One Sick Mother

Getting Your Money Back

A friend-of-a-friend works for a credit card company. I asked J to ask her for some tips on getting your money back if you were scammed by an on-line "wonder treatment" company, such as Gordon's Herbal Research Center.

The sweetheart came back with a goldmine of information: Here it is:

"DISPUTE" First you must understand that filing a dispute through your bank is more costly to these companies than the price of their product. If you call them and they refuse to refund the money, threaten a to file a dispute with your bank or credit card.

Most companies will fold if you do this, and return your money because -even if they win the dispute, it will cost them more to fight it than to refund the money in the first place.

So call the products Customer Service first and tell them you are going to dispute it with your bank, and if they won't help you out, file the dispute anyway!.  Even if you don't win, you will know that you have cost them probably as much money as they cost you, with a nice helping of aggravation on the side. (HA! I have been telling people to go straight to their credit card company!)

Attorney General- for those in the United States, it never hurts to threaten to go to your State AG. When enough complaints, or even ONE good complaint go to his office and they decide to investigate, companies and those associated with it are suspended and prohibited to do business until the investigation is finished.

WOW!  I didn't know that last part!  Like I said: Gold.  Most of the scammers use CCNow to process their payments. CCNow is owned by Digital River, a publicly traded US company. If the AG decided to shut down anyone who did business with (say) Gordon's Habitual Scamming Center, they would shut down CCNow!  Wow!  And most of the people I hear from just happen to be in the States or -interestingly, in Australia.

Do we have anyone in Australia who knows if you can do a similar thing there?  I don't know if they have Attorney Generals Down Under, but I'm sure they have someone?  Besides the ACCC, I mean, because I have been a bit underwhelmed with them, to be honest. Let me know K? Thanks. (e-mail link is on the top left if you are shy).

Special thanks to J's friend for this information, BTW.

-Just a little note: Most of the companies I cover don't have phone numbers listed, but they have e-mail addresses or online forms. You can do the same thing via e-mail (i.e threaten a dispute). Or if you prefer to pick up the phone,  you can call CCNow, which is the company all of the scammers I have outed use to handle their billing. Calling CCNow will get the message across, because I assume that the CCNow people have direct access to to the scammers, which we do not.

And I am pretty sure CCNow don't want the Attorney General on their behinds.

More Bus Drama

My regular readers may recall that last year, I had to petition the school district to make a new school bus stop nearer to my home. This is because my children and I all have Ehlers-Danlos Syndrome, and I was afraid that the walk to the old bus stop, which involved walking on a street without a sidewalk and crossing two streets, might be dangerous in icy weather. If you have EDS and you slip on ice, there is a very good chance you will dislocate at least one joint (and not be able to get off the ground unassisted).

So last year, I had a series of battles with the district and the doctor's office to get it all sorted out. You can read about (most of) that here and here.

Last week, around Wednesday or Thursday, I realized that I had not received the little yellow cards that tells me the bus route details. I was pretty sure Grace's would be the same as last year, but Joe starts middle school this year and the times/routes are definitely different.

So I called the district to find out the routes.  "Your daughter is being picked up at 8:56 am at the New Stop (i.e. right by the house).  Your son will be picked up at 7:38am at the Old Stop (i.e. up the street, in Potential Dislocation Land)"

"Um... why are the stops different for both kids when I provided medical documentation last year for them both, stating that they needed to be picked up closer to home?"

"No. the documentation you provided was only for your daughter."

"No. I'm, pretty sure it was for both (but could I find my copy of the letter right then?  No.)"

"Well, you'll need a doctor's letter for your son.  ...you need one every year anyway because medical conditions change" -This made no sense because they had accepted last year's letter for Grace, but I kept my mouth shut on that point. Instead I said.

"This is genetic. It won't change. He was born with it; he'll die with it. But OK. I'll get a doctor's letter."

I hung up.

"I will die with what, Mom?"  (Oops! I hadn't realized that Joe was right behind me!)

"Ehlers-Danlos Syndrome."

