Norway. The product never arrives or doesn't work. Who do you contact?  The company. If they don't respond, to whom do you then turn? The FDA?  They won't get you your money back and they don't regulate supplements. Also, the company was based in Norway, right?  So the FDA will probably tell you to contact whoever in Norway regulates these guys.

Buy you don't happen speak or write Norwegian.

Nonetheless, you persevere and contact the Norwegian peeps, who do have English speakers on hand. They do a pretty rudimentary investigation on your missing $90, which is small potatoes to them, tell you that no such company as Oslo Health Solutions is registered in Norway, regardless what the internet says. But a search they did on the domain registration points to a US Domain site. You need to contact the US authorities.

You contact the US authorities with the domain information you got from the Norwegian folks. The US people check and they say the the US domain registration is a holding site, masking the real domain (many registration sites will offer this service). However, because the company who scammed you is based in Norway (or maybe Pakistan, from whence the dodgy product arrived), but not in the US, they have no grounds on which to investigate the real domain information. You need to go back to the Norwegians.

So you contact the Norwegians (again) and they insist that the domain company is a US one, and they have no jurisdiction. You need to contact the US authorities.

And so you are stuck.  You just went in a great big circle to end up precisely nowhere. For someone with a chronic health condition, this is probably familiar territory after dealing with the medical world.  But "familiar" does not mean "good".

So to whom do you turn?  Your credit card company. They are global too, and they will fight to get you back your money.

And so you eventually get back your money and you go on your way. 

However, no complaint has been registered that stuck, so the scammers are free to defraud indefinitely. 

But OSM. I hear you say  The imaginary person got their money back. So why do you care about all of this?

I care because the primary issue here isn't about the money. It's about the exploitation and mistreatment of sick people.

I care because people have their hopes raised (and you know how I feel about hope) and then dashed by callous predatory subhumans.

I care because if I don't care, and don't try to do something, it won't stop. More and more people will have their hopes raised and dashed.

I care because someone is profiting from their pain and desperation.

I care because the longer I do this, the less these medical conditions are lists of unpronounceable words, and the more they are associated with real people with real lives and families. Like:

• My friend, whose son has Muscular Dystrophy
• My stepmother, who has Rheumatoid Arthritis
• Stephen Deal, who also has MD
• Elizabeth, who has MSA
• Blake, who has SMA
• Janice who suffers very badly with Syringomyelia
• My friend Betsy who had Pseudotumor Cerebri
• The woman from whom we bought this house, who had Parkinson's Disease
• My friend's ex, who had Bell's Palsy
• Another friend's child, who was born with severe Cerebral Palsy and requires 24/7 care
• Another friend who has alopcea, which has impacted his self-esteem for years
• My great-aunt Nora, who went blind from Glaucoma

...and then all the people who have contacted me because they were scammed or almost scammed:

• A lady  in England with painful ganglion
• A man whose girlfriend has been blinded by Retinitis Pigmentosa
• A woman in Australia who has Melasma
• A man in Europe whose girlfriend has narcolepsy, and who has bad side effects from the conventional drugs used to treat it
• A man with Myasthenia Gravis in the States
• a very nice person -not sure wherefrom, who e-mailed me to ask me if I had any information on Scleroderma treatment, as the one product which had seemed to show promise had been outed as a scam by me.

There are many, many more.

So to me now, when I see these scams operating, I don't see words on a screen. I see my stepmother's hands, Or Elizabeth's vivid imagery. I see my friend pushing her son in a wheelchair, turning away from the Memorial Day parade because she cannot look at so many able-bodied kids parading down the main drag, while hers is the only one in town in a wheelchair.

I see evil, money-grubbing, bastards preying on and playing with my friends.

Behind these long disease names and behind every one of the links, there are real people with real challenges, who have to face each day and carry on. I care about that. I care about them, which is why I won't rest until the scammers are shut down,

The really sad thing is this: 

I seem to be the only one who cares this much.

SPAH: The Medical Scam Clearinghouse

(This is the fifth -but most important- part of a series. Here are part 1, part 2, part 3, part 4)

Let's just imagine that you have devised a few bogus potions -so-called herbal supplements as  "guaranteed treatment" for almost 300 diseases and conditions from dandruff to cancer.  And let's just say that too many people are skeptical or leery so maybe you make some money, but not quite the millions you expected.  And suppose this isn't quite good enough for you?  You still want to sell MORE snakeoil and rake in more dollars from unsuspecting sick people. But finding new diseases to claim to treat/cure is difficult, because eventually, someone twigs and puts out the alert.  How do you one-up yourself in those circumstances, and market your snakeoil to a wider population?

Simple:  You create a bogus 'society', have it do comparisons of your bogus product against one or two other bogus products with a recommendation to always buy your product.  Here's the kicker:  The other bogus products are also owned by you, but sold by a different set of bogus websites.  So the bogus society can recommend any one of them, and you get the cash anyway.

Yes. You create two or three so called 'guaranteed treatments' for the SAME condition, market each one under a different bogus website and then set up a bogus "independent institute" to compare them all against each other, and then to "objectively" recommend one of them!

It's pure genius.   GENIUS!

Because no matter which bogus product the unsuspecting sick person chooses through your bogus "research institute" YOU get the (real) money.  Because let's face it: in this scenario, the only thing that is real is the money people lose.  And maybe they lose real time and real health.  While the owners of the bogus products and websites are laughing all the way to the (real) bank.

It's a rather sickening kind of genius, actually.  Completely Evil Genius, in fact.  I think I have found the Frankenstein's monster of the Internet..

Remember how I said that Oslo health Solutions had over 280 websites registered, but I had only found about 60 of them?  Well, I think  I have found the other 220.  And 295 from another site.  And maybe another few hundred elsewhere. I physically can't count them all!   

So here is how it works: Let's say that I am looking for a cure for Syringomyelia (which is where I started with all this stuff, let's stick with what we know, here). Syringomyelia (SM)  is a potentially devastating and excrutiatingly painful  degenerative condition of the spinal cord.  It is really difficult to treat, and many myths abound, which means that many doctors "don't believe in" the pain of it. So many people with SM have a hard time finding real help. Or they may not have insurance. So say I am in this position and I find this site, run by The Society for the Promotion of Alternative Health (SPAH -and I don't think those particular initials are an accident BTW), claiming to compare three available natural alternatives. 

So we read this, and my options are:

Omiglatex, which is marketed by Botanical Sources (BS). Omiglatex (and all the Botanical Sources products that I have checked) tries to claim a connection with the Mayo Clinic, just because Mayo once said something like plants are a good source of drugs (Duh! Most commercial drugs come from plants!). But other than that, BS makes few direct claims of its own, except for a money back guarantee and 100% natural ingredients. 

Don't take our word for it and use Omiglatex for a few days. You will begin to experience incremental long term changes. If you don't, we pledge to refund you in full, including delivery charges under our full no-questions-asked refund policy. This guarantee is valid for 60 days from the date of purchase allowing enough time for you to experience results with Omiglatex.

That  sounds stunningly familiar, doesnt' it?

I love the ingredients list for Omiglatex, which include our old friend Nux Vomica (better known as Strychnine  or "rat poison" here in the States); Coral calcium; Indian Rennett, a herb which is used to coagulate  ...stuff  and wattle bark, an old Indian herbal remedy for premature ejaculation

What does all this have to do with treating brain fog, constant burning nerve pain, paralysis and incontinence?  Dunno.  I suspect nothing at all.

So I checked out the next option on the list: Syrotab. 

Yes. Our old friend from Oslo Health Solutions.  

Nuff said about that. It's a proven scam...

 

 Maybe the third option will be the charm?  Right?

Mignitin seems to be a little different. 

It is from Berlin Homeo  Products in ...well, Berlin and is a hemopathic treatment for Syringomyelia   "The amazing 100% guaranteed treatment for Syringomyelia that is bound to leave you amazed!"  (It surely will!  You will be amazed that you paid money for this shite!)

 

Ant they have testimonials! 

 "Your organization is very professional and thank you for the continued support. This is the first time I have been introduced to homeopathy. I never thought it would work so well." - Betty - Florida 

"I can't thank you enough" - Mark - NY

"All I can say is amazing! I was about to give up after trying so many products." - Jessie - California

AND they accept PayPal!  Aren't they nice?

I'm sot too sure about the color scheme, or the picture of something that looks like the bastard love child between a feather duster and a lichen.

Mignitin lists its ingredients too.  You know, I have to LOVE these people for their consistency. They may change the colors and pictures around, but they always have almost exactly the same layout and links and very similar wording.

