One Sick Mother

What Would Milton Do?

I guess the world and it's mother knows by now that the Milton Hershey School turned away a student because he is HIV positive.

I cut & pasted this directly from the Milton Hershey School's own website.

Every day children are born into neighborhoods fraught with extreme poverty and limited opportunities. Many parents are unable to provide their children with the support they need to reach their potential. This is the reality of at-risk children in communities throughout the nation. Milton Hershey believed that providing children from families in need with a first-rate education and the support of a nurturing and caring community would enable them to break the chains of poverty.

I guess they forgot to add the following line

...But only if their HIV status is negative.

I guess one teen won't be reaching his potential because they are afraid he will have unprotected sex with another teen. At least, I hope they think "another teen" and it's not a case of a faculty member who doesn't want to use protection. Seriously. I was raised in an orphanage. You have to question these things. 

Milton Hershey founded this school because his own schooling was quite fraught. He wanted to create a place for disadvantaged kids to learn.

I think being HIV+ is a pretty big disadvantage for a kid to have.

I wonder what Milton Hershey would say or do if he were around today?

 

Would he support the school's decision, I wonder?  What do you think?

"The value of our good is not measured by what it does, but by the amount of good it does to the one concerned."
                                            -Milton Hershey

 

10 Myths Regarding Autistic Spectrum Kids

 Recently. I was clearing out my inbox, which has stuff in there going back to 2002 (if I haven't responded by now, well, I guess I am never going to!) and I found some hilarious e-mails and exchanges I had in relation to a little fun exercise I ran years ago across some special needs message boards, which were entitled "The Golden Crock Awards" . We accepted nominations from parents of the biggest "crock" they were handed by a professional regarding the evaluation or diagnosis of their special needs child. There were a few doozies in there. Some I found/remembered:

• "He can't have Sensory Integration Dysfunction because he eats potato chips"
   
• "He can't have Autism because he makes eye contact"
   
  
• "She can't be autistic because she smiled at me"
    
• "He can't be autistic because he is affectionate towards you"

Now, all of these comments were made by professionals: psychologists, teachers, therapists and the like. I got to thinking if the professionals are still saying (untrue) stuff like that, there still must be a lot of myths floating out in the general population. So this is my little attempt to bust a few of them. There are a few  "submyths" in there that I thought merited special mention, too.

I know there are a lot of blogs and articles out there about the "myths of Autism" and I read a few of them. I don't want to duplicate anyone's work. The problem I have with most of these other articles is that they talk about this entity "Autism" almost as if it were some kind of entity in its own right.

It isn't. 

When I use the term "ASD Kid" herein, I am referring to children with an Autistic Spectrum Disorder. This could include kids with the diagnosis of Autism, Autistic Spectrum Disorder, Autistic Disorder,  PDD-NOS (AKA Atypical Autism), Asperger's Syndrome and High-functioning Autism. I am not sure if this list also applies to Rhetts Syndrome or CDD because I don't have enough direct experience of those disorders, even though they are also Autistic Spectrum Disorders.

Myth 1: ASD kids are Loners

Submyths:

ASD Kids Don't Make Friends

ASD Kids Can't Make Friends

ASD Kids Don't WANT Friends

These myths seem all to be predicated on a single incorrect assumption: That an Autistic spectrum disorder only impacts introverts (and is then compounded by another assumption that introverts don't want or need friends). Extroverts seemingly get off scot free in this myth. You know, if that were true, we could shortcut a lot of the research and just concentrate on the differences between the introvert and extrovert personality. That way, we would probably have Autism solved in about three years.

But Autism does not discriminate based on personality. Extroverts are just as likely to be impacted. The difference between introverted and extroverted ASD kids is that the extroverted kids will attempt way more social interaction. They just usually go about it all wrong!  Joe's preferred method of initiating play when he was a non-verbal little tyke was to charge up to an unsuspecting kid and bodyslam him/her.  Needless to say, this method -while an excellent way of gaining someone's attention (and their Moms!),  was a poor way to initiate positive interaction. Joe needed to be taught how to approach kids and talk to them. It was not something he inherently understood, as most regular kids do.

The very sad thing about this series of myths is that they can become self-fulfilling. ASD kids can become frustrated after repeatedly failing to connect or bond with other kids. Or they can become sensitive to other kids' remarks about them being "weird" (etc. etc. ad nauseum). Because let's face it: All kids can say mean things, whether intended or inadvertent, and eventually the ASD kid just won't be able to take the rejection and pain, and will opt to stay indoors and play videogames.

Another thing that can happen -especially to the introverted ASD kids, is that they realize a little later in their childhood that they actually DO want friends, but starting late, they have difficulty breaking into the interactions, social circles and cliques that have developed amongst their peers while they were off in AutismLand.

Despite all this, many kids with an ASD can and do make friends.  They often tend to have one or two close friends rather than a large circle of friends, and they generally tend to prefer one-on-one or small group activities as opposed to large group activities.  I am generalizing here (which I hate); there may well be the social butterfly Autie out there who has lots of friends and thrives in large groups!

 

Myth 2. ASD kids have no sense of humor

Submyth: ASD Kids Don't Smile or Don't Really Laugh.

Yeah, right! The kid on the right,who is trying to "sneakily" smoosh the icecream into his sister's face, is autistic.

Many ASDs kid do have a good sense of humor and often respond very well to humor from others. Many of these kids will have quite a dry sense of humor, and while they may not get certain jokes, they can floor you with some other forms of wit: including sarcasm! (I know! Free mythbuster! Some ASD kids understand and use sarcasm!)

ASD kids do laugh and smile. They just may not laugh or smile at you.

Get over it.

Myth 3. ASD Kids Can't/Don't do Sports

While many kids with ASD can have problem with muscle tone and hand/eye coordination, some can be quite sporty and coordinated. Remember Jason McElwain, that kid who scored all those points in basketball?

Of course, a lot depends on the sport and the support of the team and coaches, but having Autism does not mean one is automatically excluded from all sports, ever.

 

Myth 4. All ASD kids Have Special or Amazing Talents (like Rainman)

Submyth: Aspie Kids are "Little Professors"

Wrong on both counts. It is perfectly normal and acceptable to have Autism and NOT have any super savant skills. Yes, some ASD kids have great memories and splinter skills at directions or math. However the estimated number of true Autistic Savants is very small indeed. it is thought that there are approximately TEN (10) individuals in the entire world who are are true savants.

Some ASD kids are very smart, and some will appear very smart when talking about their special interest, but in truth, many ASD kids simply have a regular IQ with a hearty side of Autism.

And some are mentally retarded.

And while many Aspies do use language a little differently than the general population and many will talk your ear off about all sorts of things from lightbulbs to the Milky Way, Aspie kids are kids first and Aspies second. It is a mistake to forget this.

Myth 5. ASD kids Have No Empathy

This myth is bullshit, pure and simple. ASD kids can and do have empathy. A lot of the time their problem lies in determining when empathy is appropriate, because they have such a hard time reading facial expressions and body language. So while an Autie may understand a very clear signal, like crying, he may misunderstand a more subtle (to him) signal, such as a grimace of pain. Once they gain some skills with regard to reading people (or have a situation explained to them), some ASD kids can become remarkably empathetic. I talk a little bit more about this here.

Myth 6. ASD Kids are a Result of Bad Parenting

More bullshit. Many parents of ASD kids also have neurotypical children. So how can that be explained?  Both parents just spontanously decided to use a completely different parenting style on the other kid(s) Think about it. That theory just makes no sense.

Myth 7. ASD kids are Not Affectionate.

Not true, although how they show affection can vary hugely:  Contrary to the sterotypes, some ASD kids can be huggy and kissy.

 

However, most will relate to people differently and will show their affection in ways that are not easily understandable to a neurotypical... anyone.

For example, many ASD kids may relate to people through objects. An ASD child may show you huge favor or affection by giving you something special (to him) or by allowing you to hold or stroke their favorite thing. You just may not appreciate the gesture (which in turn might insult the child, and we are back to the self-fulfilling thing again).

Myth 8. All ASD Kids are Touch Adverse

It is true that some (many) Auties are touch adverse, because of tactile defensiveness.

Yet even the touch adverse kids may like certain kinds of touch. Grace used to jump out of her skin if you gently touched her or even if you brushed against her, but she loved to be held tightly or massaged. As Temple Grandin said "light touch is alerting, deep touch is soothing".