"Oh. OK"

The phone rang a few minutes later. It was the district. They had found the original doctor's letter, and I was right: both children were mentioned by name therein. They would change Joe's stop to pick up at the same location as Grace's. I have to say, of all the offices I deal with in the District, Transportation are probably the nicest.

Unfortunately, the bus company is a whole 'nother story.

So day one of Middle school: Joe and I were out at 7:30. I wasn't sure if the new stop would pick up before or after the 7:38 stop down the street, so we went out early in case it was before (Joe, bless his little heart, had been all prepared: packed, washed, brushed and shined since about 7:10).

We saw the bus arrive at middle of the street and then turn down our street, away from our house, stop for a microsecond at the 7:38 pickup point and then take off in the wrong direction, away from us. OK maybe that was a different route. We waited just in case.

It wasn't a different route.

At 7:45am, with Joe wigging out about being late on his first day of middle school, which would -in his mind- start some kind of chain reaction to Armageddon; I loaded both kids in the car (poor Grace had been hauled out of bed early and asked to get dressed -just in case)  and dropped Joe off on time.

That afternoon, I waited for Joe's bus, which is about an hour ahead of Grace's. No bus went by my house.  I called the bus company. 

"My son isn't home yet. School finished a hour ago and I'm worried"

The lady was breezily unconcerned. "Oh the second wave of buses is just leaving his school now. He is probably on the second wave."

She clearly doesn't know anyone with Asperger's Syndrome. NO WAY was Joe on the second wave! I tried to explain this to her, but she blew me off as an overanxious mom.

Fuck YEAH I was overanxious! My kid was MISSING!

I started going through the elementary school phone book, trying to think of other people who would be on the same route and would have Middle school-age kids to see if these people had received their kids home OK. But the only person I found wasn't picking up.  I was about to call the district when the door opened and Joe walked in, out of breath and sweating.

I turns out, he had been on the first wave bus (of course) and when the bus had breezed by our stop, he had stayed on, thinking maybe it would go around the block or something. It hadn't, and as he got farther and farther from our house, he realized they bus wasn't going to stop for him. So not knowing what to do (although I have pounded "tell an adult" into his brain -apparently pointlessly -since he could vocalize),  he got off several blocks from our home and he ran back to our house, afraid that he was somehow in trouble for the bus's failure to stop.

*sigh*. That kids takes too much responsibility on himself. Apparently this is common with Autistic Spectrum kids.

So I called the district, thinking maybe they hadn't sent the paperwork to the bus company. They had. The lady said. "I even put 'medical' next to it in big letters, so they would know".  I believe her.

So I figure the afternoon bus driver can't or won't read.

You know, I just wish these drivers and administrators really understood the impact this sort of nonsense has on special needs kids. It may be a line on a list or a simple clerical error to them, but to the kid, the perception is (rightly or wrongly) that it is HUGE and potentially life changing. 

And somehow all their own fault.

Or their mother's fault.

Or both.

Joe spent quite some time stressing about the bus situation last night. I reassured him as best I could and told him that I would work with the district and the bus company to fix things, but like last year, it might take a few days to get it right (and don't get me started on substitute drivers, but I didn't go there). Joe got it -probably better than most kids would. "you shouldn't have to do that, Mom"
"Yes I should. It's my job. And if I have to stay on the phone all day to fix this, I will."

I really hoped today would be better than yesterday. As I made his lunch at 7am this morning, I wished and hoped that it would be.

We went out again at 7:30; waited, and again, we watched the bus come to the middle of the street, then turn away from our house. This time I was ready with my trusty phone in hand. I called the bus company, while frantically motioning for Joe to NOT run down the street, to chase a rapidly diminishing bus.  The bus company put me on hold for several minutes. Then they told me "a bus will be there in a couple of minutes to pick him up." Not YOUR bus:  A bus.  So they had screwed up. Again.

Well, but this time it was past Joe's 7:45 cutoff for having a meltdown. I hung up and he was pacing and flapping, all the time talking about fish:

"...so you had the fish and you just didn't reel it in. And in the meantime, I am starving and Grace is starving and you just won't reel that fish in..."

"What do you mean, Joe"

"it's an expression."

"I get that, but I don't understand the expression. What's the fish? Is the bus the fish?"