Here are the ingredients

Ingredient Name Dilution

Sepia D3+30C
Aesculus D1+10C
Cimicifug D1+10C
Calc fluor D6+60C
Baryta carb D6+60C
Rhus tox D1+10C
Kali carb D1+100C

Sepia =  cuttlefish ink

Aesculus = california horse-chestnut

Cimicifug... I think this is Cimicifuga Racemosa, which is Black Cohosh and sometimes used to treat menopause and some muscle (not nerve) pain

Calc fluor  = calcium flouride. -Used for "hard, stony glands" and a host of other stuff in the Quack Bible, my favorite being "threatened apoplexy"

Baryta Carb = Baryta Carbonica  "This remedy brings aid to scrofulous children, especially if they are backward mentally and physically, are dwarfish, do not grow and develop, have scrofulous ophthalmia, swollen abdomen, take cold easily, and then Always have swollen tonsils. Persons subject to quinsy... (WTF is quinsy?  Ah.  It is Peritonsillar abscess (PTA).  I prefer quinsy)...

Rhus tox = Rhus toxicodendron AKA poison ivy!

"Mignitin's composition is 100% safe and all its ingredients are purely natural and free from any side effects."

Kali carb  = Kali Carbonicum  and... oh hey!  I love this  I found it on a homeopathic site:  patient can broadly be described as compulsive - rigidly adhering to a code of ethics and rules. It is very difficult for the patient to express feelings and he exercises strong control over his emotions. Duty is one of the most important concepts for the Kali Carbonicum constitutional type. He will not park in a yellow zone. He will always return to a shop to give back change if he was given too much. He sees things in black and white. The patient is often very stoical. He neither complains about (nor notices) the stress he is under until the situation is very severe indeed. Things outside his control are very upsetting.

 That sounds rather like a description of an Aspie to me...

 ...but NOTHING like a Syringomyelia patient (unless its an Aspie with syringomyelia!).

 

So there you have it! Three Syringomyelia remedies, all bogus.

 

Bus OSM, I hear you say,  Maybe it is a co-incidence?  Maybe only the Syringomyelia treatments are bogus. Because I am so desperate for help, I want to believe! Well, I am nothing if not thorough when it comes to this stuff, so I checked out options for a few more conditions.

Leukemia i.e. cancer of the blood -all types apparently treated by one product from each of these companies.

Leukotab - from Oslo Health Solutions

Kemitin - from Berlin Homeo Products (The amazing 100% guaranteed treatment for Leukemia that is bound to leave you amazed!  Yeah. Amazed you're DEAD!)

 

Multiple System Atrophy -a gradual and fatal shutdown of the body's autonomic system. Usually fatal within two years of diagnosis.

Alpharax - from Botanical sources

Atrotab - from Olso Health Solutio...  ...uh-OH!  Typo!  Atrotab is actually (allegedly) for optic atrophy. Atrophtab  is for MSA.  That's a big mistake if you are running a legitimate service, but a simple one if you are running a SCAM!  Those two actually use different formulations, you see. Like that makes a difference!  I'm sure they are both completely bogus.

Porphotin (from Berlin Homeo Products)  -contains Arsenic.  Nice!

 

Parkinson's Disease

Niprotax -from Botanical sources

Parkotab -from Oslo Health Solutions

Parkotin -from Berlin Homeo Products (site currently unavailable)

 

Musclar Dystropy

Dystratax (from Botanical Sources)

MD-tab (from Oslo Health Solutions)

Laritin  from Berlin Homeo Products

 

Do you see the pattern?  A product that end in "x" from Botanical Sources, then a product that ends in "tab" from Oslo Health Solutions, and lastly a product that ends in "tin" from Berlin Homeo products.  The full list of SPAH websites and the diseases for which they claim to present "treatment options" is below. There are 295 of them.

295 x 2 or 3 (we'll call it 2½) = approximately 737 bogus products.  And I thought 60 was a lot!

SPAH claims to have no affiliation with the products mentioned.  Of course they claim that! This is perfectly in keeping with Rule #1 of scams: Lie Big.

I did some searches on Botanical Sources and on Berlin Homeo Products. I couldn't find much about them.  They claim to be based out of Rome and Berlin.

Here is the contact info, which is probably meaningless.

Botanical Sources
Via Canova 24, Suite # NR 320
Roma 00186
Italy

contact@botanical-sources.com

The Berlin Homeo Products (BHP) stuff I know even less about. 

Berlin Homeo Products
Markgrafenstr. 56, Suite 110
Berlin, 10117
Germany
4487102

info@berlin-homeo.com

The websites I checked are registered to Botanical Sources or Berlin Homeo Products as appropriate.  But all of their sites that I have checked look identical for each organization. The BHP sites even have the same picture of the feather duster/ lichen cross, and the exact same testimonials from the same people, regardless of the disease claimed to treat. Did it just happen that 200+ people called "Mark" in NY, 200+ called "Jessie" in CA and 200+ people called Betty in Florida just happened to contact them and say the exact same thing about 200+ different products?

Ummm-hmmm.

 

So then I searched on SPAH.  The websites I checked are owned by MAK-International. Here is their home page. Notice anything?

Yep. You immediately notice that the design is about identical to all the Berlin Homeo Products sites

 ...but hold on second...  That woman looks like... she IS!  It's my old friend: Vacant Biracial woman from most of the Oslo Health Solutions sites!

Not only that, she is right there with her buddies, Mr Serious and Mr Trying to look Sincere (who is still trying to look sincere!).  They are the same people!  Wow!  What a total co-incidence that MAK International, Oslo Health Solutions and Berlin Homeo Products use exactly the same web designers or models.

Incredible. 

Literally.

So who is MAK International?  I can't find any incorporation information, but is seems to be run by two brothers (or cousins) of (I figure) Pakistani descent who were born and educated in Manchester, England (remember my theory that it was probably a couple of young techies?  It appears I was correct).   MAK International is (officially) run out of Pakistan. If I am right, that they are Pakistani- English, they are perfectly positioned to run a scam of this kind. Born in the UK, they would have full EU citizen status, able to travel or open offices anywhere in the EU.  Having Pakistani citizenship, presumably from their parents, would give them access to cheap labor and herbal crap and enable them to set up office in Pakistan.

Here is their information (I got it off their website, so it is public domain.)

Name: Mustafa Arif
Position: CEO
Born: Manchester, UK (1979)
Qualifications:

BENG Mechanical Engineering
Imperial College, London
CCNA - Cisco - year 2000

Responsibilities:

Implementing the marketing solutions devised for clients.

Experience:

Mustafa has been involved in internet marketing for the last eight years since 1998. He has seen the market evolve over the years.

Core Expertise:

• Search Engine Promotion
• Link Building
• Paid Inclusions
• CPC Marketing
• Affiliate Marketing
• Ad Networking

Name: Kashif  Arif
Position: Customer Liaison Officer
Born: Manchester, UK (1978)

Qualifications:

BENG Electronic Systems Engineering
UMIST, Manchester

Responsibilities:

Liaising with clients providing them pre-sales support. Understanding the client's needs and devising marketing plans according to the client's business type.

Experience:

Kashif held a similar position in Pace Technologies in Cambridge, one of the world's largest producers of digital satellite decoding devices. He was responsible for negotiating contracts for Pace's clients all over the world.

Core Expertise:

• Negotiating contracts
• Devising marketing plans in lieu of the client's needs and budget

 You may contact us via email, telephone, mail and in person.

Email

Sales Enquiries: enquiries@mak-international.com

Existing Clients: support@mak-international.com

Office Address

2nd Floor - 33 Block Z (Commercial)
Defense Housing Authority (DHA)
Lahore 54792
Pakistan

Phone

0092-42-5749903
0092-300-4007904

Fax

0092-42-5749902

While I was researching all this, I must say the Botanical Sources link (or lack thereof) was bothering me. I was having a hard time directly connecting BS with the other three. But something was bugging me: something that I knew was there, but I was missing. Then I realized what it was: 

The logos.

More specifically, the little leafy or swirly things that is used in every logo.  There are always two, usually in complementary tones, and they usually look like leaves or a Pieces or ying/yang symbol.  Check out the leafy things and the "product shots" used by Botanical Sources and OSH

Botanical Sources

 

 

 

 

And these from Oslo Health Solutions.  The are not alike at all. Are they?

 

 

  

 

And we have some more from OSH, this time the "Pisces" version..

 

I like how Ejucatab has both 'Pices' and 'Leafy thingys'

Berlin Homeo Products (BHP) change the pattern a little. More abstract leaves and this time they change in size, not colour. (way to mix it up!)

And of course, MAK International:

 

 

   

 

You know, I found this little dot thingy on the corner of all the MAK International pages, but I don't have the right skills/software to blow it up properly. It looks intriguingly like it could be an amalgam of some of the other logos.  The colors are certainly correct.