 

Myth 9. ASD kids Don't (Can't) Tell Lies

Most can and will. However, they usually stink at it.

 

Myth 10: ASD Kids Don't (Can't) Make Eye Contact

That whole "no eye contact=autism" equation is a TOTAL myth. For starters, bad eye contact is not exclusive to Autism and is not a hallmark of the condition. I don't have Autism and I had a problem with eye contact as a kid. Heck, I didn't learn eye contact until a Dublin street musician taught me the value of it one summer afternoon when I was 19 (...and yes (Rob) That was all he taught me). I never saw him again. I don't even know his name -but I am forever grateful to him.

And while it is true that many ASD kids can have problems with eye contact, many can develop the skill (or learn to fake it) with training or with people they trust.

And there are some ASD kids who can and do make great eye contact with almost anyone. So don't let me hear anyone say "He can't be autistic because he makes eye contact". It is not a hard and fast rule.

oh and ...Hello?

 

I remind you again: If you've met one kid with Autism, you've met one kid with Autism.

 

Bonus myth: You Can Tell if a Kid Has Autism (or Not) Just by Looking

If you go back at the photographs in this post, -just the pictures, not the text (because the text will tell you). Can you tell just by looking, which kid or kids have Autism and which don't?

Be honest: You can't.That's why it is called a hidden disability.

So the next time you see a "spoiled" and screaming child while out-and-about, please remember -before you judge- that the child could have a hidden disability such as Autism.

Please Note: All text and images in this post are copyright (c) One Sick Mother, 2001-2010 and may not be distributed or re-used without express written permission from the author.

Why, Indeed?

Recently, I was talking to someone who has read a lot of this blog, particularly  the pieces I wrote on herbal remedy scams. This person knew that these pieces (most of which are listed in the top left column of this blog, if you are curious) involved hundreds of hours of research and documentation and they asked me the simple question:

Why?

Why put so much effort into this?  It wasn't my job, I didn't get paid and -apart from the people who commented or e-mailed to thank me (and some to challenge me)- I got no real recognition for this effort.

Funny, but "why" It isn't an easy question to answer.  I could list plenty of things I didn't want out of this work: I didn't want payment. I didn't want thanks (although it is nice to receive), I didn't want recognition. I guess I wanted...

...Justice. 

That's probably the best single word for it, but it still doesn't really explain it all, because justice for whom? And how does putting this stuff on the Internet achieve that aim?

Hmmm.  I was at a rare loss for words.

I have been pondering these meaty issues a lot; -questioning my own motivations and the workings of my own mind, which are not always very obvious to me (and I pity my friends). After a day or two,  this poem I learned in high school came meandering into my head. The first line did, anyway:

"Since the wise men have not spoken, I speak that am only a fool"

That's sort of it. I had to speak because nobody else could or would.  I dug up the rest of the poem, to see if it fit, too. it is below. I think it is kinda-sorta-not-really suitable to my situation. At the time of writing, Pearse was in prison facing execution for his role as a leader of the 1916 Easter Rising in Ireland, when the Irish equivalent of the Declaration of Independence was um... declared. Actually It was proclaimed.  By Pádraig Pearse himself, if you don't mind. Not sure the difference, exactly but there you go. If he was still around, he could probably tell me. And correct my punctuation.

In this poem, Pearse is defending a lifetime spent as a campaigner and a rebel and his decision to lead a rising against the British. And here I am trying to justify a bit of research. Our situations aren't very comparable, really. Yet I can definitely identify with Pearse's idealism and willingness to speak out against perceived wrong.

The Fool

By Pádraig Pearse

Since the wise men have not spoken, I speak that am only a fool;
A fool that hath loved his folly,
Yea, more than the wise men their books or their counting houses or their quiet homes,
Or their fame in men's mouths;
A fool that in all his days hath done never a prudent thing,
Never hath counted the cost, nor recked if another reaped
The fruit of his mighty sowing, content to scatter the seed;
A fool that is unrepentant, and that soon at the end of all
Shall laugh in his lonely heart as the ripe ears fall to the reaping-hooks
And the poor are filled that were empty,
Tho' he go hungry.
I have squandered the splendid years that the Lord God gave to my youth
In attempting impossible things, deeming them alone worth the toil.

Was it folly or grace? Not men shall judge me, but God.
I have squandered the splendid years:
Lord, if I had the years I would squander them over again,
Aye, fling them from me !
For this I have heard in my heart, that a man shall scatter, not hoard,
Shall do the deed of to-day, nor take thought of to-morrow's teen,
Shall not bargain or huxter with God ; or was it a jest of Christ's
And is this my sin before men, to have taken Him at His word?
The lawyers have sat in council, the men with the keen, long faces,
And said, `This man is a fool,' and others have said, `He blasphemeth;'
And the wise have pitied the fool that hath striven to give a life
In the world of time and space among the bulks of actual things,
To a dream that was dreamed in the heart, and that only the heart could hold.

O wise men, riddle me this: what if the dream come true?
What if the dream come true? and if millions unborn shall dwell
In the house that I shaped in my heart, the noble house of my thought?
Lord, I have staked my soul, I have staked the lives of my kin
On the truth of Thy dreadful word. Do not remember my failures,
But remember this my faith
And so I speak.
Yea, ere my hot youth pass, I speak to my people and say:
Ye shall be foolish as I; ye shall scatter, not save;
Ye shall venture your all, lest ye lose what is more than all;
Ye shall call for a miracle, taking Christ at His word.
And for this I will answer, O people, answer here and hereafter,
O people that I have loved, shall we not answer together?

Doctortutes Part II

I got a lot of feedback on the last piece I wrote on this subject  before; -not here on the blog, but through Facebook and e-mail. A lot of my sick friends were intrigued and thinking about giving it a try.

That had not been my intention.

I had planned to slam the whole practice. However, as my one experience with it had been mostly positive, I couldn't.  I can't report dishonestly and slam something that kind-of worked for me.

But this is the conversation I have been having with my friends:  Say you do ask a question of a doctortute over the internet and you get some suggestions/ ideas:  What are the next steps?  I remember after #29 contacted me through this blog with a suggestion that I be tested for dysautonomia, #25 was VERY suspicious when I  told the story to him and raised (again) the dysautonomia question. "Where did this come from" he asked.

"From you. Remember very first time you saw a (small) seizure, you said that looks like some kind of autonomic dysfunction. Don't you remember?" (and it was exactly what he said).  Isn't dysautonomia the same thing?  He reluctantly  agreed.

And said he would write the referral to the dysautonmia research lab here in town.

And didn't

So although 29 was not a doctortute, the end result would probably be much the same if she had been: 

Nothing happened.

You see, most doctors have largish egos. And if you go to your doctor and say "this random MD on the Internet who didn't examine me suggested I might have X " (which you didn't think of), most doctors will be (in turn):

a. Insulted

b. Skeptical

c. Defensive

d. Stubborn

 

...and will probably refuse to follow the doctortute's advice -no matter how sound-  for one or more of the above reasons.

So really, doctortutes may ultimately add to the confusion and frustration many of us experience in trying to find a correct diagnosis, instead of helping it.

 

Something I forgot to mention in my initial post on doctortutes is the high-class version of the profession. Now obviously, these aren't known as "doctortutes" either (although maybe they should be). They prefer to call themselves "concierge doctors" or  "boutique doctors". They charge an annual retainer plus their time  and deliver sterling and individualized service for those who can afford the thousands of dollars a year they cost.  Reading the articles on these types of practices, see a NYTimes piece here  and another interesting article here, the winning formula seems to be a direct money connection between  the doctor and patient (client?  ...john?).  No insurance. No Medicaid. No medicare. This had many advantages for the doctor:  They can cut down on administration staff for starters.  Also, because they are getting a much higher return per patient, they need much fewer patients to break even. This in turn means even less overhead costs: fewer nursing staff and smaller office space.

Win for the doctor.

 

The patients seem to get what they pay for: No waiting! Fast, individualized service, doctor management of outside players, such as test facilities, specialists and  hospitals. And house calls!

I also suspect if a paying-through-the-nose patient presents with an unusual or difficult to diagnose condition, the doctortute won't say "I can't help" or "see a shrink".  Presumably the doctortute, aware of how his bread is buttered, will actually advocate for the patient with specialists and dig until he gets to the bottom of the problem. This may cost the client big bucks, but I'm guessing most have it to spend.

