One Sick Mother

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.

I'm Still Waiting

I went to see doctor #30 in September and I didn't hear back in over a month. I was seriously starting to wonder what was going on with this guy. It turns out the doctor got sick, needed surgery and was out for a few weeks. He assured me he is All Better Now.  I'm happy for him. However in the meantime, I am nowhere near better and thoroughly sick of feeling horrible all the time.  I suppose there isn't much you can do if your very highly specialized doctor is sick, except wait until he is better and hope he doesn't die.

So in case you haven't guessed, we finally spoke last week. None of my labs were surprising, according to #30. My Epstein Barr titers are still very high, as are markers for Parvovirus.  He didn't test me for the new CFS virus that everyone has been talking about recently. Nor did he test me for porphyria, which he had specifically said he would do.  I had that abnormal result months ago and no-one is willing to follow up on it.

*sigh*

So #30 seems convinced I have CFS. He said he is getting together with a expert on MR Spectroscopy  on Monday -today actually, to talk about new imaging techniques for the brains of people like me.  I am to call him tomorrow and talk about ...something.  I'm not sure what. I go the impression that they were thinking of putting together a study, but I'm not sure. I'm in two minds about a study.  The last one in which I participated ended up with me getting unnecessary and experimental surgery and being charged for it.

But it also looks like this imaging; -although definitely interesting-  is considered experimental (but non-invasive) and therefore not covered by insurance.

And I'm poor.

AND there is still the whole having-to-trek-into-the-city-three-times-per-week thing which has not been resolved.

Maybe we'll get it all sorted out tomorrow. 

But I'm not holding my breath.

Stay tuned.

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

Waiting. Again.

So it is over two weeks since I had a ton of bloodwork taken for #30 and I have not heard the results back.  I figure #30, who is pretty highly specialized, went beyond the CBC and ran a bunch of unusual tests. I know these take some time, but still.  I have never been good with waiting. Its the whole ADHD thing.

Wait and see: He'll probably call tonight just because I moaned about him.

I haven't been blogging much because I messed my back up pretty severely last week, and I wasn't really able to do ...anything, really. It is mostly back to abnormal now, but I now have something else going on, which is impairing my ability to think very well. I am waiting for that to get resolved.

I need to apologize in advance to my regular readers for the next series of posts. I am about to put up a whole series of scam posts, not on new scams, but on existing ones (specific to each disease this time). Sorry to repeat myself, but I am still getting a lot of e-mails and hits from people who find this site too late. I hope, by doing this, more people will find OSM first, and not waste their time, money and Hope on evil scammers.

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 thing 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. When 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 have 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 attributed 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.

Where Was I? ...Oh Yes: #30

So, in my unrelenting quest to find a diagnosis and treatment for my disabling medical condition, I took myself off to see doctor #30 last Wednesday.  This guy is a metabolic endocrinologist and works mainly in pediatrics. I found him through a buddy of Joe's, interestingly enough (long story). I had called  #30's office, hoping to see him, or at least to get a recommendation for an adult version of him -if you know what I mean (because he is an adult, obviously).  I mentioned before that he had called and after a long conversation, agreed to take my case.  Hurray!  Most doctors who see me coming start crying for their Mommy.

So I packed the kids off to school and undertook the 2 hour walking-and-public-transport commute to the hospital where #30 practices, which is big and internationally recognized. And far away.

What with public transport, hospital red tape and my appalling sense of direction, I was an hour late. #30 is a very kindly mature gentleman and he agreed to see me anyway. He spent a lot of time with me. He had copies of all the stuff I had faxed to him, but no printouts of the documents I had e-mailed. Now, I usually bring copies of all correspondence, but my printer had chosen that morning to run out of ink, and had crapped out right before the most important document: the one depicting the timeline and sequence of events leading up to my first fit (ugh).

Nonetheless, #30 took a detailed history, although he concentrated more on stuff before I was sick than when I was sick -we kept getting sidetracked and I had a few minor seizures, which didn't help with anyone's concentration. So with the afternoon well advanced and no-one fed, he finally sat back and told me what he thought.

"I think you have a variant of Chronic Fatigue Syndrome.."

(whaa...?)

"...and none of the treatments for it work..."  (I nodded, speechless. It is known there is nothing you can do for CFS) 

"...except ours..."