If this turns out to be the case, that wouldn't surprise me in the least. These people seem to like their little inside jokes:  "Murakab" -which is an Islamic term meaning "complex ignorance" as an ingredient in many of their products; The fact that  initials of Society for the Promotion of Alternative Health make the word "SPAH" (think English accent) and the wee dot thingy all point to a rather ignoble disregard for their target market: i.e. sick people and their families.

The funniest joke of all is this: The Society for the Promotion of Alternative Health, -although is doesn't claim directly to be a registered charity or non-profit agency  ...ACCEPTS DONATIONS

"SPAH is a donor based organization. It accepts donations from only two sources; volunteering professionals who dedicate their time to the activities of SPAH and secondly from individuals who out of their own will want to donate to SPAH's cause as a result of benefiting from of its sponsored initiatives. It is not possible for us to accept any other kind of donations in order to ensure minimal outside influence on the organization's work."

Yes, they will take your money to further their (ig)noble cause (i.e. ripping off sick people). Except  they won't accept it if you are a corporation or organization. I figure because a corporation or organization will report such a donation on their taxes.  Too many questions might be asked then.  There's your "minimal outside influence on the organization's work".  They don't want Uncle Sam, Mother England or ...Auntie(?) Pakistan asking too many questions.

Below is the (new) Grand List of conditions these guys claim to treat. it is rather an eye-opener. If you have any of the conditions below, or know anyone who has them, please spread the word about this dreadful scam. I am not saying this to get more hits on OSM. In fact, I didn't even want to publish this myself (I have some concerns about potential recriminations from the Arif boys).  But the one person I know in De Meeja hasn't gotten back to me, and I feel the word needs to get out there. People need to be protected. Please post the link to this story to listservs, forums, messageboards or groups for any of these diseases that you might belong to. A scam only works when it is secret. If we generate enough exposure about MAK International, we can be sure they can profit no more from the misery of others.

I warn you to be sure your anti-virus and anti spyware software is all up-to-date before you click on any of the links because (this was taken from one of the SPAH sites)

Passive Information Collection

As you navigate through a Web site, certain information can be passively collected (that is, gathered without your actively providing the information) using various technologies and means, such as Internet Protocol addresses, cookies, Internet tags, and navigational data collection. We use Internet Protocol (IP) addresses on this site. An IP Address is a number assigned to your computer by your Internet service provider so you can access the Internet and is generally considered to be non-personally identifiable information, because in most cases an IP address is dynamic (changing each time you connect to the Internet), rather than static (unique to a particular user's computer). We use your IP address to diagnose problems with our server, report aggregate information, determine the fastest route for your computer to use in connecting to our site, and administer and improve the site

So having been fairly warned, please do check this out. it is quite mind-boggling.