Win for the patient.

(and so further increases the divide between the "Haves" and the "Haves-nots")

 

Of course one cannot write an article on doctortutes without mentioning the ultimate doctortute of our time: Dr. Conrad Murray.  As everyone in the universe, and probably a few without knows:  Dr Murray was Michael Jackson's personal physician and was being paid 1.8 million per year by the entertainment company AEG Live to take care of their investment: i.e. Michael Jackson.

I was thinking about this today in the shower (I get all my best thinking done in there) and it struck me that the pressure on Dr Murray must have been staggering;  -although it was considerably less than the pressure on Mr. Jackson.  Let's think about the some of the numbers:  50 concerts, 750,000 tickets sold for a (guesstimated) £56 billion, and then all the sales from the inevitable post-concert CDs and DVDs. Huge amounts of money  and livelihoods centered around the ability of a single person to get up there and perform his heart out again and again and again. For fifty concerts. Not to mention the planning, rehearsals,  travel and promotion time.

And it was Dr Murray's job to ensure MJ could do it.  AEG Live, the doctor's employer, paid him well: 150,000 per month plus expenses to keep MJ performing.  I can only imagine they had  him under a fair amount of pressure to perform this mission to their standards.  And they aren't medically trained.

Then, as we all know,  Michael Jackson died. Suddenly a lot of people were out of work or were out huge sums of money. Dr Conrad, for his part,  was immediately under a ginormous cloud of suspicion, which has never lifted and has had his name dragged through the mud in the media.

Over the next few months, AEG Live went into overdrive: They produced the memorial service. They announced the rehearsal concert footage and sold the movie rights for a large sum. They announced refunds for the tickets sold, but also said that fans could choose NOT to request a refund, but instead to request the original ticket sent to them. For the full price.

Genius.  Sell the tickets for full price without putting on a show.  Cash in on fan zeal and grief for the price of a piece of paper (plus P&P).  And NOBODY seems to have questioned or criticized this. There is no released data that I could find on how many fans took the refund and how many chose the world's most overpriced memento.  I would really love to know. Mind you, if only 10% of them chose to receive the tickets, that would have put AEG Live well into the black for their initial investment in MJ (estimated to be about $25 million US dollars -note most  other figures are in Sterling). Add in the insurance (£17 million), the  movie deal (£35 million) and the MJ exhibit at the O2 Area in London (£17.50 sterling for a standard adult ticket, £56.50 for the "VIP package"), and  they are turning quite a nice profit on the whole sorry business, with very little further outlay.

While in the meantime,  Dr Murray has lost his shirt, is unemployable, universally hated and facing criminal charges.  Hmmm.  In retrospect, maybe Dr Murray should have charged more for his services.  Because although he clearly wasn't calling the shots, he was the one left holding the (doctor's) bag.

Let his story serve as a warning to all budding doctortutes out there.

Doctortutes

Doctortutes. I made that word up, in case  you haven't guessed. It is not an amalgamation of  the words "doctor" and  "substitutes".  It is a combination of "Doctor" and  "prostitutes".  Doctortutes:   Doctors who pimp themselves out for money. 

Now it may be argued that pretty much all doctors; -except maybe the ones without borders, charge money for their services, so therefore all doctors could be termed doctortutes. Not so. Charging a fair or market price for a recognized service, and operating out of a regulated environmentt, such as a hospital or private practice,  as most doctors do, is accepted, legitimate business practice, not doctortution. But trawling the streets, classifieds or the Internet soliciting clients IS Doctortution, in my opinion.   And quite a few doctors are engaging in the practice (pun intended):  Some are lone operators with flash, smooth-talking  websites; -the Internet equivalent of acrylic platforms.

But most don't bother with these costly "cheap" tactics.  Most use pimps.

Yes. I said it: Internet doctor pimps.  Who needs science fiction when the real world is right here? 

Here is the story:

Just the other day, I was noodling around the Internet, researching something (probably a scam), minding my own business (sorta), when a pop-up window appeared on my screen (note to self: upgrade pop-up blocker).  The window advised me that there were twenty doctors standing by waiting to answer my medical question, and invited me to type it into the box.  So for laughs, thinking this will stump all 20 of them I typed in  "why do I have a seizure after I eat a meal?"

And then another box popped up, asking me how much I was willing to pay for this answer?  And the term "doctortute" hit me. I started to save screen shots and write this piece...

..and then my feckin computer crashed!  I lost all the screenshots and everything else.  Bummer.

My computer mysteriously came back from the dead a day and a half later after I decided not to finish my cliffhanger story about the beginning of 2010. Apologies to my regular readers, but I took that crash as a sign, even though I know some people may suggest that maybe it was the internet doctor pimps and the doctortutes who might have actually have been sending the "sign", as that is what I was working on at the time of the crash. I don't believe it.  Conspiracy theories  don't impress me any. (while superstition apparently does...  I'm Irish. What can I say?)

So last night I went back on the hunt for the doctortutes. I found some at justanswer.com, which seems to be one of the biggest pimp sites; supporting not only doctortutes, but also plumbertutes, mechanictutes, lawyertutes (OK that's nothing new) and various other "tutes" who will answer questions in exchange for your cold, hard credit card number. 

 
It's actually not a bad gig for a "tute", who I imagine is playing Solitaire or Farm Town in-between answering questions.

I didn't manage to find the popup that had found me the last time (I have no idea what I had been doing to deserve that!),  but on the main site there was a space to input my question, with 24 doctors online, apparently waiting eagerly to answer it. 

 

I couldn't resist. I knew it meant committing funds that I don't have (can you claim blogging expenses on your tax returns? Honestly, legitimate journalists have it so much easier than Sick Mothers), but I really had to see where this would lead. I figured that even if I didn't get a viable medical  answer  out of this (and I didn't expect one), I might at least get a good story for this blog, albeit at rather a high price. And I kind of liked the idea of exploiting a dotortute in order to write about him here -which is probably something I should address in therapy (I'll put it on the list).

 

So I went for it.

I typed in my question:  "Why do I have a seizure after I eat a meal?"  There was a followup question of what I had done about it, and I wrote "tried multiple AEDs, most of which made the problem worse".  And I hit "Enter"

Then we get to the nitty gritty: 

 

I was told "Dr. P "wants to answer my question" and I was asked how much I wanted to pay for this answer? I was given a few price options and  prompted to the middle one, which is  $38.  Would I pay $40 to have that question answered? Hell yes! I would pay a lot more than that.  Of course, I figured their definition of a satisfactory answer might differ from mine. However, the curiousity was killing me, so I continued on.

The site had said that I wasn't going to pay unless I was satisfied with the answer.  It then  advised me that it was going to take a "deposit"  against this answer. OK fair enough. Except the 'deposit' was the entire amount, placed into "my account"  Hmmm.... 

 

Well; in for a penny, in for 38 dollars: I continued on.  I had been  promised that someone called "Dr P" had been standing by to answer my question. Then Dr P was suddenly  gone..

 

...and  Doctor Ozz was looking at it.  I guess he passed it up too. Finally someone called "Mysticdoc" decided to take my question. That was worrying.  I wanted a real doctor, not a mystic!  Then I looked at his profile, and realized that "Mystic" was probably meant in terms of Mystic, Connecticut, as opposed to "Mystic Meg"

 

Thank Christ for that! Because if it was anyone connected to her, that would be downright scary...

 

Mysticdoc actually came back with some intelligent questions.

 

 Do you have any other medical condition?

What medication you are taking currently?

How do you know these are seizures?

Association with any particular food?

Any family history of seizures?

What tests have been done so far?

 

These questions I answered equally intelligently, with the honest facts as best I could remember and summarize  them (what tests have been done? OMG  that's a tall order to remember on the fly!)

There was some back-and-forth. The way the system works is this: the "tute"  doesn't get paid until the client accepts the answer and the client can ask follow-up questions related to the answer (but any questions on a "new" matter would be another chunk of change) . Therefore, the doctortute is incented to give a satisfactory answer. It would be highly unlikely that I would receive the two most popular answers I get from regular doctors, which are

a. "I can't help you"

b. "have you seen a psychiatrist?" (ie. it's all on your head)

Now, although I have argued against this in the past (here and here if you are curious),  these are both considered perfectly legitimate responses in traditional medical practice, where doctors are not actually required to help you and they still get paid for the visit and their time. However in doctortution, the compensation is directly tied to a satisfactory answer. The  "patient" (I have to use this term loosely here. Hey, Let's keep in theme and use the term "john" ) can  refuse to pay if an unsatisfactory answer is given.  Yes, the pimp still has your money, but the john can either go to another doctortute, or can start the process to have the money returned (and I am not sure how easy this process is, but it is there).  It is an interesting change to the dynamic, don't you think?  Much more customer oriented.