"Yes. ...No. I don't know.... Look, it's just an EXPRESSION!"

Joe understands about expressions and figures of speech. For years I have been telling him to 'keep his hair on", to "hold his horses" and that he is "on thin ice".  He understands this stuff a lot better than many Auties/Aspies his age.  But this making up of expressions is new to me and this particular autistic expression of speech is completely opaque to me; -to both of us, apparently. Maybe

he knows what he means somewhere in his brain. But I think he just got several metaphors mixed and I somehow ended up being the bad guy with a fishing rod and starving children.

And he managed to make it sound like that had been my sole ambition in life.

Eventually, an empty school bus arrived and stopped on the main road at the side of our house. I asked the driver: "Is this the spot where you will normally stop? Because the elementary school bus usually pulls around the corner out of the traffic?" The driver shrugged.

I don't know. I'm just filling in for the regular guy, who missed this stop." (Oh well, at least he was honest).

I walked back into the house at 8am, mentally exhausted.

I am now wondering what will happen this afternoon?  Where will Joe end up?

And I am also seriously considering the statement he made last night. "If I had a cellphone, I could have called you when the bus didn't stop. Maybe I need a cellphone, Mom"

Maybe he does.

I wonder if I could charge the cost to the useless bus company?

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.

Those Little Things We Say....

My sister had five children in as many years. So for several years,  her house was like some kind of cross between a daycare, a zoo, and an asylum. For most of these years, I lived in a different country so my main communication with her was over the phone.

So there we would be on the phone, chatting normally, when suddenly I would be deafened as my sis would break up a fight or something. Here is an example of what our phone conversations were like for several years.

Sis "...well, there he was, standing all alone, so I wen... GET OFF HIS HEAD!!!  YOU'LL HURT HIM(?)  GET OFF HIS HEAD NOW!!!  ...t over to him and sai...  LET GO OF HIS TAIL!!! NOW! HE'LL BITE YOU!!!  LET GO!!  RIGHT NOW!!! ...d "are you lost, luvvy?  Do you need me to help you find your mum?"

Yes. I was lost. And somewhat deaf in one ear.

I thought, after listening to my sis for years, that I was somewhat prepared for the kinds of things you say when you have kids. I also made sure I had a cordless phone and many handsets, which definitely cuts down on the yelling aspect (In fairness: my sis didn't actually yell that much normally, but while on the phone back then, she was tied to one location).

Today, as I found myself calmly telling Grace "don't suck the cat's blood" I realized that yes, there are definitely some phrases that pop out of my mouth; some combinations of words that I NEVER thought I would say in that order, and it makes me shake my head. Or smile. Usually both.  And sometimes the things I say make me wonder if I have been transported into some kind of bizarro world, or am somehow the star of my very own "Truman show"?  The "cat's blood" thing was totally innocuous, BTW. They were playing a vampire game, and poor George had been designated a 'victim'.

Now, I had expected some strange expressions to come out of my mouth. Here are a few I had expected (and got):

• We don't bring worms/ bugs/ snails/ dead birds into the house"
• We don't run out into traffic
• We don't threaten to kill our sister/brother.
• We don't pick the neighbour's flowers, not even as a gift for Mom.
• We don't go visiting the neighbours without permission (Grace)
• No. You may not drive the car
• See! I TOLD you Teddy can't go in the bath!
• This is what happens when you don't put your gum in the trash!

...and then some things I NEVER thought I would ever hear myself say; especially not in the calm, matter-of-fact voice I perfected about a year or so after Joe's special needs became apparent.