Abdominal Adhesions	http://adhesions-options.com
Acanthosis Nigricans	http://acanthosisnigricans-options.com
Achlasia	http://achalasia-options.com
Acrocyanosis	http://acrocyanosis-options.com
Acute Broncitis	http://acutebronchitis-options.com
Adenopathy	http://adenopathy-options.com
Adhd	http://adhd-options.com
Adrenoleukodystrophy	http://adrenoleukodystrophy-options.com
Agalactia	http://agalactia-options.com
Age-Related Macular Degeneration	http://agesight-options.com
Alkaptonuria	http://alkaptonuria-options.com
Allergic rhinitis	http://allergicrhinitis-options.com
Alopecia	http://alopecia-options.com
ameloblastoma	http://ameloblastoma-options.com
Amenorrhea	http://amenorrhea-options.com
Amlyoidosis	http://amyloidosis-options.com
Angina	http://angina-options.com
Anginoedema	http://angioedema-options.com
Angionma	http://angioma-options.com
Anklyosing Spondylitis	http://ankylosingspondylitis-options.com
Anorectal Fistula	http://fistula-options.com
Antiphospholipid Syndrome	http://antiphospholipid-options.com
Aquagenic Pruritus	http://pruritus-options.com
Arachnoid cysts	http://arachnoidcysts-options.com
Artery stenosis	http://arterystenosis-options.com
Ascites	http://ascites-options.com
Asthma	http://asthma-options.com
Atelectasis	http://atelectasis-options.com
Atherosclerosis	http://atherosclerosis-options.com
Athlete's foot	http://athletesfoot-options.com
Atrialfibrillation	http://atrialfibrillation-options.com
Autoimmune Hemolytic Anemia	http://hemolyticanemia-options.com
Azospermia	http://azospermia.com
Behcet's Syndrome	http://behcets-options.com
Bell's palsy	http://bellspalsy-options.com
Benign essential blaphasospasm	http://benignessentialblepharospasm.com
Benign essential tremor	http://benignessentialtremor-options.com
Blepharitis	http://blepharitis-options.com
Blisters	http://blisters-options.com
Blood in the Semen	http://semenblood-options.com
Bone and Joint Tuberculosis	http://bonetb-options.com
Bone Degeneration	http://bonedegeneration.com
Bowen's Disease	http://bowensdisease-options.com
Bradycardia	http://bradycardia-options.com
Breath odor	http://breathodor-options.com
Bromhidrosis	http://bromhidrosis-options.com
Bronchiectasis	http://bronchiectasis-options.com
Bulima	http://bulimia-options.com
Bullous pemphigoid	http://bullouspemphigoid-options.com
Burning mouth syndrome	http://burningmouth-options.com/
Canker sore	http://cankersore-options.com
Carbunkles	http://carbuncles-options.com
Carcinoid syndrome	http://carcinoid-options.com
Cardiomyopathy	http://cardiomyopathy-options.com
Cataract	http://cataract-options.com
Cellulitis	http://cellulitis-options.com
Cerebal palsy	http://cerebralpalsy-options.com
CerebraxReiter's Syndrome	http://reiterssyndrome-options.com
Cervical spine ( i.e. "neck"!)	http://cervicalspine-options.com
Cervical Spondylosis	http://spondylosis-options.com
Cervicitis	http://cervicitis-options.com
Cheilitis	http://cheilitis-options.com
Chloracne	http://chloracne-options.com
Chondromalacia Patellae	http://chondromalacia-options.com
Chordoma	http://chordoma-options.com
Cluster Headache	http://clusterheadache-options.com
Condyloma	http://condyloma-options.com
Congestive Heart Failure	http://congestiveheart-options.com
Constipation	http://constipation-options.com
Cronkhite-Canada syndrome	http://cronkhitecanada.com
Cushings disease	http://cushings-options.com
Cyclic Vomiting Syndrome	http://cyclicvomiting-options.com
Dandruff	http://dandruff-options.com
Dark Circles	http://eyebags-options.com
Deep Venous Thrombosis	http://venousthrombosis-options.com
Delayed Ejaculation	http://delayedejaculation-options.com
Dequervains tendinitis	http://dequervainstendinitis-options
Dermatomyositis	http://dermatomyositis-options.com
Diabetes Insipidus	http://diabetes-options.com
Diverticular Disease	http://diverticular-options.com
Drematofibroma	http://dermatofibroma-options.com
Drooling	http://drooling-options.com
Drug Induced Liver Disease	http://liverdisease-options.com
Dysfunctional Uterine Bleeding	http://uterinebleeding-options.com
Dyshidrosis	http://dyshidrosis-options.com
Dyspepsia	http://dyspepsia-options.com
Eczema	http://eczema-options.com
Ehlers-Danlos syndrome (EDS)	http://ehlersdanlos-options.com
emphysema	http://emphysema-options.com
Enlarged Tonsils	http://enlargedtonsils-options.com
Eosinophilia	http://eosinophilia-options.com
Epididymitis	http://epididymitis-options.com
Erysipelas	http://erysipelas-options.com
Erythema multiforme	http://erythemamultiforme-options.com
Erythroderma	http://erythroderma-options.com
Erythromelalgia	http://erythromelalgia-options.com
Eyelid ptosis	http://eyelidptosis-options.com
Fahr's Disease	http://fahrsdisease-options.com
Fatty liver	http://fattyliver-options.com
Fibroadenoma of Breast	http://breastfibroadenoma-options.com
Fibrocystic Breast Disease	http://fibrocysticbreast-options.com
Flatulence	http://flatulence-options.com
Folliculitis	http://folliculitis-options.com
Formaldehyde poisoning	http://formaldehydepoisoning-options.com
Friedreich's Ataxia	http://ataxia-options.com
Frostbite	http://frostbite-options.com
Frozen shoulder	http://frozenshoulder-options.com
Ganglion cyst	http://ganglion-options.com
Gastritis	http://gastritis-options.com
Gastro paresis	http://gastroparesis-options.com
Gilbert's Syndrome	http://gilbertsyndrome-options.com
Gingivitis	http://gingivitis-options.com
Glaucoma	http://glaucoma-options.com
Globus hystericus	http://globushystericus-options.com
Glossopharyngeal Neuralgia	http://glossopharyngealneuralgia-options.com
Gonorrhea	http://gonorrhea-options.com/index.html
Granuloma annulare	http://granulomaannulare-options.com
Grave's disease	http://gravesdisease-options.com
Grover's Disease	http://grovers-options.com/index.html
Guillain-Barre Syndrome	http://guillainbarre-options.com
gynecomastia	http://gynecomastia-options.com
Hand tremors	http://handtremors-options.com
Hearing loss	http://hearingloss-options.com
Hemmorhoids (what, no Pileen?)	http://hemorrhoids-options.com
Hepatic Hemangioma	http://hemangioma-options.com
Hereditary Fructose Intolerence	http://fructoseintolerance-options.com
Hernias	http://hernias-options.com
Herpes Simplex and Zoster	http://herpes-options.com
Herpetiform dermatitis	http://herpetiformisdermatitis-options.com
Hidradenitis Suppurativa	http://hidradenitis-options.com
Hives	http://hives-options.com
Hookworm	http://hookworm-options.com
Horner's Syndrome	http://hornerssyndrome-options.com
Hydrocele	http://hydrocele-options.com
hydrocephalus	http://hydrocephalus-options.com
Hydronephrosis	http://hydronephrosis-options.com
Hyperhidrosis	http://hyperhidrosis-options.com
Hypertension	http://hypertension-options.com
Hypertensive retinopathy	http://retinopathy-options.com
Hypotension	http://hypotension-options.com
Hysteria	http://hysteria-options.com
Ichthyosis	http://ichthyosis-options.com
Idiopathic Thrombocytopenic Purpura	http://purpura-options.com
Iga Nephropathy	http://iganephropathy-options.com
Impetigo	http://impetigo-options.com
Inclusion body myositis (IBM)	http://myositis-options.com
Intrahepatic Cholestasis of Pregnancy	http://cholestasis-options.com
Irritable Bowel Syndrome	http://irritablebowel-options.com
Jock itch	http://jockitch-options.com
Keloids	http://keloids-options.com
Keratoacanthoma	http://keratoacanthoma-options.com
Leg ulcers	http://legulcers-options.com
Lennox Gastaut Syndrome	http://lennoxgastaut-options.com
Leukemia	http://leukemia-options.com
Lichen Planus	http://lichenplanus-options.com
Lichen Simplex Chronicus	http://lichensimplex-options.com
Lipoma	http://lipoma-options.com
Liver cirrhosis	http://livercirrhosis-options.com
Liver cyst	http://livercyst-options.com
Low back pain	http://lowbackpain-options.com
Lymphadenitis	http://lymphadenitis-options.com
Malabsorption	http://malabsorption-options.com
Male Infertility	http://maleinfertility-options.com
Mastitis	http://mastitis-options.com
Melasma	http://melasma-options.com
Meniere's Disease	http://menieres-options.com
Menorrhagia	http://menorrhagia-options.com
Mental Retardation (Grrrrr)	http://mentalretardation-options.com
Molluscum Contagiosum	http://molluscum-options.com
Motor Neuron Disease	http://motorneuron-options.com
Multiple System Athrophy	http://multiplesystematrophy-options.com
Muscular Dystrophy	http://musculardystrophy-options.com
Muscular Fasciculation	http://muscularfasciculation.com
Myasthenia Gravis	http://myastheniagravis-options.com
Myelitis	http://myelitis-options.com
Myocarditis	http://myocarditis-options.com
Myopic degeneration	http://myopicdegeneration-options.com
Narcolepsy	http://narcolepsy-options.com
Nasal Polyps (Note Correct Spelling)	http://nasalpolypus.com
Nephrotic Syndrome	http://nephrotic-options.com
neutropenia	http://neutropenia-options.com
Obesity	http://obesity-options.com
Optic atrophy	http://opticatrophy-options.com
Osteo necrosis	http://osteonecrosis-options.com
Osteomyelitis	http://osteomyelitis-options.com
Osteoporosis	http://osteoporosis-options.com
Otitis media	http://otitismedia-options.com
Pancreatitis	http://pancreatitis-options.com
Papular Urtucaria	http://papularurticaria-options.com
Parkinsonism	http://parkinsonism-options.com
Paroxysmal Tachycardia	http://paroxysmaltachycardia-options.com
Pelvic Inflammatory Disease	http://pelvicinflammatory-options.com
Pemphigus	http://pemphigus-options.com
penumothorax	http://pneumothorax-options.com
Peptic ulcer	http://pepticulcer-options.com
Periodontitis	http://periodontitis-options.com
Peripheral Neuropathy	http://peripheralneuropathy-options.com
Peyronie's Disease	http://peyronies-options.com
Pharangitis	http://pharyngitis-options.com
photodermatitis	http://photodermatitis-options.com
Photosensitivity	http://photosensitivity-options.com
Pick's Disease	http://picksdisease-options.com
Pityriasis Alba	http://pityriasis-options.com
Pityriasis Roseca	http://pityriasisrosea-options.com
Pityriasis Rubra	http://pityriasisrubra-options.com
Pneumothorax	http://pneumothorax-options.com
Polycystic Kidney Disease	http://polycystickidney-options.com
Polycythemia Vera	http://polycythemiavera-options.com
Polymyalgia rheumatica (PMR)	http://polymyalgiarheumatica-options.com
Polyps	http://polyps-options.com
Porphyria (All 6 kinds?)	http://porphyria-options.com
Postconcussion syndrome	http://postconcussion-options.com
Post-Polio Syndrome	http://postpolio-options.com
Post-traumatic Syndrome	http://post-traumatic-options.com
Precocious puberty	http://precociouspuberty-options.com
Pre-eclampsia (pregnancy complication)	http://preeclampsia-options.com
Premature Gray Hair	http://grayhair-options.com
Pressure Ulcer	http://pressureulcer-options.com
Priapism	http://priapism-options.com
Prickly heat	http://pricklyheat-options.com
Prostatitis	http://prostatitis-options.com
Pruritus Ani	http://pruritusani-options.com
PseudoTumor Cerebri	http://pseudotumorcerebri-options.com
Raynauds Syndrome	http://raynauds-options.com
Rectal prolapse	http://rectalprolapse-options.com
Renal Artery Stenosis	http://renalarterystenosis-options.com
Renal Failure	http://renalfailure-options.com
Restless Leg Syndrome	http://restlessleg-options.com
Retinal Vein Occlusion	http://retinalveinocclusion-options.com
Retinitis Pigmentosa	http://retinitispigmentosa-options.com
Rheumatoid Arthritis	http://rheumatoidarthritis-options.com
Ringworm	http://ringworm-options.com
Rosacea	http://rosacea-options.com
Salivary Duct Stones	http://ductstones-options.com
Scabies	http://scabies-options.com
Schistosomiasis	http://schistosomiasis-options.com
Schizophrenia (now that is dangerous!)	http://schizophrenia-options.com
Sciatica	http://sciatica-options.com
Scleroderma	http://scleroderma-options.com
Sebaceous Cyst	http://sebaceouscyst-options.com
Seborrheic Keratosis	http://seborrheickeratosis-options.com
Sensitive Teeth	http://sensitiveteeth-options.com
Shingles	http://shingles-options.com
Sick Sinus Syndrome	http://sicksinus-options.com
Sinus Tachycardia	http://sinustachycardia-options.com
Sjogrens Syndrome	http://sjogrens-options.com
Skin Abscess	http://abscess-options.com
Skin Tags	http://skintags-options.com
Soft Tissue Sarcomas	http://softtissuesarcomas-options.com
Spasmodic Dysphonia	http://spasmodictorticollis-options.com
Spider Veins	http://spidervein-options.com
Spinal Muscular Atrophy	http://spinalmuscularatrophy-options.com
Stroke (...REALLY?)	http://stroke-options.com
Sunburn (check the privacy policy)	http://sunburn-options.com
Syphilis	http://syphilis-options.com
Syringomyelia	http://syringomyelia-options.com
Teething troubles	http://teething-options.com
Temporomandibular Joint Syndrome	http://tmj-options.com
Tetanus	http://tetanus-options.com
Thalassemia minor	http://thalassemiaminor-options.com
Thrombocythemia	http://thrombocythemia-options.com
Thyroid Nodule	http://thyroidnodule-options.com
Thyroiditis	http://thyroiditis-options.com
Tick Bite	http://tickbite-options.com
Tinea	http://tinea-options.com
Tinea Versicolor	http://tineaversicolor-options.com
Tinnitus	http://tinnitus-options.com
Trigenimenal Neuralgia	http://trigenimenalneuralgia-options.com
Trimethylaminuria	http://trimethylaminuria-options.com
Ulcerative Colitis	http://colitis-options.com
Undescended Testicle	http://undescendedtesticle-options.com
Upper Gastrointestinal Bleeding	http://intestinalbleeding-options.com
Urethritis	http://urethritis-options.com
Urticaria Pigmentosa	http://urticariapigmentosa-options.com
Uterine Fibroids	http://uterinefibroids-options.com
Uterine Prolapse	http://uterineprolapse-options.com
Uveitis	http://uveitis-options.com
Vitreous Hemorrhage	http://vitreoushemorrhage-options.com
Vocal Cord Nodules	http://vocalcordnodules-options.com
Vocal Cord Paralysis	http://vocalcordparalysis-options.com
Von Willebrand Disease	http://vonwillebrand-options.com
Vulvovaginitis	http://vulvovaginitis-options.com
Vulvular Dystrophy	http://vulvardystrophy-options.com
Waldenstrom's Macroglobulinemia	http://macroglobulinemia-options.com
Warts	http://warts-options.com
Wilson's Disease	http://wilsons-options.com
Wiskott Aldrich Syndrome	http://wiskottaldrich.com
XXXX (Look Ma!  I found the template!)	http://legulcers-options.com/aboutus.html