"Mysticdoc" gave me two good pieces of information I think I can use:

1. Sodium and calcium (both minerals with which I have had issues  in the past) play a huge role in seizure pathogenesis.

2. A  functional MRI (fMRI) would probably be a good test for me to see what is going on in my brain. I asked him if the MRSpect, the scan that #30 is planning to do as part of his study is the same thing, and he said no. The fMRI would be better. Hmmmm. 

Funny thing is this: #25 had mentioned performing a fMRI a few years ago, them he changed his mind because "nobody would read the paper". Fuck papers! This is about getting my life back, not about papers.

So I figured Mysticdoc had earned his $40 and I paid him (love that they leave space for a tip!) and allowed him to move on.  I declined to leave a deposit against any future questions I might want answered. No free money from me!

 

Then I thought some more: You know,  with the discounts many HMOs and other insurance companies negotiate, a regular visit doctor visit probably pays about the same as one of these internet consultations, but with much higher overhead (offices, staff, insurance). So for the doctors, doctortution is quite a good gig. They can hang out at home in their jammies, with one eye on the telly, picking and choosing which questions to take, getting paid directly for their time.  It's not a bad deal for them. And it answered the question I had when I first saw the site: Expecting people fresh out of med school, I had been surprised to see some of the doctors lurking sported lots of qualifications and years of experience.  I guess if you are a doctor, this  is a handy way to use your qualifications part-time to top up the old income: You know, pay the country club fees, alimony  and your daughter's speeding tickets.

Is doctortution a good thing?

I don't know. I think it is an interesting development in the healthcare system, and it satisfies our need for instant gratification. Of course, an Internet doctortute is no substitute for an actual physical examination or for someone's regular doctor and -needless to say- doctortutes can only advise, not diagnose or prescribe. But I think, as a fresh and unbiased set of eyes  on a case, doctortutes might have their (limited) use. I know my experience has spurred me to go find a new neurologist, a seizure expert this time.

I'm losing count, but I think this will be #31. Maybe that will be the charm?

My Ganglion Cyst Story

It started with a cat.

I bet you weren't expecting that, were you?  But as far as we can figure, looking back and piecing together events to injuries: a big, mean cat named Whiskers may have started the whole series of events in motion, simply by being a cat.  And living in the wrong home.

Whiskers wasn't a bad cat. And he probably wasn't mean at all, because cats don't know concepts like "mean", " bad" or "fair". Cats know things like "food", "sex" and "territory".  And other cats.  And Whiskers was a big cat, white with black and gray patches; an un-neutered male cooped up in a little apartment halfway up a high-rise building in a very, very bad part of town. In that apartment also lived my aunt and her four small kids. Sometimes her husband showed up too, but is was mostly her and the four kids. And very often: me. Me in my teenaged & alienated-hating-everyone years used to visit her quite often, and she was good enough to house my sullen and disagreeable self in her already cramped place.

Whiskers wasn't built to be an apartment cat. He  was big, restless and very smart. He would have been ideal in a farm or somewhere where he could roam free and kill small things (and bigger things!). Although I imagine the farmer would have been be quite confused at his ability to use the toilet  (but maybe Whiskers would have forgotten that skill on a farm).  Whiskers would have thrived in the countryside. Instead, he was stuck in the wrong place;  a great hunter with no grounds and no prey; surrounded by squealing children with grabby hands. He seemed to spend his waking house oscillating between boredom and torment. 

Things continued in this vein for some time until I befriended the girl in the apartment next door to my aunt's.  Not that Whiskers had any problem with Jenny at all. He had a problem with Jenny's un-neutered (and considerably smaller) male Tom cat named Tiger. Whiskers and Tiger had lived in relative ignorance of each other's existance until I started spending a lot of time in Jenny's place. I guess Whiskers got a whiff of Tiger from me, and decided it was War.

He started trying to sneak into Jenny's apartment at any opportunity he could get.  Unfortunately, teenage girls are not great at following directions like "close the door"; and as we were in and out of each others' flats very frequently, opportunities presented themselves relatively often. Whiskers outweighed little Tiger by about 40%, so no-one -including Tiger- had any doubt how a match-up between them would end. Whenever Whiskers managed to get into Jenny's apartment I had to get him out as quickly as possible, because Jenny and her mother both turned into blubbering masses of panic whenever they found him stalking down the hallway of their apartment.

So Whiskers didn't like me very much. Especially when I tried to deter hm from his Tigerhunting missions. Once he wrapped whimself around my entire head, sinking in twenty claws and several teeth. Amazingly, he missed my face, but I was picking blood out of my hair for ages afterwards. And the One Time... The time that we finally learned to close the door: Whiskers opened his big mouth as wide as it would go and clamped down hard on my left hand.  And wouldn't let go. I had at least 5 puncture wounds on my hand, front and back, including one right below my thumb, just before hand meets wrist.

Ouch.

My hand swelled up like one of those surgical gloves when you blow it up. I had to explain many times in the ER: "No. It wasn't a dog, it was a cat.  ...Yes I know that looks too big to be a cat bite, but it was definitely a cat. I was right there and I know the difference.  ...I know the cat! His name is Whiskers..."  That usually convinced them because no-one in their right mind would name a dog "Whiskers".  Not that it suited the cat, either, but nevermindaboutthatnow. There were young children involved in his naming, and he had been much cuter as a foofy little kitten....

I was given several shots and the wound was cared for on an outpatient basis and my hand seemed to heal quite well. I still had several small scars (and still do) but there seemed to have been no real damage done (luckily) and I more or less forgot about the incident, which happened sometime in the early 80s; -in case you are curious about the timeline here.

Sometime in the late 80's I started noticing that my left hand hurt when I moved it a certain way, particularly if I extended it and put any load on it, like pushing open a door, or leaning on my hands on a table. I also noticed that if I flexed my wrist forward, this odd bump would appear, right in the place that hurt while doing those tasks I just mentioned.  I didn't think much of it. I just started using my right hand to push open doors.

It got worse.

By the early 90s it was bothering me most all the time, so I asked my then doctor (#1!) about it. Oh he said, that's a ganglion cyst. they are harmless. Smash it with a book and it will go away".

So I read up a bit about it, and sure enough the old-time remedy for a ganglion cyst was to hit it with the family bible or other heavy book. We chose the New Doubleday Cookbook as the heaviest book in the house at that time. I held my wrist extended over the kitchen counter, cyst bobbled out as much as it would go, while Himself thwacked my wrist with the book.

He didn't hit hard enough the first time. The second time, the cyst seemed to break, although, with the additional trauma from being thumped twice with the book, there was no relief to be had at all.  In fact, my wrist it hurt like a bastard for days afterwards.

After the bruising faded, It did seemed to get a bit better for awhile.

Except it came back a few years later. We were now in the mid-90s and I had changed doctors. My new doctor (#2, who is still my primary doctor) emphatically did not recommend a repeat episode of the book-smashing exercise. He suggested I see a surgeon. Then I got pregnant with Joe and everything was put on hold for awhile.

When Joe was about six months old I almost dropped him. I realized (too late) that my cysty wrist had weakened to the point where it couldn't support its share of a 20lb baby. Luckily I was standing near the couch at the time, so Joe fell down onto the seat cushion in a semi-controlled manner. It dawned on me  then that this wrist situation was getting no better and Joe was certainly not getting any lighter. So I decided to have a surgical evaluation.  It was late 1998.

I can't remember how the subject arose with my ob-gyn, but as he had recommended a good pediatrician, I guess I asked him to recommend a good surgeon.  He suggested a prominent hand surgeon, one who had operated on his own hand (not sure what for), and I went along to be evaluated.

They did a series of evaluation in the hand surgeon's office, which I have not seen before or since (and I have seen a different hand surgeon since) They tested my range of motion relative to my other hand, and my grip strength among other things. They recommended surgery.

