One Sick Mother

Things I Thought I Knew. Part 2

I didn't exactly have a privileged childhood. Far from it. However, I did have a (single) father who loved me and raised his four girls to believe in themselves and not take shit from anyone. 

Good lessons.

And maybe because of him, or maybe it's an inbuilt ...thing.  Or the arrogance of youth. Either way: I grew into a young woman who didn't take crap from ANYONE. When you are twenty-something, with your own company, living in a nice place, driving a nice car and expecting significant return on hard work and ambitions, you really start to think you're invincible.

...until an enraged, six-foot man thunders towards  you in your own living room, fist raised, ready to strike your 98lb (at the time) self with all his weight and strength.

I had never thought I would be a victim of domestic  violence. I had always thought that if anyone raised their fist to me, I would simply reach for the nearest heavy object and smash in their skull. I thought I would take a stand; angry, screaming and fight. And even if I didn't win (unlikely, given my size), I would try bloody hard to do him as much damage as I could before he incapacitated me.   

Yes. I was a feisty wee thing.

But of course, when it actually happened, it didn't work out that way.  He came at me fast with fist raised and I reacted completey instinctually: I cowered; face covered, head down, waiting for the blow. 

The blow never came.  Instead, he checked himself and left the house, incandescent with rage, the tyres of his BMW  tearing up the gravel  driveway of our nice place, leaving me huddled on the floor by the window. 

I have never felt so betrayed in my entire life. I was shaking; shocked, horrified by what had just happened. The interesting thing is that I didn't feel too much shocked and betrayed by my then-partner. I felt betrayed by myself and shocked by my own reaction. Never in a million years, would I have predicted this:

I cowered.

I, who had once -as a skinny 13yo- faced down a snarling Rottweiler to retrieve a dropped purse, who had fearlessly handled German Shepherds and terriers alike (but not cocker spaniels. They mental).

I cowered

I, who had gotten between a violent person and their intended victim on more than one occasion, who had pulled a six-foot-something karate kicking man off an unconscious guy in Cork while a crowd of people had gathered and done nothing (regretted it when the guy regained conscioussness -he WAS a dick, I felt like knocking him back out meself!)

I cowered.

And I, there on the floor of the darkened living roon, with the moonlight creeping in, sat and faced a new and previously unimagined version of myself:

I, Coward.

 

 

Et tu, Tendons?

About five or six weeks ago, I performed an action, which I perform hundreds of times a day, and I got this excruciating pain across the front of my wrist, which radiated both directions, up my forearm and down my hand. I didn't yelp. I practically YOWLED. Unfortunately, both kids were present.

"Mom are you OK" 

"Yes, Love. It's just my hand"

"Did you pop a bone?" (don't you love the casual EDS shorthand we have in our house?)

"Actually... No." (I don't know what I had done. I just knew it wasn't a bone. And it hurt!)

My hand was hot, tender, very painful and virtually unusable for hours afterwards. Ever since then, certain movements can really, really  hurt. I knew it was soft tissue. The pain wasn't IN the joint, but around it and radiating from it. I thought maybe I had a bone out of place in my wrist, which was effecting ligaments or tendons.  I tried to fix it.  Unfortunately I was at the dinner table at the time. Grace said  (in exactly my tone of voice) "Do you HAVE to fix your bones at the dinner table? That's disgusting, Mom!"  (Ha!)

I kind-of hoped that maybe it would go away. Certain movements, like pincer grasp seemed to aggravate whatever-it-was, so I tried to avoid these and rest my dominant hand as much as possible (again: Ha!). 

Then one day I used a manual can opener and YOWCH!  I ended up on the kitchen floor, actually crying with pain.  From soft tissue!  Who knew?  So I decided enough was enough and called the Rheumy the next business day.  I finally got to see her this week.

I have tendonitis in my wrist. Thankfully, it is not De Quervain Syndrome (thank you, God!).

"Can I still knit?" 

"Does knitting make it worse?"

"No"

"Then you can still knit"

(oh good)

So I have a diagnosis and a treatment plan, which is good. However, I can't help thinking that here is more connective tissue that has let me down. First it was the ligaments, now tendons are complaining.

What's next?  Will my cartilage take out a work-to-rule (and WTF IS a work-to-rule anyway?)

But -Good news: I think I have finally found an application where Voltaren gel actually works! 

Happy days.  (or something) 

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.  

Random Yelping

I've been randomly yelping a lot recently.  Of course, my yelps are not actually random. They only appear so to the casual observer. Or anyone, really.  Because I can't predict when I am going to subluxate something in my hands, and the simplest movement can cause it to happen. Caught unawares, I yelp. Or utter some other cry of pain and distress; an "eep",  "yip" or sharp intake of breath. I try not to do it, but it is out before my thought processes have caught up with what has happened. And then I often have to try and placate a stranger in Target, Sears or BJs (but never Wal-Mart), who may have whipped around alarmed; assuring them I am OK, when it is probably quite plain that I am biting my the inside of my  lip in an attempt to hold back tears.