Many of these conditions are relatively benign or harmless. However, some are serious conditions: MSA, Spinal Muscular Atrophy, Muscular Dystrophy, Syringomyelia, Ascites, Stroke, Pseudotumor Cerebri, renal failure, leukemia

Some are targeted at pregnant women (preeclampsia, Intrahepatic Cholestasis of Pregnancy),

Some at babies (teething, prickly heat)

And some are just evil  (Mental retardation, schizophrenia, gonorrhea, syphilis)

Please spread the word and help shut these people down.

NOTE: Special thanks to a reader,  Kathryn who first sussed the SPAH connection.

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

 This list was last updated on September 7th, 2009. There are almost 300 products on it.

Condition	Product
Abdominal Adhesions	http://abdotab.com/about_tab.html
Acanthosis Nigricans	http://nigratab.com/about_tab.html
Achlasia	http://achlotab.com/about_tab.html
Acrocyanosis	http://nansotab.com/about_tab.html
Acute Broncitis	http://bronchitab.com/about_tab.html
Adenopathy	http://adnotab.com/about_tab.html
Adhd	http://hypotab.com/about_tab.html
Adrenoleukodystrophy	http://adrenotab.com/about_tab.html
Agalactia (lack of breast milk)	http://milkotab.com/about_tab.html
Age-Related Macular Degeneration	http://sightotab.com/about_tab.html
Alkaptonuria (genetic)	Alkotab.com (site not available)
Allergic rhinitis	http://rhinotab.com/about_tab.html
Alopecia	http://alotab.com/about_tab.html
ameloblastoma	http://blastotab.com/about_tab.html
Amenorrhea	http://amenotab.com/about_tab.html
Amlyoidosis	http://amylotab.com/about_tab.html
Angina	http://angiotab.com/about_tab.html
Anginoedema	http://dematab.com/about.html
Angionma	http://hematab.com/about_tab.html
Anklyosing Spondylitis	http://spondotab.com/about_tab.html
Anorectal Fistula	http://anoratab.com/about_tab.html
Antiphospholipid Syndrome	http://phosphitab.com/about_tab.html
Aquagenic Pruritus	http://aquitab.com/about_tab.html
Arachnoid cysts	http://archotab.com/about_tab.html
Artery stenosis	http://stenotab.com/about_tab.html
Ascites	http://ascotab.com/about_tab.html
Asthma	http://asthotab.com/about_tab.html
Atelectasis	http://atelotab.com/about_tab.html
Atherosclerosis	http://atherotab.com/about_tab.html
Athlete's foot	http://athletab.com/about_tab.html
Atrial Fibrillation	http://fibritab.com/about_tab.html
Autoimmune Hemolytic Anemia	http://hemotab.com/about_tab.html
Azospermia	http://spazotab.com/about_tab.html (Spazotab?  Seriously?)
Behcet's Syndrome	http://behcotab.com/about_tab.html
Bell's palsy	http://palsitab.com/about_tab.html
Benign essential blaphasospasm	http://prismatab.com/about_tab.html
Benign essential tremor	http://trematab.com/about_tab.html
Blepharitis	http://belphotab.com/about_tab.html
Blisters	http://blistotab.com/
Blood in the Semen	http://silutin.com/
Bone and Joint Tuberculosis	http://tb-tab.com/
Bone Degeneration	http://genratab.com/
Bowen's Disease	http://bonatab.com/
Bradycardia	http://bradnotab.com/
Breath odor	http://odutab.com/
Bromhidrosis	http://bromotab.com/
Bronchiectasis	http://bronchotab.com/
Bulima	http://balmotab.com/
Bullous pemphigoid	http://pemphitab.com/
Burning mouth syndrome	http://burnatab.com/
Canker sore	http://cankertab.com/
Carcinoid syndrome	http://carcotab.com/
Cardiomyopathy	http://cardio-tab.com/
Cataract	http://catratab.com/
Cellulitis	http://cellutab.com/
Cerebal palsy	http://palsotab.com/
CerebraxReiter's Syndrome	http://reitotab.com/
Cervical spine ( i.e. "neck"!)	http://vercitab.com/
Cervical Spondylosis	http://cervotab.com/
Cervicitis	http://cervitab.com/
Cheilitis	http://cheilotab.com/
Chloracne	http://chloratab.com/
Chondromalacia Patellae	http://chondrotab.com/
Chordoma	http://chordotab.com/
Cluster Headache	http://clustotab.com/
Condyloma	http://condytab.com/
Congestive Heart Failure	http://cardotab.com/
Constipation	http://constitab.com/
Cronkhite-Canada syndrome	http://cronkatab.com/
Cushings disease	http://hisnotab.com/
Cyclic Vomiting Syndrome	http://nausitab.com/
Dandruff	http://danditab.com/
Dacryocystitis	http://www.dacrotab.com/
Dark Circles	http://clearotab.com/
Deep Venous Thrombosis	http://thrombitab.com/
Delayed Ejaculation	http://ejacutab.com/
Dermatomyositis	http://myotab.com/
Diabetes Insipidus	http://insitab.com/
Diverticular Disease	http://divutab.com/
Drematofibroma	http://ridmotab.com/
Drooling	http://droolotab.com/
Drug Induced Liver Disease	http://livnitab.com/
Dysfunctional Uterine Bleeding	http://uterotab.com/
Dyshidrosis	http://hidrotab.com/
Dyspepsia	http://dyspitab.com/
Eczema	http://eczitab.com/
Ehlers-Danlos syndrome (EDS)	http://danlotab.com/
emphysema	http://emphotab.com/
Enlarged Tonsils	http://tonsotab.com/
Eosinophilia	http://eosiotab.com/
Epididymitis	http://epotab.com/
Erysipelas	http://eritab.com/
Erythema multiforme	http://emutab.com/
Erythroderma	http://erythrotab.com/
Erythromelalgia	http://meoltab.com/
Eyelid ptosis	http://ptosotab.com/
Fahr's Disease	http://fahrotab.com/
Fatty liver	http://faltotab.com/
Fibroadenoma of Breast	http://fibrotab.com/
Fibrocystic Breast Disease	http://fibrangin.com/
Flatulence	http://flatotab.com/
Folliculitis	http://follitab.com/
Formaldehyde poisoning	http://formatab.com/
Friedreich's Ataxia	http://ataxotab.com/
Frostbite	http://frostab.com/
Frozen shoulder	http://frozitab.com/
Ganglion cyst	http://ganglitab.com/
Gastritis	http://gastritab.com/
Gastro paresis	http://gastrotab.com/
Gilbert's Syndrome	http://gilbotab.com/
Gingivitis	http://gingotab.com/
Glaucoma	http://glaucotab.com/
Globus hystericus	http://globutab.com/
Glossopharyngeal Neuralgia	http://glossotab.com/
Gonorrhea	http://gonorrhotab.com/
Granuloma annulare	http://granutab.com/
Grave's disease	http://gravitab.com/
Grover's Disease	http://grovatab.com/
Guillain-Barre Syndrome	http://guillatab.com/
gynecomastia	http://gynetab.com/
Hand tremors	http://tremitab.com/
Hearing loss	http://sonitab.com/
Hemmorhoids (what, no Pileen?)	http://hemorotab.com/
Hepatic Hemangioma	http://hematab.com/
Hereditary Fructose Intolerence	http://fructotab.com/
Hernias	http://hernotab.com/
Herpes Simplex and Zoster	http://herpotab.com/
Herpetiform dermatitis	http://formotab.com/
Hidradenitis Suppurativa	http://hidratab.com/
Hives	http://hivotab.com/
Hookworm	http://hooknotab.com/
Horner's Syndrome	http://hornotab.com/
Hydrocele	http://hydrotab.com/
hydrocephalus	http://hydra-tab.com/
Hydronephrosis	http://nephratab.com/
Hyperhidrosis	http://anti-sweat.com/
Hypertension	http://nervotab.com/
Hypertensive retinopathy	http://retinotab.com/
Hypotension	http://pentotab.com/
Hysteria	http://hystotab.com/
Ichthyosis	http://ichnotab.com/
Idiopathic Thrombocytopenic Purpura	http://thorsatec.com/
Iga Nephropathy	http://iganotab.com/
Impetigo	http://impotab.com/
Inclusion body myositis (IBM)	http://mysotab.com/