The surgery was done on an outpatient basis in the hospital and went very well. The surgeon explained that my cyst had been like an iceberg. Only a tiny portion was visible when I extended my wrist. The rest of it was many lobed and had insinuated itself throughout the bones of my wrist, slowly forcing them apart. He said that had I done nothing, I would have eventually lost use of that hand.

He said that I also had a torn ligament in that wrist, and he thought the ligament had been the source of the problem. I asked him how I could have torn a ligament in my wrist? He shrugged. I asked him to point to the place where the ligament was torn. He pointed. It was right where one of Whisker's teeth had penetrated all those years earlier. There was (is) still a little scar there.

(Oh.)

I asked if he thought a cat bite many years earlier could have been the problem? He shrugged again. "It could have been. These things can grow very slowly. Although hitting it with that book certainly didn't help matters. I think that made it spread more."

(Oh.) (again.)

It took awhile for my hand to recover after the surgery. I had quite a lot of pain and I lost a lot of range of motion. I was recommended a very excellent hand physical therapist, who helped to recover post-surgery. It has now been 11 years since the cyst was removed and I have never had a lick of trouble with it since.

Of course, now I just said that and something will happen...

I told this story because I get a lot of hits from people looking for non-surgical solutions for ganglion cysts. I get a lot of hits for known scam ganglion "treatments". I hope some of the people who are looking for these treatments will find this story and know two things:

1. Most of the "treatment" products out there are scams. See below for a list of the ganglion cyst scams that I have previously outed here on OSM.
2. Surgery works. I know it isn't an option for everyone, but I do urge anyone with a painful ganglion cyst not to listen to quacks that say there is no treatment or to hit it with a book (don't!). Instead, seek evaulation by a good surgeon. There are more treatment options than ever available these days. The only regret I have surrounding my surgery is that I didn't have it sooner. I walked around with a painful problem for almost ten years until it became virtually untenable.   

Here is the list of scam products I have found for "Ganglion", The product name is linked back to their site. If you click on the company name,  you will be linked back to my article on the particular company selling that product and why it is bad. Please be aware that most of these companies advertise directly on WebMD and other legitimate medical sites. This does not make their products  legitimate. Contrary to what WebMD would like you to believe, they do not verify all of their advertisers, due to a loophole in their advertising policy. 

Ganglitab by Oslo Health Solutions (OHS)  -more on OHS, detailing the kind of garbage they put in some of their preparations here  and a little more info on them and the psychology of scamming here.

Anglitin by Berlin Homeo Products

Anglatax by Botanical Sources

Glenteton by Gordon's Herbal Research Center

Glanofax by Healing Plants Ltd

Ganglical by Solutions By Nature

Please don't buy any of the above products. They are all scams. None of them are based in the country they claim to be based. All of the addresses are mail forwarding services. If you receive any pills, they will arrive from Pakistan. I have received tons of feedback from readers who tell me this is so.

The other type of scam site is more sneaky.  These are the so-called "philanthropic" sites, the ones which want to "help" you find the "correct" cure for your "problem". These sites will list between two or four herbal treatments (all of which you will find listed above) in varying order, and will make an "independent recommendation" of which one they think is best.  Of course, the catch is that the "independent" evaluator actually owns all of the bogus cures in the first place, so they don't care which one you choose, as long as you choose one. They get the money regardless.

(And they think we are the ones who are sick?)

Here is a list of the scam evaluators, along with the link to my background info on them. 

ganglion-options.com run by The Society for the Promotion of Alternative Health (SPAH)

ganglionhelp.org run by Towards Natural Health.  A little more on them here.

If you have a ganglion cyst and are looking for a real solution: I politely suggest that you get off the Internet, pick up the phone and call your doctor.  

And Waiting...

Remember that old Diana Ross song, "I'm still waiting"?  Well, that has been going through my head recently, despite the fact that I hate it.  Now don't get me wrong, it is a lovely song and all. You know the story, right?  A little girl has a crush on an older neighborhood kid and he tells her not to bother. And then he moves away and tells her

"Little girl
Please don't wait for me
Wait patiently for love.
Someday will surely come.."

And of course she doesn't listen.  She waits for him. And as far as I know, she is waiting still.

Because - and I realized this years later, -after I grew a clue. He's GAY!  She can wait until Hell freezes over, gets hot again and then freezes AGAIN, and he's STILL not going to be interested.

...and that's why I hate that song. 

So I heard back from #30 about the whole brain scan thingy. It is a study, won't cost me a bean for the scans (which is good because Insurance won't cover), and maybe some of the other stuff is covered (even better).  However, they are waiting for Board approval or somesuch red tape so I need to hang out some more until that comes through. #30 was very apologetic about the waiting, which was nice of him. However, I don't like hanging around when I could be getting answers.  So we had a conversation which went something like this:

Me: "You know, I'm still confused as to why -if this is CFS- do I feel so much better when I eat hardly anything at all? Yesterday I only ate a few crackers every few hours and I felt great. No episodes at all.  Is that normal for CFS? (subtext: unless you rule everything else out, I won't fit the criteria for your study).

#30:  "That's Interesting. I'll tell you what: While we are waiting for the approval to come through, why dont' we go ahead and schedule a Glucose Tolerance Test to get your glucose and Insulin levels.  Because you know; -just recently I had a woman with that very thing..." (Subtext: Good point. I don't want you buggering up my CFS study if you have a metabolic problem.  Let's rule that out before we get started...)

Ahhhh. The old give-and-take of the negotiating table. How I missed it! 

My GTT is scheduled for tomorrow.

OSM Investigates: Cure All Remedies Part 1.

As most of you know, I spend a lot of time and energy outing scams. I have outed over 1,300 scams here on OSM in the past few months. All of the scams I have outed so far have been pretty blatant: Companies selling garbage which they know has no chance at all of curing whatever ails you. Their sole purpose is to take your money and maybe insult your intelligence in the process.

I often get asked to investigate various remedies and treatments, to see if they are legitimate or if they too are scams.  I am happy to do this, unless I think the request was made by a distributor of the product looking got get some publicity -either negative or positive. Because there is no such thing as bad publicity, right? There are only links and more links.

So in an attempt to educate the consumer while at the same time NOT giving any links or business to dodgy sites, this is the first of an incidental series in which I will investigate a class of remedies generically, with no names included.  Because most of them are just as scammy in their own way as the targeted scams are, so I don't see why they should get a free ride here.

There are different levels of trickery out there  in the herbal cure world.  There are even some sites which may not be blatant scams, but which sound too good to be true nonetheless. Maybe the seller really believes in the quack theory behind the product they are hawking. Or maybe whoever-it-is falls into the category my Da called "well-meaning idiot"; i.e. someone who genuinely believes something has helped them and will help you. too. Maybe they think this  because they took in when they were coincidentally having a remit in symptoms. Who knows?  But anyone who believes in either evolution or intelligent design will tell you that it is possible to fervently but mistakenly believe in something which may not be true.  Because that is the other side's position.

 So -in addition to the common-or-garden criminal scammers, us sick people also have to be on the alert for quacks and well-meaning idiots (WMIs) on top of everything else

 

How to Spot a Quack or a WMI.

The first indication that a cure may have some inherent quackery or well-meaning idiocy is if it claims to cure a wide variety of illnesses. This is especially true if those illnesses bear no relationship to each other, like those that have completely different underlying mechanisms. For example, some sites may claim that their remedy will cure a long list of medical conditions, including  Multiple Sclerosis, AIDS and Epilepsy.  Let's just take those three and analyze a claim like that:

• MS is an auto-immune disease,
• AIDS is essentially a viral infection 
• Epilepsy is rogue electrical discharges in the brain, usually of unknown cause.

How exactly is one single 'cure' going to address all of these completely different problems?   Think about it. To address an auto-immune disorder you have to suppress the immune system. If you are doing that, then a viral infection like AIDS will go haywire. On the other hand, to fight something like AIDS, you would have to enhance the immune system.  This would cause the MS people a problem as their immune system is causing the MS in the first place and they will therefore likely get worse.

And epilepsy:  well nobody knows the underlying mechanism there, so claiming to cure it is just irresponsible.

Therefore  makes absolutely no sense that one product can cure all three conditions.  Yet the claims are out there, people.  Many of them.

Search and Destroy

Another claim I love, probably my favorite claim of them all, is this little gem:

"Our treatment seeks  out and kills cancer cells, leaving healthy cells intact"

I love these kind of claims. They seem so ... neat. So clean. So efficient.  I imagine someone newly diagnosed who is looking at chemo on one hand and a neat little herbal treatment with "no side effects" on the other, would be tempted to try the herbal pill.  I know I would be.