• We don't growl at friends/ strangers/ anybody
• We don't attack other kid's moms (/dads) in the zoo  ...Or anywhere, for that matter.
• We keep our clothes and shoes on in the restaurant, please
• We don't sniff the pizza delivery guy
• We don't tunnel behind the boxes on the supermarket shelf  (I distinctly remember wondering where Joe was, and then when looking down the aisle, I watched a progression of cereal boxes fall off the shelf, one after another, away from me, allowing me to track his progress down the back of the shelf. He was pretty fast! There was a long line of boxes by the time I got to him.)
• Do you always pick on disabled four-year olds? Or have you waited your whole life to meet your intellectual equal? (this to a man in K-mart, who was being mean to Joe.  ...and that one wasn't said in a calm voice!)
• Please don't sniff the food you are given in Kyle's house. His mom's feeling might be hurt.
• What show is that from? (this in response to a clearly echolalic utterance) 
• You need to tell people who you are when you call them on the regular phone. it's not like Skype.  They can't see you.
• No sweetheart. Zombies won't get into the house while we are sleeping. The alarm is set.
• I know the guy was fat, but you can't say that to his face.  You have to use other words, like 'big" ... better yet: Don't mention it at all...

...and there are a few non-parenting-related  phrases I never thought I would hear myself utter, either.

• "Don't call 911. It's only been 40 minutes" (since the seizure began) Don't try that one at home, kids.
• "I think we can get it back in. Just pull my arm straight out -don't twist, whatever you do.  On my count..."

I'm sure there are many more, but I can hear the kids start to get wild in the background, and I suspect I will have to go and use some of my phrases in a minute.

What about you?  Are there any particular phrases you never thought you would use that stand out in your mind?

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.

The Scams Just Don't Stop...

A new reader, Kathryn, who was angered by my post exposing the OHS scams, has done some Internet noodling for herself and uncovered a whole new series of stuff (thank you, Kathryn!).  I am working to get the whole list together. If you are interested in helping, please e-mail me, because there is a LOT of stuff here and I have been extra seizurey of late, therefore my concentration and attention span is particularly poor right now.

You know, when I was initially doing the research on scams, I was saying to myself there had better be nothing in here claiming to cure Autism or Ehlers-Danlos Syndrome. Because that, my friends, would have angered me beyond reason. I was quite angry enough at the whole "rat poison and hairballs as a cure for Parkinson's thing. I think had I found an 'AutieTab' or similar, I would probably have started shopping for explosives and booking a flight to Norway.

So I am glad that enough time has passed now since I finished part III,  for me to look this little beastie in the eye and only get mad enough to turn the air a nice dark shade of indigo...

Hey, guess what? Danlotab is a completely guaranteed and clinically proven herbal treatment for Ehlers Danlos Syndrome!  Now where did I hear THAT before?  Oh,  I dunno... Only about 70 other places!

The audacity of these people just floors me.  I mean, it floors me each time. I just don't get immune to this, ever.  And every time I think I have found them all, and reached the end of this story, another thread shows up. I pull on the new thread only to find it is attached to a whole set of other threads and the web just gets bigger and bigger...  I wonder how many people work fulltime to perpetrate these scams?  And I wonder what they would achieve if they used their powers for good? Because this operation, for all it's ignoble, low-lived dispicability, is actually quite clever and probably requires quite a lot of resourcefulness and ingenuity to run.

But instead, they choose to single out the sick and vulnerable, shamelessly lie to them and try to scam them out of their dwindling cash.

Bastards.

Anyhoo... back to Danlotab:

I immediately recognized the ingredient list, of course. It is our old friend formula #2, also marketed as Pileen in Pakistan, for the treatment of piles (hemorrhoids), and apparently re-branded by Oslo Health Solutions (for it is they, of course) as a treatment for -not only EDS, but also as a "guaranteed and clinically proven" treatment for Arachnoid cysts, Ascites, Multiple System Atrophy. Chordoma, Chronkite-Canada Syndrome, Teething (really!), Muscular Fasciculation, Horner's Syndrome, Lenox Gastault Syndrome, Megaloblastic Anemia, Myelodysplastic syndromes, Benign Essential Blepharospasm, Pseudotumor Cerebri, Enlarged Tonsils, Spasmodic Torticollis, Benign Essential Tremor, Kugelberg-Welander Disease (i.e. SMA type III), and Wiskott Aldrich Syndrome.

Its unbelievable, isn't it?

I do ask all my EDS friends NOT to buy this product and to spread the word that this is a scam.

...and keep watching this space. Because there is more to come on this topic.

A lot more, unfortunately.

Setting Goals: The Reading List

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

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

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

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

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

Cool.