Intrahepatic Cholestasis of Pregnancy	http://choleotab.com/
Irritable Bowel Syndrome	http://irnatab.com/
Jock itch	http://tinnitab.com/
Keloids	http://kelotab.com/
Keratoacanthoma	http://keratotab.com/
Leg ulcers	http://lu-tab.com/
Lennox Gastaut Syndrome	http://lennotab.com/
Leukemia	http://leukotab.com/
Lichen Planus	http://lp-tab.com/
Lichen Simplex Chronicus	http://lichnotab.com/
Lipoma	http://limpotab.com/
Liver cirrhosis	http://cirrhotab.com/
Liver cyst	http://livotab.com/
Low back pain	http://back-tab.com/
Lymphadenitis	http://lymphatab.com/
Malabsorption	http://sorbotab.com/
Male Infertility	http://fertotab.com/
Mastitis	http://mastotab.com/
Melasma	http://melasma-tab.com/
Meniere's Disease	http://menrotab.com/
Menorrhagia	http://menotab.com/
Mental Retardation (Grrrrr)	http://retratab.com/
Molluscum Contagiosum	http://molsitab.com/
Motor Neuron Disease	http://mototab.com/
Multiple System Athrophy	http://atrophtab.com/
Muscular Dystrophy	http://md-tab.com/
Muscular Fasciculation	http://fascitab.com/
Myasthenia Gravis	http://mg-tab.com/
Myelitis	http://myelitotab.com/
Myocarditis	http://carditab.com/
Myopic degeneration	http://mydotab.com/
Narcolepsy	http://narcotab.com/
Nasal Polyps (Note Correct Spelling)	polytab (reassigned)
Nephrotic Syndrome	http://nephrotab.com/
neutropenia	http://neutrotab.com/
Obesity	http://obesotab.com/
Optic atrophy	http://atrotab.com/
Osteo necrosis	http://ostotab.com/
Osteomyelitis	http://osteotab.com/
Osteoporosis	http://ostatab.com/
Otitis media	http://otiotab.com/
Pancreatitis	http://pancrotab.com/
Papular Urtucaria	http://paputab.com/
Parkinsonism	http://parkotab.com/
Paroxysmal Tachycardia	http://tachratab.com/
Pelvic Inflammatory Disease	http://pelvotab.com/
Pemphigus	http://pemphotab.com/
penumothorax	http://pneumotab.com/
Peptic ulcer	http://peptotab.com/
Periodontitis	http://periotab.com/
Peripheral Neuropathy	http://peritab.com/
Peyronie's Disease	http://pyrotab.com/
Pharangitis	http://phyratab.com/
photodermatitis	http://dermotab.com/
Photosensitivity	http://seenotab.com/
Pick's Disease	http://picknotab.com/
Pityriasis Alba	http://albatab.com/
Pityriasis Roseca	http://rosotab.com/
Pneumothorax	http://pneumotab.com/
Polycystic Kidney Disease	http://cystotab.com/
Polycythemia Vera	http://pv-tab.com/
Polymyalgia rheumatica (PMR)	http://myalatab.com/
Polyps	http://colotab.com/
Porphyria (All 6 kinds?)	phyrotab (not available)
Postconcussion syndrome	http://concutab.com/
Post-Polio Syndrome	http://pp-tab.com/
Post-traumatic Syndrome	http://traumatab.com/
Precocious puberty	http://pubotab.com/
Pre-eclampsia (pregnancy complication)	http://clamotab.com/
Premature Gray Hair	http://melatab.com/
Pressure Ulcer	http://press-tab.com/
Priapism	http://priatab.com/
Prickly heat	http://pricknotab.com/
Pruritus Ani	http://prurotab.com/
PseudoTumor Cerebri	http://pseudotab.com/
Raynauds Syndrome	http://raynotab.com/
Rectal prolapse	http://rectotab.com/
Renal Artery Stenosis	http://stenotab.com/
Renal Failure	http://renotab.com/
Restless Leg Syndrome	http://restotab.com/
Retinal Vein Occlusion	http://occlotab.com/
Retinitis Pigmentosa	http://retnitab.com/
Rheumatoid Arthritis	http://arthotab.com/
Ringworm	http://ringotab.com/
Rosacea	http://rosatab.com/
Salivary Duct Stones	http://ductotab.com/
Schistosomiasis	http://schistotab.com/
Schizophrenia (now that is dangerous!)	http://schizotab.com/
Sciatica	http://sciatab.com/
Scleroderma	http://sclerotab.com/
Sebaceous Cyst	http://sebatab.com/
Seborrheic Keratosis	http://sebotab.com/
Sensitive Teeth	http://sensotab.com/
Shingles	http://shingotab.com/
Sick Sinus Syndrome	http://sindrotab.com/
Sinus Tachycardia	http://tachytab.com/
Sjogrens Syndrome	http://sjorgotab.com/
Skin Abscess	http://absotab.com/
Skin Tags	http://tagnotab.com/
Soft Tissue Sarcomas	http://sarcotab.com/
Spasmodic Dysphonia	http://dysphotab.com/
Spider Veins	http://telitab.com/
Spinal Muscular Atrophy	http://muscotab.com/
Stroke (...REALLY?)	http://strototab.com/
Sunburn (check the privacy policy)	http://bursitab.com/
Syringomyelia	http://syrotab.com/
Teething troubles	http://dentotab.com/
Temporomandibular Joint Syndrome	http://tempotab.com/
Tetanus	http://tetnatab.com/
Thalassemia minor	http://thalsotab.com/
Thrombocythemia	http://thrombotab.com/
Thyroid Nodule	http://thyrotab.com/
Thyroiditis	http://thyrodin.com/
Tick Bite	http://ticknotab.com/
Tinea Versicolor	http://tineatab.com/
Tinnitus	http://tinnutab.com/
Trigenimenal Neuralgia	http://trignotab.com/
Trimethylaminuria	http://lamnitab.com/
Ulcerative Colitis	http://coliotab.com/
Undescended Testicle	http://testitab.com/
Upper Gastrointestinal Bleeding	http://gastrobat.com/
Urethritis	http://urethrotab.com/
Urticaria Pigmentosa	http://carcitab.com/
Uterine Fibroids	http://utritab.com/
Uterine Prolapse	http://utrinotab.com/
Uveitis	http://uveinotab.com/
Vitreous Hemorrhage	http://vitrotab.com/
Vocal Cord Nodules	http://nodutab.com/
Vocal Cord Paralysis	http://vocotab.com/
Von Willebrand Disease	http://willetab.com/
Vulvovaginitis	http://vagnotab.com/
Vulvular Dystrophy	http://dystrotab.com/
Waldenstrom's Macroglobulinemia	http://waldotab.com/
Warts	http://wartotab.com/
Wilson's Disease	http://wilsotab.com/
Wiskott Aldrich Syndrome	http://wiskotab.com/

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.

Rules, Damn Rules and Statistics

I have been thinking about rules a lot recently. I live in a house with two ASD kids, so rules are a big part of my home life. Here are examples of some of the more colorful rules we have had in the past:

• We keep our shoes and clothes on in restaurants.

• No rocks in the house

• We don't growl at friends (or at anybody).

• We don't lick Mom

• No sniffing the Dominos man (it really freaks him out!)

• No feet on the dog

• We wear clothes and shoes when we go outside.

Most rules are good. Most rules are sensible and designed to help in some way. We don't put our feet on the dog or he might bite us. We wear shoes and clothes outside so we don't freeze to death, don't cut our feet and don't freak out the neighbors. Rules created with thought and purpose are good.

In diagnostic medicine there are a lot of good commonsense Rules. If a person arrives into the ER complaining that their knees hurt, there is no point in giving them a chest x-ray.  You know, stuff like that.

Damn Rules, however are another story. Damn rules are arbitrary and seem to have little logic or purpose. Damn Rules are rampant in diagnostic medicine.

I remember when Grace was about 9 months old, I took her to the doctor.  She was vomiting with a fever. It was my second trip to the pediatrician's that week. I had been there a few days earlier with a feverish, vomiting Joe, who was about 2½ at the time. They had tested Joe for Strep, it was positive. Antibiotics. Done.