He went on to explain that there are some variants of CFS that present with right-sided weakness, facial droop, seizures and pretty much all of the symptoms I had presented with (except the drug reactions). He invited me to Google it.

I did, of course and I found this piece, which is excerpted below. I have bolded the part that I think pertains to my symptoms:

Research on subgroups of CFS is underway, but is still in very early stages. To date, however, clinical experience and limited data suggest that subgroups of CFS may include the following:

• Post-ADD CFS: Young adults who had attention-deficit disorder as children, who have flipped from hyperactivity to fatigue. Such patients have severe hypersomnolence (sleeping too much, sleeping any time or anywhere). Such patients respond well to psychostimulants.
• Neurological CFS: Patients have more severe cognitive symptoms than patients in the other groups, including trouble thinking, remembering, and paying attention. While cognitive difficulties affect the vast majority of patients with CFS, this group experiences significantly more severe symptoms. Visual-spatial problems are common as are sensitivities to light and noise. Other symptoms in this group include seizure-like episodes and other abnormalities suggestive of temporal lobe seizures. Patients in this group tend to have severe sleep problems in which they never achieve stages 3 or 4 of the sleep cycle, awaken unrefreshed, and respond well to sleep-improving drugs.
• Post-viral CFS versus gradual-onset CFS: According to some experts, an estimated 70% of patients are healthy until a particular illness strikes at a definite time. In gradual-onset patients, however, symptoms develop gradually, and patients are unable to recall any specific viral or infectious illness that initiated the process.

Further delving into my medical records, which I had brought with me, uncovered some unusually high titers for Epstein Barr (AKA infectious mononeucleosis AKA Glandular fever), which #26 had uncovered almost two years ago (but done nothing). #30 said that many people with CFS have antibody profiles that look like mine.

Then #30 went on to explain that their treatment for CFS is a structured regimen of exercise therapy and nutritional support, which would have to be undertaken diligently for several weeks before any results would start to show.

Now I have no problem starting a monitored exercise program. I would love to lose a bit of weight and my response to exercise has been a bit ...um ...unpredictable in the past. I was fired from Physical Therapy for having too many seizures in their office.  But I asked the Big Question anyway (already knowing the answer):

"Could I do this program near my home, or does it have to be in the hospital?"

"It has to be here, in the hospital"

Fuck. I was afraid he would say that.

Here is my problem: Himself and myself are (legal) immigrants with two special-needs kids. We have no family or close friends nearby who can help us. The hospital is two hours away, only accessible via public transport and there is no-one who can accompany me on these trips. Therefore, if I go to the hospital, do my thing and then have a massive seizure on the NYC subway going home (or there!), I am basically screwed. -An epileptic lady I once struck up a conversation with on the subway said that if you have a fit on the subway, they call 911 on on your mobile phone and then take off with all your jewelry and belongings. At least they call 911!

Even supposing I don't have a fit: Grace gets on her bus at 9am and Joe gets off his bus at 3:10pm:

Allow an optimistic two hours to get to the hospital: 11:am

Allow 40 minutes for hanging around, getting registered and prepared etc: 11:40am

Allow 40 minutes to do the exercise program: 12:20 am

One hour (at least) cool-down and monitoring: 1:20pm

Two hours to get home and discover a hysterical Joe on the doorstep: 3:20pm

...and all this is assuming no problems or delays. There is no way I can do it.

Himself has been good about working from home on days when I have to schlep into the city for a doctor's appointment, but he can't do it three days a week for three months. And there is the other question:  What if I am in the hospital, and I get a call from the school, that Grace has dislocated a hip, or Joe has had a meltdown?  I will be two hours away and Himself -if he is at work- will be over an hour away in a different direction. There is on-one locally who would be able to deal with either of them under those or similar conditions.

That won't do.

In a way, I am stressing out prematurely about this. I had seven or eight vials of blood taken yesterday for #30 to review. Maybe he will find something not indicative of CFS therein and will change his treatment plan?

I guess we will wait and see....

Another Day, Another Doctor

I am going to visit a new doctor today. This will be #30 as counted in this blog (but #32 actually, as I left out two in the initial count).

This guy -so far- seems a little bit different: First of all, he called me before the initial appointment, asked many questions about my condition and spoke to me at length. He asked me to send him copies of bloodwork and other tests for review before the appointment.