 But I always take a step back and ask a simple question.

 "How?"

That's right: HOW does the treatment seek out cancer cells?  What criteria does it use to differentiate cancer cells from other cells? And what if it is wrong and mistakes ...say ...my pancreas for cancer?

Seriously:  Let's break down that claim: There are approximately 50-75 TRILLION cells in the human body (let's call it 60 trillion as a nice round number)  and there are over 200 different types of cancers out there.

So  you are telling me that your treatment can run some sort of algorithm  that looks like this:

Find Cell 1

Compare cell 1 to 200+ different types of cancer cells (which is presumably held in come kind of on-board cancer database in the pill itself)

If cancer=yes, then destroy cell 1 (but leave all surrounding cells intact)

Else leave cell 1 intact

GoTo cell 2

Compare Cell 2 to 200+ different types of cancer cells...

...repeat 60 trillion times

Then after the 60 trillionth pass, presumably it should start again from the beginning, because several million cells will have died and been replaced in the meantime.

Take this to the bank from a computer ex-professional: That's an awful lot of computing power to fit into a little pill.  Not that you ever could, of course,  because pills can't actually perform computational logic of the type mentioned. And even if they could; I would have a bunch of questions for the manufacturer, such as:

How do you update the pills for new kinds of cancers as they are discovered? Can they somehow into the wireless network and download them overnight like Windows does?  Or maybe the creators just use Magic, because that's the only other explanation. 

And again: what if it makes a mistake and misses some cancer cells or destroys some healthy cells  like...  Oh,  I don't know... Neurons?   What then?

And another thing:  How was it tested?  And WHO was it tested on?  Mice?  (I mean... seriously. who would actually volunteer to be the first human subject in a trial like that?  Even if you are completely terminal,  how would you know it wouldn't go straight in there and eat your brain?)  

Now don't get me wrong, there are people out there actually WORKING on nanotechnology that will do exactly this kind of thing. Teeny tiny little nanobots that will rove around the body, looking for cancer (and that makes me wonder how the immune system will respond to them?  But that's probably a post for another year).  To imply that a pill, lotion or medicine can perform this kind of computational logic is just plain ridiculous. It goes back to my question to the doctor on how streptococcus knows what age a child is? 

The answer: It doesn't know, because it's a feckin BACTERIUM! It can't think.  Neither can pills, potions capsules or lotions (hey!  I think I feel a Pome coming on)

So yeah.  Claims that a pill or potion can  target and kill a certain type of cell is complete crap. Don't believe a word of it.

Research The Research

Another giveaway on quacks and WMI, is that there is usually no actual published scientific research, just theories and gushing  testimonials.  No studies or clinical trials at all. Well, I'm sorry. if there is no large-scale, double-blind peer reviewed human (as in Home Sapiens. Not mice, plants, frogs or bunny rabbits) study; preferably published in a respected journal,  then the cure isn't proven and you can stop wasting my time, TYVM. 

Sure, some people may have taken your product and felt better. That's called the placebo effect and it is well documented. Or they may have taken it around a time when their condition just happened to take an upturn (because most chronic conditions do tend to wax and wane) and associated your product with that upturn. There are a many reasons why people might *think* it helps. This is why we need objective research. To prove if it really helps and by how much.

Most normal people are afraid to read a research paper; afraid they won't understand it.  This is something scammers LOVE BTW. They like to cobble together any old shite that might look good to an amateur and put it out there as valid research. There are three ways to combat this.

1. Look for peer-review and/or  publication in a valid journal.  If a study is published in The Lancet, JAMA, NEJM, or a similar, well respected publication; chances are it's completely legitimate.
2. Try reading the report anyway and see how you get on. Skim over the science-ese and read the English. Often, if the research is bogus, a regular person will pick up on the details: A classic example is the product name omission in the 'results' section:  "both sexes are equally affected by Vitiligo"   Yeah OK. How many were affected by the PRODUCT, as opposed to the disease you are supposed to be curing?  Also look for discrepancies such as dates. If the product was introduced in 2006, but the study is dated 1997, chances are they study and the product don't quite match.  If the study started out on 30 people, but 50 of them responded to the treatment, well, something is up.
3. Get help. You probably know someone who can read over the study; a sibling, friend, colleague or neighbor.  Ask them to have a look at it for you. They can only say no.

I have seen incidences where false studies have been cobbled together. I have also seen people trying to fob off small-scale animal studies as "proof" that their product is so wonderful.  But these types of studies  are not acceptable to me. Not enough that I would actually ingest any of these products at risk of hurting myself. A study need to be legitimate, which means peer review. A product needs to be tested on people. And I mean properly tested in a controlled double-blind scientific study, where the neither the doctors or patients know who is getting the product and who is getting a sugar pill. That way, their responses can be monitored independently and the results can't be fixed.

 

Hello, FDA?

The FDA regulates conventional and recognized  cures and treatments. It requires proper studies and testing and strict standards of manufacture and auditing.  The FDA does not regulate "herbal supplements".  If a so-called herbal supplement actually turned out to be the cure for anything, I can guarantee you the FDA will be on the manufacturer and will require that the product become fully regulated as a drug, not a supplement.

Many companies will tell you that they are 'avoiding' studies because "if the word gets out"  about their marvelous product the FDA will swoop down and regulate them. I have even heard some of them claim that the FDA will confiscate their product and put it out to market on behalf of the Government.  (Ha!  that is funny! This kind of thing doesn't happen in America). The quack company will then go on to tell you that you had better get in there now and buy their product before the FDA snatches it away from the unsuspecting and deserving public.

This is just spin; smoke and mirrors.  And a very hard sell.

First off:  FDA regulation is a GOOD thing for us consumers. It enforces standards. FDA regulation may be considered "bad" for these manufacturers because it forces them to adhere to certain standards of quality and manufacturing (aww. poor babies! ) and therefore it drives their costs up.

Secondly, FDA regulation means that consumers have recourse under the law if the treatment turns out to be harmful. Right now, if you get poisoned by (say) Parkotab, you are screwed.  You can't bring the weight of the US government or the civil/ criminal courts down on the manufacturer because there is no FDA regulation of that product.  However, if you are hurt by an FDA regulated drug, you have recourse under the law and the FDA can take appropriate action, such as force a recall.

So don't believe any paranoid rantings regarding the FDA that the miracle cure merchants will put out there. Their motive is not to make you well. It is to make money for themselves. 

Selling Books, not cures

This is a topic for a whole 'nother post, but some of the claims out there are in book form. "Buy this book for only $25" and you too will know The Secret to conquer  [insert medical problem here]!".  The interesting thing about these schemes: They can bypass certain laws regarding claims. For example, in the UK it is illegal to sell a pill that claims to cure cancer.  However you can sell a book that claims a "secret" to curing cancer.

Inventive, no?

There will be more on this subject another time.

 

Read the disclaimer:

I love this one, lifted from a miracle cure for something

This treatment has not been evaluated by the FDA. The term "cure," as used in this article, is the alternative medicine definition of "cure"...

Ooooooh!  So we are playing with words now! (I love playing with words!) So  "cure" doesn't mean cure to you.  It means something different. Something alternative.

Okay.

Because when I think of the word "cure" I think of concepts such as "all better" and "no longer sick". When you use the word "cure" you mean ...what, exactly?  Something alternative?  What's the alternative to "cured"? 

Sick?

Dead?  

Do please advise, oh miracle cure purveyor. There is quite a range of possibilities there, not all of them happy-happy.

I hope I have given you some food for thought here. There is a lot more, too, but it is late and I am tired. Stay tuned for part II.

An Open Letter to Martin J. Wygod, Head of WebMD

Dear Mr. Wygod.

Sorry to take you away from your racehorses, but I tried to go through normal WebMD channels and my e-mails have remained unanswered.  Then I tried to find the CEO of WebMD, but there is none. Nor is there a head of advertising or public relations. Therefore I went to the holding company, HLTH Inc, and I could find no-one there who seemed to have a descriptive title ("member of the board of directors" doesn't really cover it). And so I decided in desperation, to address this to you. You are after all, the acting CEO and Chairman of the Board of Directors, so the buck stops with you.