I figured it was only a matter of time before Grace got Strep too -those guys were complete germ factories. So as soon as she threw up, I took her to the pediatrician's office.

The Pediatrician walked in to see Grace.  "What's the problem?" he asked before he was through the door.

"She has a fever and she vomited. Her brother has strep, so I thou..." He interrupted me quite brusquely "It's not strep" he said in a very finite way.  He had barely looked at her, hadn't laid a hand on her. What is this? I thought to myself Psychic Medicine?
"How do you know?" I asked, agog.
"Babies under one don't get Strep." he said, dismissively.  "It's probably a virus"
"...But  ....but her brother has Strep and she has the exact same symptoms."
"It doesn't matter. Babies under one don't get strep"

He started to examine Grace, while I pondered this statement. Finally I asked a question that was bothering me.
"How does the strep know?"
He was confused: "What?"
"How does the streptococcus bacteria know how old she is?  How does it test her age (and why does it care)?"  How can it tell the difference between an 11 month old  baby and a 12 month old one?

He looked at me for a minute. spluttered, stopped, looked at the child then asked "what does she weigh?" I told him.  He muttered something very grudging about being big for her age and tested her for Strep. And what do you know? It was positive!  He acted AMAZED.  "But babies under one don't get Strep!"  I struggled not to shout at him.

And afterwards I thought and thought about this and I figured maybe that Damn Rule  was almost true 50 or 100 years ago, when kids were smaller and less well nourished, but not today.

When I took Grace for her follow-up to be sure the Strep was gone, I saw a different doc in the practice.  "Oh! She had strep? and she is  ...what?  ...9 months old?  Wow! I wouldn't even have tested her! Babies under one don't get Strep, you know...". I indicated Grace with a flourish of my hypermobile wrist: "Exhibit A" I said with heavy irony

I think she missed the irony.

You know, it's funny, I never read the paper about the stunning case of Grace-the-nine-month-old-baby-with-Strep in any of the on-line research I have done over the years. 

Sorry. That irony just keeps coming back.

There are many rules like that in medicine. Rules which rely on arbitrary formulas and measurements without looking at changes in the trends or other factors. -Damn Rules, as I like to call them.  In our example, Grace had a sibling with Strep (which is highly contagious) and had the exact same symptoms, but these factors  were completely ignored in favor of a Damn Rule with no real logic behind it. It wasn't until I went all Mr Spock on the guy and challenged the logic that she was tested (but I am sure many mothers would not have dared to challenge the doctor, which thought scares me). I still don't know how the Streptococcus bacteria knows the weight of the child, BTW  -or why it cares!

There are many examples of Damn Rules in medicine, and I have seen many people refused treatment -i.e. hurt because of these Damn Rules (hello Hippocratic Oath?). 

Some of the Damn Rules I have encountered recently:

• A brain herniation of <5mm is not a Chiari Malformation (regardless of symptoms)
• A Small syrinx does not cause symptoms (said to a blatantly symptomatic person with a small syrinx)
  And my personal favorite:
• He makes eye contact, so he cannot be on the Autistic Spectrum.

In addition to -and conjunction with- Damn Rules, Statistics is another diagnostic tool which has absolutely no bearing on symptoms or circumstance and yet, like Damn Rules, Statistics are often taken into account and indeed used to rule stuff out before symptoms or circumstance are considered.

How many times have I been told that I can't have an illness -say Ehlers-Danlos Syndrome, because it is "rare"?  There seems to be some kind of blinders set up in the medical world, some unwritten Damn Rules that go along with Statistics. I think they read something like this:

• "Rare" is actually another word for "mythical" or "non-existent"
• Even if it exists, I, Dr. OfSickMother cannot possibly have a patient with a rare disease in my care because:

• Nothing interesting ever happens to me
• It is too scary a prospect for me to handle

The problems with this thinking -with using Statistics as a diagnostic tool at all; is that it becomes self-perpetuating. So-called "rare" disease and conditions remain undiagnosed or labeled psychosomatic because they are "rare". This causes the incidence rate for psychosomatic illness to rise in the Statistics because so many people with "rare" illnesses end up in that bin. With the rise of these (usually unqualified) psychological diagnoses in the statistics, the relative incidence of real "rare" diseases fall...  Rinse and repeat.

It's enough to make me sick. 

Oops. Too late!

Pushing Boundaries

This is  phrase you hear a lot as a parent: "Oh he's just pushing boundaries. He is trying to see what he can get away with".  And often it is true. But sometimes it is something else. Like Autism.

This is not a parenting post. This is a me post.  Again. Sorry, but it's my blog and I'll self-indulge if I want to.

So yeah. I started this Florinef thing less than a week ago in an attempt to address me low aldosterone issue. Florinef is basically a synthetic form of the hormone, so it should be the right tool for the job, right?  I thought so too.

But I have been very up-and-down since starting this medication. Now, it's not all the Florinef's fault. Mostly it is my own fault. First off, me and my short-term memory screwed up.  I was told to start on a half a pill taken in the morning, and I started on one pill taken at night (Why I don't write this stuff down is beyond me. OK I expected it to be on the pill bottle and it wasn't. Lesson learned.)  Ugh! Can you say INSOMNIA? And thirst? And a few other things (headache)?  So I called the doc and got that sorted out. I waited 36 hours between doses and took a half a pill in the morning. I was OK. However, the NEXT morning (yesterday) I was very NOT OK.  Very, very not OK.  As in almost went to the ER not OK. And that lasted pretty much all day.

I think this stuff has a long half-life. 

And now -per doctor's orders- I am up to a full pill in the morning. I guess I should wait till tomorrow to see how I feel on that.

Yes, I should wait.

But I didn't wait.  I was pushing boundaries today; -even after the day I had yesterday. I ate breakfast just to see what would happen. Would I have a seizure? Woudl I fall asleep uncontrollably?

Now, yesterday I ate breakfast and was effectively felled for the rest of the day. And it is the definition of madness to do the same thing and expect  a different result, right? But I did it anyway and GOT a different result. I ate breakfast and I felt OK. Result!

And if that weren't enough, I decided to push ANOTHER boundary. I ate lunch. I was a little thirsty (very thirsty is much more common), a little salt-cravy, but nothing major. No seizure.

Wow.

I realized I was really pushing my luck so I stopped experimenting for today.

And then I got to thinking about pushing boundaries: When you are sick, you push boundaries all the time. Every day, you push to see if you can still do X or still not do Y. And if you find it s a "good" day and you can maybe do both X and Y, you don't settle for that. You push harder. You go for the next thing (which I assume is Z!), trying to find the limitations of your limitations for that day, because they often change. And that's one of the most frustrating things about this whole illness business:

The inconsistency.

Because if every day was a known quantity, like it usually is for unsick people, you can plan. You will know the parameters to set, and you can go with those.

...and just realized I have just come full circle back to my "commitments" post.

Time to stop!

OSM's Medical Advocacy Lesson 1

I promised an advocacy post, and this is the first installment. Please note that a lot of my experience relates to dealing with private health insurance in the United States. However, I think some of the concepts can be applied elsewhere.

The first thing you have to understand when trying to get a diagnosis or help for yourself, a dependent or a loved one, is to realize who ultimately owns responsibility for your health?

You do.

It is not your doctor's job to make you well. Indeed, in some cases it may not be in your doctor's interest to make you well; if he/she is making money by you being sick. And doctors do not all have a legal, ethical or moral obligation to treat you or make you well. The Hippocratic oath is not taken in many medical schools these days.

Now, Don't get me wrong: There are many great and dedicated doctors out there who will fight tooth and nail for their patients. There are many who will go above and beyond the call of duty. However, It would be a mistake for you (or anyone) to assume that your doctor is one of these fighters until he or she proves otherwise. And even then, you can't assume this dedication will continue. Doctors are people too, and subject to all the same fallibility as the rest of us.

So the only person who really has the responsibility to fix you is you. This is the first fundamental truth a patient needs to understand when seeking medical help. Once you make this leap of logic, a lot of the other stuff I will say is just common sense.

So how do you take ownership of your own case?  I hear a lot of people shaking their heard or panicking at this point.

The second rule is "Don't panic." This is a big undertaking. Take things one step at a time and remain in control.

The first practical step you need to take when managing your own case is get all you medical records as far back as you can go, including blood-work, images (MRI, X-ray CT, etc etc), office and consultant notes (the last two are the trickiest to get). In the United States a person is entitled by law to have copies of their medical records. I know in the UK some agencies have started sending copies of reports to patients as well.

Acquire records on an ongoing basis as they occur. If you have blood-work taken at a lab, ask the lab to send you a copy when they send the results to your doctor. The same for any imaging or other tests.