...and  then  ...THEN he said he thought he might be able to figure out the problem.

WOW!

Most doctors just look at me -like I'm mental (although maybe he was doing that -hard to tell over the phone) and tell me to see ...someone else (doesn't matter who. ANYONE but them!)

But this guy... He said he had some ideas. 

I kinda wish he hadn't said that.

Because now my old stalker: Hope, has been all over me like a rash.

Maybe this guy will be the one to make Hope finally go away?

Or maybe he will have the answer?

I feel right now this guy is my last shot. I know that probably isn't logical, but feelings seldom are.

I will let you know...

The Language of Scammers

I am still receiving comments and e-mail from people who find it hard to believe that some treatments I have exposed as scams are really as bad as I make out. 

I understand where they are coming from. I really do. If you or a loved one has a persistent and difficult to treat condition, as I have had for over three years now, you really, really  WANT to believe that a solution you found on the Internet is going to give you some of the relief promised. Because you want to Hope. And as I have said before, Hope is a cruel bitch.

...and all these herbal remedies are 100% guaranteed, Right? What could go wrong?

Lots could go wrong. Lots and lots.

Let's just clarify what a "100% guarantee" means in this context:

It does NOT mean the product is 100% guaranteed to work.

It means that you will get 100% of your money back if it doesn't work.  

...Maybe.  

...unless you happen to be in another county far away and you don't happen to speak the language, or you contact them with questions and they can con you into trying the product for another few weeks -blasting out the time limit for a refund, or any more of a hundred different ways they can wriggle out of paying.

Or they can just ignore your letters and e-mails (because they don't have a phone number, you know).

And let's explore that guarantee in a little more depth. Say you have a condition that is caused by a bacterial or other infection such as tetanus, and you choose to take tetnatab instead of antibiotics, you will probably die.  But that's OK!  If it doesn't work and you DIE, you can get your money back!  That is, maybe your estate can make the claim for the $80 on your behalf.

And yes. Many of the false claims are for terminal or potentially dangerous conditions

OK: Let's say your condition isn't as immediately serious as tetanus. Let's say it is something non-dangerous but painful and or unsightly, such as Hidradenitis Suppurativa . We'll take Suppuratec from Botanical Sources as an example, because their guarantee is one of the most squirrely.

 

Money Back Guarantee - Valid for 60 days!

After placing your order, if you believe for any reason that Suppuratec is not suitable for you or you do not find it meeting your health expectations, you have nothing to worry about. All you have to do is to send us back the unused portion (or the empty bottles if you have used the whole product) and all amount that you have paid us would be refunded immediately without any delay. It is completely up to you if you want to give a reason as you will not be asked for any.

This guarantee is valid for 60 days from the date of purchase, thus allowing enough time for delivery to your door and to experience results.

Sounds good right?

Except I have not heard of a single person who got their money back from Botanical Sources without going through their credit card company first. Which means they probably got their money back from Visa or American Express, not from Botanical sources at all. So BS gave them crap product and didn't refund the money.

I particularly love Suppartec's little "guarantee" sidebar, which tells you not to take their word for it and try the product (I think that's what they mean, the English needs work).  Hold on a second here. Don't take their word for it:

If you are trying the product without seeing any test results or research data, whose word are you taking? Only theirs! There is no-one else's word to take! Botanical Sources (BS) doesn't even have fake testimonials like some of the other rip-off sites have. 

But anyway, If you don't like the product they will guarantee to refund in full, including delivery fee and they give you 60 days to do it.

Then ...THEN there is a little box with a picture of a plant, including the roots and it says 100% Guaranteed All-Natural ingredients". But that just means the ingredients are 100% guaranteed to have been found in Nature; Sand, poo, mold, weeds, fungus, lichen, rocks and swampwater are all found in nature, but I wouldn't feed them to anyone with Hidraden... ...with anything.

Come to think of it, I wouldn't feed them to anyone at all.

But I love the tie-in of the graphic with the money-back guarantee.It's almost like they think a widdle plant is going to make a fake guarantee real.

It's not.

The other point I want to make, although I made it before, is that the claims these products make are -without exception- seriously unrealistic.