It's a straightforward question:

Why does WebMD allow filthy scammers to advertise on the site?

What do you mean you don't and it's against your advertising policy?   You DO and  -maybe you don't know this, because maybe it happened in the lower management echelons, but your advertising policy is specifically designed to allow it to happen.  There is a humungous loop hole built right in. So I know HOW you have filthy scammers advertising on WebMD  (and I will explain how later for the benefit my other readers who may not have noticed).  But please, Mr Wygood,  tell me WHY it happens?  Do you need the money so badly?  Does WebMD get so much money from Yahoo for each "click" a scammer receives through this loophole in policy, that the company would fold without it?

Do you make so much money from supporting scammers that you are willing to risk the reputation of WebMD? Because -trust me, that is what you are doing.  All those editors and reviewers. All the medical boards and MDs and other people who work so hard to put out good and accurate content are made to look like idiots because the first link in a search will go to a scam site selling "miracle cures" for serious and fatal illnesses such as Multiple Systems Atrophy.  All in total violation of your very excellent advertising policy,  which prohibits such practices and which has as a closing statement, the following line

No Advertising will be allowed on the WebMD Network that could injure the good name or reputation of WebMD or the WebMD Site.

Um. You have this, this, this, this and this company directly advertising on WebMD, tucked right in there under the logo so that lovely sentiment is a FAIL.

You see,  There is a little paragraph higher up in the advertising policy that reads like this (excerpt)

"...As described in the "Ads by Yahoo" hyper link in the Ads by Yahoo section on our Search pages, these "Ads by Yahoo" are listings that have been purchased by companies that want to have links to their sites appear adjacent to search results in response to specific terms. WebMD may receive payment from Yahoo in connection with displaying the sponsored link results..."

Sooo. "Ads by Yahoo" is a separate deal, not covered by the advertising policy that prohibits miracle cures or false claims and a bunch of other stuff the scammers do.  

Here is the "Ads By Yahoo" policy... -actually it's more of a disclaimer:

"Ads by Yahoo!" are paid advertisements. These advertisements have been purchased by companies that want to have links to their sites appear in WebMD’s search results when you search on specific words or phrases on WebMD. These advertisements are administered, sorted, and maintained by Yahoo! and are displayed on the WebMD site. WebMD may receive payment from Yahoo! when you click on any of these advertisement links. The advertisements have not been reviewed for accuracy, objectivity, or balance by the physicians or editorial staff at WebMD and are not endorsed by either WebMD or Yahoo!

So in theory, I could pay to advertise kiddie porn on WebMD (not that I would) using "Ads By Yahoo", and neither WebMD  nor Yahoo would do a darn thing.  -OK maybe Kiddie porn is taking it too far because that is overtly, rather than covertly illegal. But I could claim a bogus herbal remedy for ...say Motor Neuron Disease (hello, ALS) that gives "results within Days" and that would be allowed.  You think not? Well, here is Exhibit A:

   

 The three circled sites are all scams.

The bottom one; that 'results within days' one that I mentioned?  Well, that particular advertisement is from Healing Plants Ltd, a scam operation that was outed before here on OSM.  Healing Plants have both direct and indirect advertisements on WebMD. The direct version is seen as an example above (they have around 60 bogus products for different diseases, and yes. Several more of them are on WebMD). The indirect ones are in the form of bogus comparison sites that point people to Healing Plants or to two or three other -even worse- "'guaranteed treatments";  some of which contain strychnine, mercury, arsenic or ground-up hairballs.

...all available a few short clicks away from WebMD.  Are you proud to see your life's work exploited so?

Another thing I have found -a little flaw in your site design, is that "Ads by Yahoo!" has a smarter matching engine than you. So if you mistype something, you get no WebMD results, but their ads are all there, nicely listed. Most people will probably just click on the nearest ad, cutting out WebMD altogether.

 
(As you can see here: four out of the six "Ads by Yahoo!" results are scams. Man-problems are very popular with the scammers)

Mr. Wygod, I have demonstrated using  your own text and screenshots that WebMD supports scammers and is paid to do so.  I have to ask you out straight:  Is this policy deliberate or an oversight?  I can't help but think it is deliberate, as the policy was so carefully structured to protect the Yahoo stream; -which is the one on which all the scammers enter WebMD- from your rigid advertising policy. And yet there they are, plain as day, looking for all the world to the casual observer (which most are) as if they are legitimate and endorsed by you.

Now I have to ask, did you know about this policy?  I can't believe you did. I can't believe you would allow that to happen. Not because I think you are so wonderful or anything -I don't know you at all (except for what I have read here), but because I think you are a good businessman, and a policy like that on a site like WebMD is simply bad business. It is undermining the entire brand for a series of "clicks" which are probably worth a fraction of a penny apiece.  And I know WebMD doesn't get most of its revenue from advertising, anyway. So to  jeopardize the entire franchise for the sake of  pennies is just dumb.

So this is the situation you have on your hands right now: WebMD is supporting scammers to the following effect:

• It looks like WebMD is endorsing these scam sites and products (and several of my readers who were fooled, actually said it was because the referral site was a legitimate one, such as yours)
• It allows these criminals to make money off of sick and desperate people on the back of (and to the detriment of) WebMD's reputation.
• Some of the products are harmful, so some people may be hurt by them, when they came to WebMD for help. Theoretically, -despite all your disclaimers, WebMD could be open to a lawsuit if this happened.

I am urging you to please put a process in place that performs better due diligence on the type of companies advertising on WebMD through "Ads by Yahoo!" and similar feeds.  I can provide a pretty comprehensive list of the scammers I know about (I am sure there are plenty that I have missed). Actually, the lists are here on this site,  under the "scams" section, but I can provide it in a better format -in any format you like.

I don't expect a direct answer from you. I didn't get one when I went to customer service, despite the friendly little box that said they would get back to me in two business days, so I know you won't respond. But even if you don't respond you will be responding: Your response will show in the WebMD site. I predict that you will do either one of the following

1. Nothing
2.  Remove all the scam ads
3. Leave the "Ads by Yahoo!" feed untouched, but with a more visible disclaimer thereon.

I hope  you  do the right thing and choose Option #2; -but I have to tell you (and you can color me cynical), my money is on #3.

BTW: If you need help identifying the scammers, I was serious in my offer to help.  My e-mail is linked on the top left-hand corner of this site.

Sincerely

One Sick Mother

Gardasil, The First Frankenvaccine

A friend, a young lady of college age,  recently posted a link to this video on her Facebook page.  It is the story of Gabrielle Swank, who has become very ill after receiving her third Gardasil vaccination.  Aside from the obvious impact such a story would have on anyone; two particular aspects of it struck me very hard:

1. Many Of Gabrielle's symptoms are very similar to mine; although hers are  more severe and sudden in onset.  I checked out some other stories and a similar list of symptoms emerges.  Hmmmm.
2. My daughter, Grace is nine years old. Very soon, I will face the Gardasil decision on her behalf. (Ugh)

 

So I decided to investigate Gardasil. Like you do. And to share my findings with you.  Because there is a lot here and it is interesting, while at the same time; kind of scary:

The first thing I found out is this: Gardasil is the very first of a new breed of vaccine, which is manufactured by a completely different process than traditional vaccines have been.  There are two new vaccines in a similar vein racing through the FDA as we speak: Cervarix, by GSK, another HPV vaccine and a direct competitor of Gardasil, and a new H1N1 "swine flu" vaccine by Novavax.

Hello, Big Red flag!

Traditional vaccines are made using a live virus, which you then put into the embryo of a developing hen's egg. You leave it for three days for the embryo to develop  some more, replicating furiously and making new virus as it goes. Then you crack the egg,  extract the virus, kill or disable it so it won't cause the actual disease, clean off the bits of dead chick, and voila!  One single vaccine dose!  So you can't make a vaccine without breaking some eggs. (idle thought: Do vegans get vaccinated?  Hmmmm.)

Here is a video explaining the process.

There are several problems with this method: It is slow, labor intensive, expensive and is very dependent on the supply of chickens/eggs.  Apparently they prefer to use young hens in their first laying season, then they "sacrifice" them before the next virus season, presumably rearing a batch of their offspring as a replacement. ('nother idle thought: You know, reading all this, I wondered how they would make an avian flu vaccine? What if the flock got infected with the bird flu virus? ...Or would that be a good thing, and save the trouble of introducing the virus to the eggs artificially?).