It is a weird thing, this: Most EDSer seem to have problems with fingers that dislocate or bend backwards. Wayward fingers can be helped by ring splints. My fingers are mostly fine however, the problem is deeper down, at the junction between the carpals and metacarpals

 

(good picture, eh? Here is the source)

One of them (at a time) just slips back for a split second and then goes in gain. The pain is very sharp and I yelp.   I can't predict when it might happen, so prevention is tricky. I take as many precautions as I can: I push carts with my forearms, I carry things on my shoulders where possible, I avoid lifting and maneuvering heavy things, where possible. But it can happen just washing a cup, opening a door or driving. Or typing!  I did it just now!

I am not sure if any of my EDS readers have this problem, and if so, what did they do that helped? I was wondering if hand strengthening exercises would help or exacerbate the problem?

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.

 

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...

Resisting Urges

We've all had to resist urges in our lives: That urge to blurt out something funny but inappropriate (although I personally have probably failed to resist this urge more than I have succeeded. I blame ADHD). The urge to just drop everything and take a plane to somewhere sunny; the urge to push everyone out of the way and jump to the front of the line. The urge to tell your mother-in-law just where she can put her cat plates. The urge to beat your daughter's orthodontist to a bloody pulp with your cane.

Oh. You've never had that last one?  That must just be me. 

...yesterday.

As I mentioned before, Grace irretrievable lost her palate expander while we were in DC. I thought they would just make a new one from the old mold, but as several months have passed, they decided to re-cast her mouth and make a totally new one.

She went yesterday to have it fitted. She immediately complained that it hurt, so the orthodontist loosened it. She still said that it hurt, and they were having trouble getting it to fit. Finally, he asked her to point to where the problem lay? She pointed at the very top of her palate. The unit was too high and was digging painfully into the roof of her mouth. The guy basically said that he couldn't adjust that part, but she would "get used to it". I saw Grace's hands go to her eyes in a gesture that is characteristic for her: one in which she quite literally tries to hold back tears (I figure she read that expression in a book and this is her Aspie implementation). 

Time to get into mamabear mode:

"You know, I have seen her dislocate a hip and not cry. So if she says it hurts, she isn't being a drama queen. It hurts." Their attitude changed at once and the expander was removed.  The assistant said something like "That is good to know, because my daughter is the opposite and will cry at anything". And we had a little discussion about which was worse (we both agreed that "drama queen" is worse, although you usually can pick out a cry of real pain instantly).

In an attempt to troubleshoot (which used to be my profession), I asked the orthodontist to check if he had received the correct unit? I know these things are custom made. I wondered if maybe there had been some mixup and we had mistakenly gotten an expander that had been cast for someone else? He didn't check. He just shook his head and said it was the right one. OK maybe he had checked already (but he could have told me that). I mentioned that the expander did look much "taller" (and a completely different shape) than the old one, but as we didn't have the old one for comparison, it was just my word, which apparently accounted for very little

Then he got out the dental power tool and tried shaving some stuff off the top of the expander. But there was not much to work with, so it didn't help.  Finally he admitted defeat and said they would make a new one.

"So you are going to re-cast her mouth?"

"What (as if this was an alien concept)?"

"Well, I can't help but think if a new unit is made from the same mold, that unit will have the same problem, right?"  He looked confused as the young assistant nodded vigorously.

So they re-cast her mouth.

And afterwards I took her to the smoothie place to get an overpriced smoothie as a reward for not punching the orthodontist (though I didn't phrase it like that).

I had one too.

Why I Care

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

Why is it so hard?

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

No-one.

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

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

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

Buy you don't happen speak or write Norwegian.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There are many, many more.

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

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

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

The really sad thing is this: 

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

Herbal Product Reviews: Scam

Much as I hate doing all the research and the drudgework that is involved in researching and documenting all the scam sites that I have been outing recently, I find it hard NOT to do it. I take a break for a day or to, decide to write about me  (Hello?  The blog is not called One Scam Outer) and then I start to wonder what other scams are out there that I have missed?  How many other people, just looking for relief for themselves or their loved ones are being tricked out of their money, which could doubtless go to better uses?  And these thoughts niggle at me. Unrelentingly. So last night, I sat myself down and decided to go searching for more scams. 

I decided to search for remedies for Peyronie's Disease. Now, I had no idea what Peyronie's disease entails. I just know that it seems to be covered on all of the scam sites and -unlike ...say, "Myasthenia Gravis"- I can spell it consistently without having to look it up.

Imagine my surprise while researching, I was suddenly presented with a picture of three erect penises, all in a row.  You don't usually get that when researching scams. Way-hey! thought I: Porn!  this thought was instantly followed by Shit!  Are the blinds down?  ...because my large-screen monitor directly faces a downstairs window (I don't want the neighbours to think that I surf porn. I mean, even if I do, I don't want them to think that I do. ...it's a suburban thing).  Then I noticed that it wasn't porn, but a medical site showing some pictures of a Peyronie's sufferer;  Before, During and After treatment. And the penny dropped. Apparently Peyronie's effects the penis.