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

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

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

A

Anna Kerenina by Leo Tolstoy

Atlas Shrugged by Ayn Rand

B

Blood Meridian by Cormac McCarthy

C

Cat's Cradle by Kurt Vonnegut

Crime and Punishment by Fyodor Dostoevsky

D
Dracula by Bram Stoker

E

Enders's Game  by Orson Scott Card

F

Frankenstein by Mary Shelly

G

Germinal by Emile Zola

The Grapes of Wrath by  John Steinbeck

H

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

The Heart of the Matter by Graham Greene

I

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

L

Loving by Henry Green

M

Madame Bovary by Gustave Flaubert

N

Nostromo by Joseph Conrad

O

One Flew over the Cuckoo's Nest by Ken Kesey

P

Play it As It Lays by Joan Didion

R

Ragtime by E.L. Doctorow

S

Shirley by  Charlotte Bronte

T

Tender is the Night by F. Scott Fitzgerald

U

Under the Volcano by Malcolm Lowry

V

V. by Thomas Pynchon

W

The Wide Sargasso Sea by Jean Rhys

Y

Yarrow by Charles de Lint

Z

Zuleika Dobson by Max Beerbohm

 

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

I hope.

An Updatey Kind of Post

I guess you guys are due an an update on me and my situation.  When I start getting phone calls along the lines of "How are you?  What's going on with the diagnosis?", I know I am overdue a personal update. After all many of my readers are my good friends, who rely on this blog for the latest in my medical woes (it saves me repeating myself!)

• I finally got my medical records from the cardiologist. It only took about 5 weeks.
   
• I have been trying to get into the Dysautonomia lab in NYC for extensive dysautonomia testing, which my rheumy fully supports. This place is harder to get into than the Freemasons!  They already rejected my prescription from the Rheumy, saying they need more information on my symptoms -but not from me (who do they think experiences the symptoms, Barack Obama?). So I am off to see #25, so I can give him a list of my symptoms and history, which he can then re-package and send to the lab.  It is completely ludicrous.
   
• We had the Middle school IEP meeting for Joe (Middle school! Bloody hell! I'm not ready!). It went well, but it was a bit disconcerting to see the amount of backup I got when I asked for an aide for him. No fewer than FIVE (5) of the people who work closely with him nodded emphatically  and said he would need a full-time aide in middle school. I am grateful for the support (and of course we got the aide). But now I am kind of terrified of middle school. And Joe will hit the roof when he learns he will have a 1-one-1!  Too bad. He will definitely need it -at least for the first year. 
  
  He is going to be in a co-teaching class: A mixture of GenEd and SpecEd kids and two teachers. One SpecEd and one Gen Ed. I think this will be a good setup for him.
   
• Grace turned 9 in May.  She is halfway to (official) adulthood now. Mother of God! I'm not ready for this!
   
• Guys may want to skip this one: I have been feeling especially shitty of late. Seizurey, headachy, numb-footy, unsteady, interspersed with short periods of feeling like my pre-seizure self. I think a lot has to do with the fact that my cycle is completely messed up. I have been trying to get in to see a new gynecologist, recommended by the rheumy, who I trust.  However this new doctor is somewhere between the Freemasons and the NYC dysautonomia clinic on the scale of 'difficulty to get into" I have considered going back to my old gyno, but I have rejected this notion on grounds that she is a bitch.
   
• (Yes. I am a bitch too. I have never denied this)
   
• I stopped taking Limbrel.  This was kind of an unconscious decision. I forgot to take it for a day. When I remembered that I had forgot, I realized that I was feeling marginally less bloaty, so I went right on forgetting! After a(nother) day or so, the severe right-side abdominal pain I had had for a month, which I had thought was an ovary, started to abate.  It has not recurred.   The rheumy says it was the right decision. Another med bites the dust!
   
• My hands are slightly better, but I think this is because the weather has been warmer.
• My good friend Wynda, who left this area about 10 years ago, returned for a visit and it was lovely to see her. She was amazed (naturally) at how big and interesting the kids have become. When last she saw them, there was only one, and he was just an eating and pooing machine back then (albeit a cute one!).
   