I have explored this before, but I think it is worth saying again. These rules of Scamming are excerpted and slightly modified from a previous post I wrote:

1. Lie Big:
   It is a concept con-men have down cold, but one that most decent people can't get their heads around:  If you are going to lie to people: Lie big. Don't bend or massage the truth.  People are expecting that. Most normal people lie small, They exaggerate or use words like "almost" or "virtual".  But the truth is usually somewhere underneath. People expect this and watch out for exaggerations and small lies. People generally don't expect a lie to be totally bald-faced and to have no relation to the truth. Therefore we see the grandiose claims scammers  make and we expect there is some truth to them. This is why scammers are so smart in their pitch. They understand this about people and therefore they sold so high, but delivered so low, they seem to have flown right underneath most radars.  
    
2. Divide and Conquer: 
   People with specific illnesses don't generally go looking for herbal treatments for other illnesses, so if one product was exposed as a fraud, then it is just that one out of ...what?  ...about 60 now that I have found?... I figure the scammers simply dump the product that was exposed, find a new disease, re-brand the website and labels as "new disease-Tab (fax, cal, ton) and then carry on selling the exact same product to a different market.
   
   
3. Avoid well-organized groups:
   There are no 'guaranteed tratments" for Multipls Sclerosis, Breast Cancer or Autism/ Asperger's. There is no Alzheimer's cure and I think there is a very good reason for this. It is probably the same reason Cardio-tab no longer exists:  These conditions are highly public and have well-populated organizations and lots of support groups surrounding them, the jig would be up pretty quickly with most of these conditions. -I was actually surprised to find "guaranteed treatments for Muscular Dytrophy, Lukemia, and Parkinson's, as they are also have quite well- organized groups surrounding them. 
    
4. Use the Global Market to confuse your  umm... "customers":
   If you set up shop based out of a small, little understood country in Scandinavia, then ship your product from Pakistan, most normal sick people won't be able to figure out how to take action against you from halfway around the world... 

Back to the language of scamming:

Another word you find a lot on the scam sites  is "treatment". Not "cure". Treatment.  So they claim to "treat" some symptoms but totally ignore the underlying cause. Say you have a bacterial infection that causes swelling and redness in your knee and you buy a scam product to "treat" it. The scam product may contain some herbs that may reduce redness  and swelling.  But it will do nothing to kill the bacteria that are causing the problems in the first place. Therefore any result will be temporary and the infection will spread.

But you can't sue, because Pakistani herbal products are probably not regulated in your country. (Yes. Even if the company claims to be based in Scandinavia, the UK, New Zealand, Australia, Italy or Germany, the product is shipped from Pakistan).

Here is another problem with scam products -actually with any herbal remedy:

You don't know what you are getting. Yes, there may be a list of ingredients on the Internet. But how do you know that the product you received in dirty packaging from Pakistan contains what it claims to contain, without contaminants, heavy metals, or new bacteria?

You don't.

And even if they do contain the ingredients as advertised, some of the listed ingredients are downright dangerous. -especially in combination with some medications. Here is another example of the language of scammers: Using a fancy name to describe shit. Some examples of ingredients I have found in scam products:

• Arsenic (listed as arsenic!)
• Hairballs (listed as Serpentine Bezoar)
• Strychnine  (listed as "nux vomica" or "strychnos/strychos nux vomica")
• Mercury (listed as "cinnabar", which is much more romantic, donchathink?)

There are more, but these were the ones that stuck in my mind

I hope by spelling some of this out to you, I will further convince some people that the companies listed under "scam" on the left are all fake. They are scams, liers, dangerous.

Please don't waste your money.,

And if you DO choose to waste your money, please don't give these preparations to anyone who is sick.

I Shouldn't Know..

...that Caster Semenya may (or may not) have male sexual organs internally.

As Ms Semenya and I are not related, in a relationship, and I am not on her medical team; I have absolutely no need or right to know her medical details.

And it is none of my business whatsoever.

I should not be bombarded with medical details about her internal organs -details either real, rumored or  speculated- when I switch on my telly or open my e-mail. 

I just shouldn't know anything at all about her medical condition unless she says it is OK.

Period.

That I even know there has been speculation is wrong, wrong, WRONG.

It is a huge invasion of her privacy. Invasion on -quite literally- a global scale. And whichever persons at the IAAF and other organizations who are responsible for (grossly mis-)managing this debacle and leaking information should be made an example and jailed for a long time.

I'm serious.