The Gardisil vaccine is made using a brand new process -long overdue-  using something called VLPs, which stands for virus-like particles.   I know, right:   WTF is a virus-like particle?  Well it is a fancy,  state-of-the art piece of genetic engineering.

Best as I can understand; it works like this (this is my over-simplified and somewhat over-dramatized version, but it is not entirely inaccurate):

You take a virus, remove it's brains, and then put it in a little bath of yeast and nutrients. The virus will reconstitute itself into something mute that looks and walks and like a virus, but isn't technically a virus anymore. Therefore the name "Virus-Like particle".  

 

I prefer to think of it as a Frankenvirus.  

 

With the brains removed, the Frankenvirus  cannot cause that specific illness,
but it can still reproduce  (similar to  many man I know, no brains, but ready to reproduce with anybody not fast enough to get away)!  And so it does just that, merrily making more Frankenviruses without the lab needing to use any hen's eggs at all (and I bet all the vegans reading this are heaving a HUGE sigh of relief and queuing up to get Fraknenvirus injections...).

Because VLPs -or Frankenviruses as I now prefer to call them (it is less cold) LOOK very similar on the outside, the human body reacts to them as it would to a regular virus, generating antibodies and therefore immunity to the original virus. Apparently the process can be further tweaked, adding bells and whistles in the form of protein coatings that may trigger different immune responses in the "host" -which is the drug company's preferred term for "person" in this scenario (it is more cold).

Frankenvaccines are believed to be safer than traditional live or killed vaccines because there is no way they can inadvertently cause the illness for which they were designed. This all sounds very well and good.

But what about causing NEW illnesses?  Did anyone think to check that one out?  -Before Gardasil went into mass production on our next generation of mothers, I mean?

Yes, there were clinical trials, but this is brand new technology. There have been NO long-term trials -intended to be run "post-marketing" (i.e. we'll inject it into all of your little girls and let's see what happens!).  I wonder how many parents were informed that the Gardisil vaccine that was being injected into their daughters was the very first product in a brand new generation of vaccine technology? Because that is information I would want to know, and I think I have a right to know it before I am guilted into making a snap decision in the pediatrician's office

 As a former software person, I know that  "version 1" of any product is usually loaded with bugs (pun intended). Every person in my business knows that you have to get to at least version 3 before they get most of the glitches out of the software. So generally, we install our new code on our colleague's computers befire our own (Really. it's mean, but we make an excuse and we do it).

The big th 
ing about new software code (and presumably new vaccines and Frankenviruses), is that they may work just fine in the lab, but you never know what kind of conditions they may encounter out in the real world. W hen you release them into the world, there can be all sorts of actions, reactions and interactions with other entities and other ...stuff that you could not possibly have predicted under lab conditions.

...not to mention the long-term effects, which have not been studied at all.  

 

 

 

Eventually, we iron out all the little glitches and we release a cleaned-up and safe product in version two or three.

 

 

 

 

Did the FDA, the doctors or ANYONE warn patients or parents that Gardasil is a 'version 1.0' -not just of a vaccine, but of a whole new technology and  processing methodology?  If anyone has been offered this vaccine, I would appreciate them letting me know if they were told this (thanks).

 

OK now to completely change the subject back to me for just a second.

I have been told I might have Chronic Fatigue Syndrome (CFS).  This was based on the fact that my system contains an abnormal number of antibodies against a virus. In my case, it is Epstein-Barr, but other cases of CFS have been linked to the HPV viruses.  I was very struck by the fact -as I mentioned earlier, that many of the people who got sick after the Gardasil shot had very similar symptoms to mine. Scarily similar.

And this got me thinking -funnily enough (in light of earlier descriptions)- of chickens and eggs:  Namely can CFS or a similar illness be caused by an immune response, rather than a viral infection?  In other words, could a Frankenvirus, which cannot cause illness in itself, cause a different kind of illness by triggering an unexpected immune response in some individuals?

Good question, no?  I wonder if anyone with any actual say in these matters has asked it?

..and I also wonder if IVIG or similar might help some of those girls and women who have had their lives destroyed by Gardasil?

Another big question surrounding Gardasil and other FrankenVaccines, -quite apart from the Frankenviruses therein, are the other additives, called  adjuvants, which are  chemicals added to the vaccine, supposedly to make the virus more effective.  The main one used in Gardasil is approximately 225 mcg of aluminum (as Amorphous Aluminum Hydroxyphosphate Sulfate adjuvant).  There have been many questions raised in the medical community, asking if this additive is really necessary?  The Frankenvirus has been shown to work perfectly fine without it.

Gardasil is not the only HPV Frankenvaccine out there. Cervarix, which is GlaxoSmithKline's (GSK) version, has been approved for use in the UK and parts of Europe. Cervarix only contains two Frankenviruses, (as opposed to Gardasil's four) but  GSK have been bragging hugely about their adjuvant,  known as AS04, saying it provoked an even better (i.e. stronger) immune response than Merck's boring old aluminum salt.

'scuse me, but is that a good thing?  Just how much immune response can a body take before it goes into overdrive or starts to shut down?

The one death which had  initially  been linked to  Cevarix, now turns out not to have been linked at all. The 14yo English girl who died had undiagnosed cancer, which had become quite widespread. OK fair enough, but I still think the shot thing was probably a bit more than a coincidence. What else had changed with her?

I don't want to create mass panic here.  I know millions of girls and women have received the Gardasil shot and been fine.

So far. 

But is their long-term health being monitored?  How many have gone on to have babies?  How ha  v  e those babies been?  Really. Enquiring minds want to know: 

What are the long-term effects of Frankenvaccines?

There have been thousands of serious adverse events reported and several deaths have been attrib  uted to Gardasil. I don't think the FDA is looking at this as anything more than just another vaccine. I don't think the FDA has said to itself (as I would if I were in charge) "This is the very first in a brand new generation of vaccine technology and processes. We think we'll follow it up more closely than if it were a traditional vaccine".  No.  The FDA, the CDC, the AMA and everyone looking at the cost of cervical cancer treatment and are pushing hard for us to have our little girls injected with this stuff -which -let's face it- is to prevent against a sexually transmitted disease (it is NOT a cervical cancer vaccine. It is a HPV vaccine. Yes, HPV can and does cause cervical cancers, but HPV is transmitted sexually. How many NINE YEAR OLD GIRLS -other than the abused- are sexually active?).

Several things need to change : The FDA needs to instigate some kind of process to more actively monitor and follow up on brand new technology such as genetically engineered viruses and proprietary adjuvants. Currently, they only audit every two years. I would be more comfortable with every six months in cases like these.   Sorry if that's a lot of extra work on an already-stretched agency, but the public needs to be protected.

But instead, the FDA is pushing through more and more Frankenvaccines. Cevarix is set to be approved any day now and a new H1N1 Frankenvaccine, developed by Novavax in Maryland, is being watched with interest. They were the first to put a swine flu Frankenvirus together after the CDC released the sequence, taking less than a month to do it. This is impressive and could change the whole face of the industry.

But at what potential human cost?

Frankenvaccines  have only been in production for three years. They have NOT BEEN FULLY TESTED. The pharmacutical industry is forging ahead nonetheless. I did a little search on VLP patents which are in development or approved:

Over 3,800 of them, including at least one for HIV.

None of this is bad in itself. it would be great to have a safe and effective vaccine against HIV.   However,  I am reminded of the whole Thimerosal thing in the 90s, where vaccines were tested and approved individually, with no thought given to the overall load of virus and chemicals injected into tiny babies. This meant that many babies were injected with mercury at many times the adult recommended levels, because most of the vaccines contained it and no-one had done the math on the cumulative levels (It sounds unbelievable, but it is true. This is the kind of shit the FDA routinely overlooks).

Who is studying potential Frankenvaccine cumulative load and interactions with other Frankenvaccines, I wonder...?

I remember the 90s and it seems to me the whole Frankenvaccine issue - as it is currently playing out, has a much greater potential for interactions and adverse long-term effects than anyone in the pharmaceutical companies or the agencies that are supposed to regulate them are letting on.

So I won't be giving my kids a Frankenvaccine anytime soon.  -especially in light of my own health problems. I already have some of the reported side-effects of Gardasil already, possibly due to my immune response to a different (non franken-) virus. 

What if whatever I have is genetic?

Therefore, Grace will be "one less" person getting Gardasil.