• I have not lost the 10 pounds I gained while on Limbrel.  I went back on Atkins for about a week, but ...Man!  -steak aside  (and I love steak, but it is expensive); it is so bloody BORING! I don't know how I did it for so long...

I'm sure there is more, but that should be enough to be getting along with. 

Limbrel Update (Limbrel Part III)

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

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

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

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

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

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

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

That took a little digging, but I found it.

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

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

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

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

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

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

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

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

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

Sometimes being a pioneer is bad.

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

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

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

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

I will keep you guys updated.

Show Business

This was a joke told to me by my uncle:

A guy walks into his local bar and is hit immediately by a dreadful smell, which isn't usually there.

"What's that smell?" he asked the bartender in disgust. A stanger; a smallish, skinnyish, unremarkable looking  man, raised his hand apologetically: "That's from me." he said. The stranger then went on to explain that he was with the traveling circus that had just rolled into town, and his job was elephant keeper.  The elephant, who didn't travel well, permanently had a dodgy digestion. Every morning, one of his tasks was to give it an enema. "you never get out of the way in time", he said apologetically (there is a lot more repulsive detailing of the man's job in my uncle's version of the joke, but you get the idea).

The local man was shocked. "You have to do this every day?  The man nodded "Sometimes twice a day". "But that's terrible!" exclaimed said the local man, utterly horrified. "Why don't you find a better job?"

Now it was the the stranger's turn to looked horrified. 

"WHAT....?  And leave showbusiness..?"

This post is in response to Dave Hingsburger's post on circus freaks. Because as my elephant story highlights, you don't have to look like a freak to join the circus, but you might get a better job there if you do. 

I have only seen the 1932 movie "Freaks" once, when I was a child (and it freaked me out then), but I have subsequently become kid of fascinated by it, particularly it's social impact, which had actually started before the movie: Some people had started to complain about the sideshows and their exploitation of people with differences, so many just shut down, ruining the livelihood of the performers who worked there.

The cast of the movie "Freaks".

Years ago, it was not considered demeaning to work as a freak in a circus or sideshow. It was an honest living and many of the people above made a good income and supported families. Yes, there was terrible mistreatment and exploitation of some individuals by ruthless handlers (isn't there always?).  However, there was also a community, friends, a sense of acceptance and belonging that came from being in a freak show that they would not have gotten in Suburbia. And -let's face it:

It was showbiz.

When the sideshows closed, many of these performers, who had visible disabilities and differences and were then left to try and fend for themselves with no skills and no community to support them.

It is quite sad.

The late Sandy Allen, who was officially the tallest woman in the world until her death last August, is one of my personal heroes. I remember seeing something about her on the telly, and it mentioned that at one point in her life, she had a job as a living exhibit in (I think) the Smithsonian Institute, as the world's tallest woman, where she sat behind a desk and spoke to people, educating them about her differences and similarities and about being kind to people who are different.  Ultimately, -although it was the Smithsonian (I think), how different is that job  than working in a sideshow?  The main difference is that there were probably more laughs to be had in the sideshow.  And funnel cakes.

The quality of this photo is not the best, but it is one of my favorite pictures of Sandy Allen, who stopped apologizing for her height and embraced it.  

There is a big difference between having a visible disability or (for want of a better word) deformity, and having an invisible one. I have learned this lesson hard as the mother of kids with invisible disabilities. Too often their differences are attributed to parenting or behavioral issues, because they look like everyone else. 

To have a visible difference is a constant reminder to everyone that you are different, and people often -for better or worse- treat you accordingly. Even when people try not to treat you differently, they still do it; -the deliberate 'not looking' thing they do or the sidelong glances. I look the same as everyone else, so I only really experienced this for myself when I was heavily pregnant and standing in a New York City subway car; how all those AB men in the seats would suddenly and pointedly fail to see me. There is now a blog dedicated to ignorant subway riders. It's great.

   

The advantage of having an invisible disability is that you can often pass for normal. This can be a disadvantage, too of course. I carry my cane all the time, and it does serve a a useful visual reminder to others that it is not ok to push past me or let doors swing back in my face (as it that were OK under any circumstances. It's not, but many people just behave that way)/

So there I was, researching sideshows and I came across this picture. The man, who is identified as Nels Nelson, is stretching out the skin of his face and he clearly has Ehlers-Danlos Syndrome.