A person's gender is probably the most deeply-held aspect of their identity. More than their name or their immediate family, a person's perceived gender is a huge key to who they are. And indeed to how the world interacts with them. Ask anyone with a gender identity disorder, or indeed anyone who cross-dresses for work or play, and they will tell you that they feel, act, walk, talk and are treated very differently depending on which gender they are projecting at a given time.

And if you speak to any transexual or cross-gender person who has had to deal with being "outed" in public, you will understand that many people out in the world -especially men, have a very, very, very difficult time comprehending and dealing with ambiguous gender.  In fact, many men seem to feel threatened and will respond with hatred and violence. I have seen this reaction firsthand: When I was younger, a couple of my friends were tranvestites (i.e. a person who dresses the the clothes of the opposite sex. Two of my friends were men who dressed as women. One was actually pre-op transsexual). I saw how men could switch from sexual interest in my friends to outright screaming hostility (maybe feeling that their own gender was somehow threatened?) in the blink of an eye. It was quite scary to witness.

I can't imagine what it would be like to live.

I believe that the very poor handling of Ms Semenya's case may actually put her life in danger. Some people have speculated that news like this may put her in danger of deep depression and of taking her own life. And while I see their point, I somehow doubt she would off herself. She seems too centered for that. 

I feel the greater threat to her life may come from third parties; from people who feel they were somehow deceived or cheated by Ms Semenya simply being who she is and doing what she was obviously born to do. This threat is larger, more diffuse and much more difficult to defend against.

And even worse: she comes from South Africa, from a place where people are often considered cursed or "bad luck" because they are different. A place where Albinos face discrimination and marginalization. And now Ms Semenya -who is only 18- has this great big DIFFERENCE" question mark over her head. And even if time proves this to be a big red herring, you can't un-ring the bell on this stuff. She will forever have to prove herself. As she now a high-profile person with a potentially rare difference,  who lives on a continent where albinos and some others with differences are killed and their body parts sold for superstisious reasons, can the IAAF, who originally started this whole mess, now guarantee her safety?

No. I thought not. Like I said, Someone should be locked up for this.

Elizabeth at Screw Bronze wrote about the Semenya case recently, making the point that male athletes are not subjected to the kind of degrading scrutiny of their gender as females are. And she is right.

But rather than focus on the inequities of gender (which are rampant). I feel that really this case is about medical privacy.  Here in the US. a person's medical records are protected by law. By law, a person has a right to their own medical file. Doctors are not allowed -by LAW, to share a patient's medical details with anyone unless the patient OKs it first. I think there are fuzzy areas with minors and people who are not capable of giving consent -say if they are in a coma. But overall, the rules are pretty clear. And Ms Semenya is neither a minor nor in a coma. She is perfectly able to assign or withdraw consent to share her medical history.

But was consent sought and given?  I seriously doubt it.

I don't know much about medical laws in other countries -or indeed about international athletics. But I know right from wrong.

..and this is all wrong.

Wrong in so many ways and on so may levels that I can barely comprehend the wrongness of it all. In fact. I think we may need a whole new scale to measure "wrong" based on this incident.

In the end it boils down to this: I know too much about a South African stranger. I should NEVER know about a person's  sexual organs unless that person says it's OK for me to know. 

And Caster Semenya didn't give me permission to know.

That's the bottom line.

Something Smells Fishy

I was rummaging through the medicine cupboard (outgrew a 'cabinet' long ago!) and a pack of Zicam nasal swabs fell down and hit me on the head.

 

Oops! thought I to meself. I forgot this was here. I need to throw it out.

But before I did, I decided to check on the current status. Has Zicam actually been recalled yet?  Because the last time I checked (which was some months ago), people were complaining that Zicam had caused them to lose their sense of smell, and the manufacturer of Zicam, Matrixx Initiatives, was pushing back pretty hard, saying it was perfectly safe and the hundreds of complainants were all making it up.

Around that time, I got quite engrossed with the unearthing all the herbal remedy scams I had found and I stopped following the Zicam stuff. I actually forgot about it until one fell on my head.

(Hello, Mr Newton)

So it turns out, I had stopped following the story right before the FDA stepped in. Sometimes the FDA, being big and lumbersome, is a bit slow to respond.  Anyhoo, the FDA set a letter to Matrixx, telling them to cease manufacture of three products, and on the same day, they issued a consumer warning about the same three Zicam products. The following is only an excerpt:

On June 16, 2009, the Food and Drug Administration (FDA) warned consumers to stop using and discard three zinc-containing Zicam intranasal products. The products may cause a loss of sense of smell.