Who knew?  Apart from an actual sufferer, that is.

...and I have to throw in a confession here:  I must say that I was somewhat intrigued by the Before picture of the bent and twisted willy. Because I couldn't help but wonder if that one might reach places that other willies might miss, you know?  And before you other women say "Ewe!!":  Admit it:  Most of you thought the same thing. I am just the one who will actually put it in writing. 

And then publish it on the Internet...

Then I read a bit more and I realized that Peyronie's can be painful for the man, so nix that idea. ...unless he was Very Naughty (evil laugh).

Anyhoo: back to the point (quick! before I lose me PG13 rating!): There was I, surfing porn the net, searching for scams, when I found this page

This site: with no person or company name, no phone number, no qualifications or references, except for a little story, told in the first person singular about being a ex-sufferer, having been a sufferer for years, and  doing all the research, gone through all the message-boards and quacks and now presenting "objectively" these four products.

If you read the blurb on each of the products (and those of you who regularly read OSM may instantly recognize just from the names that ALL the products named are scams), the language changes to the first person plural:  "I" and "my" suddenly becomes "we" and "our".

Hmmm.

And then there is the cute little tortoise (WTF does a tortoise have to do with Peyronie's ?  ...I mean,  positively speaking?), promising to show you the way through this "dessert".  All's I can say to that guy is keep your reptilian little paws off my key lime pie!

Having found that tortoise,  I figured there were probably more where he came from.

I was right.  All with the identical back-story, all with the same text; -except for the disease /product names and most pushing the "ical" first, then "ton" then "fax" and lastly either the "ex" or "tab" with a minor disclaimer pinned on the latter.  I haven't seen the "tin" products mentioned, but I think that is because they have been outed too many times as fraudulent.

Here is the list of dodgy "Product Peview" sites.

 

Condition	Site
Abdominal Adhesions	abdominaladhesionsproducts.com
Achalasia	achalasiaproducts.com
Actinic Keratosis	actinickeratosisproducts.com
Alopecia	alopecia-products.com
Atrial Fibrillation	atrialfibrillationproducts.com
Bell's Palsy	bellspalsyproducts.com
Bronchiectasis	bronchiectasisproducts.com
Cellulitis	cellulitisproducts.com
Delayed Ejaculation	delayedejaculationproducts.com
Emphysema	emphysema-products.com
Eye Bags	eyebagsproducts.com
Folliculitis	folliculitisproducts.com
Gastroparesis	Gastroparesisproduts.com
Granuloma Annulare	garanulomaproducts.com
Grave's Disease	gravesdiseaseproducts.com
Guillain-Barre Syndrome	gbs-products.com
Hand Tremors	handtremorsproducts.com
Hernias	herniasproducts.com
Hidradenitis	hidradenitissuppurativaproducts.com
Hyperhidrosis	hyperhidrosisproducts.com
Keratosis	keratosisproducts.com
Lipoma	lipomaproducts.com
Melasma	melasmaproducts.com
Motor neuron Disease	mndproducts.com
Narcolepsy	narcolepsyproducts.com
Peyronie's Disease	peyroniesproducts.com
Vocal Cord Nodules	vcnproducts.com
Waldenstrom's Macroglobulinemia	wmg-products.com

 

I checked the registration for some of the sites, and all came back (surprise!) to the same name and address:

   Herbal Reviews
   115 Abercorn Street, M0013
   Paisley, Scotland PA3 4AT
   United Kingdom

I really wish I could find my original notes regarding Syrotab, which were taken in 2006, because I am pretty sure that they were originally run from an address in Paisley (curious to see if it was the same address as noted above), before "moving" to Oslo.  I remember because Himself has a degree in Scottish business law (which I think he used precisely that one time) and I remember grilling him about them at the time.

Of course, I have a strong feeling that the real people behind this site are the same people behind SPAH and I am petty sure behind most of the other "herbal treatment"-themed organized scam sites out there: MAK International, one of whose core product offerings is a comparison shopping engine.

From their site:

Comparison shopping engines is perhaps the most targeted form of advertising possible for a website that intends to sell products. Nearly anyone visiting a comparison shopping engine is looking to purchase something. The way these engines work is by providing a product feed in a standard format as required by the comparison engine. Most engines accept a variety of feed forms like excel sheets, csv files and xml structured information. The standard information required for each product is the product price, a unique product number, product image and a short product description. This information needs to be constantly kept updated and should match exactly what is presented on your website.

 

When a potential customer goes to comaprison shopping site and searches for the product he or she is looking for the products that appear on the top get the highest number of clicks. The way the results are ranked varies from engine to engine. Some engines rank those products higher that pay more for the click, others sort the results by price and some by the relevancy of the product to the search key term. The last approach is particularly applicable to froogle, google's fast growing comparison shopping engine.

So really, their business has little to do with "treatments" and more to do with "clicks".

I sincerely hope that my outing of their scams is not furthering their business...