 

I say "clearly" because skin that stretchy is a hallmark of the condition, although not everyone with EDS has it (I don't -in case you are wondering. My skin is stretchy, but not like that.)

In a way, folk like Mr Nelson, who probably could not have worked a "normal" job because of joint pain issues, had the best of both worlds: He had the income and community of the circus/sideshow -providing he wasn't exploited. Like the elephant keeper, in my uncle's joke, he was still "in showbiz" and yet, unlike some of his colleagues, he could still go out in the town and blend reasonably well.

And so I got to thinking about Ehlers-Danlos Syndrome and the circus: 

The two most obvious differences in people with Ehlers-Danlos Syndrome is hypermobility of the joints and stretchy skin.  Many acrobats,  and probably all contortionists more than likely have EDS or a similar condition of hypermobility.

It is recognized in the acrobatic schools of China,  where there are many hypermobile people (it's genetic and a dominant gene) and a strong tradition of acrobats, that the performing life of most acrobats is short -the joint pain and arthritis usually becomes unbearable by the time the acrobat is in their mid-to-late twenties.  

...unless they happen to be this guy, of course. Wang Jiangsheng is 83 years old. He reminds me a little of me great-uncle Seamus, except Seamus was 78 and used to put both his feet behind his head.  it was his party piece.  ...but I digress.

I thought the solution that Mr Nelson, and more recently Garry Turner, who is probably the most famous person with EDS who is "out" about his condition, well he should be, he is famous because of it (Michael Phelps is -in my opinion- the most famous person who has Ehlers-Danlos Syndrome and has chosen to keep that fact in the closet) is that -unlike the acrobats, they found a way to exploit their condition without excerbating it. Repeated stretching and contorting will more than likely lead to The Pain of EDS, which is very nasty and difficult to manage. Of course many of us don't stretch and contort and we get The Pain anyway. We're just unlucky.

Now, I don't know if Nels Nelson had The Pain that is usually associated with EDS. Garry Turner has come out publicly and said that he does have it and he takes very powerful drugs to manage it; as most EDS-ers must.

 Many people with EDS don't like Garry Turner. They think he paints a false picture of the condition, that people think we can all do stuff like this, which -of course, we can't. Garry officially holds the world record for stretchiest skin. His skin is ridiculous, even by EDS standards.  

There are many people out there who work as acrobats or contortionists and probably have EDS but they don't know they have it, don't care they have it or don't care to know if they have it or not. However they make a living by exploiting their EDS. Most don't (can't) do it the safe way, by just stretching their skin. Most exploit the other hallmark difference of EDS, hypermobility.

Now, I wold bet money that this person, or Snake Girl and indeed most performers of this ilk has EDS or similar. And if they know they have it, know the risks and dangers and are legal adults, I have no problem with them choosing to exploit it to make a living. I expect many, if they were informed and educated about EDS would still choose to stretch and perform, either because they like the attention (showbiz!),  or could not make a similar income any other way. Snake Girl supports her entire extended family back in South Africa. I hope they remember that if she ever becomes disabled by EDS.

The advantage of EDS is that you can turn the freakishness off. It can be an invisible disability, expecially when one is young and using no assistive devices. When this young lady puts both feet on the ground, she will look like any other person.

 

I wonder if it is a sign of ...something, but freak shows, side shows and other strange and unusual acts and oddities are making a comeback. Garry Turner aside,  most of the acts don't feature people with deformities who are there just to be gawped at. Most of these acts feature performances. Of course of of the performances involve people hammering nails into themselves and picking up heavy objects by attaching them to their nipple rings. ....sigh.

Nowadays the "freaks" choose to be freaks.  They spend money for it.

...while Lobster Boy's daughter, who comes from a long line of carnival performers, is unemployed and  misses the limelight.

Who are the real freaks?

The people who pay money to see these shows, that's who.  That was always the case. Johnny Eck, once famously said (after his retirement from showbiz) ""If I want to see freaks, I can just look out the window."

Me too.