Intranasal products are administered through the nose.

What products are affected by this warning?
FDA's action affects Zicam’s three intranasal products that contain zinc. The three Zicam products claim to reduce the duration of the common cold and the severity of cold symptoms.

The products (listed with their size and product numbers) are

• Zicam Cold Remedy Nasal Gel (15mL, NDC 62750-003-10)
• Zicam Cold Remedy Swabs (20 swabs, NDC 67250-003-20)
• Zicam Cold Remedy Swabs, Kids Size (20 swabs, NDC 67250-003-21)...

...Why did FDA take action?
The agency has received more than 130 reports of anosmia—the loss of sense of smell—associated with use of these three Zicam products.

So yes, I should officially throw out that Zicam. And unlike my secret (and dwindling) stash of VIOXX, I actually will.

But I still had some questions about how Matrixx Initiatives have handled this whole incident and continue to handle it. They did not immediately recall the product when the complaints first started. Instead they waited until AFTER the FDA sent them a letter TELLING them to withdraw the product. And even then, they were protesting all the way!  See this story from US News, particularly their response to the writer's e-mail.

And on their website, in the Frequently Asked Questions page, there is this little gem (the question is "what research has Zicam done to show that its Cold Remedy nasal products do not cause loss of smell?")

The safety of Zicam Cold Remedy is substantiated with multiple studies:

(1)    An epidemiological study demonstrates that three of the most common conditions associated with anosmia are the common cold, sinusitis, and nasal injury.  This population study in 3.7 million patients demonstrated statistically significant associations between anosmia and numerous medical conditions and multiple classes of drugs.  These factors confound any attempt to attribute an association of anosmia with Zicam Cold Remedy zinc gluconate nasal gel.

(2)    Anatomic and behavioral data obtained in animal studies showed no detrimental effects on smell associated with single doses of Zicam intranasal zinc gluconate gel equivalent to between three and 6x the recommended dose for humans.  Even at doses up to 15x the recommended dose, little or no effect to detect odors was uncovered.

(3)    Human in vivo and cadaver studies using our dosage form and nasal pump delivery device confirmed that Zicam intranasal zinc gluconate gel does not reach the upper area of the nasal cavity where smell reception occurs.

(4)    Four peer-reviewed clinicals of intranasal zinc gluconate gel products showed no difference in olfactory function between the treated and placebo subsets.

...and another answer to an FAQ (in response to a "frequently" asked question about the "unpecedented" FDA action:

We believe it is unfair for any Federal agency to take the kind of precipitous action it took against the company in a situation like this.  Had it talked with us, we would have shared with this regulatory body the compelling data and information showing that Zicam Nasal Gel and Gel Swabs are not unsafe.

WHAT? 

As I brought it up already, let's look at the VIOXX recall in comparison to this one: Merck noted in their OWN data that there was a small chance that VIOXX caused heart problems, so it voluntarily recalled the product first, then told the FDA and everyone else. Even though this decision probably cost them billions of dollars, they did the right thing. I don't usually have much good to say about Big Pharma, but I have to hand it to Merck here. They realized there was a chance that  people were being hurt by the product, and they did the right thing. They put people and reputation before money. ..and yes, OK: They probably thought it might avert some lawsuits (It probably didn't. This is America, people).

Unfortunately, the FDA needs to rely on manufacturers to do the right thing. They have limited resources, so they can only audit every two years.  If a problem is noted right AFTER an FDA audit, there is two-year window before the FDA will find it (unless complaints direct from the public or medical community start flooding in). Therefore, the FDA needs to rely on the decency of the drug companies to report issues, because most people and doctors who find a problem with the drug will report it to the drug company first, and may not report it to anyone else. As I pointed out before, Many people -particularly consumers- don't know they can report directly to the FDA and many doctors won't bother -particularly as Zicam requires no prescription.

So, this is directly to Matrixx Initiatives about their whining: The FDA took this action because they had no choice. You were not only ignoring the complaints, you were trying to dispute them. The FDA had to step in to protect people (and children -there was a children's version on that list!) because you refused to.