Read the notes and tests, and educate yourself on what is going on in your body, and ask your doctor questions about anything you don't understand on the tests.   I learned this lesson the hard way: A few years ago, I noticed something called "MCV" on a blood test was out  of range. My doctor had never mentioned it. However I was curious and I looked it up on-line. The number meant my blood cells were a little too large: Not a problem, right?  I didn't mention it to my doctor. Big blood cells just mean more oxygen, right?  WRONG! Apparently, large blood cells don't carry oxygen too well. And an elevated MCV number is an indicator of B12 deficiency. But the doctor apparently missed it on the report, and I never asked him about it. My B12 deficiency was not discovered until about three years later by another doctor. I started taking supplements and felt a lot better immediately. Stupid me!  That improvement could have happened three years earlier had I been less shy about "bothering" the doctor.

So ask questions about about test results and stuff on reports. it is perfectly fine to say something like  "this report says I have an "asymptomatic"  tarlov cyst. However the radiologist never asked me if I can feel my foot: I can't.  Could the Tarlov cyst be causing this?"

Even if all reports are normal, know what and when your normal is. Because rest results may change, and it won't be your doctor who will remember if X, Y, or Z was different two years ago. it will be up to you.

Once you have your medical records or test results, make sure all of your doctors get a copy. This may involve a lot of copying or mailing/faxing, but it ensures that there are more than one set of medically qualified eyes on your records and test results. One doctor may get an idea or a realization by reading test results ordered by a different doctor. It also saves you undergoing the same test multiple times.

So to summarize lesson one:

1. Own responsibility for your own health care
2. Don't panic and work methodically
3. Get copies of your medical records and ask questions about anything you don't understand.
4. Share medical records and test results with all of your doctors, not just the ordering doc and the PCP.

That probably enough to be going along with for now. Especially as my hands are killing me!

Be well.

Driving The Bus

One of the most relevant questions a doctor ever asked me, -and it was relatively early in this whole process- was this:  "Who do you want to drive this bus? Me or Dr. #6?". By that question, he meant who was in charge of the decisions regarding my seizures and (I guess) health in general.  I chose Dr #6. I chose poorly.

In truth, Dr #6 was never driving the bus. She did all in her power to NOT drive it. Looking back on it all;  I was driving the bus. With one hand and a dodgy leg. In the dark.  With Dr #6 periodically jerking the wheel and steering me into other doctor's driveways

No wonder we have been going around in circles.

Since ditching #6, I have been driving the bus alone, with #25 shouting directions in my ear (and the rheumy, grim and pursed-lipped, a white-knuckled passenger in the back).

In all seriousness though, The "bus driver" question is a very relevant one for anyone with a chronic health condition or indeed for anyone  with a child who has a health condition or a disability.  Theoretically, one's PCP should drive the bus. The PCP, should hold all the threads, do the referrals, collaborate the data coming back, make sense of it, and then make recommendations.  But in this day-and age, most don't do all that. In a complicated case, they can't! They are so underpaid by the insurance companies, the only way to make a living is to see more patients in a shorter period of time. So forget all this management of complicated cases. It is a lot of hassle for absolutely no gain for someone already pressed for time.

So the PCP usually can't drive the bus. The best he might do park the bus somewhere and read the paper.  If nudged by the patient, he may write a referral to a specialist. Which in keeping with this analogy, is like giving the patient a transfer to a crosstown bus (one way).

Therefore I have had to drive my own bus.(and my kids' buses).I don't excel at this by any means. Especially as I deal with a lot of specialists. But I have learned quite a bit and I continue to learn. Maybe soon I get this bus to where we need to be.

In one piece.

Four Eyes Come Full Circle

A friend reminded me to update you guy on my daughter's situation.  You remember last Friday I took her to the ER because she had double vision for over 3  hours?

Well, on Monday I yanked her out of school early for an emergency ophthalmologist appointment.  She had only been there a month ago but they still gave her a very comprehensive work-up, particularly checking her tracking and how her eyes worked in sync (or not).

At the end of the appointment, the doc tell me that he is pretty sure it is a problem of low tone in her eye muscles. He said that her eyes sometimes diverge to work as two individual units instead of a whole. if she is tired, she probably cannot get them to converge again. He thinks eyestrain may be a contributing factor. She needed glasses last month -was just on the border for needing a prescription, but her regular eye doctor had wanted to hold off until after the summer recess. Well, we are holding off no longer. Right after the appointment, we went to the optometrist with our shiny new prescription and picked out frames.  We picked up up her new glasses yesterday.

She is delighted to finally be wearing glasses. I heard her telling one of her friends. "Next, I'm going to get braces!"   Quoi?  How strange is that kid?  What child *wants* braces and glasses? Has 'Ugly Betty' become such a cultural icon that 8yo girls are feigning squints and overbites? I could probably go back to the ICD-6 and find a suitable diagnosis for this behavior; Maybe "Hero Worship", "Mental" or "Away With The Fairies" is in there. I never thought to check.

Now if I were a good sick mother, I would have thought to take a photograph of my darling in her new glasses to post here, before she took off on her sleepover playdate. But I'm not.  I may get one and slot it in later.

But I thought glasses was fitting end to the double vision saga, which started with the statement "you have four eyes" Because now I can retort "No, I don't. But you do!" 

(Yes: Underneath it all,  I am actually 12 years old...)

The View From The Door.

Friday nights are busy for us. We eat pizza (pizza on Fridays appears to be the law around here), come home, the kids get changed into their Judo gear and we go to their Judo class.

So I am standing at the front door, holding it open with one hand, herding one kid out, and calling back to the other kid to hurry, when kid #1 looks up into my face, laughs and says "You look funny. You have four eyes".

Now if I wore glasses, I would not think twice of this remark, but I don't. "Four eyes?" I asked. "Really?" She laughed. "Yes!"

"How many heads do I have?"
"Two"
I held up two fingers. "How many fingers?"
"Four"
I stood back. "how many moms?"
"Two"

(Shit.)

Double vision in an eight-year old is not a good thing. I asked her when it had started and she told me it had started at school during gym class.
"What time is gym?"
"2:15". 
I looked at my watch: 5:17. So the kid had had double vision for three hours and not told anyone!  I instantly revised my plans and instead of going to the pizzeria, we went straight to the urgent care pediatrician.  I don't take chances with stuff like that. Forget 'wait and see'. We can 'wait and see' in the doctor's office where there are licensed professionals at hand should the view prove not to our liking.

The pediatrician wouldn't even see her. They told me she needed a CT scan and sent me straight to the Children's hospital. In Friday rush-hour traffic in the teeming rain.  Without dinner.  It was just me and the two kids so I had to take them both. I half expected Joe to melt, but he took the change in plans very well. I guess he understands that I only go to the hospital if needed.

Halfway to the hospital she tells me her vision is OK again.  I did wonder if I should turn around, get pizza and go to Judo, We would have made it. But then I thought I would never forgive myself if it did turn out to be something serious. And Judo probably isn't the prescribed treatment for an unknown neurological  or eye problem. That last part was just a hunch of mine, but I decided to go with it. I took her to the ER.

We were attended pretty quickly, even though by now my kid was fine and engaged in a spirited game of "hand spiders" with her mom (Joe had found a snack machine and The Cartoon Network on a TV and was happy).

Long story short: We were there for several hours. She aced all the neurological exams. They decided not to CT scan her for now and we have to follow up with her pediatrician and the pediatric ophthalmologist. She just saw him last month, but oh well...

So I was driving home and stressing. What if she needs glasses? Our vision coverage is crappy. Joe just got brand-new glasses last month. Within two weeks he had lost them.   They were lost lost. I had turned the house up-side down, had called the school, the community center, the pool, the bus company, the neighbors. Everyone. Those glasses had not shown up. I had resigned myself to buying him another pair. And now I am thinking what if *she* needs glasses too? Where will the money come from?  I had known she might need glasses in six months... But that was OK. If the kids' ophthalmologist appointments are six months apart, that is one pair of glasses every six months instead of two pairs every twelve months. That is easier to do.  But now I might be looking at buying three pairs in two months, and that is not very do-able at all right now. <...sigh>

At bedtime, I was trying to contain an overstimulated Joe, who was quite delighted to be going to bed at 10:45pm (although he reminded me that if you don't account for daylight Savings Time, it is only 9:45pm. I assured him; yes. this is a new record). I ended up in an unfamiliar location; standing in his room, at the door, calling for him to come to me. While I was waiting, I happened to glance to my right. I glanced again: There, on top of a battleship game, which had somehow gotten itself trapped behind the door, were Joe's new glasses.

At last something good has come of this day.

I'm going to bed quick before something else happens. I want to finish the day on a high note. 

For once.