And now you have the nerve to whine about it? 

Grow up!

But I'm not finished. Here is another little gem from Zicam's FAQ page. This in response to a question about consumer complaints being withheld from the FDA:

Matrixx has always cooperated fully with the FDA, willingly shared all information requested by the FDA, and fully complied with its understanding of the FDA’s regulations. Any reports to the contrary are simply not true. As required by FDA regulations, Matrixx has always maintained detailed records of all consumer complaints and followed up with them. In the past four years the FDA has conducted two audits of the company, most recently in May 2009. During each audit, Matrixx made available to the FDA all adverse event complaints received by the company, along with complaint trends. These included all consumer complaints alleging loss or diminishment of the sense of smell.

Let's read between the lines here, and remove some of the spin.

...and fully complied with its understanding of the FDA’s regulations

Translation: we didn't KNOW we had to report adverse reactions to the FDA (yeah, right)

As required by FDA regulations, Matrixx has always maintained detailed records of all consumer complaints and followed up with them.

...but not actually SHARED them with anyone, like other consumers or the FDA.

In the past four years the FDA has conducted two audits of the company, most recently in May 2009. During each audit, Matrixx made available to the FDA all adverse event complaints received by the company

OK that makes sense, the FDA audits biannually. The timing is very interesting here, don't you think? The FDA audits them in May '09, then issues the warning in June '09.  Why?  Because Matrixx didn't report the adverse complaints voluntarily, that's why. Instead, they waited for the FDA to go in there and find them.

Let's just imagine the scene:

FDA Guy:  "hey, Mr. Matrixx Executive, What's in this folder tucked in here at the back of the drawer?"

Matrixx Executive (breezily):  "Oh that's nothing.  Just some positive consumer feedback.  ...er.  Have you any plans for the weekend?"

FDA G.: "Well let's take a look." (starts to remove the folder and open it)

M. E.:  "No!" (starts to move towards the FDA guy, hand outstretched to take the folder, thinks better of it, stops and clasps hands awkwardly) ...it ...it's nothing really..."  (sees the FDA guys face) Oh. You mean THAT folder?  The red one? That's the complaints folder. I was just about to show it to you..."

FDA guy: (scanning the contents) "Some of these are pretty serious. Loss of smell? How come I have no record of these?"

M.E. "but we followed up with all of the customers. We're not supposed to tell you about this stuff, are we?   I thought that.. I mean, well... (claps hands, smiles, attempts lightheartedness; -fails) ...you know about it now!

...Hang on a tick. I need the bathroom..."

(Matrixx executive rushes from the room, looking ill. However, he heads towards the CEO's office, in the opposite direction of the bathroom)

(I should write for (bad) TV. My friend AM always said it.)

And so the FDA action was taken.

One might wonder why Matrixx were so reluctant to report this adverse data and recall the products. Well the answer is very easy: Money. Have a look at their stock price. 

June 15th: $19:24
June 16th: $05.78.

Note that the volume spiked hugely too, in what was obviously an enormous selloff.

If I take into account that MTXX now have about 9.46 million shares out there,  we can estimate that the company was devalued by approximately $127 million dollars in one day in the US alone. (there are at least two other listings on other exchanges, but I didn't check them. I am pretty confident the Matrixx stock price didn't rise anywhere in June).

That's $127,000,000.00.  Just in the US.

Ouch.

So unlike Merck, Matrixx put money before people or reputation.  But you know, I bet if they had done the right thing, they would have lost less money. In fact, as a former Wall Streeter, I can almost guarantee it.  believe it or not, the market does actually take notice of things like corporate responsibility.

Speaking of corporate responsibility: I noticed when researching the stock price stuff that there was a change in principal officer. Great!  I thought They are cleaning house. But no. Instead they are promoting the guy who was acting helmsman at the time of the FDA action, to official helmsman.

Nice.

I have now decided not only to throw out the nasal swabs. But I will also throw out the (not-recalled)  Zicam tablets I got for the kids, too.

I'd rather deal with a cold than use their product

P.S. I had to laugh: When spellchecking this piece, the spellchecker, which did not recognise "Zicam" as a word, kept suggesting "Scam" as the alternative! 

P.P.S. Matrixx have until Sept 15th to respond to a class-action lawsuit (the first?) Let's watch the stock price then, shall we? 

Just for a laugh...